and here is an update email chris sent to his friends about how he has been doing:
Dear friends, family, and leukemia groupies,
Mass-update time once again. I have returned from my most recent UCLA vacation weaker and more fatigued than when I went in, but the upside is that I am hopefully healthier (and cured?!). As far as anybody can tell so far, this last round of treatment ("last" meaning here both "most recent" and hopefully "FINAL") went well and did what it was supposed to do (i.e. completely erase my immune system and any remaining leukemia cells and replace it with a fresh set of stem cells which are creating a new immune system as we speak.)
This round was definitely more physically and mentally difficult than the previous ones. The total body irradiation was pretty mild, though by the end of the eight sessions I could tell my insides were a little tweaked (evidenced by 24 hours of straight hiccuping). Each session consisted of me being taped down in a bed (so I wouldn't accidentally move my position in relation to the emitter) for precisely 21.78 minutes per side. The radiation oncologist assured me that I would receive no super powers nor would my skin turn green, but I'm still hoping...
The four days of radiation were followed by two days of high-dose chemo. The doctor had warned me that this would be unlike the chemo that I had received earlier. He was right. For starters, it came in a glass jar instead of the usual plastic IV bag. I asked the nurse about this - obviously it was more potent and would just eat right through the plastic, right? She replied, "No, no, it's just what the pharmacy had handy." Bullshit!!!! The way it made me feel, I was surprised that it didn't come in a titanium canister. (I later found out that it comes in glass because the chemicals would adhere to the plastic. It is actually not toxic until it metabolizes in the liver. Then it is the same stuff as mustard gas. I don't think it qualifies me to receive WWII veteran benefits, though).
So the chemo-days were pretty unpleasant. Lots of puking and feeling not so chipper. Luckily that lasted only two days. The following day (the seventh day - coincidence?) was a day of rest - less puking and a noticeable rise in my spirits.
The next day, July 5th, became what the hospital staff referred to as my "new birthday" - the stem cell transplant. As some of you may recall, about 5.7 million of the little guys were harvested from my blood stream several weeks previously. The whole transplant process went smoothly and was pretty anti-climatic. Including set-up and clean-up time, the procedure lasted about 45 minutes to an hour, but the actual infusion of the stem cells was over in about eight minutes (they have a limited shelf-life once they are thawed, so the nurses try to get them into the body as fast as possible). I even got a lollipop! (Not for being such a good patient, but to prevent vomiting from possibly tasting the preservative that the cells are stored in.)
The days following the transplant were by far the hardest to get through. As expected, my immune system was gone from the treatments and it takes awhile before the newbie cells can get there act together and create a new one. Not to gross you out further, but there was lots of nausea, puking, fevers, mouth sores, and what I can only describe as the mother of all sore throats - every time I swallowed it felt like a handful of nails was going down the pipes. All of these symptoms were normal and expected, though that wasn't much comfort at the time.
I told the doctor that I felt pretty silly making such a big deal about a sore throat, but she reassured me that this was not the time to take anything lightly. UCLA (and perhaps other medical institutions) uses a "Pain Scale" to help assess a patient's level of discomfort. It goes from 1 to 10, one being mild discomfort and ten being "the worst pain imaginable." I ran into a bit of problem here because I have seen way too many horror movies, so I can imagine quite a bit of pain. Therefore, how could my sore throat compare to being disemboweled by a chainsaw, meathook, or some other sharp instrument of terror? After realizing this variance in our frames of reference, I decided to filter out the "Hollywood" and up the pain quotient of my sore throat. Soon after, I got my first taste of morphine.
So, it was a rather unpleasant week and a half or two weeks (I was deliriously feverish most of the time, so my memory is a bit hazy - probably a good thing). But, again their are people who have and are suffering much more intense pain and discomfort, so I won't whine too much. I'm just glad it is over.
I'm feeling much better these days by comparison. Being back at home helps a great deal. Now if I get bored of laying around in one room, I can move to another room and lay around there. Plus, the daily menu has opened up almost infinitely. The home health care nurse that came today to draw blood actually said that eating burgers and chocolate were good sources of some of the proteins, vitamins, and minerals that I needed. How lucky am I?!!! (She also mentioned spinach, so I guess I yam what I yam.)
Not to make some of you even more jealous of me, but I have lost about 20 pounds since this all started back in mid-March. I didn't even have to diet or exercise. I wasn't really feeling all that emaciated until I saw some pictures of me and took more than a passing glance in the mirror. Not to worry, though, I imagine as my appetite returns and those burgers do their thing, I will be back to my previous Schwarzeneggeresque physique in no time. (Schwarzeneggeresque? I must be dreaming. Or was that one of Thasja's dreams?)
Though bright spots were sometimes difficult to find during this last hospital stay (other than rejoiceing at midnight that another day had passed) I had what will probably be one of my most memorable birthday celebrations. I turned the big three-O on July 19th, two weeks to the day after my "new" transplant birthday. I figured it would be memorable merely for the fact that it would be spent in the hospital, not to mention that it would be the start of a new decade and considering everything else that has happened this year, but it was memorable because of all the heartfelt wishes that were sent my way (thank you also to those of you who refrained from sending birthday wishes as per my request because you've already done so much!).
Thasja and my dad baked a delicious cake (delicious as far as I could tell from the few bites I was able to down - but the satisfied smiles of others makes me think this was true). The hospital room became decked out in birthday lights and balloons. Several good friends stopped by to fill the room with laughter, stories, and body heat. The nurse said it was the biggest hospital party she had ever seen. I didn't tell her that I was paying them to be there. All told, it was a wonderful day and night and probably the biggest gift of all was that it was a distraction from my daily reality for several hours.
So now what?
Now I start the long recovery period to get back to "normal." Great fatigue is probably the most noticeable "side effect" but that will slowly fade. A nurse will come to draw blood and take vital signs twice a week and I will have weekly visits to the doctor for quite awhile. Other than that I plan on putting on some poundage, get back to drawing (and my children's book), and start responding to your individual correspondence.
Once again, please know how much I have appreciated and valued all the support that you all have so generously supplied. The cards, gifts, calls, visits, and especially thoughts, prayers, and just bolts of positive energy sent my way have made all the difference. I fear I will never feel satisfied that I have expressed my gratitude enough, but I'll be damned if I won't die trying! (Sorry, I suppose I shouldn't be making death references just yet...)
Anyway, this turned out to be longer than originally planned, but I just wanted to let you know that I had returned to the safe haven of Non-Hospital Land and was feeling better.
I look forward to catching up with you all individually in the coming months!
Peace and Thanks,
Chris
