The "anticlimactic" climactic transplant

So I successfully was transfused Friday with my donor's stem cells. The procedure was quite odd; one lady from the land of frozen cells came up, took the 4 bags of stem cells out of the liquid nitrogen with tongs, and thawed them one by one in a water bath brought into the room for that purpose. It was quite a system, actually. The nurse simply ran the cells into my central line, and when she was finished, another bag was ready. It was pretty cool. And now the donor cells that will grow my new immune systems are swimming around in my body,
What was NOT cool: Earlier that morning about 2 am or maybe 3, it was time for vital signs. This regimen involves a blood pressure reading, a pulse check, an oxygen saturation test, and a temperature reading. Well, at this vitals checkup, I had a fever of about 100.6. This was serious enough that the nurse had to immediately draw blood cultures and send them to the lab.
The good news is that my temp dropped back to normal (or my low version of normal, by 7 a.m
Flash forward now, to my room. The transplant is finished and I'm laying in bed, half comatose and enjoying the fact that all the hubub is over with. So vitals happens again and, to my dismay, the temp reads about 102 ! Scary. and it kept going up, maxing out at about 104 degrees. Yikes!
In the meantime, I was getting the shakes again. Not nearly as bad as a few weeks ago, but bad enough that they wanted to medicate me for the shakes again. In retrospect I think this probably wasn't necessary, and the three shots of demerol stopped the shakes, but also put me out more or less for the whole of Friday afternoon.
By the way, did I tell you I was having bad diarrhea that morning, too? I'll get ot that later.
There was some good news:Dr. Battiwala and Pam, my awesome nurse practitioner stopped by with the results of the blood culture: Strep. The "poo" culture taken friday morning turned out to be CDIFF, one of these bateria that everyone has but those with wacky or weak immune systems are subject to infection. They started me on the appropriate andtibiotics, and even wrote a nurse's judgment dose of Tylenol
Friday was a rough night. Let's just say the diarhhea had a mind (and mess) of its own, the least flattering problem I've had in this whole cancer thing.
Saturday was similarly upsetting. The fever would rise and fall, rise and fall. Dr. Battiwalla suspects that my central line is infected, a guess that makes sense to me. We'll know More Monday, probably, about that particular issue.
Believe it or not there was one more issue Saturday: Painful peeing! Nothing like urinating out blood clots to ruin a guy's day. It got so bad that the nurse eventually decided along with the doctor, that I needed a catheter. Yes, a catheter up the old urethra. Believe it or not the peeing pain was so bad, the catheter insertion pain, though painful was worth the effort. The docs are still not quite sure why I was having the Problem with the peeing pain in the first place2, but this should be more clear in a couple of days.
After all this, I am feeling a lot better today (Sunday) At least things are a bit more under control.

Radiation, new cells and other musings

Nearly halfway through the total body irradiation I am doing well, I think.
No major pain, nausea or tiredness yet, and the only complaint I have really is some muscle soreness, especially in the jaw and a few other places.
The radiation experience is quite odd. I go down twice daily, once about 8:15 and once about 3:30. Most of the time is spent getting me set up in this uncomfortable barstool/metal frame and getting the lead shields (about the size of a deck of cards) situated in the right place. The machine, a large hulking thing about 15 feet away then buzzes on for 6 or 7 minutes, then I am flipped around and the whole thing starts again, except they flip me around and do it on the other side.
I have 5 more treatments, two tomorrow, two Thursday and and then one one more Friday morning. Hopefully I'll be as energetic and enthusiastic then as I am now.
Which leads me to my new stem cells. They showed up yesterday and are safely frozen here at RPCI. This is the last step in everything being complete and I am so excited to be moving forward.

Getting started

The preparation for my bone marrow transplant begain yesterday, with a strong dose of a chemo called cytoxan.
Cytoxan is one of the oldest and strongest chemotherapies around. It is so strong that I am constantly infused with fluids, which has meant many trips to the bathroom, to which I am staying close by. The reason for the fluids it so my kidneys can excrete the stuff out of my body as quickly as possible.
I made it through yesterday's dose with no major problems. Today's dose has been even better. The good news is today marks what could be my last chemotherapy ever. There will be no chemo after Friday's transplant, after today actually.
Tomorrow starts my first dose of total body irradiation. This is is the one where they shoot photons through my body, flip me around and do the the same on the other side. Common side effects are a lot like chemo, except I may be tired and a bit sunburned. This happens twice daily until Friday morning, when I get my last dose. I'll get my cells Friday afternoon.
Tomorrow also is they day my donor gives her cells. They will be flown to buffalo, mixed with a preservative and frozen, then thawed Friday for the big day.
I am ready to get the transplant. I feel good, and am excited that everything is getting started. It feels like for the first time time that each day I am here is one day closer to to the day I get out, and that is something to wake up and work towards every morning.

Great news

Simply put, my latest bone marrow biopsy has turned out to show no leukemia.
This is the best news we could ask for.
Having no leukemia in my bone marrow, or at least testing negative for it, gives me much improves odds of a successful transplant. That, coupled with my impressive performance results from all accounts, means I am now in more or less the best shape possible going into the transplant procedure.
It makes the month I've been in the hospital completely worthwhile.
The process starts Friday, with a family meeting convening the BMT team, Diane, mom and I. I will start my chemo Saturday, then total body irradiation, 9 doses between Monday and Friday. I will get the cells Friday afternoon.
The news was delivered by Trisha Doucette, my preferred nurse practitioner here an and a great, consistent and compassionate clinician who also performed the biopsy. She was very glad to give me some good news. Barb was here, too and did a great job of letting Trisha have her moment.
Adding to the good day, Dr. Wexlar acceded to my request and has allowed me off-unit privileges until Friday. I will also be enjoying some off-campus food thanks to Mom and Diane over the next few days.
This is all quite a blessing and I am very grateful for all of these positive developments.

In or out?

Written today after a weekend of A: being told (Friday) I would be able to go home for a few days, then B. finding out that that wasn't allowed (Monday), then being given the option of staying locally but being discharged. A basic disagreement between the BMT team who will be taking over my care friday, and the leukemia team who is charged with keeping me here in the meantime. I didn't start this fiasco, but this is my reaction, written in an email to a good friend who asked what was up:

After all, I'm going to stay here. Apparently it's OK for me to leave and stay locally, but what's the point? The risk of leaving is significant, and if I can't go home, it's just not worth it. If it's too dangerous to go to Vestal, I guess I'll just have to stay. Dr. McCarthy is quite persuasive and he did visit me again this afternoon. I of course offered the quite reasonable (to diane and I) alternative of a day pass --get checked up in the morning, head out and drive around with diane, etc, wearing a mask at all times -- but apparently this is neither realistic nor acceptable to insurance companies. Sigh. He did acceed to me heading off the unit to the lobby/indoor walkways of the hospital wearing a mask, but I'm waiting for confirmation on even that. Someone is supposed to return this afternoon. You're right. The whole pissing contest should have not been revealed to me. A simple conversation with the BMT team last week would have discovered the issue, which frankly they had brought up before, at least Battiwala did. I was well, not perfectly happy, but eager and excited about the transplant last week, and i've had my little cry and my little tantrums and I'm sure by tomorrow I'll feel better. This isn't the first time such a contest has taken place in front of me, and I'm frankly a bit sick of the whole fiasco.

Feelin' good in the Neighborhood.

Though my blood counts don't seem to be reflecting it, (yet!) I'm feeling better yesterday and today than I've felt in weeks.
A few things likely to have contributed to this: Chemo done (for now) Blood infection gone, heavy anti-blood infection medicine stopped, and general recovery from the heavy amount of treatment. Also, I was a bit dehydrated over the weekend and have gotten lots of fluids and two (count 'em!) TWO units of red cells since the weekend. Apparently the slight dehydration falsely lowered my RBC count and therefore my hemoglobin, the stuff in your blood that carries oxygen. Hence, with adequate hemoglobin, my mood and health improves.
Oh, and tomorrow celebrates four weeks here. Yippee! This is sarcasm, of course.
Honestly though, I'm feeling a lot better. And eating! Nausea has gone away, food is tasting like food, such as it is here. But I've had dreams of yummy meals I haven't had in quite awhile. This is good, as I need to build my weight before transplant.
Speaking of transplant, mine's scheduled for the 22nd. My donor showed up for her pre-transplant workup yesterday, which is good news. The plan is for the cells to be harvested on the 18th, then cryogenically preserved, that is, frozen until the day I get them. It seems like just around the corner now.
One other thing that has improved my mood and temperament this week: I fired the residents. If you're not privy to hospital care, or even if you are, you may not be aware that medical students are often responsible for evaluating patients. So it is the case with Roswell Park. What you may not know is that you can request to see real, live professionals instead. In my case, I have established a good relationship with the nurse practitioners on the leukemia team here, but wasn't seeing them up until this week. Finally, after discussion with a good friend, I told Dr. Wang on Sunday that I would prefer to see the NPs in the morning and then whatever doctor that was on service for rounds later in the day.
The result? I am working with my preferred NP in the leukemia team, who knows me and my case inside and out, is willing, able and eager to go to bat for me with the doctors and generally is competent. This is important to me, as I am fighting a pretty tough battle here, and having one more competent person on my side means I'm closer to my goal of getting well.

Giving the gift of Platelets

My mother-in-law Kathy and her husband Mike visited today; Kathy came specifically to donate platelets.
Diane, of course and thank goodness was here too, so it was quite a busy day in 5E Room 20.
Kathy apparently had quite a time giving platelets. I am told the donation center hooked her up to this big machine, took her blood out, harvested the platelets and returned it to her body. She was hooked up for an hour and 40 minutes, which seems like a long time to be hooked up to anything, unless you're used to chemotherapy and getting blood transfusions. She said the needle hurt quite a bit towards the end, and she had some discomfort in her feet. Other than that and some quivering lips and a bit of a chill, she made it through more or less unscathed. At least that's what she told me.
I am doing better than a week ago. Almost constant antibiotics (2 different kinds three times a day) have made that blood infection retreat. Blood counts haven't come up, and are really low, but we didn't expect them to come up yet either. I will continue on the antibiotics for a few more days however, as there is a prescribed time I must take them. Fine with me...that infection was no fun at all.
Got some weird news about the transplant Wednesday. The donor had to reschedule her workup for Monday...some kind of last minute problem. Made me a little bit nervous, but I understand people's lives can be tricky sometimes. No more changes though! A patient here could do with some solid, predictable news for once.
The latest on a date for my transplant is June 22. Seems like it's almost there now. I'm just focusing on getting there, and then we'll worry about what comes after.
Sorry that I haven't put a post up in a few days. Some nice comments in the meantime. Thanks!