Journey to Babeland

Sarah Smile

2010-01-30T16:21:00.001-05:00

Today is Sarahs 2 year anniversary that she went home. I miss her dearly!
Have a glass of wine waiting for me my LOVE of my LIfe.

New Years

2010-01-03T15:14:00.002-05:00

Happy New Years to all of Sarahs friends. You are all in my thoughts and prayers daily!
Lorraine

Sarah's final Journey

2008-01-30T22:03:00.002-05:00

Sarah passed away today. I was by her side the entire day holding her hand. She went peacefully with no pain and me caressing her head. I will miss her so much.
Thank you all for being her friend and loving her.

Update on Sarahs health

2008-01-27T21:54:00.000-05:00

It is with much sadness that I inform you that Sarah has been in the hospital since Tuesday. She has steadly declined and is currently on life support. Sarah was the love of my life, my strength and my best friend and I will miss her dearly.
Please keep her in your thoughts and prayers.

Lorraine

Lifewithoutaspacebarishard!

2007-07-19T01:33:00.000-04:00

Well! WOW, it's difficult to write without a spacebar! My notebook's spacebar broke (and then there were some connection problems) so I've had trouble getting in an update -- sorry!

The truth is also that I spoke too soon about the dosage reduction making life so much easier. I'm exhausted so for the time being I'm just going to share here an update I gave to a dear friend:

I'm just really having a hard time with this chemo, unfortunately. It turns out that it's a little bit better with the decreased dosage but just a little. I've still got some significant physical difficulty for about 12 of the 14 days between cycles. (One treatment = one cycle.) The biggest complaints are debilitating fatigue, debilitating headache, and debilitating constipation/crazy bowel issues. Once in a while there's a little projectile vomiting thrown in for excitement, but the accompanying diminished appetite is actually yielding happy results on the scale!

Isn't this a happy response? I just like you too much and feel like you're too much of a friend to put on my breezy, "I can handle it!" voice, so you're ending up with an earful. (Or eyeful, as it were.) The truth is that Lorraine and I are really worried about this chemo regimen, because neither of us can imagine it being sustainable over the longterm. I kept hearing how "well tolerated" it was, but that has just not been my experience. I don't have enough energy to even do laundry or play with my dogs, my head hurts so much we have to speak in hushed tones and I have to stay in bed, and my stomach is always cramping or in a state of flux and great crisis. I haven't lost any hair yet, so that's a great relief, as it could have thinned! We'll talk to my onc this Friday (I see him before each treatment, which is an absolute pleasure, as we adore him and trust him completely.)

Emotionally, we're both quite fragile. Of course, it weighs on everything, and there's never any escaping the reality of it. It's just so heavy. And THERE. I can only assume -- and hope to God -- that it gets easier. Lorraine is absolutely amazing, but she's in such pain. We both are.

I'll post more soon, I promise.

And there was much rejoicing!

2007-07-09T11:13:00.000-04:00

Well, friends, I am THRILLED to report that the small reduction in Gemzar dosage --from twelve hundred something thingamajigs per metric squared something to a thousand something thingamajigs per metric squared something -- has made an ENORMOUS difference in my well being!

I had treatment on Friday. Friday night was ok, Saturday was pretty good also until the evening, when a headache hit and also a mild feeling of having the flu. On Saturday I gave myself a Neupogen shot, so Sunday morning brought back, hip, and thigh pain (it's normal; the purpose of the shots is to put your bone marrow into hyper-production of white blood cells, causing the marrow to expand, which is temporarily painful. Some folks experience pain with these growth stimulators more than others, and I just happen to fall into the hit-by-a-truck category. C'est la vie.) Sunday I felt worse, with increased headache and jaw pain, nausea, mouth pain and fatigue, but still pushed myself to be up and active all day, and probably overdid it because I really fell out in the afternoon. This morning, Monday, I've got all of the aforementioned complaints -- as well as a RAGING headache -- but I'm truly NOT complaining! I'd say I'm faring, overall, about 75% better than I was during the last cycle. That's huge! I was out of commission for 10 days on that one! Lorraine is ecstatic. She missed me last time! (I was getting out of bed around 7:00 p.m.)

The constipation is under control this time -- still an issue, but nowhere NEAR the problem it was last time. I'd say the headache, jaw pain and body aches are the worst. But seriously: SO much better than Round One.

Sorry to go through the whole litany of bodily experiences, but I record them all here, as I've done since the beginning, in the hopes that my experience can be of some benefit to someone else down the road. I know that when I first entered into what would become a sort of cancer career, I was so eager to read of others' personal experiences with treatment, and there was a real dearth of Hodgkins blogs back then. (Now there are many more.) As I've entered into new treatments I've found so little personal info online, I've vowed to share my experiences here. Interestingly, I share MUCH more information here than I do with my closest friends!

In other news, Lorraine and I have entered into a new weight loss period......of which my part will be shared here! Holy mother of GAWD it will be good to talk about something besides freakin' cancer!! Hello, Weight Loss Blog, my old friend! I missed you so! As some of you may know -- or read in my blog header -- this thing started, back in the day (2004,) as a weight loss blog, back when I was busting my ass to lose weight instead of beat (or live with) cancer. I lost about 80 pounds in 8 months by watching what I ate and exercising. (The loss was not related to my lymphoma; nothing sudden or drastic, just a steady rate of loss which actually slowed towards the end, as my cancer was progressing.) I'm currently about 20 pounds over my ending weight of that time, and I intend to do it again like I did it last time. Stay tuned.

#2 postponed

2007-07-05T11:39:00.000-04:00

Tuesday's chemo was postponed because my counts were too low, so I got a reprieve! It really was a break because it allowed me to enjoy the 4th with some great friends. The low counts made me feel pretty punky, but I still felt better than I had in a couple of weeks. On Tuesday Lorraine and I met with my doc to review how the first treatment had gone, as he'd been out of town, and he was pretty struck by the severity of my response to Round One. We were in agreement that this regimen shouldn't keep me in bed for 10 out of the 14 days between treatments. (Gee, you think?)

He said that normally he'd keep the dose high for the first month or two to do as much damage as possible right out of the gate, but that because of how low my counts went and how badly I reacted, he's going to lower the dosage now, beginning with tomorrow's treatment.

Going forward, my treatments will be on Fridays, and I'll give myself Neupogen shots on every other day for the first five days after each treatment to keep my white blood counts up at a safe level. I sure don't enjoy giving myself shots in my stomach and don't exactly relish the prospect of doing that for the rest of my life, but at the same time I'm very thankful that the shots exist and will allow me to continue to receive my treatment uninterrupted.

As for my spirits, well, they're going to get better with some medicinal support. We're doubling my Wellbutrin dosage to meet the "heavier load" of my terminal status. I'm definitely depressed, so hopefully this will help. I still haven't seen my therapist (Hi, Ali!) in private yet, but Lorraine and I have both benefited from a few talks we've had with her. Maybe the Wellbutrin will warm the waters into which I'll dive whenever we do talk.

In the meantime, I'm really enjoying some canine therapy -- not only my own two, but also a neighbor's big, drooly hound as well. There's not a lot that's better than puppy kisses for making everything right in the world, is there?

Gemzar and Navelbine kicked my ass!

2007-06-29T20:48:00.000-04:00

Alright, I'm going to go with the theory that the Gemzar and Navelbine had to shock my system in order to effectively do their intended work on putting to sleep the Evil Inside Me. Either that, or they're just heinous drugs that are unsustainable over the long term. But we're not going to go there. I'm sticking with the first theory and am working very hard to mold my mind into a welcoming, receptive shape going into this Tuesday's second treatment. But let me back up.

I had the first one a coupla Tuesday's ago, and it passed pretty uneventfully. The actual infusion was about an hour, but if you've ever spent any time in an infusion ward -- and I sincerely hope you haven't and won't -- you'll know that one hour becomes many, many more. Anyway. Lorraine was with me, making me laugh -- God, I love her -- and when we went to grab a bite to eat back at a restaurant near home, I got hit with uncontrollable shakes and shivering -- no fever. Teeth chattering audibly, hands and body shaking in just this crazy way -- in 98 degrees! It lasted about an hour and a half, until I was bundled up beneath a bunch of blankets in bed.

The headaches hit that night. Blinding, leveling headaches. Not migraines, just really bad headaches. Duane mentioned that he'd had "debilitating" headaches after his first treatment but not thereafter, so I'm hoping that will be my experience also, as those headaches put me out of commission pretty much through the end of the week. I think they were exacerbated by the extreme dizziness I get when I'm constipated -- a biproduct of my stem cell transplant. Constipation is a biggie with this regimen, and I found myself in the dreaded laxative/stool softener catch-up mode despite my best efforts to be proactive going into treatment.

Loss of appetite was another biggie, so I sort of stopped eating....and when I went back in to get my bloodwork checked a week later, I was 13 pounds lighter! (Actually, 15 now!) How's THAT for a weight loss plan? I jest. (And inwardly rejoice.)

We also found that next Tuesday that my blood pressure was 140/110 -- so they detained me and gave me morphine to address my headache and stomach pain. They threatened to keep me overnight, but the morphine got it down below 100 so they let me go. Turns out Gemzar has a less common side effect of high blood pressure, so now it seems I'll have to go on some sort of blood pressure medication to manage it for as long as I'm on this regimen. That sucks, because I never had a blood pressure problem before and was happy about it.

Like I said, the constipation was an issue, so when I finally did go (with the violent assistance of the magical and effective Sorbitol) I strained quite a bit, and now have done some internal harm to my heretofore nicely healed 10" incision from my open abdominal biopsy. The outside's fine, it's the inside that I've hurt, and the surgeon's office says that I'll just have to not strain anymore and let it reheal for a few weeks. Fabulous! It's very, very painful, and feels like I've got a fresh wound. And here am I with a big fat supply of oxycodone, percocet, and morphine -- yes, I have morphine! -- and I'm afraid to take any of them because they all cause constipation. Ah, the tangled rat in a maze that is the life of a constipated cancer patient.

On a more serious note, I'm trying to massage my mind into some sort of positive resolve around this treatment. I said about it elsewhere:

This first one was just really, really hard, and I can only hope that it was just this first one. I can't live like this for any sustained period. I was talking to someone about it today, and she was telling me that I've adapted to all of these chemo regimens in my cancer career, and that I'll figure this one out too. That's sure as heck my plan. The difference, I pointed out to her, between this one and the others is that this one has no end goal. I went into both ABVD and my SCT stuff with this mentality of, "OK, this is a means to an end; you suck it up, you make the best of it, and you do your time. This is the cost of a cure, so it's worth it." I could also give you an end date on each experience. This time, there is no end date, and there will not be a cure. So it's a really different ballgame, one which will require that I develop different coping skills and improve my emotional resilience.

The pic above is of our newest family member, Sergio. We adopted him from a rescue org in January, and just adore him. He's a pretty neurotic little freak, but then that just really adds to his appeal. Oh, and he's definitely my dog, which is nice since he's warm and soft and makes me feel indispensible and godlike even when I'm feeling all pukey and wobbly.

Palliative Care

2007-06-20T11:26:00.000-04:00

So much has been going on that the prospect of updating here was overwhelming, but I'm determined to get caught up so I can get back to posting smaller, regular updates going forward! The high points of this post: the open abdominal biopsy came back positive for Hodgkins Lymphoma, I've started maintenance chemo, and I got a tattoo!

That tattoo you see above and below is MINE! I just got it! I designed it myself with some important aspects in mind. Now that I know that I'll never again work in a corporate environment, I figured what the hell? The angel wings are meant to give me a feeling of being enfolded and lifted up, elevated out of the moment and carried up to another place. They're also meant to be MY wings, to give me a place to go to in my mind where I can feel like I'm flying and am strong and powerful up high above everything where I can only hear the sound of my own mighty wings. The green leaves are part of my "happy place" -- you know, that happy place you go to in your mind's eye when you need to escape your present reality. (My happy place is truly beautiful and multisensory, and it has helped me so much during some of the harder moments throughout my journey.) Anyway, my happy place includes lying on my back in lush, fragrant grass looking up at rustling tree bows whose green, green leaves cross over one another and the blue sky peeps through along with dappled sunlight. (There's a lot more, but I'll spare you every agonizing detail. ) The word, "Grace" is meant to encompass so much; not just the way in which I hope to travel through the remainder of my days, but also to serve as a reminder to appreciate all the gifts we receive in this life and to savor every moment -- for each one is a gift.

In other news, I started my new chemo regimen yesterday. I'll return to that topic in a minute, but first I wanted to say that I did end up getting the invasive abdominal biopsy. They tried to do it laparascopically, but once they were in there they realized that it would not be possible; apparently my intestines are larger sized, and that, combined with the fact that the node they wanted was right next to a major artery and completely surrounded by organs prohibited doing the biopsy the easy way. So they cut me open, did what they needed to do, and kept me in the hospital for a few days. I now have 4 new scars on my stomach, one of them 10" long! They told me there would be a 6-week recovery time, and I think that really will be the case because it still hurts, surprisingly.

A cure is not an option for me at this point, so the purpose of this new chemo regimen, Gemzar/Navelbine, is to, for the time being, get me back into a temporary remission for as long as possible. The Gemzar and Navelbine (I'm getting them without the Doxil discussed in that link) won't secure me a forever cure, but I'm really hoping it can buy me at least a couple of years without negatively affecting my quality of life. Ah, the "how much time have I got, doc" question: The least I've got is a year, and the most is probably 4-5, unless something else comes out that is (1) effective and (2) available to me. So we'll see.

I got my first treatment yesterday, and I'll get it bi-weekly for as long as it's working. I'll get scanned in 2 months to see if I'm responding. Then, provided everything's still going well, I'll get a little break -- maybe a month? -- in the fall before going back on it again. So far I feel nauseous and really tired. Yesterday, right after treatment, I got a serious case of crazy shakes from feeling freezing when it was 78 degrees...but no fever. There's also a headache that won't quit, and a general feeling of being hungover. Constipation is rearing its ugly head, also. I've got some pill or another to address all of those issues but the fatigue...and that's what beds are for! There's a small chance I could lose some or all of my hair on this, but it's small. I really will be devastated if that ends up being the case, so I'm trying to just think positively and expect a positive outcome on all fronts.

Emotionally, Lorraine and I are pretty messed up. It hurts so much to think of her being left behind, and I can't believe I'm actually going to die from this cancer. I don't want to die -- I thought we'd grow old together, she and I, and that I'd still get to see and do so much more in my life. There's just so much....it's too much to put down here, it's just too much.

Anyway, I'm trying to focus on savoring all my remaining days and moments while acknowledging that this is just really hard.

Looks like it's back

2007-05-12T12:10:00.000-04:00

It's been a while since I updated. The latest is that the cancer seems to have returned. My 3-month post-SCT scans showed several nodes in my abdomen, and my onc assured me they were probably just inflammation. Then the 6-month scans showed that they'd doubled in size and increased in number and lit up the PET with the same degree of intensity. The area they really want to get to is surrounded by organs, so my oncologist wanted to spare me an invasive and painful surgical biopsy if possible, so we took a shot at a needle biopsy, notorious for yielding inconclusive results for Hodgkins Disease. Sure enough, the tissue they got after 9 "passes" (attempts -- the needle had to go through organs to get to the node and the surgeon really did hit the node -- I saw it on the CT scan in the doc's office) was what they call "nondiagnostic," meaning it couldn't yield a diagnosis either way. So I'm moving forward with the surgical biopsy, and I'll meet with the surgeon this Friday. He's going to see if he can perform it laparascopically, with a laser and a scalpel. If not, he'll go through my back, cutting a foot-long incision through back muscle and then he'll move my organs to get to one of the nodes to cut it out. I'd be in the hospital for 5-6 days and then recovery would be 4-6 weeks. We have to do it, though, to either confirm or deny the presence of the Hodge. If it is the Hodgkins, then my options are extremely limited and a cure is pretty much out of the question. I'd be looking at palliative care, just trying to keep the cancer's progression and side effects under control for as long as possible. I think I'd be looking at somewhere from one to four years.

Yesterday, Lorraine and I met with my onc to talk about where we are with things and also his recommended treatment plan if it is the hodge back again.

He showed us the scans on the computer and explained the particulars. I have 5 nodes in my abdomen, lots of spleen activity and what looks like the beginnings of liver involvement. There's one tiny node in my chest with minor uptake.

Bottom line, he's an optimist and still thinks there's an outside chance that it's inflammation, but finds it "highly unlikely" that it's not HD. If the surgical biopsy comes back positive for HD, I'll heal for a couple of weeks and then head right into chemo: Gemzar and Navelbine, delivered every 2 weeks for as long as the combo works. So, in the rosiest picture, the rest of my life I guess. We talked about an allo BMT but I have a significantly smaller chance of its curing me than my dying of GVHD-related illness. I knew already that it would be a real long shot --I have no contact with my one full-blooded sibling, who only has a 25% chance of being a match anyway. I just don't think it's worth it, and at this point I'm not interested in pursuing an allo transplant because it's got such a tiny chance of doing me any good. That said, my onc is going to be watching my response to the Gemzar/Navelbine, because if I'm nice and responsive, he'll find the allo prospect much more encouraging. Regardless, he's already begun the search for a 10/10 match in the donor database. If he comes up with a match, and if I respond well to the chemo, we'll revisit the conversation about an allo. At this point, however, I'm more motivated by maintaining some sort of quality of life for less time than chasing after some elusive cure at the expense of my daily well-being. And Lorraine and I are talking about how far I'm willing to let myself deteriorate before I pull my own plug, because I'm not willing to put either of us through the misery of a slow tumble down a slippery slope. When things start to head south I'm going to call it quits with a sense of purpose and dignity.

Obviously all of this is just really hard, and I'm trying to balance my compulsion to put a shiny, brave face on with my desire to just look up into the sky and weep. On a more positive note, I said to Lorraine in that meeting with my doctor that there is a gift of sorts in this; so many people die suddenly, with their lives yanked unexpectedly. Getting advance notice allows you time to say the things you wanted to say and do some of the things you wanted to do before you go, so you're given the gift of time even as you're losing it. You know?

I'm going to start to see a therapist weekly beginning next week, and I'm working on Lorraine to convince her to do the same. I want us both to have our own therapists for 1-on-1, and then to do some sessions together also. I didn't see anyone during ABVD or when I relapsed and had my transplant, but now that I'm facing my own death it might be time to get some support.

In other news, I adore my oncologist, and he seems sincerely upset by this unexpected turn of events. Again, I fall into the category of "Huh??? I didn't see that one coming with her." I always respond beautifully to treatment, but then it's short-lived. The first time I got 14 months out of it since I was in remission after 3 cycles of ABVD, then when it came back I got a nice remission going into the SCT, and now it seems it must have come back immediately after the transplant.

Lorraine and I keep protecting one another from our grief with brave faces and (mostly) hidden tears, but I think we both have this sort of "freshly punched" look. We're trying to hold onto the tiny glimmer of hope that the biopsy and "generalized inflammation" explanation offer, but we are doing the requisite emotional preparation that accompanies this kind of diagnosis.

I'll update again when I have more.

Simone's home! Scans disappointing.

2007-02-23T22:54:00.000-05:00

Simone is home!!! We got him back night before last, and I can't even begin to explain how relieved and happy I am! He did not find us, we found him. He was down the street from us, and a neighbor called with another "Simone Sighting," only this time we actually saw him! The poor guy was completely traumatized and tried to run away from us. He'd been lurking around where I'd been calling his name and walking around looking for him, a fact which bewildered me but the vet said was not uncommon when a cat is traumatized. We cornered him behind a grill under the plastic cover, and it ended up being a sort of violent capture, with him obviously terrified and peeing all over himself, Lorraine getting rather badly bitten, and me getting scratched. We spent the evening at Immediate Care and then I took him to the vet yesterday. He's a bit banged up (he had to get the last vestiges of a screwed up claw removed under anesthesia) and has been sneezing nonstop from having been out in the rain and sub-freezing temperatures. He was dehydrated, but that has passed. We're giving him antibiotics and painkillers. The poor sweetie has clearly been through the ringer and needs to reacclimate to our home. He's sleeping SO much (I'm sure to catch up) and he just wants to be on top of or next to me. He seems pretty freaked out and jumps at any sudden movements or loud or jarring noises.

What a gift to get him home! If we hadn't been relentless in our search, we wouldn't have gotten him back. He was separated from our home by construction and a big, barking, loose dog....so I'm not sure he would have made it back. His nails were all almost down to the quick and shredded, so it looks like he was either trapped somewhere or maybe tried to climb our wooden fence to get back in. At any rate, my baby's back home!! He was gone for 7 days and it felt like a lifetime.

The scans: the latest is that the abdominal CT showed enlarged nodes in my abdomen. The thing is, those nodes (increased to about 1 cm to 1.5 cm) don't line up with the nodes of the CT portion of the PET/CT that lit up, nor does the PET portion showing nodes line up with either CT. Wacky.

I spoke to my beloved onc a little while ago, and he doesn't think this is cancer. I agree with him but of course am still a bit freaked out and would have preferred to get good news instead. He believes that it's inflammation and scarring from the transplant, and says that when inflammation is present after receiving intensive chemotherapy, it frequently presents in the abdomen. I don't have any B symptoms, and my disease at the time of relapse was present only around my clavicle, not anywhere in my abdomen. I asked about the high SUV of the PET (ranging 4.1 to a high 10.2) and he said that even at the 10.2 it could be caused by inflammation.

He gave me 3 options:

1. Get a CT-guided biopsy, but because of the location and depth of this node, they'd have to go through my liver, which would present risk.

2. Get the node surgically removed, involving cutting open my stomach and cutting/moving around my organs to get it out.

3. Wait until my already scheduled scans in April and see what they show.

I'm going with the third option. 2 months isn't going to cost me my life if it is cancer, and really the only thing I'll lose is sleep.

He said that he has another patient that experienced this same thing, only they did biopsy that guy's abdominal node and it showed only inflammation.

So I'm in watch and wait until April. It sure as hell would have been nice to get good news, but I'm just going to have to cling to the knowledge that ICE got me into remission going into my SCT and reduced my tumor by more than half, and that radiation reduced it by half again, so it's now down to about 1.5 cm, which is certainly scar tissue, since nothing at all lit up there. I am just going to have to continue to tell myself that this is residual inflammation. In a way, I wish we'd waited until the 6-month point before scanning at all -- hindsight being 20/20, that is.

Lorraine wants to know what we do if it IS cancer. I can't answer that. I can only concentrate on maintaining hope that it's not.

So there's my update! I have the gift of a returned Simone and a little uncertainty with my scans....but all in all I feel well and truly blessed. I know that the next scans will show that these recent funky scans result from inflammation and scarring. To think anything else is madness.

Unclean Scans and My Cat's Gone Missing!

2007-02-18T22:53:00.000-05:00

Hello all. On Friday I was supposed to get the results of my post-SCT scan. My oncologist moved up the appt. to Wednesday, Valentine's Day, and he delivered news that we weren't expecting. He does think I'm still in remission, but my PET/CT showed multiple nodes with an SUV of up to 10.5 in my abdomen. The PET slides don't line up with the CT slides in a situation the radiologists calls "misregistration." (That link refers to cardiac misregistration, but in my case it was in the abdomen. See, I had a regular CT of my neck, the site of my relapse. Then I had a full body PET/CT combo, and that's where the disconnect lies. Because of Classical Hodgkin's Disease's orderly and predictable progression from neck to abdomen, it seems unlikely that this is cancer, but we can't say I'm in remission until we see something to refute that scan. My onc thinks my abdomen is lighting up because of residual inflammation from my SCT, as that was the area that took the hardest hit. That really does make a lot more sense than having new cancer develop in a place it hadn't been before and skipping the normal steps of neck and chest before hitting abdomen. Oh well, the CT will tell more, because we will be able to compare the size of my nodes there to the previous scan, without trying to determine activity. So this Tuesday I'll have an abdominal CT, and if that gives continued cause for concern, then I'll have a biopsy of an abdominal node.

So we left trying to be positive about all of it, tried to enjoy a romantic meal for Valentine's Day, and when we got home we realized that my cat of 13 years (my original cat and the keeper of my heart) had somehow gotten out that morning and was missing. All of our animals are inside animals, and we are maniacal about the doors, but somehow that morning one of us messed up. Simone is ALWAYS intensely curious about the outdoors and has been a runner in the past, but never for more than say 10 yards before I got him back in and tried to scare the bejeezus out of him. We have a fenced yard, but we found one of our birdfeeders on the ground and the hook that it had been hanging from bent way down, so that's how he got over the 6 foot fence.

Anyway, we've been searching high and low in our development ever since. It's like looking for a needle in a haystack though, because there are at least 1,000 homes in neighborhoods all built around a very large and winding golf course....so if he crossed one hole, he could be in a completely different neighborhood very far from our house if he took to the streets. Also, 30% of the development is made up of trees and woods -- a fact we used to love. We've put up hundreds of fliers on mailboxes, we've borrowed golf carts daily and ridden the course (strategically) looking for him, and we've spent at least 10 hours a day driving around, walking around, entering homes under construction, and just calling and calling. Lorraine and I are both hoarse and exhausted, and I've been crying since Wednesday night. I swear, this is so much worse than either of my diagnoses, and I'd have another transplant in a MINUTE if I could just get him back. There have been a few sightings in areas quite far from one another, so we race to where they've said they've seen him and either it's another black cat or we can't find any cat at all. Overnight it's been about 15 degrees, and during the day it's in the 30's, so it's COLD! It is supposed to warm up to the 40's and maybe low 50's, so that's good news. I am just devastated; I've had Simone since he was a 12-week old kitten, he predates Lorraine by like 5 years, and he is my SON. I'm just heartbroken.

I guess the good news is that I'm so desperate over Simone that I haven't had time to worry about my uncertain remission and upcoming scan.

Please pray for my Simone, friends. I'm heartsick without him.

All things considered....

2007-01-28T14:00:00.000-05:00

All things considered.....I'm doing pretty well! Just wanted to give an update on how I'm doing, since it's been a while. Some of this update was posted over on the Hodgkins Message Board, but not all of it.

First of all, I'm very grateful that my transplant process has gone so smoothly -- I've had a bunch of extraneous stuff, but really, I think I've had a good ride compared to some so I'm very appreciative and counting my blessings.

It seems that I either have sinusitis and bronchitis or pneumonia. They're leaning towards the sinusitis/bronchitis combo platter, but didn't give me a chest x-ray because they say that since they'd treat them both the same, there's no reason to put me through even more radiation. So I'm on another antibiotic regimen, after having been given a different one for this same cough/wheeze/coughing-up-green-stuff that just never left after the beginning of December. I kept on taking Mucinex and just sort of figured it would take me longer to shake any bug I got and didn't really sweat it, but then when I started to get fevers I went in and this is the outcome. I'm really hoping the Z-pack works, because I'd like to be infection-free when I get my scans February 5th!

Then over the last couple of weeks, I'd developed a problem with water retention. Pretty! I was all puffy and my ankles and legs were shockingly enormous no matter how little sodium I consumed, how active/inactive I was, or how many water pills I took. Nothing seemed to affect it! I even had that crazy "pitting" in the legs! Blech. Turns out, when they did my blood cultures to check out the cough/wheeze/spitting-up-green-stuff thing, they saw that my albumin count was very low. (Apparently this is very common after transplant.) SO, if your albumin level is low AND you don't consume enough protein, you will retain water like nobody's business, and nothing will get rid of it but protein intake! Crazy! I never was a big meat-eater, chicken is skeeving me these days, and I haven't been cooking as much fish as I used to.....so I can see that there would be a protein/carbs imbalance in my diet. I just have SO little appetite for meat or chicken since the transplant. Conveniently, I'd just ordered and received some lovely protein powder from a great site I used to order it from, Protein Factory, so I started drinking some protein drinks and lo and behold.....the swelling is reduced! Not gone, but then I just started.

I was on a Mon/Wed/Fri antibiotic (with an intended 6 month duration) but because of all of my candida/yeast infection issues (see my last update or the "Chemo, the gift that keeps giving thread for more gruesome details) they're going to take me off oral antibiotics! My gyno says that as long as I'm on them I'll never get rid of it. So I'll go back to Emory monthly for an hour-long inhaler treatment instead! Pretty cool -- not only will I get in some good reading, but I get my vajayjay back! AND I won't have to taste the two disgusting medicines, since I have to take both the antibiotic and the anti-yeast medicine, diflucan, in liquid form. Blechhhhh and shudder. So nasty.

What else? Hmmm.... Energy: not so much. Stamina: nope, not really. These seemed to be improving, and I was getting in some cardio a few days a week, but lately I've just been completely knackered. I don't know if it's the sinusitis/bronchitis/pneumonia thing, or if the fatigue just comes in cycles, but I'm just a weak and tired girl these days. I only hope this improves sooner rather than later because I'm pretty tired of it. (Get it? "Tired of it?" See? Even my sense of humor is in a weakened and compromised state. It's very sad.)

My fingernails are starting to fall off. The nurse practioner tells me that I'll lose all of them and probably my toenails too, but that it's a fairly straightforward process. The nails die (as the hair follicles did) and then as the pre-transplant nails grow out and off, right behind them comes the new growth. Any feedback on this, fellow SCT'ers? The ones I'm losing have split right next to the cuticle, seem detached about a third of the way down the nailbed but then are attached closer to the fingertip, and are sore and sensitive to use. I'd love to hear others' experiences.

I gave a total hair/eyelashes/eyebrows update in my response earlier tonight to the "Delay in hair growth after SCT" thread, but here's another one: I'm still a baldy, but now have the tiniest bit of stubble. Interestingly, as soon as the first hair made an appearance, almost all of my eyelashes jumped ship all at once. I'd heard of this from someone else here, but it's definitely an intriguing phenomenon. I'd be interested to know why this happens! The eyebrows are sparse, but the eyelashes began to grow again after a couple of weeks and now I'm sporting a full set of stubbies, so it won't be long before I'm back up and batting! (Twinkle!) As for the head hair, it's much thinner on top than the bottom -- I have that same unfortunate doughnut male pattern baldness/Michael Bolton thing I had last go-round, so I'm going to let it grow a tiny bit more and then I'll shave it in the hopes that it will come back in on top thicker and more like real hair than baby fuzz. (A cute look but hard to pull off once you learn to walk, you know?)

My emotional state is alright. Not great, not awful, just pretty OK. I'm a bit depressed, but not horribly so. I mostly see the effects when I observe how I communicate with people.) I am normally a pretty bubbly and talkative girl, but I just don't seem to have it. I think it's more the lack of energy and reduction in social interaction than anything else, so I'm looking forward to steady improvement as my energy and stamina increase. In the meantime, I just need to remember to take my Wellbutrin! Some friends have really been there for me and others just really bailed after I got out of the hospital, but that's how you learn, right? C'est la vie.

I feel some anxiety about my upcoming scans, but not as much as Lorraine who, about every other day, says to me, "You can't die on me." How heartbreaking is that?? She's finding Xanax to be of great help in lieu of counseling, which is just NOT going to happen. I think we'll both feel better once we hear that I'm ok, that I'm still in remission. I definitely want to get a copy of the report, but I won't pick it up till after I get the news from my onc on the 16th. I want him to give me the news rather than reading it myself. Then, of course, I'll want all the detail he spared me!

I'm still peeling off the brown, discolored skin from the horrible skin issues I was having, but I'm in the final stages I think. Did I talk about the horrible skin issues before? This is what I said elsewhere:

I have had a yeast infection since my transplant (I had full body candida, so I had it at every single point on my body where skin touches skin -- in my belly button, my underarms, where thigh touches groin, behind my knees, between my buttocks, under my breasts, in the scar on my stomach, and on and on. It's been hell.) In my case it resulted from the massive antibiotics they had me on in the hospital and then to a lesser degre after. My gynecologist told me that as long as I'm on antibiotics, the best we can do is keep it down to a dull roar, so I've been looking forward to 6 more months of it as a result of the post-SCT antibiotic regimen they've got me on. Well, yesterday I had a doctor's appt. at which they opted to switch me off the oral antibiotics because of the yeasty hell I'm in! Instead I'm going to go in monthly for hour-long inhaler treatments that will apparently do the same thing for me without affecting my body's flora system!! I'm ecstatic. No treatment has worked, nothing I've tried.....nothing! Yay, yay, yay!!! I'm hoping the [girly parts] dryness goes away, but since I'm in menopause now, I'm trying not to get too hopeful.

I do still have the brown rectangle on my neck delineating my rads site. I'd rather I didn't have that, but I'm sure it will fade eventually, and I can always put on some sunless tanner in a couple of months if it still hasn't faded.

Mainly, I'm in the process of figuring out my limits. That seems to be a moving target! Some days I can really accomplish a lot, and then others I'll attempt to do the same amount and get so exhausted! Overdoing it takes MUCH longer to recover from also. But it's all a process, and I'm happy to have made the gains I have....and to be upright and with positive expectations of my upcoming scans! I take very little for granted these days but I do have high hopes.

I think that's pretty much it, health-wise, so I'll close here. Keep a kind thought and send those positive vibes on Feb 5th (scans) and 16th (results) ok, friends? The days between the scan and the results will be pretty torturous for both of us, so it's a good thing that at least Survivor will be starting a new season! Alright...so now we'll be distracted every Thursday from 8:00-9:00. That block of time is filled!

In other news, Sergio is settling in beautifully! We've had a very hectic week and a half, as first Lorraine's daughter (her ex's) was with us for a couple of days (love her!) and then we had some dear friends from Baltimore, Rick and Bob, come down for a week to do some preliminary stuff to the home near us that they've just bought! They even did a small drag show for me to cheer me up!! (Not normally their thing, so quite a gift!) They were HILARIOUS and I so appreciated all the thought they put into it, all with the purpose of making me smile.

Anyway, getting back to Sergio: we'd had him for less than a week when Christina came, and then the boys hit....and we now know that Serge doesn't really like the men so much. Who knows what he's experienced before....but these are two very nice guys who really made an effort to reach out to him and make him feel safe, and he just wouldn't have any of it. But with us, he's deliriously happy! Big snuggles under the covers every night, and lots of tummy rubs and stinky kisses. I say stinky because Mr. Serge definitely needs a dental, which he will get in February. Also coming up in February will be a visit to an orthopedic vet to check out the pin he had placed in his leg last August for a serious case of luxating patella. The poor sweetie walks on 3 legs the day after any time he runs around our back yard, and overall, he clearly favors it. So we're just going to get that checked out. I can't bear the thought of him silently suffering. He's very, very sweet, and he's making strides with Louie, who still doesn't love him but has gradually modified his definition of personal space. Under the covers he'll let Serge spoon him, but only for a little bit, and it does seem reluctantly. Apparently what happens under the covers STAYS under the covers, because when Serge tries it out in the open, Louie gives him the cold shoulder. But there's definitely progress, and both Lorraine and I are sure it's a good match. It will just take time. As soon as Lorraine tells me where the CD is for the digital camera software, I'll upload some pics and post them. He's a real beauty.

More soon!

Sergio!

2007-01-11T19:56:00.000-05:00

I'm going to write up a proper reply to Alan in my next post, but I did want to post a pic of the Italian Greyhound we're adopting on Saturday! His name is Sergio and he's 3-4 years old. The greyhound rescue woman got him from the humane society, where they told her that he'd been "mistreated" by his owner, who ran a pet shop. (She says that she sees no sign of abuse or mistreatment in his behavior.) He's very shy and needs a good bit of reassurance, but I'm sure he'll settle right in once he realizes that he's safe and loved. He's SO submissive he should be a good match for Louie, who's pretty submissive and passive himself. One of them will end up dominating the other to some degree probably, but the key is that they're pretty evenly matched in terms of energy level, temperament, and disposition. I'm so excited that Louie's going to have a friend!

Here he is with some of the big greyhounds at the greyhound rescue center. (He's the little guy on the bottom.) While he's crate-trained and pretty much housebroken (it's always a struggle with Italian Greyhounds,) it doesn't seem that he's been trained otherwise. He doesn't walk on a regular leash, only a harness, and he doesn't know "sit" so it's doubtful he knows other commands. I'll have a little work to do with him. He's just such a sweetheart, though, and smart too, so I am completely confident that with some steady love and some consistent one-on-one attention for the first time in his life, he'll just blossom. He may never be a totally at ease, happy-go-lucky fella in public or large groups, but I know we can help him to feel more confident and less fearful.

I'll post more pic's when we get him back home.

Sarah drags her sorry ass back in.....

2007-01-07T17:03:00.000-05:00

Hello, all! I apologize for my silence since getting out of the hospital. I know it's been just a crazy-long time since my last post, and I'm sorry for any worry and annoyance that I might have caused. I honestly do appreciate your caring and interest.

I've reached Day +65, and while I'm doing pretty well now, it's (predictably) been pretty damned hard, both physically and emotionally. My oncologist told me that it would be a start-and-stop practice of recovery at home, sort of a two steps forward/one steps back and then one step forward/two steps back sort of thing – and that's exactly how it's been.

For those that just want to get to my current state without all the gruesome details:

The long and the short of it is that I'm ok now. A lack of stamina and weakness continue and will for some months to come, my mental/cognitive functions are definitely diminished, and I've got some persistent yeast and dermatological issues that I'm told will dog me until I'm off the antibiotics that I'll be on for the next 5-6 months. No hair growth yet -- it takes much longer after the high dose chemo you get for a transplant than for normal chemo. (I got 10 months of chemo over 6 days.) But life has gone on, and I had a great Christmas with Lorraine and the furkids. It's good to be alive, to be honest.

That said, I'm much more tearful now, and I'm battling depression for some perverse reason. I say perverse because you'd think I'd just be grateful -- but I definitely feel grief and anger that my life has been turned upside down by this disease. I'm crying now as I type this. I haven't just neglected this blog, I've neglected my friends also -- I haven't kept up with my oldest, dearest friends, and I'm very quiet at home because I just really struggle with being my old cheerful self. I just don't have it. PTSD (post-traumatic stress disorder) is said to be quite common after a bone marrow transplant (and cancer treatment in general, to a lesser degree,) so maybe I've got some of that going on. I think I'll start with some anti-depressants and then maybe see about a therapist later on. Some people deal with anger afterwards -- I've got some of that, in addition to the sadness and sense of loss. When I talk about it, I speak in terms of gratitude and hope, and refer to the positive possibilities that lie ahead, but I don't know if that's just an old positive habit of mine kicking in. Maybe it’s a defense mechanism. I know that I do feel positive on one level, and then afraid and angry and sad on another altogether. The former is for public consumption, and the latter -- until writing about it here -- has been entirely private. People don't typically want to see or hear about the ugly emotional underbelly, so I've kept it to myself. “If you don't have something nice to say, don't say anything at all” -- and that left me with an ignored blog, and you with no updates at all.

But I am alive, and 2007 does bring hope and possibilities! I'm hoping to be able to return to work in the spring and I know that with time I'll just continue to feel better. Soon I should be getting approval for the Social Security Disability benefits I applied for last summer, so we'll get that desperately needed income at last, and I'm in the process of looking into food stamp benefits (which I definitely qualify for as well) so that ought to help also until I can go back to work. So things should steadily improve.

In other news, I’m back on the weight loss wagon! I’m doing about a half hour of cardio (a far cry from what I used to do, but it’s a start and I’m sure my heart and lungs are thanking me for it!) and I’m following the same plan I did to lose the big weight before. So far I’ve lost 4 ½ pounds. I’ll post more on this another day.

OH! We're going to be rescuing another Italian Greyhound adult male so Louie can have an iggy friend! He's just slightly younger than Louie – 3-4 years to Louie’s 5) and apparently very sweet and playful. He's fully recovered from leg surgery (they're prone to broken legs) and is ready for his forever home! We met him yesterday and he was adorable. He’d just been attacked by one of the new full-sized greyhound puppies at the rescue place, and had just gotten a few stitches in his back. So now we wait a couple of weeks to return with Louie to make sure they get along ok on first meeting, and we’ll take home this new guy! He’s purebred IG (Louie’s a mix but seems much more iggy) and he’s very, very wimpy. I think he needs some focused TLC to let him know he’s safe in a new home that doesn’t house another 16 dogs! His name is Sergio (Serge) and I don’t know if we’ll change it or not. We’ll see. For now I wish him good healing – and I can’t wait to see him again and bring him home! I really feel with his temperament and energy level he’ll be a great match with Louie, and he’s a big cuddler on the couch, so I anticipate some iggy-on-iggy LURVE once they relax in their friendship.

For those of you seeking to learn from my SCT experience – or otherwise just gluttons for punishment – I'll share more details on my post-SCT experience below:

When I got out, the biggies were weakness, an inability to eat (I ended up going like 3 weeks consuming nothing more than about 300 calories a day,) bowel/stomach problems, and a horrible case of full-body Candida resulting from the astronomical doses of antibiotics they gave me in the hospital. It totally wipes out your body's flora system, which for me, anyway, resulted in a pretty stubbornly yeasty existence that will continue to some degree or another until I get to stop taking antibiotics. A huge problem also was a gruesome case of "radiation recall" in the areas I had radiated (right front neck and upper chest and the same area on the rear side.) It was livid purple, with open, peeling, painful and raw open burns over the entire area -- so I had a straight line straight down the center of my neck (at least now I have visual verification that they DID manage to avoid radiating my esophagus!) Apparently our cells retain a memory of what has occurred to them, and the high dose chemo exacerbated the effects of the radiation to my skin. Poor Lorraine gets major points (as if she needs them!) for applying the cream to my raw, peeling back -- I was like an alligator shedding their skin and it was pretty disgusting. It's healed now, but still much darker in that area, so you see a brown rectangle representing my rads site.

I couldn't eat for a few weeks after getting out for a couple of reasons. First, my taste buds were totally shot -- things either tasted like crap or I couldn't taste them at all. Second -- and this was actually worse than the first reason -- I had this greasy film in my mouth, as if I'd just eaten a bunch of lard. SO disgusting! Anyway, it did pass....and I'm eating just fine now. I did lose 30 pounds though, from my transplant!

Two months out, still no sign of hair growth, and now over the last couple of days my eyelashes have opted to bail also. Not all, so far, but at least half – and I thought I’d been issued a reprieve!

One of the chemo drugs really darkened my skin, which I was told to expect. It has to peel off, and where I had/have the candida and have peeled, it's very light, so I have all these light patches over a dark landscape. It's not the end of the world and will eventually pass, but my reflection in the mirror definitely serves as a constant reminder that I've been through a war. Between the bald head, the radiation scars, and the discolored and patchy skin, I am definitely looking the part of the cancer survivor. It's hard. But this too shall pass, right?

So that's where I am! There are negatives and positives, and the process continues. I’m on the right road, though, and I’m pleased with my progress overall.

Happy New Year, everybody!

Day +13

2006-11-07T09:40:00.000-05:00

WBC - 3.7 (up 500 from previous day)
Platelets - 208 (up 66 from previous day)
ANC - waiting on segs/bands to calculate, but they'll be considerably higher than yesterday's high of 163,200 (will update here when known)
Hemoglobin - 10.9 (down 200 from previous day)
Hematocrit - 31.1 (down 700 from previous day)

Well, I made it through the night without a fever, I am indescribably happy to report. I should be able to get out of here TODAY!!! Lorraine's already left for work, and in the back of the car she'll have a jacket for me and suitcases into which we'll pack up my stuff! No matter how much you go in with, you always leave with more. (Thanks to the kindness of friends and strangers.) She did one little haul last night, taking all the books, games and DVDs, so that's out of the way.

This morning I'm just waiting for the pre-rounds meeting with the Registered Nurse, Ken, whom I love dearly, followed by the rounds at which will be attending the attending onc who manages the rounds, Dr. Flowers, Ken, 2-3 representatives of the pharmacy department, my nurse of the day, and sometimes an interning oncologist who has a sour face and a name I find utterly forgettable.

I can't believe I'm going to be able to see my beautiful Simone (gorgeous black male cat from heaven who's been inseparable from me for I think 11 years) and Louie (the most perfect puppy in the world.) I'm thrilled to death to be seeing Boo (the little, black, terrified, secret cat who literally only comes out of hiding for me) and Gracie (also terrified but still fully committed to fulfilling her role as House Diplomat.) And then of course I can't wait to see Bughead (out-of-her-freaking-mind but indescribably fun and loveable cat) and little Piccina (Italian for "little one" is the name of this scarily fearless, pain-in-the-butt pretty calico.)

Right now I'm having a lot of diarrhea-related pain, so I'm going to close here...but I'm looking forward to updating from home!!

Day +12 - Going Home Tomorrow???

2006-11-06T21:07:00.000-05:00

WBC - 3.2 (up 1,600 from previous day)
Platelets - 142 (up 65 from previous day)
ANC - 163,200 (up more than 162,000 from previous day)
Hemoglobin - 11.1 (up 1,900 from previous day)
Hematocrit - 31.8 (up 5,900 from previous day)

I might be going home tomorrow!!! I'm so well engrafted, they don't think I'm getting much benefit from being in the hospital any longer. The only remaining concern is the fact that I'm still almost daily getting a fever. They say that they're sure that these are "engraftment fevers" and not any result of infection -- and they have tested literally all potential sources of infection -- so I don't see why having one more little, short term spike would be a dealbreaker on my release.....but it still could be. We'll just have to see first how I get through the night, and then how much weight should be attributed to the fever should I get another one. Very nervewracking.

The other source of concern is the very ugly case of "radiation recall" I have now on my chest and back. I've lost a couple of layers of skin, so my skin looks at best like I've been badly sunburned, and at worst like raw hamburger. They've given me a cream, but I'm going to request a different one that another patient told me worked much better for her because this one isn't doing much of anything and it's given me no relief.

I'll find out tomorrow during the morning's rounds......say a prayer!!! I WANT TO GO HOME!!!!

Later on Day +11

2006-11-05T16:15:00.001-05:00

Quick post-rounds update: The attending onc who's on rounds now feels that we can shoot for getting me out of here somewhere around Wednesday/Thursday. Yay! They're phasing me off some of my stuff now, reducing the amount of fluids they're giving me and also cutting out a couple of the antibiotics. They'll watch my dependence on my PSA (morphine pump) and will be looking for reduced use. In order to get out of here, they're going to want to see that I can eat and drink adequately on my own, that pain and fevers are not an issue, and that my counts continue to rise so I can fight infection and all kinds of other good stuff.

The major hurtles now are the eating and drinking. They say that my mouth and throat are looking a little better, but I'm definitely still on an all liquid diet. Even oatmeal is too much for me now.....but not for long!! I predict that tomorrow I'll feel much better than today, and that an upward trend will just continue!

Man, I'm so excited! I am completely comfortable with a Wednesday/Thursday timeframe. I feel like I'll need that time to progress further, and that it will arrive before I know it!

Yay!

Day +11

2006-11-05T10:10:00.001-05:00

WBC - 1.6 (up 800 from previous day)
Platelets - 77 (up 34 from previous day)
Hemoglobin - 9.2 (down 600 from previous day)
Hematocrit - 25.9 (down 2 points from previous day)
ANC - 976 (they say this number can fluctuate up and down, but today it looks great, since 1000 is apparently the goal, and even 500 is a great number!)

Get a load of those white blood cells!!! Wooo hoooooo!! I've got a double or nothing bet on tomorrow's results which should make me poorer by 2 dollars and also absolutely joyous! I'm predicting 2.2 -- my night nurse, Mike, says 2.4. I would absolutely love to lose to him again! Today's nurse, Karen, whom I love, is going with a more aggressive 2.6. See why I love her?

Oohh! And there's something called a "Seg/Band" which is some sort of marker in the white blood cells which reflects the really important, best part of the white blood cells. Apparently you want this number to be high to get the best reflection of positive changes in the WBC, and I have a high number, apparently! There's a calculation which uses the seg numbers and the band numbers to calculate the absolute neutrophil count (ANC) which is very important in its reflection of new healthy cells. Segs + bands x total WBC = ANC. That's one way to combat chemo brain!

Now the red blood cells are not doing as well as the white, but that's ok. Angie, you asked me a couple of days ago if I'd been given any blood transfusions or platelets. I have not received any platelets (and I'm participating in a platelet study as well!) but 2 days ago I did get 2 bags of blood, as I did this morning also.

I'm happy to report that I didn't have any fevers last night! Now that is definitely a step in the right direction!

Still got the mouth/throat/head pain, so the PSA (morphine pump) is still a strong ally. I'm hoping that the hemoglobins I'll get from this morning's transfusion will increase the oxygen volume of my blood, thereby allowing my nice new white blood cells to rush to perform repair in my mouth and throat right away.

I'm going to take a nap now because I had an awful night's sleep last night. Then early this afternoon I'll get in some walking laps. With my counts going up I'm feeling much better able to get in some cardio.

I'm going to miss seeing Lorraine today, but she needs to take care of herself now and knock down that cold or flu! I'm so glad she's got a doctor's appointment tomorrow -- maybe she'll be able to get some medicinal support to speed it along before I come home. God, I can't wait to go home.....I miss everybody so much.....

Day +10

2006-11-04T20:10:00.001-05:00

WBC - .8 (up 400 from previous day)
Platelets - 43 (up 25 from previous day)

As you can see, my counts are now steadily climbing upward! I feel like a superhero! I'm really looking forward to another jump tomorrow -- I fully expect to be in the 1-somethings with my WBCs...and to some upcoming pain relief accompanying the increased counts as the cells rush first to where repair is most needed.

My abdominal pain has lessened but has not left the building, and my mouth and throat continue to worsen. I'm still running a fever most of the time, which doesn't bode well for an early release, but oh well. Of course I want to go home when they think it safest -- I was just hoping that could be sooner than later.

The "radiation recall" I had before has actually RETURNED! Now does that seem fair? So I have this bright, livid purple-red square which lines up with the outside of my esophagus front and back -- all the surface outside of that vertical line was radiated and is now raw, welty and itchy again. I'm told that it will remain a very dark brown block for at least a few months, until it eventually peels off as all skin does. It's not at all the same color as the other side of my throat and chest, so it's very obvious that some fairly harsh baking has occurred!

In weight loss news, my weight on the scale is holding at the same point it was a week ago (when I stopped eating altogether [again.]) I know that at this point, I must have lost a total of at least 20-25 pounds by the way my clothes are fitting and the feel of my own body. They're loading me up with hydration since I haven't been able to eat OR drink, and I'm just retaining that fluid quite nicely. I'm STARVING and experience so much pain when I try to eat or drink, it's just WONDERFUL to get a nice benefit from this misery! Gotta love the silver lining, no?

I've asked Lorraine to bring down the exercise bike from the bonus room (our home gym) so I don't have to tackle the stairs to get in a little pedaling. I'm really going to try to get in regular exercise (in tiny, gentle doses to begin with) right from the start, and I know that those stairs are going to be too much for me for a while. I seek to remove potential barriers/excuses, not add to them! I told her to ask a friend for some help getting it downstairs -- she doesn't think it's a good idea, so I'm going to have be a hard case about it because I feel very strongly about its benefit. Later on, we can move it back upstairs, but for now, I need it handy.

And on the follicular front, my little stubbies are falling out now. My eyelashes, too, I'm sad to say. Ah well, out with the old and in with the new!

I probably won't be able to see Lorraine tomorrow because she seems to be coming down with something. My nurse and I sent her home today because she kept complaining that her throat hurt her. She's also been sneezing a lot and feeling really run-down -- and she took a 2 1/2 hour nap in my arms this afternoon when I spooned her lovely in my hospital bed. (My nurse got more than a couple of giggles out of her snoring!) She has a doctor's appointment on Monday, so hopefully he'll clear her to come back to me on Monday! I can't stand losing a day with her....

Days +8 and +9

2006-11-03T11:05:00.000-05:00

Hello, all! I can't speak, but I can write fairly well, if a bit confusedly, I'm finding as I type and retype this. That morphine is quite something!

Great news right out of the gate is that my body has started to produce white blood cells, hematocrit cells, hemoglobin cells, and platelets! Go me!!! I've been getting high fevers at night (over 103 degrees) so they're not sure if those result from an infection or are just "engraftment fevers." They've changed my antibiotics again just to be sure. I'm told that if my counts continue to rise and the fevers abate, I'll get to go home before I'm fully engrafted. Conversely, if my counts dip down before rising again, or if the fevers continue, I'll have to stay in here longer, as they wouldn't want to release me if I were prone to fevers. Makes sense. Right now I'm just willing my body to cooperate and continue to just crank out those cells. At Emory, they don't count the cells when they are less than 300 (<300); once they fall that low, you just fall into a "bottomed out" category. My WBC this morning had risen to .4 -- great news! And, like I said, some other critical counts rose also, so I'm really happy! If this trend continues, I should see some relief to the now substantial pain in my mouth and throat, in addition to my abdomen. I really am looking forward to some relief soon, because this part is just so totally not fun!

Brian, you mentioned your having got Neupogen shots at some point after your transplant -- that isn't part of my protocol. I'm just going to have to bring them up on my own! I think I can; I think I can....

My slightly raised counts notwithstanding, I'm still hurting a lot, and am trying to sleep through the pain more often than not so the time passes more quickly. They think I'm going to start feeling better this weekend. I sure hope they're right.

In other news, I'm smiling again, if with a painful little wince each time! (Ouch!) I've been so good with my mouth care, and they know it; they say that for some people the mucositis is unavoidable, despite their best efforts, and the best you can hope for if you happen to be one of these people is to proactively reduce the severity of the mouth sores. (The esophageal and GI tract sores/ulcers will develop pretty much unhindered if they're going to, with little to do preventatively -- apart from that Kepivance drug which helps everybody but which I cannot take because of my esophageal strictures.)

That's it for now -- I have a pounding headache, so I'm going to try to catch a little shut-eye to see if that will help. I have the feeling of having bottomed out, but in the words of the attending onc, Dr. Flowers just now, that just may not be the case. Tomorrow will tell all. And here's hoping for no fevers -- engraftment-related or otherwise!

Days 5, 6, and 7

2006-11-01T15:38:00.000-05:00

Hi. Lorraine here posting for Sarah. The past few days have been hard for Sarah as she has had severe stomach pain due to the lining of her stomach and GI tract is sloughing off.
She is taking a good amount of Morphine to help with the pain and is sleeping through the rough part.
She has had a fever, mucositis and esophagitis, her blood pressure is up and down and she has dry heaves. All of this due to her blood counts have bottomed out.
Once the stem cells start to engraft they will go straight to where her body needs the most help, so hopefully her stomach will start to feel better.
The constipation is still there so she is taking scary laxitives.
Other than these aweful things she is fine but not so Sarah Smiley.
Hope all of you are doing great. Thanks for all your love and support we both appreciate it so much!

Lorraine

Day +4

2006-10-29T19:29:00.000-05:00

Day +4 is a day of morphine. I've graduated from oxycodone to morphine, although I'm not yet so bad off that a pump is required. At this point, if I feel like I need it, I ask for it and they bring it to me. I'm getting IV vitamins (although not the TPI, or bag-o-fat that they give when you've gone for a long time without eating.) I'm also getting IV antibiotics, as I can no longer get the pills down. The doc says that my pain is the result of losing my stomach lining, which brings to mind one of those scenes on "House" where they show all hell breaking loose inside some unsuspecting person's body.

I mentioned yesterday that I am getting comfort from a song called, "Time to Let You Go," by The Funky Lowlives. This song has become my personal transplant anthem, feeding me calm, strength, beauty and hope. I was flabbergasted and completely thrilled to find when I signed on today that the artist who wrote the song, Jon Whitehouse, had commented on my blog with well-wishes!! Further, he wrote this beautiful song 3 years ago upon losing his father to cancer. Isn't that incredible? What gifts we get in this life, and how amazing our human contact. Thank you, Jon, for both your kindness and the gift of this important song. It has carried -- STILL carries -- me through the toughest moments of this transplant.

Day +3

2006-10-28T20:38:00.000-04:00

I'm right where I need to be. My counts are dropping now, so I'm on the way down before I get to get back up. I'm in a lot of pain because of the high dose chemo's effect on my GI tract, but there just isn't much to be done about it but give me pain meds and a little Immodium, at this point. They did cultures of 2 samples, and I don't have an infection -- so that's a GREAT thing! Really all they do now is to work to prevent infection, swiftly react to it if it does occur, and just manage the pain which results from the chemo. You just have to let it run its course and remember that it's temporary.

My WBC is down to .3 now, my platelets are 198, and everything else is really dropping, so I'm getting down there. It's important to understand that there is a definite pattern post transplant which does not involve constant improvement. You go down before you go up, so some patience, humility, and faith will hold you in good stead.

In addition to the pain, I'm feeling pretty wobbly on my feet and have this sort of "hollow" feeling, for lack of a better word. It's definitely a feeling of unwellness and fragility. My throat is worsening, as is my mouth, despite extremely responsible mouth care. I'm having trouble swallowing my pills now, so I'm pretty sure I'm going to be on IV antibiotics tomorrow since I'm now struggling to get even the little pills down. As for food, soft foods are ok, as are, obviously, liquids, but even the case of the latter, if there liquid is carbonated, then I have to work harder. According to the new doc on rotation this week, I'm a little ahead of schedule, so I'm really hoping that means that I'll be on the upswing that much sooner instead of just going down faster!

See, what happens with all of this GI/mouth/pain stuff is this: the high dose chemo attacks the rapidly reproducing cells in your body.....like cancer, which is a good thing. Indiscriminately, it also attacks other, good cells.....like hair, skin, nails, and your entire GI tract: from mouth to anus. The whole way down. The pain that I'm experiencing now is just that, and we simply have to just let it run its course and accept it as part and parcel of this process while remembering that its duration will be finite.

I mentioned the importance of walking in my last post. I walked more than a mile's worth of laps in the halls today, some of them hand in hand with Lorraine this afternoon. Talk about your weird dates! When I walked alone for a half-hour this evening, I listened to my new iPod nano (yum!) and enjoyed my "Groove" playlist, a work in progress. First up on that playlist is, "Time to Let You Go," by The Funky Lowlives. That song acted as a soothing angel for me during radiation, coming on the Chill station of my Sirius Radio in my car during several of my trips to and fro radiation. It always came on just when I needed to hear its calming optimism (no words -- you've just got to hear it to get what I'm saying.) Radiation was an emotional time for me, as I was circling the drain on the SCT and feeling more anxiety, so this song now has weight for me. It helps me.

Methinks it's time for some oxycodone now, so I'll close. Till tomorrow!

Day +2

2006-10-27T11:23:00.001-04:00

I'm going to start out with a quick cheat and paste an update here that I just wrote up over at the Hodgkins board. I'll try to update later on if there's more to add!

Hellooo! Greetings from Emory!

I've been pretty good about updating my blog but not so much on here. I just wanted to give you the quick and dirty on how I'm doing and where I am in the process.

It's Day +2, so that means that I got my cells back 2 days ago. They say that it usually takes about 12 days for engraftment, and that's why usually folks stay in the hospital for a couple of weeks after Day 0, transplant day.

Everybody's expecting me to have big mucositis problems in my esophagus, and they say that I should start to feel rather, um, "worse" (ok, my word, not theirs -- the didn't sugarcoat it) around Day 4, but it's definitely starting now. As of today I have a big lump in my throat and the insides of my mouth hurt and are tender. I'm doing all the mouth care, yada yada.....they're giving me extra stuff now that it's started.

My WBC is now 1.1, which is nice and low and headed lower -- all part of the plan, which makes me happy! Everything is going as planned and according to tried and true routine, so I'm feeling very comfortable and safe within this SCT routine. I got a potassium bag today, as my levels were too low. (And yes, I do now have a banana sitting right next to me -- and it seems pretty happy to see me if I do say so myself! Yes, I know I'm a freak.) I'm fighting not to chew the insides of my cheeks because they seem to be sort of puffy and well, chewable -- and tearable too, so I'm really working to control myself and not act like an irresponsible 8 year-old and chew them all up. Anyway, it's uncomfortable and a little painful, but I know it's going to get a lot worse, so I will take pains to suck it up and shut my complaining yap for now.

My blood pressure's still really high (170/112 from a deep sleep at 4 a.m., for example) so they're watching it. I'm retaining a lot of fluid so they'll give me more Lassex (sp?) today to help get rid of it and maybe that will help with the pressure, if it's volume-related. I do NOT have any high blood pressure problems in my life, and they know that, so they're chalking it up to the chemo and monitoring it but not really freaking.

Diarrhea remains a constant friend, so I'm gathering samples for them to test to make sure that I don't have any sort of viral infection in my bowels which would cause me to have to be quarantined and forced to wear bright yellow gown to identify me as infected. Now wouldn't THAT be nice! But really they're thinking it's probably still just from a combination of the chemo and my counts dropping.

My fingers have darkened and apparently will darken further from the chemo. Interesting stuff!

I'm tired and a little wobbly as a result of my lowered counts, and that will just increase as they get closer to the bottom. But then they'll go back up and life will be good again!

I'm doing great, I just wanted to share some of the mundane physical minutiae for those who could benefit from the frame of reference.

As I write this, my poor Lorraine is in the sky flying back to me, coming back from her grandmother's funeral. Grandma Romeo had been married to Lorraine's grandfather for 76 years; in fact, they'd just celebrated their wedding anniversary a week or so ago. What a gift, no???? He's in a fog now and quite withdrawn, so we're worried about the obvious. In a way, I find it beautiful that couples go together, but damned if it isn't awful for those remaining. Anyway, Lorraine's going to visit me straight from the airport then go home and pick up our dog (MAN, I love that dog!) and take him home and have some time to herself. That makes me so, SO happy!!! Then I'll have her all to myself again tomorrow. Bliss. (Interestingly enough, that's one of her nicknames for me! )

Love and hugs to all of you!

Day 1

2006-10-26T23:05:00.001-04:00

This will be a quickie.

Lorraine was in NY to say goodbye to her grandmother and be with her family, and it absolutely kills me that I couldn't be there for her at this time, when she needs me most. My rational mind tells me that it's unavoidable, but my heart is breaking. I'll be glad when I can hold her tomorrow.

I'm feeling pretty good, all things considered! The only bodily mentionables are an insanely high blood pressure for a couple of days, some fluid retention, and a wicked case of all-day diarrhea. The low-grade nausea and chemo-mouth funk go without saying. But I really do feel quite well! Got in a good bit of walking, but I'm definitely finding myself considerably more breathless than I am typically so it slowed me down a bit. And, as they say, that's O.K.

Today was a very social day for me, what with making a new acquaintance of a fellow SCT'er on the ward (a lovely Latina woman of 70,) visiting a bit with another one who can be a bit trying, and then getting a couple of rounds of guests! Such that popular room is mine! It was wonderful seeing you, Michie and Ginger, and Cheryl. Thank you for all the presents, hugs and love!!!

Special thanks to Ginger for sharing pics and video of Prince Louie -- you know you're giving him back to Lorraine tomorrow, right? Jimmy the Cat can't keep him. Just sayin'. Oh, and thank you again for your perfect mothering of him -- you eased my mind and heart so much, I can't even tell you.

I'm going to sleep well tonight. Yeah, buddy.

Happy Birthday to Me!

2006-10-25T23:57:00.000-04:00

Happy Birthday to me!! Sorry this is so late, but I had computer woes and it took me all night to sort them out!

So it's a done deal. Almighty Do-over complete. I got two bags of my stem cells back, both through an IV drip. It took about an hour, hour and 15 minutes. About 15 nurses and techs came in and sang to me (actually 3 different times, as there were a couple of late arrivals who rushed in and made everybody do it all again -- too, too cute!) They put balloons on my door and each signed a little hat for me. Lots of hugs and smiles. As you might already have read, this step in the process is rather anticlimactic. Not a whole lot of physical stuff to report. They gave me a mild sedative beforehand to relax me. I did feel a bit cooler during the infusion, as the cells were returned to my body at a temperature cooler than my own internal one. For a while noone smelled anything of me; now, however, I'm getting feedback that I've got a bit of the garlicky/creamed corn stink caused by the preservatives in which the cells have been stored. Apparently it's not too bad, but there does seem to be a little stank goin' on in here!

Lorraine arrived first thing, the sweetheart, with a big bunch of balloons, cupcakes with the number "0" and the gift of an iPod nano.....AND a bunch of really special framed photos we'd thought lost and hadn't seen in 2 of our 3 homes together! (Lorraine found them when she was looking for a photo of her grandmother with one of her nieces.) Getting those pictures back was the best present ever, I can't even tell you. A pic of me as a little girl sitting on Libby's lap in our garden behind Bierer House (the commune in which I was raised in NYC.) Another of her back during WWII during the time when she was stationed in the Phillipines, her sitting on a bale of hay in a really sexy pose looking like a covergirl. A wonderful photo of Louie just after we'd rescued him at 5 months old -- that a black and white of him barking, and taken by a neighborhood kid who was going on to college on a scholarship for photography. There are more.....what bliss to get them back!!!

A few friends visited with me today, and it was GREAT! I had a great time with them! Suzy and her partner Sandy, and Ginger (taking such loving care of our desperately missed Louie) came bearing gifts and lots of great conversation, laughter and love. Tomorrow I should be able to visit with Ginger again, along with her partner Michie. (Yay!)

After Suzy, Sandy and Ginger left, I saw my oncologist walking towards me with a big box in his hands. He came into my room with a big smile on his face, saying, "This came for you....NOW who loves you?!" He even knew abut Mr. Bear's big adventure, which surprised me. He knew that he'd gone missing, but he didn't know that he'd been returned to me...he was impressed that I'd gotten him back, and I was impressed that he knew about any of it. Anyway, I got a beautiful Vermont Teddy Bear from the lovely Tianna from the HD Message Board! She sent me this sassy, satin bustiere-toting playboy bunny bear with a sweet little button on her right hip that named her, "Sarah." How'd you know, Tianna? Man you're too sweet to me, girl. Thank you from the bottom of my shiny, red girl-heart.

In other news, I found out today that Emory's employees are eligible for benefits from their first day on the job, and that they only have to work 20 hours a week to do so. I found a number of jobs for which I'm qualified -- one of them a perfect match and very interesting to me, but alas the timing's a bit off on that one. It definitely gives me hope, though....and something to revisit when the old bod is up and running once again. I feel like I wouldn't have to be as secretive about my recent health problems in the interview process and that I could voice my passion for Emory in positive (and selling) ways. It's such a large organization, between the university and the hospitals and all of their offshoots, there will continue to be plenty of opportunities. So I'm heartened!

Right now I'm finishing up a bagga antibiotics....no infection for me, brother! I didn't walk the halls today, but I did walk in place in and around my room, doing 2500 steps on the pedometer in about a half an hour. It's really important to walk throughout this process to keep you lungs in order and as strong as possible, among many other reasons. Walking prevents pneumonia BIGTIME, which is the real fear of a transplant patient. There's a whole laundry list of reasons why it's important to walk, but the long and the short of it is that the more you do of it, the better you'll do: you'll resist infection, you'll get out of the hospital quicker, you'll heal faster, and you'll recoup your energy sooner. Tomorrow I'll do more. Today I still felt like I was recovering a bit from the previous days' misery.

I'm very happy to have reached this milestone.

I love Louie!

2006-10-24T22:29:00.000-04:00

Ok, just a quick break from all the cancer blah blah blah (see brand new update below) to celebrate my dog, Louie! I miss him so much I can hardly stand it. I love you, Lou Lou! I'm coming home soon!

Day -1, or, On the Eve of My New Birthday!

2006-10-24T21:30:00.000-04:00

Hello all ~ this will be a quick one.

I'm ok! I seem to have emerged from my Ativan stupor, and am feeling like something that is almost akin to human. Well, not really, but I do feel better. I'm on several antibiotics now in preparation for my big day tomorrow. I am still having bowel issues and a residual headache as well as significant nausea -- and they're testing my urine for what seems like blood in the hopes that it's not a urinary tract infection but instead one last menstrual hoorah (or whimper, as it were) -- but I'm doing better! Just found out that the bowel stuff will get me another test -- it seems that they are sampling everything coming out of my body. Ack.

Lorraine got word this morning that her grandmother died. It's heartbreaking. They were close, and her grandma had a very significant, ongoing role in her upbringing. So we're very, very sad. Poor Lorraine is flying out immediately after my transplant tomorrow to go to the service, wake and funeral the next day. My poor sweetie.

Enormous thanks from both of us to Ginger for coming to the rescue of our beloved Louie and taking him into her home....and lap....until Lorraine comes home. Send me pictures!!!

Ooooohh!!! And in other news, I might get Mr. Bear back!! When Tallie, the butch capo of my BMT ward, heard about my bear's plight, she got on the phone and send out the search party. A couple of the nurses had done the same, but apparently Tallie knows some of the folks in Emory's laundry place and she was able to get some people actively looking for a small bear of Mr. Bear's description. They have a lost and found, but I guess noone was looking very hard until Tallie got on the case! She told them to give him a little sprucing and get him back to me tomorrow! Poor Mr. Bear, off on such a big adventure all by himself.... I can't wait to get him back. (I should mention that Ann, one of my night nurses, surprised me in the night with a sweet bear in a verrrrry feminine gift bag (just like I like 'em!) Isn't that just so amazingly sweet and generous??? Yay, people. Yay, Mr. Bear!

Days -2 and -3

2006-10-23T17:05:00.000-04:00

Hi, this is Lorraine posting for Sarah. Sarah has had a rough couple days due to the Cytoxan. She has had severe nausea and mouth pain for the past 2 days and has been given a great deal of Ativan so she can sleep through it.
Sarah will get her last dose of Cytoxan this evening so hopefully tomorrow won't be so bad for her.
As all of you know Sarah is extremely positive and even during this she is still smiling. Then she falls asleep still with a smile on her face.
As of today the mucositis is not present. The pain in her mouth was caused by the Cyoxan which the are managing with heavy drugs.
Going to the bathroom still remains an issue. Hopefuly that will ease up once the chemo is complete tomorrow.
I hope you are all doing well. I cant tell you how much all of you mean to her and how your comments get her through the day.

Take care and I wish you all NED!!!!

Lorraine

Day -4

2006-10-21T18:22:00.000-04:00

Greetings from Day -4! Today was a bit tougher, to be honest....but not as much physically as emotionally. I don't know why exactly; maybe because I learned today that my dear, dear friend, Mr. Bear, is in all likelihood lost to me. It's so crazy I'm so affected by this. Mr. Bear, aptly named because he is a fuzzy tan bear and to me quite male, was given to me by one of my oldest friends Tim (a friend from back in my San Francisco days) when he visited me in Baltimore just before I started treatment when I was first diagnosed. Tim is extremely thoughtful, whip smart, and fiendishly clever. He's also extremely generous, funny as hell, and one of the most gentle people I've ever met -- and that's a lot. ALL of these can be said for Mr. Bear as well, to be perfectly honest, and I'm going to miss him terribly, for he was such a good friend throughout my six months of treatment and literally every low moment since then, through this second diagnosis and up until last night. Last night I was searching and searching for him, pushing my pole around and around my tight room while I looked under chairs and the bed, in both the nurses drawers and mine, in my closet and in my bathroom. As if he had by chance walked in there and gotten locked inside....I don't know what the hell I was thinking. I was just really worried. For good reason, it turns out, because it's clear that he got tossed in with the laundry when the tech changed my sheets yesterday......and they send out the laundry. So he's gone. I'll call back on Monday when Friday's crew will be working again, but the nurse prepared me for his almost certain loss. And that just makes me sad.

But I've just felt rawer for the remainder of the day, with some tears here and there. I'm a little surprised, because I really do feel positively about this process and while I'm a little afraid, I absolutely feel prepared and cared for and not at all alone. Maybe it's just a grief hiccup, brought on by Mr. Bear's loss. Kind of a "Shit, this sucks" moment that will pass.

Anyway, I did want to share that I started the VP-16 today, along with pre-meds, ever-nemesis steroid Decadron, and enormous bags of hydration in preparation for tomorrow's newcomer Cytoxan (carbofosfamide.) Tomorrow, I will get a "cocktail" of Benadryl, Pepsid, Sudafed, and Dilaudid...with more Bendadryl and Dilaudid available if I need either. These are to address sinus issues/pain which can occur. I am happy that I have a very seasoned nurse this weekend; she firmly pushed for these to be placed on my standing order in case they're needed, so there wil be no delay in getting them into me.

Tomorrow will be a big day, chemowise, I'm told. My onc said that if I'm to experience problems with the chemo, they'll arrive with the Cytoxan. Alright, then here's to having no problems!

My counts are still good -- my WBC's over 6,000 so I'm doing just fine so far. Some folks don't become neutropenic until after their transplant, so there's time enough for neutropenia!

Day -5

2006-10-20T16:05:00.000-04:00

My fever broke! We're still not sure if I've got an infection or not, but at least the fever seems to have passed. It feels so good not to be sweaty, clammy, and shivery. I have come to the conclusion that I don't much like having a fever.

2 great surprises today! First, I got a ballloon, vase w/silk flowers and bag full of snacks from, of all people, my dentist! I went to her for the first time, prior to my checking in for my SCT, to get verification for my SCT team that I had no mouth problems. Turns out I had a little cavity, so I returned the following day to get a filling and we bonded over weight loss (she needed to lose 5 pounds to get into a bridesmaid's dress in a week.) She was very nice to me....but I never expected this sweet and thoughtful gift!!

The second surprise came shortly afterwards. Lorraine and I were both asleep in my hospital room and who should knock on the door but Bill (dubbyad)from the Hodgkins Message Board! What a sweetheart! Here's the thing: Bill had an SCT 6 months ago on Emory's BMT ward on 7E....and in my very same room! Pretty crazy, given the size of the place! We'd never met before but had communicated a bit online, and since hearing of my transplant he invariably offered use of his home a stone's throw from Emory. I need to have things laundered every day (pajamas, underwear, pillowcases, etc.) and he told us we could do laundry there, watch TV, take a nap....all of the things that a full-time caregiver really needs. He knows how far away from Emory our home is, so he offered up the temporary use of his home (even going so far as to offer us a key!) during this time. Aren't he amazing? Aren't people amazing? There is so much kindness in this world if you remain open to it. So thank you, Bill, thank you from the bottom of my heart for your incredibly generous offer!

In other pleasant news, I've lost 6 pounds so far! (Appetite's retreating as nausea's approaching.) Lorraine and I keep referring to my transplant as my "weight loss program, as in, "Ohhhh, there's chemotherapy? I thought this was just a weight loss program!" Big fun.

Closing Day -6

2006-10-19T21:39:00.000-04:00

I'm just about to take my Ambien (to facilitate going to sleep after all the comings and goings throughout the night -- I've been on it since the first night and strongly urge others going through this to utilize this support.)

My fever's still at 101.5, I'm sorry to report. And my blood pressure's also way up, interestingly. They also took another blood culture, as it's their protocol to do another culture after someone's had a fever for 24 hours. My oncologist rethought the antibiotic option, and I took a pill of something or other just after dinner.

I now have more nausea and the headache's worsened a bit as well. Constipation was relieved yet again by diarrhea, but it wasn't quite as, er, dramatic an experience as that of last night. Ahem.

Wouldn't it be lovely if the antibiotic worked its antibiotical magic?

Thank you again for the messages and comments!!!! I know I'm repeating myself, but I so appreciate your support, you guys. :)

More on Day -6

2006-10-19T13:31:00.000-04:00

The fever left briefly only to return with a vengeance. Because I'm not neutropenic, my doc isn't going to move forward with antibiotics yet as he doesn't wish me to build up any immunity to them now; later on, when I'll need them the most, I'll receive truckloads of them -- so I'm in a sort of watch and wait on my current fever. They've taken blood and urine samples to see if they can identify anything at play besides fever resulting from the chemo itself (bisulfan can cause it in a few patients) and swelling a delayed reaction to the end of radiation (which ended about 2 1/2 weeks ago.) So there we are.

I feel like crap now. Nausea (not sure if that's from the chemo or fever or both,) a shivery feeling, I feel exhausted, headache, nasty mouth, and it seems like the constipation might be returning since there's been no activity...."But the day is not done," says the optimist! I'm just so hot! (And then cold.) My temp is 101.5 right now so the cause is not a mystery.

I'll probably be back on later.

Thanks to those who've replied for your support! It really helps a LOT, because I feel a bit lonely and bored in here while Lorraine is at work.

Early Day -6

2006-10-19T08:09:00.000-04:00

The day has just begun. My fever's still here, so my nurse said that I might get a urine culture and a chest X-ray later today. She said that my onc will talk to me about it when he visits me on rounds this morning and gets to feel the swollen node, etc. I want to be clear that the swollen node is not at all like a cancerous swollen node -- it's sore and tender, and very big and not well-defined or rubbery. For those of us who've had lymphoma, the difference is obvious. It just seems that I have some sort of virus or something. I do want them to get rid of the fever, because I sweat all night and felt feverish.

I'm hooked up to a bag of Zofran now, and this dose seems, so far, to be doing it's job at keeping breakthrough nausea at bay. I feel a general sense of "blech" and my mouth is SO gross, and I have a headache that just won't quit....but overall it could be a LOT worse! So far, so good in my book!

I'll update here later as I know more.

Day -7, adventures later on

2006-10-18T23:04:00.000-04:00

Well, I have a fever of 101.4 and I'm NOT neutropenic. They took cultures, which should come back in around 24 hours. A little nervewracking, especially considering a big, painful node popped up on my neck. Seems like a little something is going on. I don't know at what point in this process they give you antibiotics, but I know you get a lot. I'd have thought it was after Day 0, though.

The constipation has passed, replaced with some totally off the hook diarrhea, alas. They gave me this crazy liquid laxative (in my fevered state, I can't recalll the name of it, which I find pretty amazing.) every half hour until there was some activity. Well, I had more activity than I'd ever thought possible outside of a Fleet kit.

And tonight I've had 4 1/2 hours of Nurse Kratchet. Didn't like her much at all -- she was nasty, slow, and forgetful. She's the first one I've disliked in my entire inpatient experience -- SCT and ICE. I'm going to see tomorrow if I can request that she not care for me in the future. On the upside, she just had a short shift to fill in for someone, so what's 4 1/2 hours of my life? I got my chemo, didn't I? That's what I came for.

More tomorrow.

Day -7

2006-10-18T14:41:00.000-04:00

One down! The Busulfan makes me feel yucky, but no breakthrough nausea as yet. I have the regular chemo "yuck" plus a sort of scummy tongue (despite multiple brushings and rinsings) and a very low-grade headache. They've got me on a rather considerable dose of Zofran, as the Compazine they'd like to have given me to supplement a normal dose of Zofran is incompatible with my Wellbutrin. Who knew? So I've got the inevitable Zofran constipation. Bleh. We're now on a "bowel regimen" *shiver* so I should see some relief fairly soon. I'm walking my laps and drinking my water and doing my rinses and brushing my teeth. Everyone seems to be very pleased with the white Christmas lights Lorraine hung for me...they do seem to add a festive air, or relaxing, or pretty, or something. I'm glad I brought them, because they make me and everyone else smile.

Last night they woke me literally every hour for blood draws (6!), vital checks, weigh-ins or bag changes. (The scale they roll in makes me feel like a competitor on The Biggest Loser! As I step on, I swear I hear that heavy "big person" bass drum sound they play whenever they put the big guys on that thing.) I took an Ambien as the activity was ramping up for some support getting back to sleep again after each of the disturbances, but still I'm pretty tired today. After my doc and his entourage made their rounds in the morning, and my room was cleaned, I tried to catch some shut-eye before lunch. Nope! More visits from the social worker and the platelet study coordinator. Alrighty then! After lunch I walked a mile, marking each lap on the big dry erase board they've got out in the hall, and once I get hooked up to another bag of Busulfan I'll try again to sleep.

I'll be back later tonight to post more -- just wanted to give another update while I could.

Day -8, or, The Way Out is Through

2006-10-17T19:19:00.000-04:00

Alright, I'm in! (I checked in at 11:00 a.m.) I should be starting my Busulfan in a couple of hours; I'll be on this stuff for 4 days straight.

Here's how the day counting thing works: The day I get my stem cells back is Day 0 -- also to be known as a new birthday for me, because I'll be completely replacing my immune system in a sort of dramatic medical "do-over." All the days leading up to it are in the negative, and will be counted down until I get to Day 0, at which point we'll start counting up through 100, as this is the period during which I will be at the most risk.

Here's the schedge:

o Day -8, Tuesday: Busulfan (24 hours)
o Day -7, Wednesday: Busulfan (24 hours)
o Day -6, Thursday: Busulfan (24 hours)
o Day -5, Friday: Busulfan (24 hours)
o Day -4, Saturday: Etoposide/VP16 (4 hours) and continuous hydration
o Day -3, Sunday: Etoposide/VP16 (4 hours); Cyclofosfamide/Cytoxan (1 hour) and continuous Mesna
o Day -2, Monday: Etoposide/VP16 (4 hours); Cyclofosfamide/Cytoxan (1 hour) and continuous Mesna
o Day -1, Tuesday: Mesna and hydration to run until 24 hours have passed since last Cyclofosfamide/Cytoxan treatment, then stop all drips. (Hallelujah!)
o Day 0, Wednesday: Happy birthday to me! Hello, 7,800,000 stem cells!!

It seems that I probably won't be getting the Kepivance at all now due to its role in pretty much closing up my esophagus -- it wouldn't do that to the normal person, but mine is the size of a 9-year old's to begin with, before all the scar tissue accumulates, as it always does between dilitations. My doc said that, while it works well to reduce the severity and duration of the mucusitis, it has a cumulative effect and acts in "layers" with multiple doses, so he's concerned about giving it to me again since it had such an effect on me the first time. For this reason, he said, he thought it better not to have it after my transplant, as was originally planned. My response was that the days after my transplant are the days when most folks stop eating anyway, so it doesn't much matter if I can swallow or not! We left it that he would mull it over and whatever he decides is fine by me.

I'm going to participate in another study! I'm really happy to be able to contribute in this way, and urge any others who are given an opportunity to do this to allow their medical experience to benefit patients in the future. You may recall that I participated in an AMD3100 study. This second study is oriented around platelets in a "Determination of the optimal platelet dose strategy to prevent bleeding in thrombocytopenic patients (PLADO study)" sponsored by the National Heart, Lung and Blood Institute, a division of the National Institutes of Health (NIH). It's a randomized study in which we participants will get one of three doses of platelets when our platelets fall below 10,000, the point at which transfusions are generally required. I will get a low, medium or high dose, and if my doc finds that my randomized dosage is inadequate, he will have the option to remove me from the study in order to give me what I need. Getting too many contains no health risk. So it's pretty much risk free, and I get to give them some important information! What they're trying to find out is exactly how many platelets per kilogram of body weight are most effective. Apparently they've always just hung a bag of blood without knowing how many platelets were contained within it and without any specific idea of how many would be most beneficial for the patient. This study will tell them how many platelets we really need when our counts are low, so folks won't get underdosed in the future. The study's findings may benefit the medical community in other ways unknown to me. So that's that. Glad to contribute!

I've been told by my doctor that the 7-10 days after transplant are the worst, and that once my counts start to recover, I'll feel better. He said that some folks have a really hard time with the chemo, and others don't, so we'll see how I do. Among those who suffer more, the effects are most acute after day 4 of the 7 total.

Lorraine just left; she'll be back early in the morning and then again late tomorrow afternoon. We have a movie date with our DVD player! Jeez, how did we live before Netflix, anyway?

In a book I'm reading, the protagonist refers to a saying: "The way out is through." Just what I needed to hear as I stand at the edge of it all.

The trees above show the two varieties of Japanese Maple that Lorraine and I got to commemorate my SCT. They will grow strong along with me.

A Trip to ER and Getting Readmitted this Tuesday

2006-10-15T21:08:00.000-04:00

Friday at around 10:30 after eating a couple of chicken wings, I got a piece of chicken well and truly stuck in my esophagus. Try as I could, I couldn't get it to go down or come up. It was still stuck when I met with my oncologist to get the green light on going back in this Tuesday to start high dose. Dr. Kaufman said that the Kepivance I took last Saturday-Monday in preparation for the scheduled high dose chemo as a proactive means of reducing the severity of the mucositis most SCT patients -- and, I'm told, definitely I, as a result of my esophageal strictures -- will get, caused my esophagus to swell and exacerbated my already severe problem swallowing.

So, after giving me the "all systems go" for going back in this Tuesday, Dr. Kaufman tried to expedite my getting an endoscopy to remove it in Emory's ER. He really did try, calling ahead and even walking over to muscle up some extra speed, but I still ended up spending 7 1/2 hours there for a 40-minute procedure. The GI doc had a really hard time getting it up because it was big enough to just completely block one of my strictures, and it ended up being pretty traumatic, painful and scary. I felt like I couldn't breathe, like I was drowning....it was pretty awful.

Lorraine and I had two of our favorite friends, a couple named Bob and Rick, come from Baltimore to spend the weekend with us. After picking them up at the airport at 5:00, Lorraine brought them straight to the ER, where the three of them waited for me until just after 12:30 a.m.

The good news is that I'm swallowing much better now that the swelling has gone down, and I'm very happy to know that day after tomorrow I'll start high dose. I'm not exactly looking forward to it, but I am absolutely ready to get in there and get it over with.

As Lorraine likes to say, "Git 'er done."

The Pressure's On!

2006-10-12T22:48:00.000-04:00

As of today, the new plan is this: Tomorrow afternoon I'll get eyed by my onc. Provided I pass muster and get the go-ahead to proceed next week, I'll go back to Emory daily Saturday through Monday for another round of the Kepivance (ick), take another day's worth of Dilantin on Monday, and then go back in on Tuesday at 11:00.

I do think I have had a little bug, so I've been slamming the fluids and vitamin C, and getting lots and lots of rest. I have to believe that I'll get the green light tomorrow.

Prayers and good vibes welcome! We have some dear friends, Rick and Bob, coming to stay with us tomorrow through Sunday, but I'll make a point of giving an update tomorrow night.

Inspiration

2006-10-10T23:18:00.000-04:00

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
Eleanor Roosevelt

Did I mention that I have a photograph of her visiting the troops and Red Cross workers in World War II? Libby, one of the amazing women who raised me, was a Red Cross worker overseas during the war, and she was standing on the sidelines with a camera when Predident Teddy Roosevelt's wife visited the troops to cheer and motivate them. I love that Libby was able to see Eleanor; I like to think that they were very alike in many ways. I find both of these women absolutely inspirational, and I am finding this quote of Eleanor's particularly relevant in light of today's setback.

I give thanks for both of these extraordinary women.

They sent me home.

2006-10-10T21:45:00.000-04:00

I'll post more details soon, but after getting my PICC line placed with great difficulty and 4 almost fully realized attempts (repeated "spasms" were the problem -- my veins would just disappear) I went up to my hospital room in the bone marrow transplant ward to find that Lorraine had gotten me beautifully settled in...even hanging the white Christmas lights I insisted on bringing.

The long and the short of it is that the flu-like symptoms I've experienced over the last few days could result from allergies during my first fall in the allergy capital of America....or I could actually have some sort of bug. My breathing is fine, I'm not achy any longer, no temp, but I do have a tickle in my throat. So in the name of my safety, they sent me home. If I have a bug now, after chemo I might not be able to recover, or it would take me much, much longer. So I appreciate it. That said, I'm just completely devastated and have cried my eyes out. They have no idea when they'll be able to get me back in again. Apparently it's the busy season for bone marrow transplants at Emory. Obviously they want to do it as soon as possible, and obviously I'm praying that it will be in a week....but there are no guarantees. Going longer without treatment to cure me is terrifying and absolutely awful to contemplate.

I do understand it, but that doesn't make it any easier to take. I can't seem to stop crying whenever I think about it.

My transplant coordinator nurse is supposed to call me tomorrow, and then I'm supposed to go back in in a couple of days to get checked out. Then we'll talk about getting me back in there. They have no idea what they're going to do about the Kepivance I took and whether I'll be able to take it for another 3 days before getting the high dose chemo -- I forgot to ask about the Dilantin.

This is out of our control, and it may not be a long delay. I'm hoping that these truths give me a greater sense of peace tomorrow.

One funny thing: Lorraine made me laugh mid-sob when she said, "I've been kicked out of bars, but never a hospital!" She's pretty great, isn't she? She's as upset as I am, and has said about 47 times so far since we heard I was going home, "I can't f*ing believe it." We both have some emotional reconciling to do. This is all so hard. Until you're in it, you really just can't fully understand how hard it is on so many levels. If you were to ask Lorraine how it is, she'd probably say, "It's awful. It's just some seriously f*cked up shit." And that pretty much sums it up, I'd say. It kills me that I'm putting her through this.

My PICC line is hurting a lot as a result of all the problems the physican had (it was the Attending Physician, so I was in the most experienced hands there.) I smell Oxycodone in my near future, as what they gave me in the hospital has worn off.

I'll be back with more soon. Hey, how do you like the new digs?

The last of that calm before the storm

2006-10-09T22:42:00.000-04:00

Just a quick post to say before I turn in that I'm ready for tomorrow. I'm sick with some sort of bug, and I did get a fever of 100 degrees, but I'm not sure that's a disqualifying event. They knew I was sick today but I hadn't yet had any fever. I'll go in tomorrow as planned, and they can see then how I'm doing and whether my schedule needs to be modified. I doubt it, as my fever didn't go over 101, which I think is the magic number. I'm achy, my throat is sore, I've got a headache, I'm dead on my feet....seems pretty much like the flu to me. They'll take care of me, I'm sure. I just want to get in there and get started.

I'll update again tomorrow.

11 down, 1 to go!

2006-10-02T22:06:00.000-04:00

Thank you, Maureen, for the gentle reminder that some of you seek more regular updates on my experience.

Today I had my 11th of 12 radiation treatments. I'm getting the newest in radiation technology, Intensity Modulated Radiation Therapy, or IMRT.

Intensity Modulated Radiation Therapy (IMRT) is a new form of highly precise radiation therapy that targets cancer cells with high doses of radiation while minimizing the exposure to nearby healthy tissue. The advanced technology is in use for a variety of sites including head and neck tumors as well as for treating prostate, cervical and endometrial cancers.

Now as we are able to distinguish normal tissues from cancer cells with ever increasing precision, more exact treatment planning is possible. This is a intensive process that is optimized by use of powerful diagnostic imaging systems. The process involves capturing data from computerized tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET) diagnostic scans and digitizing the area of interest into a sophisticated three-dimensional treatment planning system to develop a precise attack on cancerous cells. Using a linear accelerator equipped with IMRT technology, radiation oncologists can set safe limits of radiation doses to be received by normal adjacent tissue while delivering escalated higher doses to cancerous tissues.

The benefits of IMRT are many. Higher radiation doses are achieved with IMRT technology which produces better outcomes and fewer side effects than most conventional plans. IMRT delivers a uniform dose to the target while simultaneously limiting dose to nearby critical structures. In some cases, the daily dose can be increased; thus, decreasing the total numbers of treatments. These features translate into improved cure rates for many patients with less toxicity.

I'm very fortunate to be able to have access to this technology, and at a location just 15 minutes from my home. Before every treatment, I get an X-ray, so each treatment is responsive to the ongoing changes in my relapse site's size, shape and density. Because the radiation is delivered with such specificity and accuracy, I'm able to receive the lowest dosage required, and only to the areas requiring it. Isn't that beautiful? I never wanted radiation because of the associated risk for organ damage and the development of secondary tumors down the road.....but it's been effectively proven to have enormous benefit to the SCT process, so I don't really have any choice. I just know that if I have to have it, I'm very grateful to be able to have access to the most gently effective treatment available at present.

My primary side effect is fatigue. My overall energy level is markedly reduced, I need a nap in the afternoon (but don't always take it -- I don't want to spend my last days of freedom in bed!) and I tire very easily when I do exert myself. Skin issues are minimal, because I've been very, very good about applying my cream 2-3 times a day (almost always 3, I'm happy to say.) My skin has darkened a bit in the area getting radiation, and it's very warm to the touch, as if I had a sunburn. I've also noticed that my internal thermometer is completely out of whack -- lots of hot flashes, usually followed by cold flashes. It's last year's chemo-induced menopause all over again. I'm not sure I'm in menopause yet, because I did get my period last month -- after 2 cycles of ICE that's no small feat! Behold the power of my ovaries!! I'm sure my upcoming high dose regimen will effectively drive the last nail in my pre-menopause coffin, although there have been cases in which the high-dose induced menopause was not lasting. I'll be fine either way, but given a choice, it would be temporary, know what I mean?

I went to the dentist today the green light to go to transplant without infection. After tomorrow's appointment to address an itty bitty cavity, I'll get it. Onward ho!

In other news, our dear friends Michie and Ginger have so generously offered to take care of our dog, Louie, so Lorraine will be less torn and will be able to spend more time with me in the hospital -- overnight, even! I feel so much better knowing that he'll have love and attention -- even if it will come less from us for the time being. I'm also so very grateful for the reduction in stress that this gift will provide my sweet Lorraine. We love Louie so much and, apart from like 2 nights in a kennel once several years ago, he's never spent a single night alone, even if it meant having an old friend of mine (hi, John!) come to our house to pet-sit for 9 days when we went to St. Maarten. So it's a relief, a huge relief.

Oh, and I guess I haven't mentioned that my mass seems to have dwindled down to almost nothing after radiation. Yep, gotta love that.

Tick. Tock. Tick. Tock.

2006-09-30T12:39:00.000-04:00

Is it just me, or does anyone else hear ticking?? We're going into the home stretch, the plane is circling the landing strip, the....oh, you get the idea, so I'll spare you further analogies.

I've completed 9 of 12 radiation treatments relatively unscathed. Because my esophagus isn't getting radiated, I haven't had any of the throat pain or swallowing problems associated with neck and chest radiation. The biggest thing has been fatigue -- I am most decidedly a slow-moving mammal these days. I also have some skin discoloration (darkening;) interestingly, you can actually see a vertical line on the front of my neck that marks the beginning of the radiation field. It's just darker, and feels warmer and more sensitive to the touch than my other clavicle and side of my neck. But really, overall, radiation is so much easier than any of the chemo has been.

Speaking of chemo, I've got my whole routine now for my high dose, along with dates. Turns out, I won't have much of a break from medical treatment between radiation and getting admitted into the hospital. I'd thought I'd have a week off to just rest, but I'm still going to have to go back and forth to Emory several times. Here's the schedule, along with the meds I'm going to get ( with links to relevant info for those who would benefit from this information):

o Tuesday, 10/3: Final radiation treatment
o Friday, 10/6: Go to Emory to meet with Dr. Kaufman (I love that guy!!) to go over risks of transplant and give consent
o Saturday, 10/7: Go to Emory for IV infusion of Kepivance, a medicine that will proactively reduce the severity of the mouth sores most people get. There are five levels of severity, and this medicine should reduce any sores I get by one level, so a Level 5 would go down to a 4, and so on. I will get this medicine for 3 days before starting high dose chemo, and then again for 3 days after getting my cells back (the transplant.)
o Sunday, 10/8: Go to Emory for IV infusion of Kepivance
o Monday, 10/9: Go to Emory for IV infusion of Kepivance. Also this day, take 400 mg of Dilantin 3 times a day. The chemo drug, Busulfan, which I’ll start on the following day, can cause seizures, so this medicine is taken as a proactive measure to reduce this possibility.
o Tuesday, 10/10: Go to Emory to get a double lumen PICC line implanted in my left arm. Together with my port, they will have the 3 points of “hook-up” they need to effectively treat me with chemo drugs, hydration and IV medicines, as well as the daily blood tests they’ll need to perform to check my counts. After the PICC line is in, I’ll check into my room on the Bone Marrow Transplant ward and start high dose chemo that same day. The first drug I receive will be Busulfan, and I will get this delivered via IV every 6 hours for 4 days.
o Wednesday, 10/11: Busulfan
o Thursday, 10/12: Busulfan
o Friday, 10/13: Busulfan
o Saturday, 10/14: I’ll start the second of my three chemo drugs, Etoposide, also known as VP-16. I will get this for 3 days.
o Sunday, 10/15: I’ll start the third of the drugs, Cytoxan, and I will get this with the Etoposide (VP-16) for two days.
o Monday, 10/16: Cytoxan and Etoposide (VP-16) – last day of chemo!!
o Tuesday, 10/17: IV hydration all day, to make sure I’m all ready for my transplant the following day.
o Wednesday, 10/18: Happy birthday to me!! This is Day Zero, the day when they will give me back my cells through an IV drip not at all unlike a normal blood transfusion. The days preceding it are in the negative, ie. I'll start on Day -8,) and the days following it will be counted up to Day 100, at which point I should be able to have my first PET scan to see if I'm still in remission and how big the residual tumor is after treatment. The beautiful and wonderful Angie graciously described her Day Zero transplant experience here, so I have an idea of what to expect. A lot of people apparently reek of – of all things! – a sort of garlicky creamed corn upon receiving their stem cells back (and for a couple of days afterwards) as a result of the preservative in which the cells have been frozen. Lucky Lorraine! I’m told that this day is pretty uneventful in terms of side effects or physical changes. It’s afterwards that the shit hits the fan. On this day I’ll start another three days of Kepivance to try to reduce the mouth sores associated with recovery after the transplant. I’ll get this IV medicine today through Friday.

That’s all I know now in terms of meds. I am to expect to be hooked up to that IV pole pretty much the whole time, because I’ll be getting lots of antibiotics to avoid infection when my blood counts are at rock bottom, getting lots of hydration because I will have difficulty drinking enough to keep me adequately hydrated, pain meds (I may end up with a morphine pump that I’ll just hit when I need more help with pain) and more goodies.

My goals for successfully traversing this transplant are the following:

o Walk as much as I can every single day. Walking exercises your lungs, thereby reducing the risk of pneumonia, which is a very real threat. They say that the more you walk, the quicker your recovery and the sooner you can get out of there -- and the better your recovery at home will be. It doesn't just help with avoiding pneumonia and regaining stamina and a minimal level of fitness, it also increases your ability to fight all sources of infections; it really just helps with everything, apparently. The SCT survivors with whom I've communicated about this topic say that it's hard, because what you really want to do is just to lie there because you feel so horrible...but you have to force yourself.
o Swizzle and gargle about a thousand times a day. The chemo drugs affect rapidly reproducing cells, and some of the most rapidly reproducing cells in the body are those in the lining of your mouth and esophagus and all the way through out the other end. (Also the hair, which is why your hair falls out on chemo.) Anyway, because these cells are so affected, one of the particularly unpleasant side effects of the chemo during the transplant are terrible mouth sores (lesions) all the way through the whole canal. Because bacteria can so quickly develop in the mouth, that’s where the sores can begin to take hold, so you want to gargle and rinse extremely frequently and also to brush the teeth using the little finger brush they give to use instead of a regular toothbrush to avoid any bleeding. Apparently you go to the bathroom a LOT during this process (lots of diarrhea as well as peeing from all the hydration) – so a wise and beautiful woman from the HD board, Robin, shared with me what she did during her transplant, and I’m definitely going to adopt her plan: she performed her mouth care every time she went to the bathroom. Works for me!
o Try to drink as much fluid as possible. I’ll have to get up to 2 liters in order for them to release me, which seems like nothing at all to me now but is apparently difficult when you’re in the throes of all the side effects.
o Try to eat even a couple of crackers or spoonfuls of soft rice so I can keep down all the pills they’re going to be giving me. I’m to expect a great deal of nausea and vomiting, so I’m not going to want to eat (especially if swallowing my own saliva feels like cut glass, as it does for many) – but I have to try if I want to keep down the meds they need me to have.
o Develop meaningful friendships with morphine and other narcotic pain medicines they give me. I’ve been told by a number of other survivors that I should not try to be a martyr in this – get any relief I can and pray that it makes the time go faster. They tell me that the less I remember of my hospital stay, the better.

I’m a bit worried about being alone in the hospital when Lorraine is at work and I’ll be all hopped up on pain meds and/or unable to talk because of the mouth/esophagus sore issues, and we are both worried about the period following my release, when I’m not supposed to be alone and will need some help with normal daily functions as well as getting back and forth to Emory a few times a week for them to monitor and treat me. The transplant treatment continues after your release from the hospital, when you’re at such risk for infection; I have been told to anticipate getting IV antibiotics and hydration pretty regularly on those visits back and forth to the hospital. Additionally, if I have any spike in temperature at all, I’m to hightail it for Emory immediately rather than going to any local hospital – and I won’t be able to drive myself. We’ll figure it out somehow, but it’s a little scary now. We do have a couple of friends locally, but each of them has other things going on which present challenges to being available to spend gobs of time with me or escort me back and forth to Emory. I’m sure we’ll figure it out, but right now that portion of it seems pretty daunting to both of us.

That said, I’m very excited about moving on to the meat and potatoes of this thing. I’m scared, but still very eager to just go in, do it, get out, and then tackle the next stage: recovery!

She's radioactive, baby!

2006-09-18T23:34:00.000-04:00

I got my first radiation treatment today -- the first of 12, each of them fairly low dose at 24 GRay apiece. I'll get these treatments Monday-Friday. I met with the local radiation oncologist the week before collection, but she didn't know yet whether or not she would need to radiate my esophagus, something I'd feared very much. The strictures resulting from my childhood poisoning, and the subsequent heavy radiation I got slammed with all the thousands of X-rays I got throughout my childhood, put me at significant risk for developing esophageal cancer, so it's a real blessing that I won't have to have it radiated now and increasing my risk further. Yay!! I'm just so relieved!!

I didn't talk about it last week, but in the name of at least a nod to Radiation 101, I had to have a mask made which is used to hold my head in place during treatment. They marked the mask so I didn't have to get any permanent tattoos or get Sharpie marks on my skin. That's nice, because a lot of folks end up with the tattoos so the technicians don't have to mark the precise spots every day. The mask is pretty freaky, though. They soak this piece of plastic with lots of tiny holes in hot water and then, while you're lying on your back on the table they drape it all over the top of your head neck and shoulders. Then they press tightly so that it is very form-fitting and then they strap or snap (I can't tell which, I just know it's loud!) you in. The idea is that you can't move within that mask; you are held very tightly in place so they can be sure they're radiating exactly where they mean to. It's pretty freaky though. I can see that someone with claustrophobia would really struggle with this process. I do love that they mark the mask and not me, though!

The right side of my thyroid will get radiation, but not the center or the left side, so while I still run the risk of developing hypothyroidism, it's a smaller one than it could have been. I'm just keeping my fingers crossed, because of course I'd rather not have my metabolism permanently affected and all the other things impacted by a failed thyroid. I'm just going to go into this as positively as I can.

I said in my last post that I can't wait to get done with this and just get into the hospital and that still holds true. I'm resigned to getting radiation -- I never wanted it, but then I never wanted cancer either, so it's a means to an end. I just want to get on with it. My relapse date is June 21st, so we're going on 3 months now. Perfectly normal for an SCT -- but it feels almost interminably long when you're the one in it.

I just keep thinking of what lies in wait at the end of all this: a cure......and a trip to Italy with the woman I love.

Really successful harvesting!!

2006-09-15T22:51:00.000-04:00

Bigtime WOOO here! Sorry I'm late in reporting this, but my collection went beautifully!! With a goal of 5 million, they collected 7,800,000 IN ONE DAY!!! Now how 'bout THEM apples?!?!

On Monday, Lorraine and I got up early to go to the hospital to get my neck catheter implanted. It had two lumens attached to one tube so they could both suck out the whole blood and return the blood with stem cells extracted through the same tube. The catheter implantation was performed under a twilight, and because I'm surprisingly (and unfortunately) resistant to lidocaine, they had to give me twice as many shots to my neck to numb the area -- ouch! Further ouch resulted from the freshly graduated newbie surgeon's incredibly tightly drawn stitches -- so every time I turned my head even a little bit, the two stitches holding this rather large gauge catheter in place pulled. Very painful. That said, this little puppy served me quite well, so you'll find me much more grateful than complaining. :)

Collection itself was fairly uneventful. A pronounced calcium deficit required the taking of additional Tums -- I'd been popping them every several hours for a couple of days prior, but my calcium was still very low. You realize this when your lips get very numb, among other things. I found that for a good portion of it I felt very cold, because the blood is returned to the body much colder than when it's withdrawn. I don't want to bore you guys to tears with all the minutia, but it really is a fascinating process. According to the Louette, the hemapheresis ward's Nurse Supervisor, the first prototype for a machine to withdraw stem cells was created by a fellow in the 1950's whose son had leukemia. This father, who then worked for IBM, asked his son's oncologist if the boy would have more time if there were some way to remove the stem cells and sort them, and the oncologist replied that he would. The man ended up getting funding from IBM to design and create the first model of this machine, upon which all subsequent machines were based. These days they're no longer created by IBM, they're smaller and quieter than they ever were, and also more effective. I'm not sure, but highly doubt, that the original machine came in time to help that poor man's son.

Each day that I was on Neupogen (I started on Friday) brought more pain, as these growth factor shots put the bone marrow into white blood cell production overdrive, causing the marow to expand -- and this hurts like a MOTHER! That said, I was very, very happy that they were able to collect that many in one day. Harvesting was assisted by the study drug I was taking, AMD3100, which acts to fill up the sticky parts of the blood marrow that those stem cells created by the Neupogen will return to if possible. Therefore, many more stem cells are free in the bloodstream for collection. Apparently I went into the Neupogen treatments with a high CD34 count, which reflects the number of stem cells present in the bloodstream. Then, when my labs of the night before collection showed a WBC count of over 77,000 before getting the AMD3100 shot, my oncologist on the morning of collection said that he had no doubt that we'd get at least the full 5 million that day. The AMD3100 had to have played a big role in getting me up to almost 8 million. I participated in the study as an insurance policy that it turned out I didn't need, but I have absolutely no regrets.

I start radiation on Monday. I'll get 12 treatments, each of 24 gammarays. I'll end on Tuesday, October....what? 3rd? That will be my last treatment, and then I'll go into the hospital on Tuesday of the following week, October 10th. I'll start out with a PICC line installation (double lumen, so with my port they'll have the three points of entry they need to give me care) and then I'll start high dose chemo later that day. I'll be treated with busulfan, VP16 (ifosfamide (I've had that already and it was very effective,) and cytoxin. This high dose will go on for I think 8 days or so, followed by a day of just hydration, so I go into the transplant fully hydrated. Then the next day I'll get my stem cells back, and this will be Day Zero. Transplant Day! Happy birthday to me in this great big, divine do-over!! All told, I should be in the hospital a month, but if my counts come up before then, I could get out earlier. They have to see evidence of engraftment (my body's acceptance of the donated cells - in this case my own) before they'll release me, and that evidence will be apparent in my blood counts and vital signs. I also will need to display an ability to remain healthy on my own --- so I'll need to show that I'm eating, can consume at least 2 liters of fluid a day, am mobile, have relatively normal cognitive function, and am processing waste appropriately.

I'm ready. I just want to get the radiation over with and get in there to get this party started. I'm all about the "Get 'er done" now. SOOOOO ready....

It's collection week!

2006-09-10T19:24:00.000-04:00

Hello, all!

I'm writing this from a hotel near Emory, where Lorraine, Louie and I are staying throughout collection this week. If you guys could send some happy thoughts and good vibes my way, I'd appreciate it.

Early tomorrow morning I'll get a catheter implanted in my neck and do labs (I hate that they never use my port and just root around my arms looking for that elusive vein!) At 10:00 p.m. a visiting nurse will come to give me my AMD3100 shot. (This will occur each night before collection until we've collected 5 million stem cells or Friday, whichever comes first.)

Then collection starts on Tuesday! (She said bravely.) I I'll do that from 7:30 a.m. till around 2:00 p.m., then go back to the hotel to await news of the results. They'll tell me how many we collected and then we'll know if we're going back the following morning. They'll remove the temporary catheter the morning after my final collection, or at the end of Friday's session, whichever comes first.

That's the plan. I'm pretty nervous -- mostly it's performance anxiety. I know howimportant it is for me to produce the full amount. They did say that they could proceed with fewer than the full 5 mill -- that would just mean that I'd have reduced platelets for the first year and would just have to be careful about falling because of the bleeding issue (also bruising.) But not the end of the world -- not enough to delay proceeding, I'm pretty sure. But still I'm nervous -- I just really want to be sure they can get at least the full amount, if not more!

I have WiFi access here, so I'll be back to update once I know more.

My SCT Plan!!

2006-08-31T21:53:00.000-04:00

Alright, big day for me today at Emory Winship Cancer Institute! It went like this:

Lorraine and I met with Dr. Nadia, the radiation oncologist, who detailed my upcoming radiation treatment. Dr. Nadia, at Emory, is the one who’s recommending my treatment; she will contact a local radiation oncologist who will deliver my actual treatment, she’ll facilitate a meeting with them next week, and discuss my recommended treatment with them within the context of my transplant at Emory. She says that this is not at all uncommon and the local radiation oncologists are quite cooperative in agreeing with the recommended treatment. I will have 2 ½ weeks of radiation, to begin September 18th, after collection has been completed the week before. After we discussed my grave concerns over radiating any portion of my esophagus because of my already significant risk of developing esophageal cancer, she concluded that the best course of action will be to avoid it as much as possible and also to reduce by a small amount the amount of radiation delivered each day. They’ll also try to avoid my thyroid. Both my esophagus and thyroid will both still get some degree of radiation, so I still run the risk of developing hypothyroidism and also sustaining the (for me) bad effects of radiation to my esophagus. We’ll just do the best we can. Can’t ask for more than that, right?

Following were a chest X-ray; extensive lab tests (about 10 vials of blood, drawn painfully and after several attempts peripherally, rather than from my port as the heparin can skew the results;) and a urine analysis.

Then I met with my oncologist, Dr. Waller; my transplant coordinator nurse, Jeanie; and my pre-transplant social worker, Ali. We talked about the timeline and plan for upcoming treatment, he reviewed my negative PET and good-as-it-can-be prognosis and associated risks, and we confirmed that Lorraine and I are prepared for what lies ahead. He answered all of my questions, even printing out a study I’d asked about which compared PET negative results to PET positive results going into the transplant.

Here’s the timeline:
o Week 9/4 – 9/10: Meet with local radiation oncologist to discuss upcoming treatment
o 9/8 – 9/11: Give myself Neupogen shots twice a day for mobilization (to increase stem cell production)
o 9/10: Go to hotel near Emory
o 9/11: 6:30 a.m. – Labs; 7:30 a.m. neck catheter implantation surgery; 10:00 p.m. – AMD3100 shot given to me in hotel by visiting nurse
o 9/12: 7:30 a.m. – Stem cell collection begins – to be repeated daily, up to 4 days, until 5 million cells are collected
o 9/18 – 9/22: Radiation Monday through Friday
o 9/25 – 9/29: Radiation Monday through Friday
o 10/2 – 10/4: Radiation Monday through Wednesday
o 10/10: Picc line implantation surgery; admitted to hospital for high dose chemo and transplant, to stay in for about a month

So that’s the plan! I feel better now that I have some dates, and I’m really just so pleased to have this team of experts supporting me and working to get me well.

The Plan...and the Reward

2006-08-26T20:36:00.000-04:00

I'm getting closer to a plan, now, and I'm feeling good about it. This week I'll meet with my primary transplant oncologist, Dr. Waller, as well as the radiation oncologist at Emory who will be overseeing my pre-transplant radiation treatment. Dr. Waller will go over the risks of this procedure, get my consent, and go over the overall plan for my treatment. The radiation oncologist will review her recommended treatment and answer my radiation-related questions, and then we'll talk about coordinating her referral to a local radiation onc for treatment delivery near my home.

In order to participate in the AMD3100 study, I have to wait one full month after the day of my last chemo treatment (August 8th) before they can collect my cells, so that puts us into early September. I'll start giving myself Neupogen shots twice a day on Friday, 9/8, in preparation for collection on the 12th. Neupogen puts the bone marrow into overdrive, hopefully producing all the stem cells I need for the transplant. The goal is 5,000,000.

Lorraine, Louie (arf!) and I will check into the hotel Sunday evening so we don't have to fight traffic early Monday morning to get to Emory at 7:30 Monday morning for the implantation of my temporary neck catheter, which will remain in place for the duration of stem cell collection.

Monday morning I'll have the catheter put in, take pain med's Monday afternoon (apparently the location of the catheter on the side of the neck can be painful,) and then a visiting nurse will come to the hotel at 10:00 p.m. to give me the AMD3100 shot. AMD3100 apparently assists a great deal with collection, because it sort of "fills up all the seats" in the marrow, forcing all those Neupogen-generated stem cells into the blood stream so they're more accessible for collection.

Tuesday morning I'll report to the hemapheresis ward at 7:30 with the goal to collect as many stem cells as possible! I'll finish around 1:30-2:30, head back to the hotel, and we'll hear that evening how we did. (My cells will have been turned over to the lab for counting before freezing, so we'll have a count at the end of the day.) Some people can get all 5 million collected in one day; others can take up to four days. Then there are those who's marrow has been so affected by the chemo they've had (as well as other contributing factors) that they simply can't produce the full 5 million. The hotel is booked through Friday, just in case. If I can't produce the 5 mill, we'll still move forward, as I explained in the last post.

Each day I'll arrive and leave around the same time, and each evening we'll get a status report...until we get the word that we've done it!! Then I'll go back in the next morning and they'll remove the neck catheter and we'll get to go home.

The following week I'll start radiation. I don't know yet how many weeks I'll get it, but it will be 5 days/week. Compared to chemo, radiation is apparently a breeze. Side effects will depend on exactly which area they radiate, but at the least I should expect fatigue and skin soreness and dryness. I'll get a prescription for a special cream to deal with the skin issues. If they radiate my mouth and/or throat, I'll have some other issues to deal with, but I'm not sure yet if that will occur. I'm hoping they can just radiate that clavicle only, without touching my mouth, esophagus, or thyroid. That would be wonderful!!

Radiation will be anywhere from 2-4 weeks, and then I'll go in for high dose chemo and the transplant immediately afterwards. I expect to be hospitalized for the month of October, pretty much. If I can get my counts up and get released sooner, GREAT!, but I'm going into it expecting a full month -- 6 days of high dose chemo, followed by 3 weeks for the transplant and its aftermath.

So that's the plan!

In other news, Lorraine and I are planning a 2-week trip to Italy next spring to celebrate!! My Christmas present of 2004 was a trip to Italy to commemorate my having beaten cancer -- I was diagnosed 12/17/04, so under the tree I found a beautiful book of photographs of Italy, and the second half of that present was to go to Italy after we'd put cancer behind us. Well, after I finished treatment for Round I last June, we'd made up our minds that we were going to move from our Baltimore townhome, so we put the Italy trip on the shelf. Well Lorraine has made up her mind that we need to go next spring -- and I am so excited!! Some of you may know that I used to live in Italy, so I intend to brush up on my Italian -- the plan (as of tonight, anyway!) is to go to the Amalfi coast, Venice, and Florence (where I lived.) We're going to rent a car and just tool around the countryside, enjoying ourselves. Now how exciting is THAT?? Aside from the gift of life....that's a hell of a carrot!

No Evidence of Disease!!

2006-08-24T14:14:00.000-04:00

Can you freaking believe it??? My PET of yesterday came back completely clean!! No evidence whatsoever of disease!!! Amazing. So now they're talking about whether or not to give me radiation before the transplant. At this point, I'd probably be more comfortable with a bit of it at least, since I still have this 2.3 x 2.9 cm thingamajig around/below my clavicle. I dunno. I'll leave that to the experts, and listen carefully to the pro's and con's as they state them. I'm just so, so happy I've been fortunate enought to have gotten to remission prior to the transplant....what a gift.

The last two days have been so HECTIC!! Tuesday was a 10- hour day (not including the commute) which included blood and urine tests, a pulmonary function test, a bone marrow biopsy (they just do a single one in the case of an HD relapse, interestingly), a check-up with the nurse practioner, a meeting with my transplant coordinator nurse, and a psych/social worker eval for Lorraine and me (in this one I didn't like the question, "And what if this doesn't work?" Not fond of that one at all. I just replied, "I don't know." Then I cried. Bleh.)

Yesterday was a 9-hour day which included a PET/CT, a hemapheresis orientation in which Lorraine and I got to see the apheresis machine and ward and hear about the process, an EKG, and an echocardiogram with contrast.

These two days just totally took it out of me. Just so, so draining....I don't have the stamina that I used to yet, apparently. Also it's official: my veins are SHOT. They have so much trouble finding usable veins, it ends up being very painful.

Speaking of veins and accessing, I'm going to get a temporary catheter in my neck (yes, neck!) just for collection, and they'll remove it immediately right in the apheresis ward as soon as it's official that they've collected enough. Because I'm participating in this AMD3100 study, I'll get the temporary cath put in the day before collection, stay in a hotel near Emory that night (the pharmaceutical company paying for the study will pick up the tab) where a visiting nurse will come at 10:00 p.m. and give me my AMD3100 shot (I will have given myself Neupogen twice a day for 4 days prior,) and then I'll go in to the apheresis ward at 7:30 a.m. for collection for several hours. I'll get out at around 1:30 and find out that evening how many they've collected. I'll do this for up to 4 days, until they've collected 5 million cells. However, if they can't collect the full 5 mill, we'll still proceed with the transplant -- I'll just live with a low platelet count for the first year or so.

Getting back to the port, they're just going to put in a double-lumen PICC line for the transplant itself; that, with my port, will give them the 3 lines they need. Yay!

On Tuesday my transplant coordinator nurse, Jeanie, said that I'd go to collection on September 8th, but today she said that it might be a little sooner. Because of this study, they can't collect until a month after my last chemo treatment, which was 8/2.

I have an appointment with my primary oncologist next Thursday (turns out it's still the director of the transplant center, but the other oncologist with whom I've been communicating was the one who oversaw my care when I was hospitalized, and he wanted to continue to monitor me and keep in touch -- how nice is that??) Jeanie said that if she can update me sooner, she will. I like her a lot.

So that's my good news!! (And the full update, lengthy as it is.)

Oh, and I'm now officially a baldie. Lorraine INSISTS that she finds it very sexy and that I actually look hotter bald because it shows off my features. Hm.... I know she's a keeper, because I actually feel like a big egghead.....with earrings and extra eye-makeup.

No evidence of disease. NONE!

Hair and other things.

2006-08-21T20:34:00.000-04:00

Lorraine shaved my head last night -- it really was time. I'm doing ok, apart from last night's hair heartache. Lorraine was just a wreck; she's having a really hard time this time around, the poor sweetie. I think the actual shaving illustrated the present reality of my relapse....and to have the shaver running through my regrowth, taking inches down to almost bare skin was just really hard for her. For both of us. I was struggling, but then when she broke down, it had the effect of calming me. I just wanted to comfort her. We held one another and cried. This is just a very, very hard thing to go through, in every sense. As for the hair, I'd been hoping to make it till I was hospitalized before I lost it all, but unfortunately I'll be bald for this month of rads (radiation) and then, I'm told that there's little if any regrowth for about 3 months after the stem cell transplant....so I'll probably be bald for a total of around 5 months.

It's not just that I feel so ugly, fat and unfeminine bald. Baldness is the hallmark of cancer, and tells you and the rest of the world that you're SICK. You're reminded every time you look in the mirror that cancer is a clear and present danger in your life -- as is everyone else who looks at you. I chose last time around to go without a wig, and I assume I'll be ok doing the same this time around, as well. I am just so uncomfortable in my wig -- nothing wrong with the wig if you don't mind feeling like you're wearing like a big, hairy hat! (That itches!) I am not ashamed of my sickness, so I don't feel like I have to hide it from view. What comes of that includes some unwelcome negative attention, even as I've had some great exchanges with folks who reacted to my dome and then warmed to me. Anyway, it definitely falls under that category of, "It is what it is."

I don't at all like the lag I'm in now before SOMETHING is fighting my cancer once again. It's been 2 weeks now since I've had chemo, and I think I'll start rads in another, oh, 2 weeks? A month without treatment and letting the cancer continue to grow??

This action-packed week brings a PET scan; an SCT orientation; a double bone marrow biopsy (both hips); a pulminary function test; a heart ultrasound; blood labs; a psych eval; training on how to clean, flush and change the dressings of the temporary triple lumen line (external port) I'm going to get; meeting with the research nurse about the AMD3100 study in which I'm participating; meeting with my tranplant coordinator nurse on all of the upcoming logistics; meeting with my oncologist to hear about the risks of, and sign consent for, the SCT; and either a consult with an Emory rads onc or a meet-and-greet with the new surgeon who will switch out my port, or the actual procedure -- or some combination thereof. I'm supposed to start heavy duty Neupogen for 4 days really soon -- maybe the end of this week -- and 1 day of the AMD3100. Right at the end of these, and after the port's been switched out, I'll go to stem cell collection, which is performed outpatient. Then, depending on my PET results, I'll either have some kind of heavy duty chemo (stronger than ICE) or go right into rads for 4 weeks. So, it's lots of tests and meetings this week, collection next week, chemo or meeting with rad docs (one at Emory and one closer to my house) the following week, and rads after either one. It's a lot, but I just want to get started!! Any time this cancer isn't being treated is time wasted, as far as I'm concerned.

We have to shave my head again tonight, as it's looking too patchy at 1/8th of an inch. I probably have 30% of my hair spread out over my head, with a lot of little bald spots. Being heavier this time around than last doesn't at all help my self-esteem, either. I'm actually feeling rather uncomfortably like Humpty Dumpty.....but I'm not going to fall off that wall upon which I struggle to remain so precariously balanced.

CT Results - The Good News and the Bad News

2006-08-18T13:24:00.000-04:00

Hello, all. I finally got my results yesterday afternoon. I'm going to share here my post on the Hodgkins board detailing the results of that conversation:

Alright. My oncologist called me late this afternoon and gave me the lowdown.

The node that they said they couldn't feel and seemed to be gone is in fact 2.3 x 2.9 cm. So that was disappointing, because we got our hopes up, you know? The good news is that it is down from a starting point of 3.6 x 3.9, and they define "chemo responsiveness" as being able to get a mass down 50% or more from its original size after 2 rounds of ICE. They multiply 3.6 by 3.9 to get a starting point (14.04) and divide it by its point after the 2 treatments (so in this case, 6.07) -- so I'm more than past the 50% mark-- and with one mini and one full ICE....so they consider it a "dramatic" response. The thing is, with the mass at the size it is, they move forward with treatment. Which, of course, is a good thing!

Emory follows the treatment methodologies of Sloan Kettering, so for a person with my profile, they give a set treatment. My profile: in remission before end of ABVD (in my case, after 3 cycles), in remission for more than a year (in my case, 1 year and 2 months), having a relapse in one site only (as opposed to a systemic one), and being asymptomatic at the time of relapse. Sloan Kettering's treatment: 2 cycles of ICE, go to collection, radiate the affected area, then go to transplant. The oncologist (who, by the way, was enormously patient and sensitive with me) said that for patients with my profile, who received this treatment, the "cure" rate at 3 1/2 years out (that's as far as they've gotten) is 83%. So that was really encouraging!! (And not at all what I expected, to be honest.)

Although I was extremely responsive to ICE, they feel that radiation is the best course of action, since my relapse is not systemic, but rather isolated to just one spot. By radiating the area, they can target the single mass with no additional risk to my ability to produce stem cells for the transplant.

So, providing the PET scan I have next Wednesday is negative, the schedule now will be: lots of tests next Tuesday and Wednesday, including a PET on Wednesday; Neupogen and AMD3100 just prior to collection, which will occur the following week (in the interim, they'll switch my port to a temporary 3-lumen octopus one and then switch it back to a regular port for the month after collection); radiation for I think he said 4 weeks will commence one week after collection -- so like 2 1/2 weeks from now; then I'll go into the hospital for 6 days of high dose chemo before the transplant and stay in for the transplant and 2-3 weeks to recover my counts.

Conversely, if the PET is positive, I'll have the tests and go to collection before doing a round of some kind of chemo that's higher dose than ICE before starting radiation.

Of course I'm sort of reeling from what seems to me to be a new course of action. Lorraine remembers the oncologist at the original meeting referring to radiation. (The director -- it seems that I've been transferred to this member of his team who looked after me when I was hospitalized for ICE -- who knew? I guess I didn't get that memo. Not complaining, because I love this guy -- he's been very gentle and communicative with me, and he works within a pretty expert team, so I know I'm in good hands and a recipient of all of their collective knowledge and experience.) I don't remember hearing anything about radiation, but you know how it is -- that's why it's always a good idea to get more than your set of ears in the room.

I'm vacillating between feeling just so sad and disappointed and upset, and chewing myself out for being an ungrateful baby. I still am doing well (he said I'm "right on track,") and I still am, I'm told, going to end up in remission going into this, so I need to just open my mind and shut my mouth. If I get to the transplant a month later than I'd planned, then that's a small price to pay for getting set up for success going into this thing. Right? (These are the conversations I'm having with myself. )

Anyway, that's my update. What a freaking rollercoaster! I'll find out more on Tuesday and Wednesday -- those are the big test/teach days. We'll go to an SCT orientation and spend some time with my transplant nurse coordinator as well as the research nurse, who will talk to me about the AMD3100 study in which I'm participating.

I seem to have misplaced my inner Zen-master, but I'm sure she'll be back tomorrow. For now I'm sort of weepy and sad and scared and disappointed. Tomorrow will bring a new outlook though -- it's mind over matter, and I'll make up my mind to be optimistic again. After all, the man said 83%! Gotta love that number, right?

I'm doing a bit better today, but it's a little disappointing. On the upside, it will allow more time in my pool this summer!

More anon.

I kill cancer!

2006-08-11T19:17:00.000-04:00

I'm sorry for taking so long to update. Here's great news, though! Today I had a follow-up visit at Emory, and they measured the node at the point of my relapse. This was the mass that started out 3.6 x 3.9 cm and then after the mini-ICE, going into the full ICE, it measured 2.5 x 2.5. So today they measured that spot to see the impact of the full round of ICE. They said, and I'm quoting here, "It's a centimeter, if it's anything at all. There's no node definition, so I don't think there's anything there at all." Woo hoooooo!!!!

So I left after arranging things for going back into the hospital on Monday for another round with my new best friend, ICE. At about 5:30, the oncologist who oversaw my treatment in the hospital (not my primary transplant doc) called me to tell me that there had been "a change in plans." No hospital on Monday....instead I'm getting a CT scan!!! He said that, after my visit with the nurse practioner this afternoon, he and my primary met and discussed what they considered to be a "very dramatic response" to the salvage chemo, and they want to hold off on the next round of ICE because they think I might not need it.

So here's the new plan: I have the CT scan on Monday and if that node shows up 1 cm or smaller, I'll get a PET next week. If it's larger, I go ahead with ICE, but they don't at all expect that (the nurse practioner had a third oncologist come in and feel it, and that was the guy who said he didn't feel anything.) So provided the CT is good, I'll get a PET next week, and we'll probably move forward with collection right away. The actual transplant (when the cells are reinfused, after the high dose chemo busulfan) will occur 4 weeks after my last ICE treatment. So if I'm in remission now --- and the goal remains for me to be in a complete remission --- the whole thing will be moved up 2 weeks. Yay!

Anyway, I am just amazed that this thing is gone (or near gone) after just 1 mini and 1 full ICE. I'm so grateful, and feel so very blessed. I wish that EVERYONE fighting this fight could get good news.

So that's my good news! I'll find out more within 2 days of Monday's CT.

That ICE is a real butt-kicker!

2006-08-04T21:40:00.000-04:00

Whoo wee! That ICE is no joke! I'm doing ok, though. It was so great to come home yesterday -- I really missed everybody! The pool turned out so beautifully, and the fence looks just great. We have 4 deck jets which send lovely jets of streaming water into the pool -- it sounds and looks so refreshing and lively! We took a dip last night -- just what the doctor ordered. I fell out pretty early, though; I was just exhausted.

I felt really loopy and out of it, and had a lot of trouble concentrating or holding onto a train of thought. Also pretty shaky on my feet and weak. I have like ZERO energy!

I had a lousy night's sleep again last night, and today I tried to sleep as much as I could, but there were a lot of interruptions, so I didn't get to do as much catching up as I'd have liked. The high point was another swim around 5:00. Absolutely lovely! Of course I gave poor Lorraine a heart attack when I fell into the pool trying to get in. Woopsie! See, there isn't a rail for the pool entry yet, so I was leaning on a chair to get in, put all my weight on just one side and just pretty much fell out! Those liner steps are slippery little devils! I just slid from step to step and landed quite nicely; I didn't even realize until Lorraine was right behind me (she came running) that the chair and towels had come in with me! Crazy. I was just saying, "I'm ok, everything's ok" to poor Lorraine, who was trying to still her heart after envisioning my head hitting the concrete. So that was my big adventure today! We went on to enjoy over an hour of floating and paddling....what a gift!

After some yummy Thai delivery, Lorraine's snoozing in her favorite chair while I share this update with you all. Just wanted you to know that I'm ok and holding up well. I'm definitely going to turn in soon -- I'm pretty wiped.

I'm taking Emend for the nausea, so it's pretty much under control. A few waves here and there, and a definite YUCK feeling which makes me feel gross and hate how my mouth tastes. Like I said, it's mostly really bad fatigue, a lot of dizziness, and a general state of fog that are the worst, I think. There's more, but those are the biggies.

I'll check in again tomorrow because I think I just ran out of steam! I just wanted to let you know that I'm ok.

(Boy, I hope this makes sense when you guys read it! )

I'm hanging in there!

2006-08-02T18:53:00.000-04:00

Hi all!

Just a super quick check-in to let you all know that I'm doing ok. I am exhausted and I'm going to try to catch some shut-eye after posting this. Yesterday I was up from 5:00 a.m. to 1:00 a.m., got up this morning at 7:30 and managed to get in an hour-long nap. So I'm pretty knackered. They're going to have me up late again tonight changing my IV bags, since Day 2 is a 27-hr cycle and the majority of the activity occurs between 10:00 p.m. and 1:00 a.m. So sad for me!

I really am doing well, apart from being just completely knackered. This is a 27-hr drip, so I'm getting a nice big bunch of ICE today! Tomorrow will be 2 hours of Etoposide, and I'll get to go home tomorrow afternoon! Yay!

And you know what else?? My pool will be full of water by the time I get home!! Now how much of a princess am I???? When I left we didn't have a fence, and the pool didn't have a liner (it's inground, with a liner -- 15 x 32, gets to 6 feet deep - limited area in back yard.) Now when I go home, I'll see a backyard transformed! We still have more work to be done there (more sod, more cement, more planting, yada yada) but I fully intend to wade right into those lovely cool waters tomorrow night. Yeah, baby!

I'll give more info tomorrow -- night night!

Love you guys...Special hello to Amie -- you're such a sweetheart! How are you holding up these days?

It's all good!

2006-08-01T10:38:00.000-04:00

Alrighty! Thought I'd give a bit of an update.

Chemo last night went great, no problems at all. They agreed to reduce the Decadron from the normal protocol of 25 down to 10, so I was happy about that. I got Emend and Zofran for nausea, and I'm still feeling pretty good. I've got that chemo hangover/indescribable yuck feeling, but that's familiar territory. I'm to expect to start feeling worse as the day wears on, so early this morning I decided to just get up and stay up after my 5:00 a.m. vitals were checked. I figured I could watch the sunrise and enjoy feeling better while I could -- and catch up on my sleep when I started to feel badly.

My chemo agenda is as follows: Last night I had Etoposide for 2 hours. Today I'll have Etoposide for 2 hours, Carboplatin for 1 hour, and Ifosfamide and Mesna for 24 hours. Possible side effects include: nausea; vomiting; hair loss (mine started coming out on Saturday, so I'm hoping just to make it to the weekend so we can shave it at home -- but we packed the shaving kit just in case); skin rashes, diarrhea or constipation (I've got the latter and they've begun to treat it but are ramping up the dosages today because I need it); mouth ulcers; tingling sensations in hands and feet (neuropathy); fluid retention, darkened skin (this could manifest weeks from now -- sounds kind of like Bleo scars!); bladder toxicity and possible bloody urine (I had the bloody urine last time, but I also had the beginnings of a period that the chemo chased away, so it's impossible to tell what caused the presence of blood); drowsiness, feeling tired, and weakness (I had that a lot even with the mini-ICE); confusion (sure, like I'd notice that! Ha!) Pre-meds before the chemo are Decadron and Zofran, both antiemetics, and both drips.

I'm waiting now for the doctors' rotation. I don't know when they plan on hooking me back up for today's chemo. They leave my port accessed and then just plug me in! The nurses are extremely good, and I feel that I'm in very caring and capable hands. Yesterday I met with Dr. Kaufman, who's on my transplant team; he's overseeing this round of ICE. He was accessible, kind, extremely nice, well-informed, and responsive to my input and feedback. I also met with Don the Pharmacist (everyone says it like that so that's what I call him) -- he's a bigtime talker, but also expert and clearly receptive to my input, insofar as he reduced my decadron intake by less than half. Another new transplant friend is the dietician, Tiffany, who checked in with me to talk about my swallowing difficulties and reflux woes resulting from my childhood lye-ingestion.

So I'm doing just great, overall! So far, so good. Lorraine is at work now, but then is coming back here to spend a few hours with me. I miss her! And the kids!! I wish we could have called a family meeting and just explained that Mommy was going away but would be back so not to worry....but even if we could have gathered them all in one spot, some feline somebody would be yacking up something and then Louie would be rushing over there to eat it....so I don't think the meeting would yield much understanding, really. *sigh* Pets. What are you going to do besides love and worry and love some more?

I'll post more tonight or tomorrow. Ooooh!!!

BRENDA AND GRETCHEN: ARE YOU GETTING MY EMAILS? Please reply with a comment here, ok? I'm worried that my hotmail email addy is getting caught up by your spamblockers or something. Let me know!

I'm in the Hospital

2006-07-31T21:07:00.000-04:00

I checked into Emory today for the first of 2 full rounds of ICE; I'll be released on Friday. Then I'll have a week off, after which I will go back in for another full round/5 days and then have another week off. Interestingly, he explained that they do the ICE biweekly because of a sort of "two steps forward, one step back" effect. So you start out with this big tumor -- you zap it with chemo and it shrinks. When you take time off of chemo to recuperate, it grows back, increasing in size, and then you zap it again so it grows smaller again. So by doing it every two weeks instead of monthly, you have momentum on your side, resulting in your having responded to chemo adequately. I found that interesting, as well as validating of my decision to switch treatment providers, as I was going to be getting my ICE monthly until making the switch.

The goal is to achieve a full and complete remission prior to going into the SCT. If the chemo alone doesn't do that, then I'll get radiation to the right side of my neck only, isolating the relapse site only. My concern with that was that they'd zap my thyroid as well, but I've been assured that if I do need rads, my thyroid won't be affected and that they'll just get the tumor. But of course, my hope is that the chemo alone will do the job. As I write this, I'm getting infused with 2 hours' worth of Etoposide. Tomorrow I'll be hooked up all day, getting 24 hours of chemo: Ifosfomide, Etoposide, and Cysplatin. I promise I'll update with specifics tomorrow.

Then, after a bunch of tests (PFT, EKG, bilateral BMBs, PET/CT, etc.) I'll participate in a study and get a drug called AMG3100, which not only puts your bone marrow into overdrive as Neupogen does, but it does something to sort of "fill up" your bone marrow (or something like that) so the stem cells have no place to go but into your bloodstream, thereby giving them many more stem cells to collect when they go to harvest. Following the AMD3100 I will go back for collection/harvesting of my stem cells, and then I'll have high dose chemo (probably busulfan, my transplant oncologist said) and after THAT they'll give the stem cells back to me. He said that one month will pass between the end of my next round of ICE and the transplant (stem cell infusion.) I'll be hospitalized for a few weeks until it's medically safe to release me from the hospital. Initially, I'll return to Emory 3 times a week (barring unforseen circumstances) and then taper off gradually. Once the transplant team feel that I'm stable, they'll turn me back over to the care of my other oncologist (the one I love who's so accessible and communicative) -- with regular follow-up with the Emory transplant onc and his team. Sounds like a plan, doesn't it?!

Lorraine and I are absolutely ready for this. We're both just so relieved that I"m doing this inpatient, and that the cancer will be treated as aggressively as possible. What I feel more than anything else is an overriding desire just gain some real momentum. I want to drive headlong into the fray, do what's required, achieve greater than expected results and then get to the other side. I want to know that there's no more cancer in my body, and that I have a fighting chance at a durable remission.....and beyond that, a cure.

My first day here has been a flurry of preparatory activity leading up to tonight's infusion. One high point was the measuring of my palpable mass, which the pre-treatment PET showed as 3.6 x 3.9 centimeters. Today's measure (albeit through the Physician's Assistant's physical exam, not a scan) was 2.5 x 2.5!! Woo hoo! That sure as hell motivates me to welcome this next round of ICE into my body. ICE, just keep working your magic!!

And there was much rejoicing!

2006-07-25T20:20:00.000-04:00

Woo hooooo!! My relapse mass of 3.6 x 3.9 cm is located just over my right collarbone -- and under it also, apparently. Anyway, it seemed to have appeared almost overnight -- just this big freaking mass just suddenly popped up to drastically change the shape of my neck -- so big that it limited the degree to which I could turn my head to the right. It was so obvious, that when we learned that it was there after the scan, we were flabbergasted that neither of us had noticed it before.

Anyway!! I have been FORCING myself not to look at it, oh, like 89 times a day to see if the ICE is having an immediate impact. Tonight I broke down and looked at it, and felt it also. IT'S LIKE HALF THE SIZE IT WAS!!!! After just one mini-ICE treatment!!! I ran and showed it to Lorraine, who was simply amazed. It's SO MUCH SMALLER!! And I have two full ICE treatments to go before collection and then high dose chemo!!

With tears in my eyes, I was so thankful. Thank God, thank God, thank God!! Your long term prognosis is supposed to be better if, when you go into the SCT, you're in remission (no evidence of disease) vs. reduced disease. It's still very good if your disease has significantly reduced, because that means you're chemo-responsive. But the dream is that you've got rid of all of it before the SCT. I'll be rescanned before collection, I think, so we know where we stand going into it.

MAN, I LOVE CHEMOTHERAPY!! Chemo might be the best friend I've ever had.

Ding, ding, ding, diggading, ding. Ding, ding, ding, diggading, ding. ICE, ICE, baby!

Emotional

2006-07-24T17:57:00.000-04:00

Two nights ago, Lorraine and I joined two friends in attending an excellent local high school production of Les Miserables. They performed in the city's community center and it was a surprisingly moving and professionally delivered production. I found that every time someone prayed for someone else's life or well-being, I cried a lot. Big, fat tears falling -- me blotting so there'd be no evidence.

And it occurred to me the next day that I hadn't yet spoken much here about my how I feel about all of this. I have this rawness just beneath the surface that I haven't articulated fully to anyone but Lorraine.

Disclaimer: I guess I should preface this first with a reference to my overall state of mind and heart. The truth is that what I'm feeling most is hope, receptiveness, and positivity. I really do feel great about the move to Emory, and I have positive expectations for the end result of my SCT. I'm very grateful that this treatment exists at all, because without it I'd have been given a death sentence. There remains however, in addition to an overall positive outlook, a lot of fear and pain.

I'm afraid. And worried for Lorraine. You can't help but think of death when you're in this situation, even if you don't expect for it to happen. You think of how your partner and family (in my case, Lorraine and eight furkids!) will cope without you. There are so many components to loss. I know, because I lost my first girlfriend after being together for a year and a half. I was wrecked. And I didn't have a mortgage, credit card debt and 8 kids with Amy, as I do with Lorraine. Lorraine and I love one another so much, and we depend on one another so deeply, it's impossible to contemplate either of us alone. You think also of those whom you'll miss -- with the assumption that you'll be in a "missing" state of being, like you're standing outside a window with your nose pressed against the glass. I find myself feeling a surge of emotion upon gazing at Lorraine or any of our pets.

I remember, just after my diagnosis, coming out of a store and feeling the sun's glare full in my eyes and getting struck by such sadness and fear. It felt like loss. I am one of those rare creatures who loves having the sun in their eyes -- in addition to feeling like I'm just a bit more alive when that happens, I'm also pleased that my eyes shine bright olive green in that light. I remember feeling that wonderful joy in being alive I normally feel, I also felt a stabbing sorrow for Lorraine -- if I weren't around, who would stop her from her speeding pace to pause to contemplate beauty and enjoy the purest moments?

I'm not sure if, presented with a friend going down this train of thought, I'd encourage her to just stop that crazy talk and concentrate on the positive, or if I'd let her go to the end of the thought and back again and, having done the inevitable and shed herself of the weight of it, freed herself to contemplate all of her energies solely on the fight ahead, with no option for anything but complete remission.

It's scary though, you know? I'm sorry that I have to go through the misery of the treatment itself, but that's not really the big deal to me. It sucks, but oh well -- the real fear to me is that the treatment doesn't give me a cure.

So I'm fragile. I don't get to talk about it very much at all, because I don't want to upset Lorraine, and I feel like I have to put on a doggedly positive face to literally everyone else in my life. What else are you going to do? Fall into a puddle? I remember saying in response to my initial diagnosis, and the subsequent praise I got for my consistently positive demeanor, that I didn't "have the luxury of falling onto my fainting couch" to bemoan my fate and wonder "Why me??" I feel the same way today.

I'm completely determined to go through this smiling and with as much dignity and grace as I can muster. I also intend to post here regularly, with the support of Lorraine on my bad days. Someone I'm just in awe of, Angie, is religious about posting an update to her blog literally every single day of her transplant -- the good, the bad, and the ugly. And through it all, she's the picture of dignity and grace. I'm not sure I'm going to commit now to daily updates every single day, but that's the [forgiving] goal. You'll understand if I miss a day here or there, right?

I guess the point I'm trying to make here is that, while I'm determined, informed and positive, I also, on a much smaller basis, worry and get afraid and cry.

All I can say is that I better freakin' drop some pounds during this experience, at least. Hear what I'm sayin'?

To Clarify

2006-07-21T11:07:00.000-04:00

I've had a couple of questions about why I'm switching oncologists when I've so loved Dr. Dubovsky. So here's some clarification:

I'm switching for a couple of reasons. First, in communicating with about a dozen SCT survivors, I found that only ONE had had mini-ICE, and that only because the outpatient delivery of his treatment compromised his physical ability to withstand the full regimen. Additionally, with the exception of this fellow and myself, literally everyone else had their ICE delivered inpatient, with a hospital stay of 4-5 days. Dr. Dubovsky wanted to give me some variation on an abbreviated (mini) ICE because it's so difficult to manage the side effects on an outpatient basis.

Further, most of them received their ICE every other week, whereas with Dr. Dubovsky I would receive my treatment monthly. One mini-ICe, wait a month, get another mini-ICE. Versus one full ICE, take a week off, get another full ICE, take a week off, and then get a third full ICE.

Finally, if I stay with Dr. Dubovsky, I can only get my transplant on an outpatient basis through the Blood and Marrow Transplant Group of Georgia, through Northside Hospital. While I liked the folks I met there very much, doing it outpatient would require that I relocate to either a temporary apartment close to the hospital or the Hope Lodge close to Emory and go to the clinic every single day. Every single day for several weeks I would have to get up, get dressed, put on a mask and get in the car to go to the clinic and pay a co-pay, parking, gas, food, and everything else. Lorraine can't take a month off to be with me 24/7. She has to work. But I still can't be alone at ALL, and would need someone to cart me around to appointments and be ready to rush me to the hospital if needed. So I'd have to piece together a schedule of Lorraine on this day (while someone else stayed at our house to care for our 8 animals,) a friend on that day, a neighbor on this other day....it's crazy. Not to mention the increased risk of infection, the managing of the side effects at home with the assistance of someone who's NOT a nurse....it's just too much. Conversely, if I have it done at Emory, considered by most to be a superior institution, I would have the whole thing done inpatient and Lorraine and others could visit me when they're able. No daily gas, co-pay, out of pocket for meds, eats, parking, etc.

So it seems to me to be a no-brainer. I'm indescribably relieved. I feel now that I'm going to get the most aggressive treatment I can in a place that offers the maximum resources in the southeast, and we will sustain less economic hardship. I won't have to waste my finite energy getting dressed and putting on make-up (because I do that no matter how sick I am -- as an old-school femme I'm that kind of girl) and then driving around every day to get to a place where I have to take 2 elevators to even get to the treatment before returning home again.

I am sorry to lose Dr. Dubovsky, but I just can't compromise my treatment and economic and personal well-being in order to accomodate the method of delivery employed by his organization. He's wonderful, but he's just not the right guy for this moment in my cancer life. Maybe afterwards...

Hope this answers any questions!

Things will really speed up now!

2006-07-20T16:51:00.000-04:00

I'm pretty excited! I will definitely be moving forward with switching my treatment to Emory Winship Cancer Center.

I meet next Thursday with Dr. Waller, the Director of the Transplant Center. He will be my doctor, and all of my treatment will occur within the center with the support of the transplant team. At the time of that meeting, he will be prepared with recommendations for my treatment, and will in all likelihood want me to be admitted the following Monday for a second cycle of ICE, a full treatment requiring a hospital stay of 4-5 days. I'll have a week off, and then go back for a third cycle, also inpatient, a repeat of the second cycle. Stem cell collection will follow that, after which I will be admitted for several weeks to get high dose chemo before the stem cells are given back to me and I'm watched there until my counts are back up to a level that allows me to safely leave the hospital. I will have a private room, which will have a seat that opens up into a bed for any guest sleep-overs!

I'm so relieved, it's almost overwhelming. My present oncologist was doing a mini-ICE followed by 3 weeks off, then another mini-ICE. I just need more, and faster. I'm so happy that I'm going to see a ramp-up in the action taken to get me as close as possible to remission before the transplant. I feel so much safer, it's hard to describe. I said elsewhere that I feel like I've been fighting alone and the cavalry just arrived!

In other news, I got interviewed today by a lovely woman for an article she's writing for Women's Health and Fitness magazine on women who blog about their health and weight loss! Once she's written it, she'll forward it to me and I'll post it here! Last year I got interviewed for a book on weight loss but, alas, I never got the copy the writer had promised me I'd get from the publisher. I should ask her about that! I'd have to dig up the name of it. I think I will so I can get a copy!

So things are moving along. I'll update when I know more.

I'm going to Emory

2006-07-18T23:58:00.000-04:00

Hello from the infusion room! (God, I love my laptop.) Today's appointment was for a visit with my Nurse Practioner and labs: urine and blood. My CBC counts were excellent across the board. Another 3+ blood level in the urine, which is awful and necessitated another visit to the infusion room for more hydration and Mesna, the bladder-protectant medicine. I did learn that my blood is negative for protein, which reflects the fact that I AM drinking lots of fluid at home. So at least that was validating.

This prompted a brief conversation with my oncologist, Dr. Dubovsky, who referred again to the difficulty of putting me on a full dose of the ifosfamine because of the hydration issue. So HOSPITALIZE ME FOR 3-4 DAYS!!!

Between his reception area at one end of this very long cancer center, and the infusion room at the other end, I made up my mind that I was going to pursue a second opinion at Emory's Winship Institute. A couple of phone calls later, my records were being faxed by Dr. D's office to Emory, and I'm to expect a call back from someone on their Transplant team regarding an appointment right away.

I'll keep you posted, but there could be some changes right away. I love my present oncologist, but I just can't allow my salvage chemo treatment to be compromised because of this center's method of delivery. My only goal is to get rid of this cancer, and I need the biggest guns necessary to do it. I also can't waste so much of my finite energy fighting to get this done inpatient. If Emory does it inpatient -- and I believe that they do -- then that piece is a done deal, with just the selection of an Emory-affiliated oncologist remaining. If I'm not mistaken, this person would oversee my final ICE treatment(s) before the SCT process would begin.

Oh, in other news, on Thursday I'll go to the cardiologist to get a 24-hour heart monitor so they can check out my irregular heart beat. I really do love my current oncologist, I'm just not sure he's the right guy (given Atlanta Cancer Care's outpatient methodologies) for this moment in my cancer life. AFTER the SCT, great! I'd love to go back to him, because he's passionate, driven, and honest. (And ACCESSIBLE!)

The priority right NOW, though, is just to do the very best we can with this one opportunity I have for a cure. This is it for me. I'm not fucking around with this. I'm not going to look back on this with any "if only I'd..." or "why didn't I...." This oncologist said it himself: "Sarah, we're not going to get another chance to get this right."

I'll keep you posted.

Greetings from ICEland!

2006-07-16T22:43:00.000-04:00

Well here's a long overdue blog update on my life in ICEland -- as in life in the land of Ifosfamine (with its accompanying side dish of Mesna,) Etoposide, and Carboplatin. Mm, mm, good chemo yumminess!

Truth be told, ICE pretty much sucks. That said, my onc started me out with the 2-day regimen, not the 3, as he was concerned about toxicity and the effect of 2-3 cycles of the very harsh ICE on my marrow's ability to produce stem cells. I was devastated when I heard -- on the morning of my first day of the salvage chemo, no less -- that I was getting the abbreviated, not full, version. I cried, then pulled myself together to face the first day of chemo with my game face on. At home, I cried some more, and then, after gaining valuable insight from the SCT vets over at the HD board, gathered my wits and gumption and got ready to lobby my case the following day. The next morning brought -- you guessed it! -- more tears, as I was sharing my side effects and concerns with the absolutely amazing nurse practioner, Marcia. We just love us some Marcia! She's compassionate, thorough, communicative, fully present, and damned if she doesn't touch base with me literally every day! I find this simply astounding.

Anyway, so I was talking to Marcia about my grave concern about getting the mini-ICE -- as if I need a mini-ANYTHING at this stage in my fight -- and sharing the email I'd sent to my oncologist (her boss) the night before on the same topic. She told me that apparently there had been a number of conversations about which ICE regimen to give me, and that he'd gone with this one to start, with the thought that we could amp up the next cycle as long as I was able to manage this level. HA! I spit on this mini-ICE! I've actually managed it beautifully, if you don't consider the pesky matter of tons-o-blood in the urine! Yep, the ifosfamide is a terror on the bladder and, while the Mesna is an effective bladder protectant, it is not sufficient if you don't drink enough fluids. In addition to getting 2 liters of hydration in the infusion room, I was drinking at least 90 oz. of water a day. Not enough. Now I know why all those ICE/SCT vets got their ICE treatments inpatient! They could manage the hydration.

Oh! Also, I learned that ifosfamide does a job on the emotions, making you much more emotional and in some cases -- and pardon me, this is a medical term here -- downright crazy. So I had that working against me in the tears department.

ALSO working against me was the fact that I was premenstrual! I know -- here's that word again -- crazy. So I go in on Day 3 for my labs. I give my urine, and I'm pretty proud of it, if I do say so myself. Day 2's pee pee was a scary thing, so I was mightily pleased when I saw this light, wholesome sample. Nope. Apparently a 3+ on the "presence of blood" scale, which is quite bad. So I get hooked up and get a liter of fluid in the infusion room before giving another sample. I'm sure I'm going to do well now. I sashay into the ladies room (and yes, I am an unabashed sashayer,) and tinkle away with a smug smile on my face, sure that NOW I'm going to have a lovely, pure sample to give. I lifted the cup up....and that's when I discovered the arrival of what I'm sure will be the last period I'll ever have.

So I had cramps in addition to all the normal ICE side effects: fatigue, pain, nausea, headache, irregular heart beat, bad taste in the mouth, and that god-awful chemo-hangover feeling. At least I knew I wasn't out of my mind with the crying! Oh, and it's supposed to cause diarrhea in 99 out of 100 patients. I would be the 100th, it seems (leave it to me!) as I had some pretty bad constipation which has been eased by Senna (hello, old friend.)

That same day I started Neulasta, another old friend. Man, does that stuff make me hurt! As I did last year, I enjoyed again that "just struck by a truck" feeling. I do not want to sound ungrateful, though -- I thank God that Neulasta exists, for without it, we cancer patients would be in a very bad way indeed. Neutropenia is not a good place to live.

As for how ICE is for me, I'd say that -- so far, at least -- it's actually similar to ABVD, but just really amped up. Yeah, I think it's like a really magnified ABVD....plus the bladder thing. I do feel a certain - AWARENESS of my bladder now, which can't be good. I am up to 110 oz. of water now, and I do make a point of not holding my water. The nurses warn not to hold, as you want that ifosfamide out of your system just as soon as you can move it; you do NOT want it sitting in your bladder at all. It's no joke, that ifosfamide.

Now, regarding ICE Round II, word is, I'm going to get the full ICE, delivered over 3 days, and with some of it 24 hours and delivered via pump, as it will again be given to me outpatient. (Unlike literally any of my pre-SCT ICE peers, who all were watched closely on an inpatient basis. When I meet with my onc I'll ask him why they insist on doing it all outpatient.)

For those of you for whom this was all a review, I apologize. I have updated the Hodgkins message board daily, so they've gotten the blow-by-blow, with lots of details I didn't share here. If, however, you're just aching for those details, or if you're researching SCTs for your own upcoming experience, I'll share this link, and this, and this. To you I apologize for not fully sharing here; I just had finite stores of communicative wherewithall, and they got it on the board.

Thank you to all those who've commented, emailed, and given support. You really just have no idea how much it helps. I thank you from the bottom of my heart.

Oh! And to those who have just a little more support to give, this incredible woman is in the throes of her own SCT experience right now and could probably use some more love, if you've got any spare to share.

ICE, ICE, Baby!

2006-07-10T21:59:00.000-04:00

Ding, ding, ding, diggading ding. Ding, ding, ding, diggading ding. John, an absolutely brilliant online friend from the Hodgkins Board wrote this for me:

STOP! Collaborate and listen
Sarah's back with a brand new injection
Lorraine grabs a hold of her tightly
Flow through her veins both daily and nightly
Will she ever stop - HELL NO!
Turn off the lights and she'll glow
To the extreme she rocks LIFE like a vandal
Lights up her world and burns Hodge's ass like a candle...

Isn't that awesome?? OK, so Vanilla Ice never was my fave, but how do you not love that song??

So tomorrow's the big day. Day One of ICE. To be followed by Day Two of ICE. The first day should be a six-hour deal, with the next day an hour or so shorter, if everything goes as planned. It's late now and I'm pretty exhausted after my esophageal dilatation today, preceded by a Teach session of ICE.

This weekend has been amazingly hectic. We got the furniture delivered on Saturday, and immediately set about preparing the house for Lorraine's family. We hung every picture, placed every lamp, sculpture and vase, and cleaned like fiends. Sunday evening brought a bright spot with a gathering in my honor of my coworkers at the interim job I had as a design consultant.

The house looks pretty great -- it's amazing to think of it's transformation since Saturday. Poor Lorraine has borne the lion's share of of the work because between my port implantation surgery of Friday (to which I responded pretty poorly, with a lot of pain associated with the general anesthesia to which they had to resort because under the twilight I kept scratching my face and neck) and today's surgery (also with anesthesia, but with a lot of pain resulting from the procedure itself) -- I've just been really struggling to pull my weight. I've been instructed to do NOTHING, but that's just not fair when there's so much to do.

So tomorrow morning Lorraine and our sweet friend Ginger will take me to chemo at 9:15, Lorraine will leave at around 10:30 to pick up her mother, sister and her sister's two kids from the airport, drop them off at the house, and then head back to finish out chemo with me. I should be done around 3:30, I think.

Happy thoughts and good vibes welcome.

The Skinny on the SCT

2006-07-05T10:36:00.000-04:00

Alrighty. Lorraine and I went yesterday to The Blood and Marrow Transplant Center of Georgia, which will perform my stem cell transplant through Northside Hospital in Atlanta. After going over my physical/health background with the Nurse Practioner, we spent about an hour and a half with the fellow who will be my primary SCT doc.

The long and the short of it is that he wants me to start right away. As in this week. First I have get my esophogas dilated (a procedure I need regularly now as a result of having drunk lye as a child) and then I have to get another port-a-cath put in. I have to decide whether I want to go directly for the apheresis catheter (which looks like an octopus hanging out of your chest, apparently,) or first get the completely implanted type of port (like I had last year) for the chemo I'll get over a couple of months prior to the SCT and then put in the apheresis catheter right before I'll need it. I'm leaning towards the latter, because the apheresis cath is much higher maintenance (dressing changes, etc.) and it would prohibit me from swimming in the pool or taking a bath. Of course, this plan of putting in two different types involves adding two more scars to the collection on my chest instead of one....but I'd rather have a better quality of life leading up to the SCT.

I should probably back up and give a more detailed explanation of the actual stem cell transplantation procedure than I have. If you click here, you'll hear a great synopsis of the thing from someone with non-Hodgkins who also had an SCT. There have been a couple of advancements since his experience, but his explanation will give you a great idea of what I'm to experience. (Big wave going out to my dear friends Michie and Ginger. ;) )

Here it is in a nutshell:

1. Induction Phase/Salvage Chemo. The purpose of this is to get rid of as much of the existing cancer as possible. The goal, of course, is remission, but we'll proceed even if some cancer is still present -- but the better I respond to this salvage chemo, or "conditioning chemo" the better my long term prognosis. How I respond to this chemo will tell us more about my survival than anything else, so the goal really IS to achieve complete remission. There are different kinds of salvage chemo, but the one I'll probably be doing is called ICE, an acronym for the drugs Ifosfamide, Carboplatin, and Etoposide. During this induction phase, I will have two cycles of this before beginning to the SCT process, at which point I'll have a third cycle.

2. Mobilization/Harvest Phase. After getting some tests to ensure that I'm healthy enough to withstand treatment, Lorraine and I will get some training on how to care for me during the upcoming SCT stages, and then I'll get that third cycle of ICE, followed by numerous Neupogen shots, to put my marrow into overdrive so I have the maximum number of stem cells to harvest. During the harvest, I'll get hooked up to a machine which will suck out my blood, extracting just the stem cells, and then sending the rest back into me. Then they'll sort through the stem cells to make sure that they're saving only those that are cancer-free. What we're doing here is saving the maximum number of clean stem cells so that, after I've been pummeled all to hell by the high dose chemo, they can put those stem cells back in so I am able once again to withstand infection and fight the cancer and other evils. The high dose chemo would kill those stem cells and likely kill me if these healthy stem cells couldn't be reintroduced afterwards, because it will just destroy my marrow, rendering it unable to reproduce the stem cells which will grow into healthy white blood cells, red blood cells, and more. So the apheresis process is really a life-saving measure.

3. Conditioning Phase/High Dose Chemo. At this time, they'll hammer me with high dose chemo (most likely busulfan) which will first be delivered orally, then intravenously. Fun stuff! The purpose at this time is to completely wipe out my immune system so that when they deposit those nice healthy stem cells we'll be starting with a clean slate.

4. Engraftment Phase. I'll sit in a room hooked up to a machine which will pump those juicy stem cells back into my bloodstream. Apparently this is quite an odiferous affair, with the pungent odor reported as either very, very garlicky, or exactly like creamed corn. Yummy! The next several weeks are supposed to be the most hellish, with pain and misery aplenty. The advice I've gotten from others who've experienced this is to make morphine my friend and make no effort to remember any of it.

The day the stem cells are pumped back into me is called Day 0. From Day 0 through Day 20, I'll be getting IV fluids, painkillers, and more with the goal of getting my counts up to normal around Day 20. At this point, I'll be safe to go outside and mingle with my fellow humans. My activities will be somewhat restricted, and my physical abilities will be at close to nothing, but I won't be at such risk of infection.

The timeline for this whole thing is pretty much 2 months of salvage chemo, another 2-4 weeks of mobilization/conditioning chemo, then a month for the SCT itself. Then months of recovery.

The mortality rate of this procedure is less than 5%. The success rate, depending on who you ask, is either 50% or, as my primary SCT doc says, 50-70%. Again, the key to long term success is a great response to the induction chemo. He said that two good things were present in my case: one, my relapse is localized (in one area only) and two, I don't have any B symptoms (which indicate more aggressive or advanced disease.)

I hope this explains the process better for those who've been wondering what the heck all of this means. I suggest you check out this guy's experience with it for an explanation of his experience.

I'm supposed to hear from my oncologist today with info on the next step.

SCT Doctor Tomorrow

2006-07-02T12:44:00.000-04:00

As you know, I got the SCT news from my onc and Dr. Armitage on Thursday afternoon. Friday, when I was at work, I got a voicemail from the Blood and Bone Marrow Transplant folks telling me to be there Monday morning at 11:45. When I called to try to arrange it for another day of the same week because Lorraine was having such a hard time getting off work that day, they told me that I'd have to go into the next week and that they'd already heard from my oncologist that I didn't have a week to spare and that I really needed to make this Monday happen. I had been holding on pretty well until I heard that.

So Monday at 11:45 it is --- and Lorraine will be there. I'm told I'll be there for 3 hours, 2 of which will be spent with the SCT doc. Afterwards, I'll meet with the coordinator, who will, I guess, coordinate the next steps. I know I'll have to have a PFT and an ECG to confirm that my lungs and heart are able to withstand treatment (I know they're fine) and then I'm sure I'll be on to another port implantation and maybe a double bone marrow biopsy? If I'm to have a double BMB, I'm going to request that they perfom it at the same time they put in the port, so I'm sedated, as my last experience was pretty excruciating. Tomorrow I'll see about getting a prescription for Wellbutrin and another for Ativan, to address the emotions and anxiety I'm experiencing. Something to sort of "warm the waters" into which I am now leaping, as it were.

Yesterday Lorraine and I bought a bunch of furniture for our new (larger!) home today -- that interest-free, no payments till 2008 option is much appreciated! It was half retail therapy and half an effort to get our new home prepared for the SCT chapter and beyond, when I won't have as much energy for, or interest in, interior design. I think for Lorraine it was important to feel that since I'm now going to be entering of being sort of housebound, the house will be prettier and much more comfortable for me. She's such a sweet, sweet woman, my Lorraine. I'm so lucky.

We were terrified about the financial impact of this, since I'll be out of work for a while and we'll have to carry my $400/month COBRA payment. (And THANK GOD for that excellent coverage -- while my maximum out of pocket increased to 8 grand, there's still no ceiling on the insurance company's payout for my care.) I'm going to get up on my soapbox here and say that I find it absolutely abhorrent that, after 8 years together, Lorraine is unable to include me in her (excellent) medical coverage because we happen to be a 2-vagina couple. Sorry if that offends, but it (and a laundry list of other inequalities) really burn me. At any rate, I fully intend to utilize all resources at the Blood and Bone Marrow Transplant Center to get all the financial help I can get. I'm thinking Social Security Disability (unless my defaulted student loans put the kabosh on that) and welfare, if it's necessary and not too hard for me to get. Lorraine is going to take a bunch out of her 401(k) so we can afford to stay in our new home. We're a 2-income family, but really, we could still manage to pull it off if we didn't have the COBRA payment in addition to both our share of the upcoming medical/prescription costs and the additional expense of all the travel to and fro to treatments/appointments, etc. I know the Lymphoma Research Foundation will give $500, but that's just the tip of the iceburg.

Interestingly enough, "tip of the iceburg" is exactly the expression my onc used when explaining why this 3.6 x 3.9 cm supraclavicular mass is heading me into an SCT. Life is pretty freaking crazy, isn't it?

I am very grateful for my blessings, and I know that Lorraine and I will get through this. I've been trying to prepare her for what lies ahead, but she hasn't been ready. I want her to know a lot more than she does before Monday tomorrow's appointment, because I don't want her experience to be all emotion and less learning. I want to prepare her a bit, so she has some idea of what she wants to know more about, and doesn't leave raw and wondering how the hell it's all going to happen. I'll be pretty raw myself, I anticipate, and I've been doing my homework!

Anyway, I wanted you all to know that I'm ok, overall. I'm all kinds of things in addition to that -- but I'm holding on. I feel anxious about how it's all going to happen and the timeline and all that, but all that will be revealed on Monday, I'm sure.

I'm Having a Stem Cell Transplant

2006-06-29T22:31:00.000-04:00

I need to make this post sort of brief. I'll post again as soon as I can.

It turns out that radiation is not going to be enough. My situation is worse than that, and, as my oncologist said to me today, "You will only have this chance to get this right." The relapse is bit worse than I'd thought, and the "curative" approach now -- that is, if I want to be cured once and for all -- is to have a Stem Cell Transplant.

My oncologist consulted on my case with Dr. James Armitage, one of the leading lymphoma experts in the U.S., as I was sitting right there. Dr. Armitage said definitively, after hearing my history, that an SCT (stem cell transplant) was my only hope for a cure. Everything hinges on the second course of treatment, when the first has not effectively done the trick. In my case, I responded beautifully to ABVD chemo, handling treatment quite nicely and, for a Stage IIIB patient, reacting ideally, achieving complete remission after 3 of 6 cycles. (3 of 6 months, that is.) I was still in complete remission after chemo's end. Hooray!

At my very next scan, however, at the end of November, and less than 6 months out of treatment, I had a positive PET. One node in my chest lit up a bit (not drastically, but still a bit) and it was 1 cm. Same thing happened at the end of January. Then a CT scan (my first since my diagnosis - shame on my Baltimore oncologist!) supported the PET scan results in early February.

Now, in June, I have one mass of 3.6 x 3.9 cm which extends from the outside of my right clavicle to beneath it and reaches down into my upper chest. It registered a 15.5 SUV (standard uptake value,) on the PET, when normal would be more like a 2. There are also numerous tiny nodes appearing throughout my chest. The radiologist says that they are "insignificant" now, but damned if they were absent in January. I'm not "bulky," meaning that I do not have a mass of 10 cm or larger -- I never did -- but my disease has always been present most in my chest. Hodgkins differs from Non-Hodgkins in its progression through the body, among other things. Hodgkins -- hereon to be referred to as "The Hodge" -- typically travels in a methodical, predictable pattern from north to south. So my neck got all gopped up with the shit (I ended up with a malignant necklace, thank you very much) before it moved into my chest, a larger area. Like I said, I did not develop "bulky" disease, so I just had lots of smaller masses, and then it moved further south into my abdomen and pelvis, where I had a couple of small masses. I recall being COMPLETELY freaked out to discover that I could feel one in my lower groin, just left of my own little slice of nirvana. Holy crap, was THAT disconcerting!

Right now I'm looking at recurrent disease in my neck and chest....and a Stem Cell Transplant to hopefully put an end to it entirely. The hair will be gone, nails/toenails likely to follow, mouth sores and shingles, debilitating constipation, lotsa crazy nausea, loss of appetite (and therein lies the silver lining! ABVD almost always results in weight gain from the steroids -- but ICE makes you drop a bunch! Woo hoo! Like a spell at the spa, I'd say.) There's more, but I'd hate to spoil the surprise.....gotta keep up that readership.

I sound flippant. I'm really not. I feel afraid, worried, guilty, and resigned all at once. I'm just trying to hold onto some sense of optimism and my own personality while I sacrifice my body to this experience.

It sucks like holy hell, but I am left without any choice. It's just a real sonofabitch, really. Ooh! Cursing! I keep threatening Lorraine that I'm going to start cursing like a sailor now, and every other word is going to be the F word. But that's not bloody likely, really. ;)

The Day Before the New Oncologist Visit to Discuss Relapse

2006-06-29T00:38:00.000-04:00

I just posted this on the Hodgkins board that's been my lifeline, and I just posted this update there in response to a supportive call-out on my present state.

Aw, Judy, you're a real pal for posting this. I'm ok. Doing much better physically, still having mini meltdowns emotionally. I'm still vacillating between sadness and anxiety over my ongoing state of health -- and life! -- and anger and resentment over this relapse's intrusion and disruption of my life together with Lorraine. We've just entered Chapter Two in a new state, in our new beautiful dream home (with its accompanying larger mortgage,) with me still on COBRA and with a shitty job with shitty pay. Facing upcoming treatment for a relapse, it's simply terrifying. Looking in the eyes of my pets earlier, and the face of sleeping Lorraine just now, I am so afraid of not beating this. I can't leave her with this mortgage and the care of 8 pets, and all alone without me in a state far away from her family. We really love one another.

I hate to be this big melodramatic drama queen -- but if I can't let my guard down and show my fear here, then where can I?

I wish that I'd heard some results from my onc today, because I sure as heck would hate to get the definitive word from him tomorrow at our appointment to discuss relapse treatment. I'd rather get the final word over the phone, as I did from him before the biopsy. I was calm self-contained, and pragmatic.....and after we hung up, I was able to react to the news freely, in (and in the backyard of) my own home.

I know it's not the end of the world, but I'll be damned if I don't feel as if I'm in great peril. It's doable, I know that. It's localized and therefore easier to to target with focused purpose. I am absolutely up for the fight. I have no choice. I just hate that I'm in this position again. I keep reminding myself that I am one of many, and that very often the second time's the charm....and sometimes that bolsters me and sometimes it just makes me sad or angry.

I'm sharing here more than I've shared with anyone. I thank you for that ability.

And thank you, Judy, for reaching out to me. You're incredibly supportive -- across board lines -- and I sincerely appreciate it.

Thanks for letting me vent, everybody. The bruises are still purple, but they're not the only evidence of pain, as you all well know, regretably.

I'll update again once I know more. *insert woogly/wobbly-faced smiley here*

The Day After the Biopsy

2006-06-27T11:28:00.000-04:00

Alright, so it's done. I ended up having a core biopsy (and two fine needle aspirations, just for kicks -- the radiologist said they'd be good to show "flow" I think.) What started out as a mediastinoscopy became a CT-guided biopsy once they saw that puppy sticking out over my clavicle, and then the CT-guiding became ultrasound-guiding instead. So that's what I had. I have real concerns about the core biopsy's adequacy in identifying HD, and voiced that to my onc via email. The following explains it in greater detail:

Core biopsies are usually inadequate to diagnose properly and classify Hodgkin's lymphoma. It is usually much more accurate and informative to have an open biopsy (also called a surgical biopsy), in which an entire abnormal lymph node is removed. This procedure can usually be done under local anesthesia, but a general (whole body) anesthetic may sometimes be needed and a few stitches are often required.

In response to my emailed concern, my onc replied, "Principle: Do least for most gain. If the biopsy is + we have saved larger intervention. If negative - out it comes." He will try to expedite the results and we'll take it from there.

Finding a vein was a major ordeal -- it took over an hour of rooting around -- in addition to the hematoma on my neck from the biopsy, I have 3 on my arms from all of the efforts! Large purple mounds. I had a port for chemo, but all of my blood draws had to be taken from my arms per my insurance, so now it's really hard to get anything at all. It was at this point that Lorraine broke down; I think I referred to "battle scars" when the nurse told me a couple of sites were going to bruise badly, and that was sort of the breaking point for her, the poor sweetie. Another point was when I felt a little nauseous from the saline taste and its reminder of chemo. It just really hurts her to see me going through any of this, and she's a bit of a control freak, so feeling helpless to protect me or fix this makes it all the more difficult and painful for her.

Yesterday was a little rough....especially since I'm so concerned that we're not going to get the results we need from the day's efforts. I saw the sample from the core biopsy, and it seemed sort of big -- and the radiologist said that she really felt we'd gotten what we needed. The fine needle biopsy she did just because she could -- and also she said it was good for the "flow" mentioned above. (At least that's what I think she said.)

With the core samples (she got two,) I asked about their efficacy in securing any Reed-Sternberg cells, and she said that they get a sort of column of cells, so the Reed-Sternberg cells have room to be taken in also. But all of my prior reading, and the conversations I'd had pre-biopsy last year with my surgeon and post-biopsy with my Baltimore oncologist tell a different story.

Anyway, this part is done. I'm really hoping I don't have to go back in -- but if I do, while the additional scar to remove this honker on my neck would be most unwelcome, I would be thrilled to get it cut out since it IS the single localized point of relapse, and then radiate the surrounding area(s) to the extent the radiation oncologist found necessary.

I have an appointment with my oncologist on Thursday, and another with a local radiation oncologist this Monday.

So things are moving along.

Update!

2006-06-22T17:03:00.000-04:00

Wow! I was so surprised to come back here and see all the responses! You guys are amazing, and I thank you from the bottom of my heart.

Great news! My onc misspoke!! My mass isn't 3 1/2 inches -- it's 3 1/2 centimeters! I am completely positive that that's what he told me on the phone, because I had a hard time getting past that when he was talking to me. Also, I found it curious that he'd speak in inches instead of centimeters, but chalked it up to his, being South African, desire to speak in terms more readily understandable to an American. Anyway, his office faxed to me today the radiologist's report, and I was so happy to see that it's not almost 9 cm, but instead a 3.6 x 3.9 "large supraclavical mass." It's in my lower neck, upper chest. I was hoping it was just in the chest, so maybe I could get away without radiation to my neck, but now I know that's not going to happen.

I'm just happy that it's not as aggressive as I'd thought, and that I might be able to get away with a bit less radiation than would have been necessary for a 9 cm mass.

I'm feeling fragile and worried, but pretty positive overall. While I responded beautifully to chemo I couldn't hold onto my remission, so things didn't go according to plan. There are plenty of folks who have to fight more than one battle in order to win the war, so I don't feel singled out or victimized. It sucks, and I hate that I'm in this situation and Lorraine and I have to go through this again, but the reality is that not everybody beats it the first time. Somebody's got to fall into those "minority" numbers we all read about back when we were checking out our odds after getting diagnosed. I knew it could happen to me, I just hoped it wouldn't and believed for a while that I'd fallen into the happy majority. I know that I'm not alone, and that helps so much.

My real fear is over finances -- I was hoping to secure a better paying job but will have to wait until treatment's end since I'll have a 3 hour round-trip drive to get my rads. You usually get them 5 days a week, don't you? I definitely need to do my homework on rads, since they're a new thing for me. I'm very grateful that my current employer will work with me on my schedule so I can get to my treatments before work.

Lorraine and I both thank you from the bottom of our hearts for rushing to my side with such loving support. You're like a warm blanket on a cold night, and I am so very grateful.

Round II

2006-06-21T22:08:00.000-04:00

I've relapsed. Between January (and November also) the active node has increased from around 1 cm to almost 9. I now carry a 3 1/2 inch mass in my chest, according to my new onc, who doesn't know why my previous onc wouldn't have biopsied it back in February, when it had, over a period of just over 2 months, shown up on 2 PETs and one CT scan.

Bottom line: I go in for a mediastinoscopy on Monday get it biopsied, and on Thursday I meet with my new oncologist and a radiation oncologist to discuss treatment. It's looking like I'm going to get radiation, as the relapse is localized, rather than systemic. (It's isolated to one spot, rather than showing up all over the place, as was the case at the time of my diagnosis.) If it were systemic, we'd be talking about a stem cell transplant. Just to cover all bases, and being the thorough sort of lymphoma guy my new (and more trustworthy) oncologist is, he's consulting with the stem cell transplant people also, just to make sure that rads are the best way to go. He says radiation is the first line treatment in a relapse case like mine, though.

We're in our new house now, and in the throes of unpacking, getting the pool installed, and preparing for the arrival of Lorraine's family in 2 1/2 weeks.

It's all a lot. I'll be back later to post more. I know this is a very dry entry for the delivery of such awful news. I just wanted to get it up here for now -- I'll be back later to flesh out the rest of it.

Woo! Good stuff!

2006-05-25T21:26:00.000-04:00

Well, with over a week having passed, it's high time I shared an update! Sorry - it's just been a very busy time.

I'll start with weight loss. Last week the scale showed a pound loss (so 10 pounds since restarting,) but it's TOM time, so I know I'm carrying some extra water. Eats are aces -- I'm doing especially well on that count, I'm happy to report. Exercise has been tougher, with some challenges presented by my new job.

Two weeks ago I started training as a Designer for Norwalk Furniture. Regular readers will recall that the store manager recruited me when Lorraine and I were buying furniture. I decided to shelve for the time being my search for work in Human Resources and/or Recruiting because all of the available work requires a daily commute of at least 2 1/2 hours a day, vs. a total of maybe 12 minutes, round trip, for Norwalk. So far I'm finding it interesting, albeit a real departure from my profession of recent years and a return to work of years gone by. I'm also finding it exhausting! I'll get used to it, though. Starting a new job is always hard.

In other news, the house is coming along beautifully! Look for more pictures soon. The hardwood floors are in, the landscaping is done, and so much more. There's still more painting to do, some finishing cosmetic touches, and the appliances still need to arrive...but we are most definitely coming along! The house will be ready for closing June 16th, but we're opting to close about a week after that.

At the time of closing, the pool guy is going to begin to install the pool, above, in our back yard! How exciting of that? It's a small one, at 14' x 30', but with just the two of us, that's great! We want to keep plenty of green space for little Louie, so when we do laps in that lovely pool, we'll just have to do more of them. We're having the guy install 4 deck jets as well, so we'll have a nice, audible water feature to enjoy when we're sitting on our back porch! Ours will differ from the one above in the positioning of the steps -- they'll be entirely within the pool and on the near side of the pool rather than the far side -- and we're not getting either the slide or the ladder; instead we're getting an underwater bench installed on the far side, and we're getting those festive jets! Also, it will have its own internal vacuuming system and use salt water, so there's very little maintenance.

We're both just pinching ourselves in amazement over this house. We just can't believe it's going to be ours. Now I just need to start selling a lot of furniture! I WILL enjoy that employee discount in a few months - since we pretty much need to furnish the whole house!

Gotta say, I'm really looking forward to getting up in that gym we'll have. All of our exercise equipment will be up there, so I'll have more than just the exercise bike to work out on; I'll have the elliptical, the treadmill, the Cross Bow, the stepper, and the free weights. Since it was 102 degree today, and it's only May, I am very grateful that we have a separate air conditioning unit and a ceiling fan up there in that bonus room!

Lorraine has strep throat and I'm amazed that I haven't gotten it from her. I'm to expect to have a deficient immune system now. (I guess getting treated for advanced stage cancer of your immune system will do that to you!)

Speaking of cancer, since we were finally able to get caught up on both of our COBRA premiums, I can now finally visit with an oncologist here in Georgia. This first meeting will be with a doctor recommended to me by a fellow lymphoma (his is Non-Hodgkins) survivor here in Atlanta whom I "met" at the Hodgkins forum. This doctor already has my records, so he'll be up to speed on my history and can make some recommendations regarding follow-up. I'm excited and anxious. I'm overdue for a follow-up scan, and I'm so worried and scared not knowing what's going in my body.

[Recap on my recent history: I had a clean PET at the halfway point of chemo, then another one after chemo's end. A few months later, I had great bloodwork and no palpable nodes at my first check-up with my Baltimore oncologist. After that, I found what I mistakenly thought was a swollen node on my clavicle, moved up my PET scan, and it turned out that I didn't have one there, but did in my chest. Oncologist said to rescan in 2 months. 2 months later, at the end of January, I had another PET, which lit up in the same way in the same place, and my oncologist had me follow it up with a CT scan, which also showed the active node, 1 cm big. She wanted me to rescan in another 2-3 months, which I did not, since we couldn't afford both COBRA payments and Lorraine needed care first for the heart problems she had resulting from her Lyme Disease of last year. Now that I'm covered, I'm moving forward with my first consult, and may have another one before selecting a new oncologist between the two.]

So I'm pretty eager to meet this man next Thursday, and to getting some current scan results. I very much look forward to getting feedback from a new oncologist. (I rewrote that sentence 4 times in an effort to avoid gross understatement, ultimately reverting back to the original because I just don't even have the language to adequately convey what I'm feeling.)

So it's a crazy time, with a lot going on. I feel, even as there are all of these new and beautifully positive developments, emotionally sort of stunted by the uncertainty of my remission. "Watch and wait" is a bitch. I guess it's ALL a bitch really! Diagnosis is no cakewalk, nor is a confirmed relapse. In my experience the "easiest" is the actual treatment, since there's a definite focus for your physical and emotional energies and your single purpose is fighting the beast. Removing the element of Fight, both certainty and the absence of it present different flavors of hell.

I just keep concentrating on my sweetheart, that beautiful house, that lovely pool, and the challenge of a new job. Oh yeah, and losing a buttload of weight. (Oh yeah, THAT!)

On Choices, Motivation, and Not So Much Liking the Bob Story

2006-05-15T19:41:00.000-04:00

Hey, I lost 9 pounds last week! And Lorraine lost 5!

It seems that not everyone was as enthusiastic about the below article as I, as evidenced by the two comments I received displaying mixed impressions.

Anonymous said "I'm afraid that I disagree with that article Sarah. I do not think anyone deserves to be called a 'piece of shit', just because they are overweight. As for motivation, well you either have it, or you don't, but reading some bigot's article isn't going to make anyone thin. It takes a lot more than that. Just because you are managing to lose weight, please don't be cruel to the rest of us, who would dearly love to be thin, but find it impossible to put in the massive amount of time, money and effort that it takes to get there."

Ouch! Well, you see Anonymous, that's where my disclaimer comes in. I knew the guy's an arrogant, blunt, completely unlikeable jerk and I did warn of his testosterone. I sure wouldn't make him my best friend! The thing is, I don't really feel like I HAVE to like him in order to get some very important and relevant messages from his article, though. And I certainly don't feel like I was in any way CRUEL to overweight people for posting it, although I'm very sorry that you found his words personally hurtful.

His words struck a chord with me, and with the two others to whom I showed it before posting it here. I sincerely believe you can still find value in something that rubs you the wrong way. In fact, sometimes a bluntly delivered message can go a lot farther in effectively informing the person who most needs it because it goes right to the exposed nerve. I guess the missing component in my sharing this guy's message is that I have no way of knowing if you're ready and willing to hear the parts of this article that might potentially have value for you. I can only put it up here and hope it provokes productive and introspective thought on the part of some. Better some than none!

Those who are familiar with my writing here and elsewhere know that I would never intentionally hurt anyone, nor do I condone calling overweight people "pieces of shit." I'm sorry you felt that I did, Anonymous. I disagree with YOU on a number of counts as well. Firstly, I don't agree that you either "have motivation or you don't." Where do you think you get it? For more on my thoughts on motivation, see below.

Secondly, I do not agree with you that losing weight requires the investment of money or time. But effort? Yeah, I think you hit that one on the head, as did the testerone-heavy guy who wrote that article.

Anonymous, I don't want to call you out or hurt you -- but I do feel called-upon to address your voiced perception of me as a "cruel" person who, because she "is managing to lose weight," has become insensitive to the feelings of others who are overweight and struggling, thinks reading this guys article is going to "make anyone thin." To the contrary, I think the only way anyone loses and keeps off any weight at all is through hard work, permanent behavioral changes, and the making of one healthy choice after another, along a long road requiring the kind of ongoing, longterm focus that comes of honest and sometimes difficult introspection.

Kimberley, a dear friend for whom I have enormous respect and affection, said, "I have conflicting feelings about this article. On the one hand, I know that nothing worth fighting for comes easily. If I really want change, I have to make changes. Period. But on the other hand, I really dislike this guy's disdaining attitude. To be fair, he's disgusted with people who whine about wanting to change, but don't do anything to implement change...But he probably paints with a very wide brush."

I'm sure he does, Kimberley, but I can also see him rooting HARD for someone of any size who's putting in the effort to reach their goals. I think he's much more about the effort than the package. But really, I care a lot less about the writer than about the real message I thought he had to share: Results are earned through total commitment, by making the choice to do whatever is necessary to achieve your goals --- regardless of convenience, or level of difficulty, or state of mind. I think he's saying that you don't let yourself off the hook when the going gets tough or your commitment wanes, and you don't make excuses or prioritize the obstacles when you're working towards a goal.

I don't like how how he (or ANYONE!) puts people down, and I don't like to do it either. That said, in the name of full disclosure I will share that there definitely were times when, upon seeing overweight coworkers eating irresponsibly, I was motivated to further hunker down in continuing to eat on plan. I didn't think I was better, but I did think I was on the right track, and seeing the behavior I was trying to move away from sometimes served to strengthen my resolve to make choices which supported my goals......much like our friend, Captain Testosterone, when he referred to being "inspired" by the less motivated among us.

It seems that the recurring theme of the day is "Choices," or, depending on how you look at it -- like that figurative tree in the forest -- "Motivation." So I'll share here what I wrote to a fellow poster on 3FC who's struggling at present. I share it, as I shared Merry Christmas Bob, in the hopes that something, sometime, will help someone.

It's just such a hard thing. I've been there too, and shared Gretchen's propensity for beating the crap out of herself for not being able to resume her previous level of success and unfailing determination. (We were both members of the Class of 2004. ) She had a baby, I had cancer -- and we both regained and then couldn't find the *umph* to just pick up where we left off.

I'm just going to share my own recent thoughts on motivation. We all have different opinions about it, and we put varying amounts of stock into it. This is just my own personal realization -- the one that got me back on track at long last.

I kept waiting for motivation to "find me," as Gretchen said. I think we invest too much in this notion that if you have this magical, elusive thing, we'll somehow find ourselves better able to resist temptation, make the right choices, and stay the course. "If I'm motivated to succeed, I'll be able to stick to my plan and then I'll make the time to organize my eats and exercise regularly! If I'm motivated, I'll drink my water, and I'll see results! When I'm motivated, I do well!!" Then we ask ourselves, "Am I motivated?" and more often than not the answer is a sigh and a lethargic no. We're too tired, we're too stressed, we're too overworked, we're pulled in too many directions, we don't have supportive partners/spouses/families/friends. We don't have the time, or money, or space, or equipment, or any number of other things we believe to be requisite to succeeding On Plan. I shared a lot more about my own experience with conflicted priorities in both Sandi's well-conceived "Where are you at" thread and my own Sarah's [Re]Intro thread.

I kept waiting for Motivation to visit upon me. I waited and I waited. I said, "I need my mojo back! I've lost my mojo!" (Like it's a Survivor Immunity necklace that saves your ass! )

Well, for me there had to be a paradigm shift. I had to switch the cart around, so to speak, and just break down and deconstruct my definition of Motivation. When something motivates you, it is said to "provide with an incentive; move to action; impel." And when I'm motivated, it's my behavior which is altered, and my ability to make the right choices.

So I eliminated the choice, and I planned the actions. It didn't require motivation or determination to do that, just a pen and paper and the desire to succeed. I wrote down some specific commitments, and I planned out my eats and exercise for one week, broken down by day. Each day, I looked at my commitments, and reminded myself that I didn't have any choice. If I were at a weight loss spa, they'd remove the choice, as they would at a boot camp or on The Biggest Loser. If you were told that you could eat nothing but bananas every day for a month, but that you'd lose 30 pounds at the end of the month, wouldn't you do it?? I sure as hell would! It's the same thing, I think.

I put each day in writing, and allowed myself no room for discussion or negotiation or deviation. I simply removed the choice, because I knew I couldn't trust myself to just come up with the wherewithall to make the right decisions on the fly. Not yet.

In focusing on the ACTION component of motivation, I put the cart before the horse -- and still got to where I wanted to go. Last week I lost 9 pounds NOT because I was motivated, but because I had a plan and DIDN'T have any choice. Do you let your children do everything they want? Your pets? Or do you make responsible choices for them, with their best interests at heart? They probably can't eat whatever they want, go wherever they want, do whatever they want, stay awake as late as they want, etc..... Your choices supercede theirs, because you are responsible for their well-being. Apply those same loving parenting skills to your OWN well-being, and set yourself limits and REMOVE THE CHOICE element, because you, like they, just don't always behave with your best interests at heart.

This is what worked for me......both times. Don't rely on something external over which you have no control to dictate your success. I know it sounds overly simplistic, but give it a try. Give it one day. One day, every morsel planned, a little bit of scheduled exercise (even walking in place for 10 minutes!) scheduled, every drop of H20 planned. Wake up and say, "Ok, this is my day." And then just do it. Then get up the next day and do it again. It's worth a try, right?

I just know that if I hadn't done it this way, I'd be 9 pounds heavier than I am today and still feeling out of control. And no motivation angel came and kissed me in the night -- I just had a plan. And no choice.

Merry Christmas, Bob

2006-05-12T12:59:00.000-04:00

Another pound lost, bringing me to 8 since Monday! That marks the attainment of my 3-week goal of 8 pounds lost -- and in just 4 days! Crazy. I guess my body has now given up the ghost on holding on to the weight I was working so hard to lose shortly after chemo and is now fully prepared to shed! I think I might call this The Shed Chapter from here on out! Ok, maybe just in private, and just to myself.

I am purposefully not writing about the relapse of someone over at my beloved Hodgkins Message Board, someone about whom I care a great deal, and with whom I shared my time in treatment, as we started at around the same time. Mary is witty and vibrant and just so incredibly cool. And she's a single mom with two kids. And she's relapsed. Fucking Hodgkins -- "the good cancer," my ASS. Tell that to Mary. I'm angry and heartbroken, and worried about her and wanting to be strong to encourage her. Not Mary. Not her. It seems that I wanted to mention it, after all, but I'm not going to go into it further here and now. It's too raw and I'll just end up cursing more.

Two days ago I referred to an article I wanted to share. Disclaimer: This contains macho arrogance which, under many circumstances, can offend or annoy greatly but within this context serves to motivate and inspire. Read it and ask yourself, "Is there some Bob in me?"

MERRY CHRISTMAS, BOB

By Chris Shugart

Testosterone Magazine

"So, what are you doing for a living these days?" Bob asked me. We're sitting on the couch at one of those tedious holiday get-togethers, you know, the ones where you're supposed to be nice to family members you never see except during major holidays and funerals. I think Bob is my wife's brother-in-law's second cousin or something.

"I'm the assistant editor and a writer for Testosterone magazine," I say. Bob looks at me with a blank expression on his face, as if I'd just told him I sell handmade testicle warmers beside the freeway and was looking to open franchises across the nation.
"It's a bodybuilding magazine," I say.

Blank expression. Deer caught in the headlights. Ronnie Coleman doing trigonometry.

"Oh," Bob finally says, "I heard you were, like, one of those bodybuilder guys or something. So, what's that like, you know, working out every day and stuff? I just don't have time to lift weights all day, but I have been meaning to get rid of this beer belly." He takes another sip of beer. "What do you suggest?" Sip.

At first I was a little offended. I wanted to grab him up and say, "You can't tell I'm a bodybuilder?! Look at my ass! Now, if that's not a nice round squat-built piece of sirloin, I don't know what is! You think that comes naturally? I can crack walnuts with this puppy! Wanna see? Huh, punk? Do ya? Do ya?"

Then I realize this just might cause a scene and could cost me several Christmas presents. I was planning on returning any presents I got and using the money to buy a power rack, so I didn't want to jeopardize this gift getting opportunity. I also realized that old Bob probably had a certain preconceived image of a bodybuilder and I just didn't fit that image. I'm not gorilla huge; I weigh about 205 at 5'11" right now. (When I first started lifting I was a pudgy 159, so that's not too shabby.) Also, I wasn't wearing clown pants, a fluorescent string tank top, a hanky on my head and one of those little fanny packs. And isn't that what real bodybuilders are supposed to wear?

Bob continued to sit there drinking his Natural Light, smoking a cigarette and waiting for an answer, oblivious to the fact that he'd come this close to seeing some serious walnut- crunching ass power. I tried to figure out how I could explain to the average guy what the typical T-Man does and why he does it. How could I get him to understand what it is we do, how we feel, how we live? So I took a deep breath and told him something like this:

"Well, Bob, I guess you could use the term bodybuilder if you really need a label for what it is we do. Most of us actually don't stand on stage and compete, though. We lift weights and manipulate our diets so that we'll look good naked. Sure, it's healthy too, and we'll probably live a longer and more productive life than the average guy, but mostly it's about the naked thing. Truthfully, it goes beyond even that.

"Let's be honest here. We do it because of people like you, Bob. We look at you sitting there with your gut hanging over your belt and we watch you grunt and groan just getting out of a chair. Guys like you are our inspiration, Bob. You're better than Anthony Robbins, Bill Phillips, Deepak Chopra, and Zig fucking Ziglar all wrapped up into one. We love it when guys like you talk about not having time to exercise. Every time we see you munching on a bag of potato chips, you inspire us. You're my shot in the arm, Bob, my living and breathing wake-up call, my own personal success coach.

"You want to know what it is we do? We overcome. We're too busy to train, too, but we overcome. We're too busy to prepare healthy meals and eat them five or six times a day, but we overcome. We can't always afford supplements, our genetics aren't perfect, and we don't always feel like going to the gym. Some of us used to be just like you, Bob, but guess what? We've overcome.

"We like to watch 'normal' people like you tell us about how they can't get in shape. We smile and nod sympathetically like we feel your pain, but actually, we're thinking that you're a pathetic piece of shit that needs to grow a spine and join a gym. You smile sheepishly and say that you just can't stay motivated and just can't stand that feeling of being sore. (For some reason you think that admitting your weaknesses somehow justifies them.) We listen to you bitch and moan. We watch you look for the easy way out. Because of people like you, Bob, we never miss a workout.

"You ask us for advice about diet and training and usually we politely offer some guidance, but deep inside we know you won't take our advice. You know that too. We smile and say, 'Hope that helps. Good luck,' but actually we're thinking, 'Boy, it would suck to be you.' We know that 99% of people won't listen to us. Once they hear that it takes hard work, sacrifice and discipline, they stop listening and tune us out.

"We know they wanted us to say that building a great body is easy, but it just isn't. This did not take five minutes a day on a TorsoTrack. We did not get this way in 12 short weeks using a Bowflex and the Suzanne Somers' 'Get Skinny' diet. A good body does not cost five easy payments of $39.95.

"We like it that while you're eating a candy bar and drinking Mountain Dew, we're sucking down a protein shake. You see, that makes it taste even better to us. While you're asleep we're either getting up early or staying up late, hitting the iron, pushing ourselves, learning, succeeding and failing and rising above the norm with every rep. Can you feel that, Bob? Can you relate? No? Good. This wouldn't be half as fun if you could.

"We do it because we absolutely and totally get off on it. We do it because people like you, Bob, either can't or won't. We do it because what we do in the gym transfers over into the rest of our lives and changes us, physically, mentally, maybe even spiritually. We do it because it beats watching fishing and golf on TV. By the way, do you know what it's like to turn the head of a beautiful woman because of the way you're built? It feels good, Bob. Damned good.

"When we're in the gym, we're in this indescribable euphoria zone. It's a feeling of being on, of being completely alive and aware. If you haven't been there, then it's like trying to describe color to a person who's been blind since birth. Within this haze of pleasure and pain, there's knowledge and power, self-discipline and self-reliance. If you do it long enough, Bob, there's even enlightenment. Sometimes, the answers to questions you didn't even know you had are sitting there on those rubber mats, wrapped up in a neat package of iron plates and bars.

"Want to lose that beer belly, Bob? I have a nutty idea. Put down the fucking beer. I'll tell you what, Bob. Christmas morning I'm getting up real early and hitting the iron. I want to watch my daughter open her presents and spend the whole day with her, so this is the only time I have to train. The gym will be closed, so I'm going out in my garage to workout. You be at my house at six in the morning, okay? I'll be glad to help you get started on a weight training program. It'll be colder than Hillary Clinton's coochie in there, so dress warm.

"But let me tell you something, Bob. If you don't show up, don't bother asking me again. And don't you ever sit there and let me hear you bitch about your beer belly again. This is your chance, your big opportunity to break out of that rut. If you don't show up, Bob, you've learned a very important lesson about yourself, haven't you? You won't like that lesson.

"You won't like that feeling in the pit of your stomach either or that taste in your mouth. It will taste worse than defeat, Bob. Defeat tastes pretty goddamned nasty, but what you'll be experiencing will be much worse. It will be the knowledge that you're weak, mentally and physically. What's worse is that you'll have accepted that feeling. The feeling will always be with you. In the happiest moments of your life, it'll be there, lying under the surface like a malignant tumor. Ignore it at your own peril, Bob.

"Don't look at me like that either. This just may be the best Christmas present you'll get this year. Next Christmas, Bob, when I see you again, I'm going to be a little bigger, a little stronger, and a little leaner. What will you be? Will you still be making excuses? This is a gift, Bob, from me to you. I'm giving you the chance to look fate in those pretty eyes of hers and say, 'Step off, bitch. This is my party and you're not invited.' What do you say, Bob? Monday, Christmas morning, 6am, my house. The ball's in your court."

Okay, so maybe that's not the exact words I used with Bob, but you get the picture. Will Bob show up Monday? I don't know, but I kind of doubt it. In fact, Bob will probably take me off his Christmas card list. He probably thinks I've got "too much Testosterone," like that's a bad thing. I think Bob is just stuck in a rut, and as the saying goes, the only difference between a rut and a grave is depth.

The way out of the rut is to make major changes in your life, most of which won't be too pleasant in the beginning. The opportunity to make those changes seldom comes as bluntly as I put it to Bob. Most of the time, that opportunity knocks very softly. What I did was basically give Bob a verbal slap in the face. You can react two ways to a slap. You can get angry at the person doing the slapping, or you can realize that he was just trying to get you to wake up and focus on what you really want and, more importantly, what it'll take to get it.

If you're a regular T-mag reader, I doubt you need to be called out like Bob. But maybe you've caught yourself slacking a little here lately. Maybe you've missed a few workouts or maybe you started a little too early on the usual holiday feasting, like, say, back in September. Just remember that the time to start working on that summer body is now. The time to get rid of those bad habits that hold you back in the gym is now. You want to look totally different by next Christmas? Start now. This isn't because of the holidays or any corny New Year's resolutions either. The best time is always now.

Christmas day I want you to enjoy being with your family and friends. I want you to open presents, sip a little eggnog and have a good meal. But if your regularly scheduled workout happens to fall on December 25th, what will you be doing at six o'clock that morning?

That's what separates us from guys like Bob.

Pretty awesome, huh?

7 pounds down!

2006-05-11T10:09:00.000-04:00

Yes, that's 7 pounds since Monday. Can I get a hoooyah!! I know it's fast, but I'm not worried about it. I'm sure a bunch of it is water, but I'm loving the jumpstart! I'm living low cal, low fat, and low glycemic. I'm also working out every day. Once I'm in the new house and all the exercise equipment is out of storage and all set up in the upstairs bonus room that will function as our home gym, I'll be able to use the elliptical, treadmill, CrossBow, stepper and free weights; for now I'm all about the exercise bike!

In other news, I've accepted the job at Norwalk. I'll be a Design Consultant for them, not only selling within the store but going to people's homes to measure and consult and then put together design presentations for their projects. It's literally 5 minutes from our new house, and all of my other alternatives require at least 2 hours of commuting a day -- and the 2 hour commute applies to only one of them, the others are more like 2 1/2. The only thing is that because Norwalk doesn't offer disability insurance, I'm going to have to get that on my own -- which I am currently in the process of researching. It's commissioned sales, which I've done before with success, so I'm not worried about my ability to sell. I will need to learn alot about furniture construction and design, and I'll need to entrepreneurial in broadening my customer base past simply those who walk into the store. If I just wait for them to drop into my lap, I won't make the money I need to. There's a lot of development going on in the area -- the large community where we'll be living, Summergrove! It's definitely a departure from my work in HR and recruiting, but my options at this point are limited and I need to work. I do think it will be fun, and I love creating and designing, and I'm a nut for color and design, so it may be just what the doctor ordered. Speaking of doctors, I won't be covered by their insurance until I've been there for 3 months, so unfortunately we'll have to pay for COBRA for that much longer.

I'll be back later to post that awesome article I referred to in the last post. Gotta go work out!

Chapter Two, Day One Down!

2006-05-09T14:02:00.000-04:00

Hello, dear readers! Ok, here's the scoop: I'm back on plan as of yesterday! My weigh-in yesterday shook the room at a mighty 249. After a low cal day (1138,) 120 oz. of H2O and 42 minutes of biking (avg. 17 mph, went a little over 11 miles,) I saw some progress this morning, when the numbers 246 (in that order) smiled up at me from the scale. Well, that's a nice little watery start -- I'll take it!

Lorraine and I signed contracts with a 3-week commitment, since it takes 21 days to make a habit. Pssst! This was primarily for her benefit, since she's the sort of human who takes much more seriously the instance when she promises to do something than the flippant, "Yeah, I'll do that." So the contracts are signed, with our own individual, quantifiable and measurable guidelines for eats and exercise, as well as some other stuff. Like in hers I added "I will do everything in my power to remain positive in eating the food that Sarah prepares for me and acting on her recommendations regarding my food and exercise." Yep, it's in writing and she signed it, although smiling at that part.

So far, eats are fabulous and I'm doing just fine on my exercise. (A required minimum of 300 minutes/week.) So far today I've only got in 23 minutes, but that should change later.

I have an extremely motivational article I want to share here, but I'll have to do it later. You definitely want to see it!

Oh! And we bought a second car last night! A ruby colored 2006 Chevy Aveo -- pretty cheap at around 14 grand -- and it's supposed to get 50 miles to the gallon! I should be starting work next week, so we'll both need to be mobile. (Lorraine always had a company car, and her new job doesn't provide that; instead, they pay mileage.)

Journey to Babeland, Chapter Two

2006-05-06T16:20:00.000-04:00

This blog has developed such a fractured personality -- clearly a reflection of its owner. Those of you who've shared my journey since I started to write here in July of 2004 know that, at the start, I was singleminded in my purpose: Lose weight and get fit, plain and simple. I updated religiously as I was progressing in what ultimately was a loss of around 80 pounds in eight months. In the process of sharing that process with me here, you watched the cancer diagnosis unfold. You read of my "pet lump" and my relentless itching, then you read of my tests, my biopsies and, ultimately, my diagnosis. Weight loss had to take the back burner.

As my focus shifted to fighting advanced stage lymphoma, and I learned about life on ABVD chemotherapy for six months, I contributed less and less here. I felt like the real Sarah was on a shelf in my living room, and Chemo Sarah was just an empty, still shell. I was so fragile, so raw. I felt so depleted and dim and, well, lifeless that I just sort of withdrew into myself. I updated here out of a sense of obligation to those who'd shared my journey up to and including treatment -- it still breaks my heart that I lost all of my comments when I had to delete my comment software -- as well as to those others diagnosed with lymphoma and looking for information and answers online as I had. But I just didn't have it.

Nor did I have it when I returned to work with heavy chemobrain and could barely keep my wits about me and sustain the stamina required to get through my workweek. I was far less communicative than I'd been pre-chemo, and I felt stunted by this blog's split personality. Weight Loss, Chemo, Weight Loss, Life After Chemo.

Then came House! I wanted to share this big development in our lives with both online and real-time friends, and to photographicallly document the interesting process of building a house. Lorraine and I spent a good deal of time apart as a result of her new job's training program during this time, and it was great to give her a place to easily check out the latest on the house.

The original purpose of this blog was to motivate myself to continue my progress in reaching my weight loss goals, and to connect with others who shared my goals. My need to lose weight continues. I'd regained about 20 pounds by chemo's end in June (steroids are EVIL!) and then what I think is another 20-25 between June and May, putting me at what I think must be around 245-250 now. Because the movers sent my scale to storage rather than our temporary apartment, I will need to buy a new scale so as to have a baseline for the full-time resumption of my journey to babeland. Chapter Two. I have put a lot of thought into why exactly I have been less motivated to make the right choices which would have prevented the regain of those 25 pounds NOT resulting from the steroids, and I've come to the conclusion that it just doesn't really matter. Yeah, it's widely known that after treatment the metabolism is reduced, and lots and lots of people have a very hard time rebuilding previous activity levels. Plenty of people have reduced thyroid function, whether they've had radiation to the mantle or not. But you know what? None of that is very productive. What do you do with that knowledge besides use it to formulate excuses? I am more interested in why motivation has flagged -- but only to the extent that I strive to regain control of my ability to make the right decisions and exhibit the right behaviors to move me forward -- at whatever pace! -- towards my goals. Motivation isn't this sort of elusive, unknown enigma that visits upon you and bestows you with superpowers before moving on and leaving you dejectedly wondering how the hell you're supposed to get anywhere without it.

I think it's a matter of the horse and the cart. Make the first positive choice, show yourself you're capable of doing the right thing, and then you'll be motivated to do it again. Repeat. Do it enough, and you'll have people asking you how you manage to stay so motivated. That was my experience anyway, back when I was losing. There was no magic. No mojo. It was just doing pretty much the same stuff day in and day out. I made a plan and I stuck to it and I lost weight.

Well, I'm going to do that again. Lorraine is going to do it too -- at least that's what she says now. I've written up contracts for each of us to sign. She's willing to commit to 3 weeks of living on my plan, since it takes 21 days to create a habit. So 3 weeks it is, starting Monday. I know that in my case, I'll be repeating this process again and again until I've lost about a hundred pounds. I hope and pray that this will be the case for Lorraine also. With her heart problems, she hasn't got any other choice. Obviously, she'll need to make up her mind that she is going to make that choice and then follow through on that choice through her actions over the long haul.

So what about this blog's diverse personality? I don't know. Back when I got diagnosed, I posed here the idea of starting a separate cancer blog; the overwhelming response I got was to fold it into this blog, because the cancer is part of my journey to babeland, not independent of it. So I incorporated it. Same with the house. And now you will hear once again about my daily life in actively, aggressively trying to lose weight. Full circle. I still have an active node in my chest, so I'm not done with the cancer talk yet, but I'm sure as hell hoping I can put THAT Sarah back on the shelf and focus more fully on the Sarah who is able to, day in and day out, take the right actions and make the right decisions to again lose 80 pounds...and then some. My prayer is that I can resume this path uninterrupted, and that I get to enjoy my healthy, fit body for many, many years to come.

This blog is a mirror I look into. It reflects the different challenges I face in getting to Babeland, and if the road is bumpy -- well, so be it. I've shown myself already that I'm a mountain climber, and that I'm absolutely up to any challenge with which I'm presented. If, at some point, any of you get the sense that I've perhaps forgotten that, could you kindly remind me, please?

Thanks.

Happy Birthday to Me!

2006-05-05T00:48:00.000-04:00

It was my birthday on the 4th -- Gretchen, now how sweet are you to have remembered that?? Gretchen, I don't have any contact info for you anymore -- I lost all of it! So could you please include an email address on the email addy line when you comment so I can get back in touch with you? If you do that, I'll email you and then we can figure out a time to catch up on the phone. Or, conversely, you click on the "View my complete profile" link to the left, and you'll have the option there to email me directly -- then I'll get back in touch with you! I miss you and love that you continue to reach out to me here, and I want to hear how your beautiful boy is doing!

Thank you to ALL of you who pop in to see if I've posted -- I have so neglected this blog since finishing chemo last summer, and I can't tell you how much I appreciate your patience with me and continued interest and willingness to give support. You're truly beautiful people, and I sincerely hold such affection for each of you.

So, it was my birthday today, and all in all it was a good day. I'm just popping on for a quick update, and to post the latest pic's of the house, but I will be back to share more within the next day or two. This was my first birthday post-cancer, and I learned first thing this morning that yet another of my peers at the Hodgkins list I frequent died this morning before dawn, so after starting the day in tears, I felt rather reflective for the remainder of the day. If I can manage to formulate my thoughts into some kind of cohesive thread that I think might be relevant to anyone else but me, I'll see if I can share it when I come back.

Without further ado, here are the aforementioned photos!

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The front of the house:

The dining room:

The kitchen:

The kitchen sink:

The door in the master bedroom, which will lead to a patio and pool (we had to get half-glass because it will be a puppy door for Louie:

The bonus room upstairs (exercise room, with a separate air conditioning unit, thank God!):

More of the excercise/bonus room (there's a half bath up there, too):

The back porch:

The back of the house, on the side of the master bedroom:

May You Be Blessed

2006-04-27T11:54:00.000-04:00

I just saw a very moving and inspirational movie online called, "May You Be Blessed." Thanks to Kate at the Hodgkins list for sharing this beautiful message. Watch it, be affected by it, and then pass it on. To learn more about the movie, go here.

Life Now

2006-04-24T19:49:00.000-04:00

Well, it's high time I shared an update here, I'd say! I'll break this post up into some different parts, with some cool house pic's at the end.

JOB: I'm still wading through the job search waters. Mining the net for opportunities, responding to recruiters calls, applying to posted jobs, and interviewing both in person and on the phone. So many of the opportunities are located just too far from where we live. Even if you were of the mind that you'd consider it, I find that after going through treatment for cancer, you become less willing to tag on an extra 2 1/2 - 3 hours of commuting time to your workday. That's just not how I want to spend my time; it's not worth it. For those of you who don't know what I do, I'm qualified to be a recruiter or an HR Generalist. We live about 40 minutes south of Atlanta, so I'm limited to positions located in the downtown area if I don't want to get mired in the congested Atlanta traffic which exists in and past that point going northward -- which, unfortunately, is exactly where most of Atlanta's commercial expansion has taken place.

The other obstacle has been the Big B: Benefits. In many cases they don't offer disability, or they're contract positions, or the maximum out-of-pocket is outrageous (in one case $9,000 -- which isn't a big deal for the normal person, but for someone with iffy remission and at least $14,000 in SCANS ALONE each year -- uh, not so feasible.)

That said, I do have a couple of recruiter jobs at some stage in the process -- both of them will require at least two hours of commuting daily. (I gave myself a cutoff of one hour each day.)

THAT said, I am actually considering a position in another industry altogether -- and in a location about 10 minutes from my house. I would be a Design Consultant for http://www.norwalkfunitureidea.com, a custom home furnishings and interior design company with about 80 locations nationwide. Lorraine and I were making selections for our new home's family room, and the manager was assisting our consultant, who was still new. As we moved through the process, the manager began complimenting me on "my eye" and attention to detail, and when it came up that I was looking for work, she approached me about working there. I'll interview with her next week. I know they offer benefits, but I don't have any particulars. I also don't know about the pay -- uh, kind of important! -- but I'd imagine there's got to be some sort of commission structure in place. I hope so, because I know I sell well. I used to be a Showroom Manager (Store Manager) for a window treatments company in Maryland, and I was really successful. I also liked it, for the most part. So I can see myself enjoying this job.

I've done a lot of thinking about what it means to my career to leave HR and Recruiting when I've worked hard to build a solid resume and develop my skill set. It's definitely a real change from office life -- I know, because I was in retail management for about 10 years before moving into office life. I've come to the conclusion that this works for now; it doesn't have to be a forever job, and the variable schedule would allow some flexibility for interviewing, should some really great HR/Recruiting opportunity present itself. Some things I'd love: the commute, the fact that I wouldn't be sitting on my ass all day at work and would be much more active, the opportunity to interact with different kinds of people in person rather than on the phone, the subject matter of those conversations and the ability to help people make some very important decisions on some expensive purchases which they then have to live with, and an opportunity to laugh a lot more at work than I typically am inspired to do.

So we'll see.

HEALTH: Not so sure yet about this. I'm still working on getting my Maryland oncologist's office to forward my records to the first of what will be two oncologists in Atlanta with whom I will consult; after meeting with both of them, I'll pick one and then move forward with the next scans to see if the 1 cm. node in my chest that appeared on the last two PETs and the last CT is still there, and if so, if it's grown or multiplied or some other scary thing. It would be very pleasant indeed if it just disappeared altogether.

WEIGHT / FITNESS: Alright. The good news is that I'm working out quite regularly: biking 40-90 minutes/day 5-6 days a week. It's vigorous, and I mix up the routines; sometimes I do HIIT with speed, sometimes I do one of the 2 resistance interval programs on my exercise bike, and sometimes I just do steady rate at around 16-18 mph.

The not-so-good news is that I am not eating on plan as well as I could. It's not a free-for-all, but I think I eat an off-plan meal maybe 3-4 times a week, and my "on-plan" meals contain larger portions than they should. (But not of starches, I'm happy to report, just too much fish, or too much salad -- with too much homemade, low sodium, olive oil-based dressing, for example.)

The bad news is that the stupid movers didn't ship my scale to our temporary apartment and sent it to storage instead. Bastards! (They also put all of each of our work clothes in storage -- it was all either freshly Dryeled, or in the hamper to go to the dry cleaners -- and all of that got packed up and sent to storage in Tennessee instead of coming here with us.) The downside of having others pack up your belongings.

Anyway, I don't know how much I weigh, but my clothes don't fit me any differently than they did before the move. My legs are tighter and firmer from the biking, but that's about it. Once I start working, I'm going to give myself the present of a new WATP DVD for some variety. (I'd had set one atop the scale for packing and delivery to our apartment; needless to say, they both went into storage.) On the upside, we were delivered a number of very critically important lampshades (minus the lamps) -- thank GOD we've got all those here with us in the apartment! *sheesh*

THE HOUSE: Very cool! It's coming along so well! The cabinets are in, the paint is up, and the countertops are ordered. Once they come in, we'll get a firm closing date, but at this point we're looking at the third week of June. And now, without further ado, here are some pic's of its current state, in no particular order. These photo's all seem to make all of the rooms appear smaller than they are; the house, including the upstairs bonus room, is a little over 3000 square feet, which we think is plenty for just the two of us. (And 8 animals!) It also helps a lot that the ceilings are 12' high and the home has such an open floor plan.

The view from the foyer:

The study:

The fireplace:

Looking from the kitchen through a breakfast area into the sunroom:

Some of the kitchen cabinets:

The sunroom:

Cabinets in the master bath:

The dining room (that niche will be mirrored:)

A not-so-great view of the front of the house:

Georgia!

2006-04-06T15:39:00.000-04:00

We're here! Lorraine's settling in nicely to her new position, and I'm furiously trying to get a job. Our location SW of Atlanta is presenting a real challenge in finding a position for which I'm qualified, which pays enough, and isn't more than an hour away from home. It's a toughie! I'll keep you posted.

The above picture shows the progress to the front of the house. We're looking at late June, apparently; predictably, longer than they'd originally told us it would be. We're all piled into our little 1-bedroom apartment -- the 7 cats, the dog, Lorraine and I. It's an interesting experience, to say the least!

Here are some more pic's of the house, in no particular order:

The brick almost completed (completed now) at our front porch:

Our dining room niche:

The back of the house (sunroom on left, bedroom on right;) both will lead to a patio, small pool, and some green space with lots of privacy:

The kitchen window -- you can't tell, but the ceilings throughout are 12' high:

These photo's were taken by the builder -- he does that every couple of weeks and posts them online for us to view. I need to get out there and take some pic's of my own, because there aren't any of the really lovely rooms, archways, etc. Drywall really makes such a difference, doesn't it?? It's so interesting to see this whole process.

In other news, I'm biking 90 minutes a day, so I'm feeling really, really good about that. Immediately upon arriving here, I got sick -- persistant cough, wheeze, breathlessness, etc. It took Lorraine right back to my pre-diagnosis misery, and while I didn't think the worst as she did, I couldn't help feeling a little nervous. I think it's only natural. But I found myself a local doc and got prescriptions for an antibiotic, low dose steroids (to open up my chest) and Zyrtec, since Georgia is apparently an allergy capitol of sorts. I also got a steroid shot, because my chest was so tight. I'm happy to report that I'm doing much better now!

More later!

For Dusti.....

2006-03-10T22:50:00.000-05:00

Dusti over at the Hodgkins board mentioned that she wanted to see my whole face, and also a pic of Lorraine and I together. This one on the right shows me with my little guy, Louie. Is he not adorable?? We had a great walk in the forest that day -- so much to sniff!

This second pic shows Lorraine and I out at one of our favorite haunts, Bertha's. This pic was taken at the start of my treatment.

This last smoochy one isn't very flattering of either Lorraine or me, but I don't care -- I love it! I honestly wasn't trashed -- I was just really feeling that kiss!
Sorry this is a quick one -- I'm off now to take Lorraine back to the airport to fly out. She was ony here for 2 nights, and now she's off for Georgia again. It pretty much sucks without her, but we're counting downt he weeks. She'll come back this Friday -- my last day at work -- to help finalize everything with the house before closing on Thursday. We're nearing the home stretch on that, but truly it's pretty overwhelming. Some key components of the move are still up in the air, so I trust I'll feel a bit better (and so will she) once we have more of a sense of how it's all going to go down.

I'll be back soon to report on my recent weight loss -- 6 pounds this week! -- and the latest with my follow-up care.

Ch-ch-ch-changes

2006-03-05T23:03:00.000-05:00

I am in the calm before the storm. Or is it the storm before the calm? I am in the countdown to my last day at work, with so much to do at home yet before the movers come to pack up the house. Probably half of our belongings -- apart from the furniture, that is -- is in storage. But there still is the division of that which will go into storage from that which will go into our interim apartment. There remains the last bit of painting -- backs of doors, some molding.

With Lorraine gone, I'm feeling fairly overwhelmed. Taking care of the 7 cats and Louie (a pretty high maintenance little dog!) is just a whole hell of a lot of work. I'm definitely feeling the workload with Lorraine away. With 10 hour days it's hard. Whaaahhhhh...sorry for the pity party!

I do still have to find a couple of new onc's to interview and set up appointments with them down in Atlanta. I also still have to pick up all of my scans and medical records. And I still need to let Dr. Chaudhry (my onc) know that I'm about to go!

Lorraine's coming home this weekend, and I'm just beside myself! Damn, I like that girl. It will have been 2 weeks -- the longest we've ever been apart. Then she'll come back a week later to help prepare for the movers to come, help finish up some last minute house stuff (returning the cable modems and boxes -- stuff like that) and to be here for settlement on the 23rd. Then we're in the Camry with all the animals, headed for Newnan! I've got to say, that whole process -- the movers/the animals/the drive down from Baltimore with them -- that's the most daunting of all of this. I know we'll get through it, but MAN! It's a lot.

I'll close with a couple of pic's of our new house:

Update

2006-03-02T13:00:00.000-05:00

Hello, world.

My, my, but there's a lot to report. I've sold my home in Baltimore, I'm building another one outside of Atlanta, my partner Lorraine is in Georgia now training for her new job, I'm finishing things out at my job, I have a 1 cm. active node in my chest and am in "watch and wait" mode, and I've gained weight. Life goes on.

The House:

This pic is of the model; our home will differ slightly. It's a large, lovely ranch with a large walk-up attic bonus room that will function as our home gym. We're so excited about it! Prepare for an agonizing number of details at a later date.

The Remission:
My oncologist has instructed me not to worry, but it's rather concerning. As you may recall, I got a clean PET (meaning I was cancer-free) at the halfway point of my six months of chemo. Then, a couple of weeks after chemo ended, I was scanned again and had another clean PET. My next scan was at the end of November (originally scheduled for December but moved up when I found a lump on my collarbone.) That scan showed nothing on my collarbone, but there was active uptake in my chest. My oncologist told me to wait two months and then rescan. She felt that because I'd responded so positively to chemo, this would probably end up being nothing. The second scan, at the end of January showed the same uptake. It was followed by a CT scan, which verified that I do indeed still have a 1 cm. node in my chest. My onc says that it's too small to biopsy, and too small to treat. She feels we should rescan either in a few months or before I leave, whichever comes first. Of course, she didn't know then that we were moving so soon. Settlement on the house we've sold is March 23rd, so we'll head out that day!

I'm anxious and uneasy, but trying to remain positive. I can only trust that she has more knowledge than I have fear.

I'll have a new oncologist in Atlanta, so I'll be interested to hear their take on things. Remission is terrifying, almost more than diagnosis. You cling to it like a life preserver in deep, dark waters, fearing like death its slip from your grasp. Some folks let the fear rule them. I don't think I fall into that group, but I have let the fear affect me. I know that the weight I've gained since chemo's end is due in great part to my clouded optimism. I think I'm going to have to get over that. Or get over myself -- whichever is more applicable!

It's awful to hear of others' relapses. There have been a few over at the Hodgkins message board I frequent -- hearing of a young woman's death was particularly hard. Now this morning I read of Maureen's relapse, and it just breaks my heart. I guess the fear and uncertainty just come with the territory when you've had cancer, and when you share friendship and contact with other cancer survivors, you're bound to feel pain when you hear someone's bad news. It hurts your heart, your stomach gets punched in, and you feel this enormously heavy weight. I saw this bumper sticker the other day, and it really struck a chord with me: "Whoever said winning isn't everything never had to fight cancer." True dat. I never was a very competitive girl, but cancer is just so black and white, isn't it?

I apologize for the somber tone of this post -- I am just so sad about Maureen's news it's weighing heavily on my mind (and heart.) She's a very strong, pretty fabulous woman (check out her blog -- you might actually have read one of her books.)

I won't stay away so long next time, I promise.

It's all crazy

2005-11-27T19:15:00.000-05:00

Whew! Well, I finally dragged my caboose back in here to give a quick report on what's been going on with me. It's rather a lot -- or so it seems to me -- so I will endeavor to keep myself on track.

* I'm feeling stronger and stronger -- I'd put myself at about 80-85% now, although if I exercised daily I'm sure my stamina would improve.

* Lorraine's feeling better -- the 30-day regimen of intravenous antibiotics seems to have done the trick and, while she's not at 100% either, her energy is finally approaching its pre-Lyme levels. She's also still smoke-free!! So exciting! It's now almost 5 months. (And yes, she still talks all the time about wanting to smoke.)

* My work is going well -- it's extraordinarily busy, and the days are long, but I'm finding my abilities to concentrate, multitask and remember details are, while not as they were pre-chemo, about 50% better than they were immediately after chemo. There's clearly some sort of wiring difficulty still -- like I'll say "seafood store" instead of "tropical fish store," or call a semi a "modified van," or I'll swear that I remember putting something someplace and I'll find I never did. Names? Forget it! (And I'm a recruiter with 16 positions open! Kind of an issue.)

* Lorraine's learned that she's almost certainly going to get laid off at the turn of the year, so she's wildly searching for a new job. Because we knew that we wanted to leave this area anyway, we're planning to move to a town south of Atlanta (where a couple of friends live.)

* We're putting our Maryland home on the market at the end of next week, so we have a lot of work to do (while working full time) to get it show-ready. It's so much work, as many of you know.

* We've selected a builder for our new home, but we're narrowing down the floor plans to the best one we can afford. Regardless, we're looking at doubling our square footage, getting a deluxe, upgraded kitchen and master bath, sunroom and study and just so, so much more, for $20K less than our current home's listing price. Then we'll spend that on a small pool for the back yard of the new home! We have a lot of work to do, but it's very exciting....and more than a little scary, in that we depleted our savings this year and don't yet have jobs lined up. (She's down there interviewing as we speak.)

* I have a lump on my collar bone that wasn't there before, so I'm really very afraid. I had a check up with my oncologist a few weeks ago and she gave me a happy thumbs-up based on a physical test and blood results -- but no scan or x-ray. We'd planned on my getting a PET scan right before the end of the year, but I'm going to move it up immediately. I'm going to try to set it up for this week. (I just found the lump coming home from our annual Thanksgiving pilgrimage to New Jersey. What? You mean you don't do that? *snicker*) I haven't said anything to Lorraine yet -- she's already so freaked out with all the other uncertainties in our lives that I don't want to worry her needlessly. If it's the worst, we'll deal with it together, but for now, I'm worrying alone. (And no, she doesn't read this.)

As for living on plan -- not so much. I was exercising a few days a week, but using our exercise bike, elliptical and treadmill; now that all the exerise equipment is in storage (pre-listing, pre-move preparations,) I'm going to have to switch to my trusty old Walk Away the Pounds tapes. Eats are on-again, off-again. We're going through so much between the trips down to Atlanta and the pre-selling home improvement/beautification stuff -- all while we're both still working full time -- I'm finding the advance meal preparation thing a bit challenging at present. I'm making responsible choices much more than I don't, though. Since June, and the end of chemo, my weight is up 10 pounds. Not good. I'm not happy about it, but I'm not beating myself up over it either -- it's been an extraordinarily stressful and difficult year for us, and we're looking forward to a healthier and more productive one in 2006.

Any prayers or positive vibes you could send my way would be greatly appreciated. I'd really like to hear that this lump on my collarbone is just nothing at all -- and most definitely not Hodgkins.

Hello, blogger, my old friend...

2005-10-22T14:44:00.000-04:00

Hello, helloooo! Well it's certainly been a while. I don't even really know where to begin. It feels awkward giving an update after almost three months of silence. Particularly since this was a place I once came daily to share my life and progress moving through it.

I've been working hard at work - it's requiring considerably more effort than it did pre-chemo. I guess that's normal. My oncologist told me to expect energy to be an issue for a year. I did just get a 6.25% raise, so that helps!

Lorraine's doing much better. I'm not sure if I talked about it here, but less than two weeks after my last treatment, she was hospitalized for some serious heart problems that it turns out resulted from Lyme Disease. So we went straight from one health crisis right into another. She went through a couple of antibiotic regimens - the latter given intravenously, through a PICC line. She really does seem to be doing much better now, I'm relieved to say. It was very, very hard there for a while, as we were each at an all-time low simultaneously.

I think my chemo-induced, premature menopause might just be gone -- wonderful news indeed! I've only gotten two periods since chemo ended in June, but it does seem encouraging. I really would like to reap the benefits of an increased metabolism and ability to increase my bone density. If the menopause leaves the building, I should have at least another decade to enjoy these before going through it all over again. Not fun!

Speaking of hot flashes, rage and tears - I'm stuck in a weight loss motivational rut. I'm thrilled to say that I've just begun working out on our brand spanking new elliptical -- Lorraine just put it together less than a week ago. Man, that thing's an ass-kicker! I can go on the exercise bike for an hour, but the elliptical for a scant five minutes! I intend to increase my time incrementally every day, though. As you can see from the pic above, we got one with the flywheel in the front, which research reported was superior. It's a New Balance 9.5, a great machine, really - it's got smooth movement, a stride of 18" (adequate for each of us,) it's absolutely silent, it's got I think 10 programmed workouts and room for several more user-designed programs, steel construction and overall great quality. I'm pleased! We're making I think $99 payments monthly, interest free. Not bad! The downside is that it's enormous....and I've insisted on keeping it in our small office/guest bedroom, so it's handy for daily use. Oh well, the next house will be bigger.

In other news, I'm holding at I think 231 pounds. Yep, it pretty much sucks. I haven't been eating on plan 100% of the time, and I haven't been exercising regularly. I could tell you that my 11-hour workdays (work plus commute) just take it out of me, and that would be the truth, but not the whole truth. I just don't have that drive like I did. I want it, don't get me wrong....but I seem to have misplaced my mojo.

That said, I know motivation isn't something you just happen upon -- nor is it the thing that's going to get you sustained weight loss. It's really more a question of consistent behaviors, thoughtfully chosen. I didn't lose 80 pounds last year because I was motivated -- I lost because I was committed. It does require a bit of energy to sustain that commitment, and it is in that area that I remain challenged. I eat a healthy, on-plan breakfast and lunch every weekday (I prepare healthy lunches every day to take to work,) and I eat a healthy dinner most nights (I could go smaller on the portions at dinner maybe 25% of the time.) My commitment wanes a bit on the weekends, but it's still not a free-for-all. I'm not gaining, so that's good, but I certainly am not losing either -- obviously because I haven't been exercising.

I know what to do. I've done it before. It's just a matter of getting back into my old routine. I may not have the stamina now to sustain my old exercise routine while working, but the more I do, the more I'll be able to do.

Hopefully coming back here will help me get back into my old groove.

On the cancer front, I see my oncologist this coming Friday. I'm getting a blood test beforehand and she'll review those results and check me physically this time around. It's supposed to be in January that I get another PET, but I'm going to ask her to let me have it in December so I don't have to pay my 20% share of the scan's $5,000 cost. (I've already met my out-of-pocket for this year.) I'll still have two more PETs next year, in addition to all the other medical expenses I'll surely incur.

I am going to make a point of visiting your blogs, dear gentle readers. I've missed you and look forward to catching up and reading your words.

Just a quickie about today

2005-08-03T23:14:00.000-04:00

Wednesday: 1354 kcal; 50 minutes biking (10.75 miles); Full body weights

Exercise today marked a new milestone. I did 75 minutes in one session! 10 minutes biking, to get my heart rate up, then on to 25 minutes of full body weights, followed by another 40 minutes on the exercise bike. Can I get a Woot! Woot!

Tomorrow brings gobs of cardio, and another low-cal day.

Each day I feel a little more energetic, and I have just a little more stamina. I am so grateful for this progress. I suppose there will come a time when I once again take for granted these gifts -- but I have to say I think that's a long way off. Perhaps I can exercise some purpose in that, because I'm really enjoying these feelings of awakening and appreciation.

August Plan

2005-08-02T23:56:00.000-04:00

Ok, folks. I have very little time to post, but I did want to at least post my exercise plan for August:

WED, 8/3: 50 min bike; Full body weights
THU, 8/4: 50 min bike; WATP - 1 mile
FRI, 8/5: 50 min bike; Upper body weights; 20 min treadmill (with incline)
SAT, 8/6: 50 min bike; WATP - 1 mile; 20 min tread (with incline)
SUN, 8/7: 50 min bike; Full body weights
MON, 8/8: 50 min bike; WATP - 1 mile
TUE, 8/9: 50 min bike; Upper body weights; 20 min tread (with incline)
WED, 8/10: 50 min bike; WATP - 2 mile; 20 min tread (with incline)
THU, 8/11: 50 min bike; Full body weights
FRI, 8/12: 50 min bike; WATP - 2 mile
SAT, 8/13: OFF
SUN, 8/14: 50 min bike; Full body weights
MON, 8/15: 50 min bike; WATP - 2 mile
TUE, 8/16: 50 min bike; Upper body weights; 20 min tread (with incline)
WED, 8/17: 50 min bike; WATP - 3 mile; 20 min tread (with incline)
THU, 8/18: 50 min bike; Full body weights
FRI, 8/19: 50 min bike; WATP - 3 mile
SAT, 8/20: OFF
SUN, 8/21: 50 min bike; Full body weights
MON, 8/22: 60 min bike; WATP - 3 mile
TUE, 8/23: 60 min bike; Upper body weights; 20 min tread (with incline)
WED, 8/24: 60 min bike; WATP - 3 mile; 20 min tread (with incline)
THU, 8/25: 60 min bike; Full body weights
FRI, 8/26: 60 min bike; WATP - 4 mile
SAT, 8/27: OFF
SUN, 8/28: 60 min bike; Full body weights
MON, 8/29: 60 min bike; WATP - 3 mile
TUE, 8/30: 60 min bike; Upper body weights; 20 min tread (with incline)
WED, 8/31: 60 min bike; WATP- 4 mile; 20 min tread (with incline)

I'm going back to work September 6th, and plan to do a half hour of cardio every morning before work. At that time I'll also switch to a 4 day split schedule for weights. I've started out with full body sessions because I understand I need to create neural pathways before shifting to splits. I'd intended to do 3 full body workouts/week, but my legs can't yet handle weights 3 times/week. I'll play this month's schedule by ear, and modify as needed. Just a note: If for some reason I miss a day, I'll make it up either on Saturday, my free day, or during the week. The goal, however, is not to miss a day! (Except when we go out of town, which should occur for 4 days at some point in the month -- and the plan then is to take the laptop so I can at least do a WATP workout on those days.)

Gotta run!

Friday

2005-07-29T23:57:00.000-04:00

Friday: 1828 kcal; cycled 40 minutes, going 10 miles

I loved my cycling today! It just felt really good, and I'd like to get up to an hour tomorrow. It's also time for another full body weights workout, so that's on the books as well.

Lorraine's very motivated to get out and have some fun tomorrow, so I'm going to have to manage my time diplomatically to get both of my workouts in, and keep us both happy! Ideally, she'd join me, but experience tells me that's unlikely. She'll do it when she's ready.

I have to think of some smashing way to celebrate her 1 Month anniversary of being smoke-free. She's on Day 27! Any great but cheap ideas?

Another day another doctor's office - or 3

2005-07-28T22:03:00.000-04:00

Wednesday: 1276 kcal; no exercise
Thursday: 1643 kcal; no exercise

Today was a day of doctor's office visits -- 2 for me and 1 for Lorraine.

First up was my first meeting with my oncologist since before my last treatment -- the all-important post-chemo meeting. Most importantly, we talked about my follow-up care -- the ongoing monitoring to see if I relapse or stay in remission. A lot of folks have scans quarterly during the first year, but my onc feels that the body has already taken a beating from the chemo and the 3 PET scans to date, so she opts instead for bloodwork and office visits quarterly and a PET scan every 6 months -- this for the first 3 years. For the next two years, 1 visit and 1 PET. After that, because the generally accepted "cure" turning point is the 5-year mark, we'll leave the frequency of monitoring after that for later monitoring.

This means that in 3 months she'll check my blood counts and give me a brief physical, which will undoubtedly involve lots of purposeful prodding of my lymph nodes. 3 months later I'll get another PET. She DID say that if I'm more comfortable getting a PET at this first 3-month mark, we can go ahead and get one, but she recommends not doing it in order to give my body a break. (The scans' radiation does add up.)

We also talked about my weight loss -- or the lack thereof -- and bottom line, she told me not to be hard on myself for losing only 4 pounds; on the contrary, she said that even this loss was a huge accomplishment at this time. She said that most people gain after chemo. I got a little teary, and explained that I was really struggling with my chemo weight gain. We just left it that I'd stick with what I'm doing, and eventually it will work.

At my request, she gave me a referral for a therapist experienced in helping folks with cancer. I'm having a hard time emotionally in the aftermath of the cancer -- like many others. Some of us get hit harder afterwards, after the "gotta get through chemo, gotta stay positive, I'm going to beat this" energy goes away and you're left with the emotional impacts of the diagnosis, subsequent treatment, and the personal upheaval of both.

I asked her to quantify my prognosis, given my personal stats, type of cancer, staging, response to treatment, etc.....and she gave me a "greater than 80%." She then said again what she'd told me before: The single greatest indicator that you're going to continue through remission and on to a cure is a 100% clean scan at the halfway point. Well, now, that is very, very encouraging.

The second appt. of the day was at my surgeon's. He checked out my incision, stuck on some new holding strips, and off I went!

Then it was on to the infectious disease doc to get some help for poor Lorraine. He was just completely impressive -- just so thorough, insightful, and knowledgeable. After getting a very detailed recounting of the chain of events, from the bite, through the symptoms, past the overnight hospital stay and subsequent cardiac catheterization and into resulting treatment.......after all of that.......he said it's very unlikely she's got Lyme Disease. Fascinating! The test is reknowned for false positives and negatives, and he said, based on the chain of events, it seems that something toxic probably happened, but that he's going to need more information before he can come to a final conclusion. So we're going to get him copies of all the test results (we thought they'd already been forwarded, but they hadn't) and go back to meet with him again in a couple of weeks. In the meantime, poor Lorraine gets so dizzy she has to pull off the road, has an ongoing drum beat in her ears, and gets what she can only call, "crazy heart beats" and chests pains. Her heart is functioning at 34%, it's surrounded by fluid, its electrical system is screwed up (left bundle branch block,) and she's almost always fatigued now. She's got 8 days left of her month-long antibiotic regimen, and takes 3 medicines for her heart (1 of them is for her cholesterol.)

So we wait.

In other news, I couldn't get an appt. with my podiatrist before Monday (unless I bumped my oncologist appt. -- which wasn't going to happen.) So that's when I'll find out if the entire nail needs to be yanked, or if we can get away with cutting it down to a quarter inch. We'll see. I can't stand my podiatrist, so if I can get a same day appt. with someone else tomorrow, I'll go for it.

I've been eating well, but no exercise for two days. I'm back on it tomorrow.

I Can't Even Freakin' Believe It

2005-07-26T23:47:00.000-04:00

Tuesday: 1156; cycled 30 minutes, going 8.3 miles

I am so upset. Just so upset. My other big toenail is coming off! I just can't even believe it. Since May, I've worn a closed-toe shoe a total of maybe 5 times. There's been no trauma to it. There's no sign of infection. It's simply separating from the nailbed, just exactly as the last one did. Last time it got infected after it had separated from the nailbed and I didn't yet know it. (Hello, red nail polish.) Because I was still in chemo, I couldn't combat the infection.

But NOW! To lose another one 6 weeks after my last chemo.....it's just so upsetting. And it's the other big toe! I cry every time I think about it. It's just so many things: it's the pain involved in its removal, it's that it's so freaking ugly, it's that I still won't even have full toenails back next spring, it's that the healing process is a lengthy one and will affect my daily actions. And this is a biggie: it's that I was just beginning to feel like I was regaining some sense of normalcy -- that I was more physically able to distance myself from the cancer, from the chemo, from the emotional and physical misery of the last 8 months. I was so reluctant to call it over and to feel like I could put it behind me; once I finally felt able to do that and open myself up to hope and this new chapter, BAM! Now the big toenail's bailing from the other foot! I was just thinking today that this was a time of reawakening for me. I was feeling like I was emerging from a dark corner, roused from an uncomfortable rest. I was loving the spring in my step, the way I could walk fast and carry heavy things, and take a deep breath at last. It just feels like such a setback. With a sucking whoooosh, I've been rushed back into the uncontrollable, unavoidable, incontrovertible helplessness of chemo side effects.

A part of me feels like I should apologize for being a baby about this and making a big production about a stupid toenail. A larger part of me feels, though, that it IS a big deal. It's a big deal to me, anyway. At any rate, it's my blog, and I'll cry if I want to -- cry if I want to.

That's it. I'm out.

Perseverance. Inches?

2005-07-25T23:51:00.000-04:00

Monday: 1160 kcal; cycled 30 minutes (8 miles), WATP 1-mile, full body weight workout

It's definitely harder staying motivated when you're not seeing any change on the scale. There's no "YEAH, look at what my hard work did!" I know that the stress hormone(s) that slow your metabolism to a crawl also cause the body to retain fat -- but can I still lose inches? I don't see how I can, if my number of pounds remains unchanged. It's not like women put on pounds of muscle in a few sessions -- hell, women don't put on pounds of muscle even when they're killing themselves trying to! So I don't know. I DO know that I feel a bit tighter. I know my thighs have begun to change shape, getting narrower again closer to the knee. I carry my weight primarily in my midsection; even at my heaviest I didn't fall into the camp of women who have saddlebags and wide asses. I have the big, "Whoa, what's she got in there!" stomach that puts you at greater risk for heart disease. Which reminds me -- I want to get a post-chemo, post-cancer physical just to get what we used to call at Starbucks the "up to now," which is simply their parlance for "give me the quick and dirty on where we are with it right now." I always loved that expression. Anyway, I'm interested in finding out if my overall cholesterol is still strikingly low, and my good cholesterol pretty good. I want to know if my heart is still functioning as well as it did before I pumped my body full of Adriamycin, one of the chemo drugs known to negatively affect heart function. I know my blood pressure is lovely, since it's been lovely before every chemo, the day after all the chemo's, and just last week, when it was taken at the gynecologist's office. (And if it's lovely there, with the stirrups pending, well then you're doing just fine!) I just want to find out how I'm doing now, so I have the new baseline.

Oh! My thighs....I was talking about my thighs. Yes, well I do not run to wide thighs, relative to my overall size. And inches -- I was wondering if I could still lose inches. I guess I'll measure my various parts so I have some basis for comparison. I guess I should have done that a month ago, when I started to exercise again! I'll have to pay attention to the pants-o-meter also. I know that one pair of pants that had grown a tad snug since their purchase in late April are now less snug -- but I'll have to check out some other clothes to see if I'm fantasizing. I just don't see how I can lose inches when the scale isn't budging and I'm not lifting enough to be gaining muscle mass. I've been working for fitness/capability/energy gains -- and the hope that all the exercise will help to jumpstart my metabolism. I also want to make sure that I'm fully entrenched in exercise/endorphin heaven before I go back to work September 6th, so I can muster the wherewithall to get my ass up out of bed at 5:45 every morning so I can do some HIIT (high intensity interval training) cardio for a half hour before work every morning, do still more on a couple of worknights, an hour on a weekend day, and weights on two weeknights and one weekend day!

I know you can't argue with your body -- but I sure do wish I could reason with it! It will just have to boil down to faith -- faith that if I continue to do the right things, my metabolism will have to comply. I remind myself that I continued to go to chemo knowing that eventually my new best friends A, B, V, and D would kill the cancer cells despite the difficulty of the process. This is not so very different when I think in terms of discipline with faith -- and it feels a hell of a lot better physically!

Perseverance.

Any physiologists or physical trainers out there? Somebody? Anybody with a clue?

Back Again

2005-07-24T17:16:00.000-04:00

Wednesday: 1584 kcal; 30 minutes cycling 8.25 miles
Thursday: 1979 kcal; no exercise
Friday: 1179 kcal; 30 minutes cycling 8 miles, WATP 1-mile, upper body weights
Saturday: 1771 kcal; WATP 1-mile

Just a quick update to report that I've lost another pound, bringing me to a post-chemo total of....4! I'm having a hard time with my metabolic slowdown. It's depressing. I just keep reminding myself that if I were eating off plan with my metabolism this slow, I'd surely be gaining weight still. The other day my gynecologist told me that it usually lasts at least 2 months. If that's true in my case, then I'm halfway there! In the meantime, I know I'm gaining strength and increasing my energy. I know I can feel muscles again for the first time in 7 months, and that's a most excellent thing. It's hard to stay focused on the positive, because I'm so accustomed to seeing my hard work and discipline pay off in actual pounds lost. It is what it is, though. I just need to get over myself, I guess.

I'm also in that weird, no man's land of emotions that follows the end of chemo. Everyone expects you to be this effervescent ball of ecstatic energy -- and you're just not. A lot of us get downright depressed. I know I am. I'll talk more about this another day -- I need to formulate my thoughts first before spilling them here.

As for Lorraine, she's still smoke-free -- YAY! -- and absolutely MISERABLE. She's struggling with it terribly. And her blood pressure is so low, she keeps getting dizzy and having odd heart palpitations, the sweetheart. She wore a heart monitor for 24 hours, and we'll get the results next week. She's feeling very down about how she's feeling physically, as well as missing her cigs tremendously. This is my blog, so I'm not going to go on about her state of being, but it certainly has an effect on how I feel, what with loving her so much and all.

It's just a tough time for us both right now. 2005 has been a real challenge.

A Quick One

2005-07-19T21:58:00.000-04:00

Tuesday: 1483 kcal; lower body weights

My chest is still sore from yesterday's surgery. Last night some percocet helped. I wasn't supposed to do any exercise this morning, so this afternoon I got in a lower body weights session. It hurt my chest to hold the weights, but I finished it. I'd intended to do cardio later on, but Lorraine was feeling really poorly so I stayed with her instead.

Tomorrow we see her cardiologist, so we're both anxious.

My port's out!

2005-07-18T22:38:00.000-04:00

Monday: 1574 kcal; No exercise

My port's out! Buh bye, old friend! It wasn't the most pleasant experience ever -- I'd heard there was no pain at all, but that was not my experience. I had more than 7 shots of lidocaine, and STILL I felt the surgeon stitching me up! I say more than 7 shots because that's when I stopped counting, but I know there were more than that. The procedure was done in the surgical center adjacent to his office, and I had to get naked, get into the two oh-so-flattering hospital gowns (you know, one with the opening in back, followed by one with the opening to the front) and the dorky floor socks, followed by the surgical poofy hat -- because I have about a half-inch of hair on my head. I was on my back and after a bunch of sting-and-burn lidocaine shots around the left half of my chest, I could still feel the needle when he touched me with it, so he kept giving me more. Eventually I was good, and he cut right over the original -- and, I might mention, beautifully healed -- incision. Then I felt a lot of pulling and pressure, and an unfamiliar awareness of some movement within a vein. (You don't expect to feel one of them, do you?)

I didn't wake up in time to exercise before going in for the procedure, and then the doc told me to hold off tonight and limit myself to lower body movement tomorrow. So no exercise for Sarah today!

We did have an interesting conversation during the surgery, though, about weight loss after chemo. I was explaining that I was working hard to lose weight but that it's very slow in coming off. He explained that when the body experiences great physical stress -- like that caused by 6 months of chemo -- a stress enzyme is released which ultimately results in a significant slowdown of the metabolism, as the body is in self-preservation mode. Eventually it relaxes and gives up the weight, but it takes a while. He said that exercise helps.

At least I know a little more about why I've only lost 3 pounds since the end of chemo, despite doing all the right stuff. It'll happen, eventually. There's no way I'll give up, so it's just a matter of being patient while I continue to do what I know is best.

Identity crisis (OK, a small one)

2005-07-17T21:23:00.000-04:00

Sunday: 1592 kcal; 40 (consecutive!) minutes cardio, biked 10 miles

I'm so excited to have done 40 straight minutes on the bike! This is the most uninterrupted cardio I've done since chemo! Very cool.

Tomorrow I get my port out! I had planned to do full body weights tomorrow, but since I'll have new stitches in my chest and will probably be sore, I'll do weights on Tuesday and just stick to cardio tomorrow. I plan to get in at least 40 minutes, but an hour would be better.

In case anyone's wondering how I'm doing otherwise, in terms of my chemo recovery, I'll share here what I wrote on the Hodgkins Message Board:

I had no eyelashes or eyebrows, and was almost completely bald at treatment 7, then my head hair and eyelashes started to grow back. Now, about a month post-treatment, my hair is about as long as Lorraine's in the pic she posted in the Thursday Chemo thread. (So like a half-inch long.) It's thicker and much more curly. My eyelashes aren't as long as they were, but they're pretty much back. My eyebrows are starting to come in, but they're so thin, fine and sparce you wouldn't know it. (I still have to draw them on with a powder and brush.) My energy continues to improve. At first it was AWFUL....if I walked a block my heart would race and I'd lose my breath terribly -- so I was unable to talk and felt like I was going to fall down. It was pretty bad. I had to rest going up a flight of stairs because I got so winded -- and again, my heart would beat terribly. Now, just a few weeks later, I am riding my exercise bike for 40 minutes a day, doing in-home power walking/aerobics, and working out with free weights! I can't do it all at once -- I spread it out -- but I'm THRILLED to be able to do this much this soon! I get tired easily if I run around during the day, so stamina is still an issue, and I suspect that I'm taking from a finite store of daily energy when I'm applying it to the exercise.....but it's worth it to me. I have insomnia at night, and am considering taking Simply Sleep or something else that's over-the-counter and non-addictive. (I'd take valerian root, but it wipes me out the next morning.) My chemo brain continues.....I forget words, what I was talking about, that kind of thing. I guess that's pretty common; I sure hope it will dissipate with time. My partner tells me I'm much more alert and engaged, and closer to my old "vivacious" self. Well, THAT's good! I know that I'm still NOT myself, but maybe this is my "new normal" -- maybe it's just part of this recuperative time -- maybe I'm a little depressed -- maybe it's the Wellbutrin -- who the hell knows? I just know I'm not as bubbly as I used to be prior to the diagnosis. It would be great to get that back. I'm still very POSITIVE, and I feel enormous gratitude and appreciation for just about everything! I just don't have my old mojo -- that old spark -- you know? The only residual pain or discomfort I still have is, um, anal in nature .....leading me to believe that perhaps I had some of those dreaded internal hemorrhoids, that went untreated. So #2 is still an issue, no matter how much fiber I eat! (I average 40 grams a day!)

Some of that might be, ahem, a little more than some of you might care to know -- but for those readers who come here looking for some sense of what to expect when chemo's over, this is the sort of real information they're looking for.

This blog has a sort of dual identity. At this point, I get a little over a hundred visitors a day, and they are from two disparate groups: those looking for weight loss commiseration -- and those either already diagnosed with Hodgkins or fearing that they might be. I, of course, am a part of both of these communities, and here in this blog I talk, of course, about both topics. Occasionally I have this fleeting fear dart across my mind that some Hodgkins person will come here seeking information, find only my inane blatherings about cardio intensity intervals (do them, they're great!) and recommended minimum protein consumption per pound when weight training (at least .6 - .8 grams), and high-tail it right out of here wondering why they got linked here in the first place! Maybe I'll revamp my little bio on the sidebar. Over and above that, che sara sara, you know? It can't be helped. But still it's a concern, for a conscientious girl like me. ;)

We now return to our regularly scheduled program....

2005-07-16T22:23:00.000-04:00

Saturday: 1683 kcal; 30 minutes cycling, going 8.25 miles; WATP 1-mile (20 minutes); Upper body weights workout

I'm feeling pretty pleased with my exercise today! Go, me! 50 minutes of cardio is a real step in the right direction. My thighs were still crying uncle from Wednesday's workout, so I stuck with yesterday's plan of doing an upper body workout only. Today's upper body workout consisted of:

2 sets of 12 reps of:

One-Armed Dumbbell Rows
Shoulder Presses
Dumbbell Bench Presses
One-Armed Triceps Extensions
Bicep Curls

I lifted to failure with each, so I feel good about it. I did the right before the weights, going right into the weights while my heart rate was still high. I only rested for 30-45 seconds between sets, so I think I still got some cardio benefit from the workout. These were in the afternoon, about an hour and a half before dinner, then the WATP 1-mile power walk was about 40 minutes after -- and my ass was dragging by then! I loosened up, though, about a quarter of a mile into it, and still had a good workout.

My calories were a tad higher today because I wanted to make sure I got in enough protein to support my weight lifting efforts, and unfortunately I didn't realize until dinner quite how behind in protein I was! Thank goodness for Protein Factory, where I get my absolutely awesome protein powder! This is also the only place I've heard of that offers to customize your own protein powder; they'll make one custom, to meet your needs and taste preferences. Very cool! If you do visit there, the custom stuff is created under their "Lab" tab.

Tomorrow will bring more cardio: more cycling, and another mile (or two?) with Leslie. I was wondering tonight as I was finishing up the 1-mile if maybe I mightn't be ready to try out the 2-mile. I know I can burn more calories on the exercise bike, so it's tempting to invest more time there. On the other hand, the WATP provides more than just a cardio benefit; it helps with balance, core strength, and flexibility.

Alright, I'm boring myself silly -- so I'm giving myself the boot!

Look at that: not a word about cancer.

Still Hurting, a Path Interrupted, and My "Port Date!"

2005-07-15T22:44:00.000-04:00

Friday: 1238 kcal; 30 minutes cycling 7.2 miles

Hey there, sports fans! I am still hurting from my workout of two days ago. Of course I expected that this would be the very bad day -- the second day after usually is. Everything hurts, but it's the legs that are killing me! I think maybe I'm not ready yet for all three of the leg exercises in one session -- at least, if I want to work my legs three times weekly. So I'm going to alternate between lunges and squats, and keep the stiff-legged deadlifts in the full body workout. I'd planned tomorrow to do another full body workout, but my legs need more recovery time, so I'll just do upper body. Today I did a half hour on the bike, slowing down my pace a little to give my legs a break and going just over 7 miles.

My current muscular limitations illustrate the toll that six months of relative inactivity took on my body. Even as I'm not particularly surprised by it, I continue to overestimate my abilities. I guess I'm still in the process of establishing a baseline for my capabilities. Once that's done, I'll just focus on improvement and rebuilding.

In darker moments, I feel robbed by the cancer. I'd have reached goal (135-140 pounds) a month or two ago, and I'd have continued to make the fitness gains I was so proud of. My cardiovascular health was terrific, I had great muscle tone for my size, and I was in the process of making significant strength gains. I know this train of thought is negative and unproductive. I do. I think it's natural, though. I'm sure these dark thoughts and darker feelings will pass gradually, particularly when I start to see some real progress in either my weight loss or fitness -- whichever comes first. I have tried so hard to stay both positive and pragmatic about all of it -- I still do -- but these thoughts creep in nonetheless. I think it's natural, and I'm giving myself a break for it, as long as I don't get mired in it or in any way demotivated. I haven't given voice to my resentment here because I was concentrating solely on getting better. That was my primary motivation during treatment. I knew that after treatment ended I'd be resuming my interrupted path -- well that's where I am now, and I'm feeling a little pissed! I'll get over it, though. Maybe I'll feel better after I get around to reading a couple of the books I have on life after cancer. Or maybe I just need to see the aforementioned measurable progress in my own body. I'll let you know.

In other news, I'm simply thrilled to report that I am scheduled to get my port out on Monday!! I am so happy to be getting this foreign object removed from my chest. Don't get me wrong: it was a godsend throughout treatment (even if my insurance wouldn't allow me to go to a place where they could access it to take my blood every two weeks.) Even used just for receiving my chemo, it was totally worth it! But now that treatment is over, I want it OUT. Getting it out will quite graphically signify the end of treatment to me. I understand that my surgeon will first numb the area, cut my chest again (the scar is a couple of inches,) and then pull it -- and the tube that goes into my chest through a major artery -- right out. I should feel some uncomfortable tugging, a strong pressure, but no really major pain. He'll put in some more of those dissolvable stitches, and probably ask me to return in a week or two. I want it over with, so I'm looking forward to it.

Oh, the Carnage

2005-07-14T17:40:00.000-04:00

Thursday: 1303 kcal; no exercise

Good Lord the pain is awful. I guess I did some good stuff in my workout yesterday, because I'm in agony today! I did my first full body weights workout in many months yesterday. Here's what I did:

2 sets of 12 reps of:
Squats - 20#
Stiff-Legged Deadlifts - 20#
Lunges - 20#
Lat Pushdowns - 20#
Shoulder Presses - 20#
Bicep Curls - 10#
Dumbbell Bench Presses - 20#

And 1 set of 15 unweighted Calf Raises

It's pretty sad that 20 pounds did so much damage, but you've to start somewhere, right? As for cardio yesterday, I did the WATP 1-mile in the morning, and my warm-up for the weights was 10 minutes walking briskly on the treadmill.

Tomorrow will bring 40 minutes of cardio, and then on Friday I'll pick up weights and hurt myself all over again. Right now I just want to be able to get up off my couch without wanting to cry. The arms are smarting, but it's the legs that were hit the most -- quads, hamstrings, and even those glutes. Exactly what I was going for with the first three of that line-up! I guess I still know how to do them, even after all this time! If there's truth in "No pain, no gain" well then I expect enormous progress.

Oh woe am I. I'll probably live, though.