Transplant days -3, -2: Total Body Irradiation (TBI)

I think my anxiety leading up to this procedure was probably disproportionate to what the actual experience was. Fear of the unknown. It was fairly simple: put me  on a table, close the door and a low-level buzz for about12 minutes. Then they came in, literally flipped me over and 12 minutes later I was done.

Now I’m definitely feeling some weariness but am not totally wiped out. Some nausea but Atavan has been helping.

And while I was roasting today, they were allo-cleaning my room — making it biologically safe for me. It’s a cleaning that takes 4 hours to do and everything is scrubbed down and reset and wiped down. And then my first thing upon coming back was taking an antimicrobial shower. (That will be every day now.)

Tomorrow’s the last day of TBI and then the transplant on Thursday. Will write again as time permits.

Strength and Love,
Seth

Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th (of in Philadelphia on September 29th) – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: http://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Transplant day -4: Chemotherapy again

They are pumping me full of saline solution – liters and liters of the stuff – to keep my bladder irrigated which is the standard procedure to avoid infection. The corollary effect, however, is a lot of … uh … discharge. The Chemo is starting to make me queasy but it’s being managed. My appetite is already gone and I’m feeling sleepy and a little down, but generally still feel like I’m on a good track.

Tomorrow we start radiation. That scares the shit out of me. But I have CDs with me that they can play whilst I’m being zapped so hopefully that’ll be ok. It may be difficult to write for a couple of days given the upcoming procedure, but I’ll try.

Strength and love,
Seth

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: http://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Thank you.

Transplant, day -5: Chemotherapy

It was a fairly uneventful day after getting a foley line installed. I received my chemo today along with anti-nauseau drugs, some magnesium and a bunch of vitamin E. I had a diuretic to help get some of the fluid out of my bladder which is being flushed and that’s worked well. I’m tired earlier than usual so I’m going to sleep. Will try to write to up the blog as I can through the process.

Strength and Love,
Seth

PS: Please remember to support us for the Light the Night Walk:

To make a donation, please visit:
http://www.active.com/donate/ltnNewYo/2154_krpalmer

To join the team and walk with us in NYC on October 4th – my mom and Voodoo are team captain (I’ll be in the hospital in the middle of the transplant procedure), please visit my recent blog entry with directions to join: http://survivingleukemia.wordpress.com/2007/09/09/light-the-night-walk-nyc-philla/
(it’s not the greatest user experience – my apologies in advance)

Thank you.

Back in hospital now

Was admitted this afternoon after some initial administrative issues. Had the procedure to install my hickman lines and am resting comfortably before moving me to my bed up on Rhoads 7. More to come.

Transplant dates set

After months of set backs and other various delays, we’ve finally set the dates for the bone marrow transplant. I return to the hospital on 14 September and begin two days of chemotherapy after that, then three days of radiation. On 20 September, I receive the transplant cells, and the count-down begins: 20 September will be Day 0. We expect the first 30 days I’ll be in hospital, and then another 70 at home. Then day 100 – that’s the magic day when I can start to resume a some-what normal life without isolation precautions. Day 100 happens to work out to be December 30th — so I’m looking forward to celebrating quite a bit come New Year’s.

Bone Marrow Biopsy no. 4

Friday I had my fourth bone marrow biopsy. We were testing to find out how much leukemia is still in my bones. Above a certain threshhold, and I’ll need to go back for another round of chemo before the transplant. This will improve my chances with the transplant. Of course, such a circumstance may also set back the date of the transplant. Now as I am often reminded by my friend/survivor, Gail, timing really sucks with cancer and you are nearly helpless to do anything about it. And this, in particular, could really suck – on several levels: 1) the next round of chemo is stronger than what I’ve received before, and 2) I just want the transplant so I work towards recovery and not put it off anymore.

So this weekend, while a lot fun seeing Voodoo, was particularly stressful. I chose to have the procedure on Friday because when presented with the option of Friday or Monday, I decided on Friday so I can just get started – no reason to put off the inevitable. But it was a whole two additional days of angst waiting for the results, which probably won’t come back until Tuesday or Wednesday.

Last time, the biopsy showed close to 70% leukemia in my bones. We have to get that number down. If there’s anything over 30%, it’s back for another round. And I’m tentatively scheduled to enter the hospital Thursday. And being the type-A personality that I am, I’m going to draw bloods Thursday morning at the oncologist’s clinic so we can do the blood cross-typing and matching so that after I get into my room we can start treatment right away — I just don’t want to wait. My impatience to move towards “cure” is becoming obsessive.

Anyway, my doctor told me I may not be on the same floor as I was the last time. To be honest, that really pisses me off. I really want to be in the same place … I never thought I’d feel that way … but the prospect of having to get accustomed to a whole new floor and staff just isn’t palatable. Send me back to Rhoads 7! We’ll see how that goes.

Update coming soon. Until then, strength and love …

Healthier today …

than I was when I was admitted in to the hospital. Take a at my blook numbers from the day I went to emergency room on February 9th, with those from this past Thursday.

Date Day WBC ANC Hgb PLT Transfusions
10 Feb Day -3 4.9 147 10.8 25
31 May Today 1.1 264 11.2 68  

Admittedly, I had a few more white blood cells back then, but remember that nearly every blood cell was a leukemia blast. And while they’re been showing up in minuscule amounts in my blood now, we’re not talking about anywhere near the amount when we started.

Lastest health update

Generally, I’m still feeling fine. My blood numbers, however, have drifted a little lower. There’s no cause for concern just yet. If the platelets continue to drift even lower and I require a transfusion of platelets, that will land me back in the hospital. But that was always a known. Leukemia blasts have been showing up in the blood – 5% on 17 May, 2% on 21 May, but 0% on 14 May (and we don’t have today’s numbers yet). So it’s still there, but not enough to get me back. This is actually surprising.

In fact, during my weekly check-up with the oncologist today, she said she was very surprised at how well I’m doing both physically and emotionally. This limbo time is very difficult and following the rules is difficult, especially when you’re “free” from the constant monitoring of the hospital staff, but I’ve come to think of it just as another part of my daily routine. That’s the physical.

For the emotional, I can only say that this limbo period – waiting from hospital discharge to the time of the transplant, is, for lack of a better word or phrase, maddening. I’m neither in remission, nor cured, and the prospect for being “cured” requires a long and difficult recuperation period. There are times that I have begun to question the quality of life issues, but choosing to push up the daisies is simply not something I think I could willingly choose. But I wonder where the strength will come from for the future.

I have had the good fortune to correspond with another AML patient who is going through the transplant process. Although we’ve only exchanged a few emails, and I have read his blog fairly regularly since he received his transplant, there is an ephemeral quality about the stride towards life that cancer survivors have, and it’s really extraordinary. It’s not a flight from death, and it’s a fight for life. But when you’re fighting your own body against a cancer, it’s very tough and my normally rather stable outer shell is starting to crack a bit. I need a vacation.

So I’m hoping this holiday weekend will be a good one. I’m hoping to spend time with friends, not too far away, but far away enough from Philadelphia to feel like it’s break. It’ll probably be the only one I’ll have between now and very late this year (at the earliest).

I don’t like ending a posting so bleakly. So happy thoughts: Voodoo went to see the vet this week and she got a clean bill of health (thanks, again, Lenna!). Despite concerns that she might be older than we were originally told, we learned that she most likely is 6 … just as we thought. So my girl is good and that keeps me going. And maybe that’s my focus – I have someone else to take care of beside myself. Maybe that’s the key – to realize the world, and your part it in, is larger than you think and demands more of you and keeps you pushing yourself forward.

And that’s a nice way to end this post and go to sleep.

Strength and love …

Going to the oncologist

This is a visit I generally dread. Not that I don’t like my oncologist – I definitely do. But I always feel like I have to wade through a bunch of other sickly people and the smell just reminds me that I too am very very ill. Which I’m starting to resent more and more.

So Monday’s blood analysis has my numbers floating in the same areas before – a little on the low side, but I still feel strong, mostly, and have been doing a lot more work and have even been to the office. Although this weekend, I started feeling a little more sluggish than usual. I was enjoying lazy mornings in bed but I think it’s something else. Depression was one thing that came to mind. And then on Sunday, I realized it could be something else … something that Monday’s call with the oncologist started getting me worried.

“The machine says that 3% of your blood looks funny,” she told me. She was sending it off to the pathologist for further examination and that we would discuss the results at my regular appointment with her on Wednesday. Of course this whole day, the suspense has been killing me and I called the office to see if the pathologist’s report came back yet, but I did not reach the oncologist and she didn’t call me back this evening.

Naturally, my worst-case-scenario paranoia has kicked in and I’m pretty sure that what I’m going to hear on Wednesday is that after months of the Leukemia not showing up in my blood, that it’s finally re-asserted itself. Which, in turn, will most likely mean another return to the hospital for yet another round of chemotherapy – the dreaded double dose of Ara-C.

Whatever it is, it has to wait until after the weekend though, all other things being equal. First, I’m expecting a furniture delivery on Wednesday so I can start to feel like I have a home (though I don’t know why since I’m hardly going to be around to appreciate it), but, more importantly, Voodoo is coming down for a visit on Saturday and I really don’t want anything to interfere with that.

I’ve been reading a lot about the upcoming transplant procedure from a thick booklet the oncologist gave me at my last visit. I’ve also been doing my own research on the procedure and have been reading other Leukemia patients’ blogs who are going through transplant now. The process sounds absolutely gruesome and I have to admit that it terrifies me. I’m at the crossroads of not willing to stop living yet, but I just don’t know how much more of this I can endure.

I’m trying so hard to be strong for myself, for my family and for my friends, but lately, that’s been breaking down. And I think my general malaise and sloth are indicative of minor depression. Given the circumstances, I don’t think that’s unreasonable and on my call earlier today to the oncologist’s office, I asked if they could refer me to a therapist with a specialty in working with Leukemia patients.

So I’m trying to do the right things. I read recently that minor depression during the transplant process – before, during and after – actually reduced mortality rates from those patients exhibiting no depressive symptoms. At first I was shocked at that result, but then started thinking that if people are completely emotionally detached or can’t confront their emotions on something like this, there could be a deleterious effect on the body. So maybe confronting those emotions is the right thing to do.

But I am profoundly sad and scared. I cry that I just want to be better – not get better because the process of getting better scares me. I just want to be better. But I know that’s unrealistic, and I find little solace in the fact that the G-d awful process to come will get me there … eventually. It’s a very long road and it’s fraught with uncertainty, risks and dangers. I don’t want to scare anybody who reads this – I’m scared enough for us all (as is my mom, no doubt). But I just had to get this out here.

Maybe it’ll be cathartic. But in all my readings on this disease, I know I am experiencing the two things that I have always had problems with: accepting the loss of my dignity and autonomy and having to ask others for their help and support; and, two, being able to graciously accept it. I’m working on both, but it’s like I have so much to work on, I don’t know where it all comes from or how to keep it all together.

Your emails, cards, visits, calls all help – even if I can’t write back to everyone. I am very humbled by this experience and I wish I could be a better person as a result. I thank you for all your love, compassion, understanding and support. It means more to me than I could possibly ever try to explain. But please know, that even in the absence of me saying it to everyone all the time for all of the little things and all of the big things, and all of the things in between, that I do love you all and thank you from the bottom of my heart and soul.

Going back to the hospital … for transplant!

I am tentatively scheduled to go back to the hospital on July 8th to begin my transplant procedure. They have found several potential donors for me and right now, it’s looking good that I will undergo the procedure mid-July, with prep starting on the 8th. This is still tentative and needs to be confirmed, but this is the latest news.

I had my regular check-up with the oncologist earlier this week and it went well. There is still no pressing/medically-urgent need for me to go back to hospital right now so I’m still at home regaining strength, and have been to the office twice this week and anticipate working more in the office as my strength comes back. So until warranted, I’m still “free”.

I have been getting a lot of exercise and have been doing a lot of walking … and shopping (of course). The apartment is coming together really nicely and my brother has been bringing down lots of fond memories from my father’s place: photos, papers, our old trains! But there has been a part of me that really was hoping my dad would have heard this news from me, now, but I think he’s in a good place with a reliable messenger — maybe he even has some pull with the Big Guy. :)

That’s all for now. Gotta get to my ice-cream (hey! I lost 1lb since my last visit and I still look like a gaunt 164lbs, so I’m entitled! :) )

Strength and love,
Seth

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