Prologue: Day Three (The End of The Beginning)

Today was the least exhausting day of the three days of tests I went through in order to confirm my final eligibility for the stem cell/chemotherapy trial for treatment of MS. No shots, though, so that was good. Two separate appointments with my main liaisons, though, who I have dubbed, not very creatively, "The Two Bs": Dr. Richard Burt, an immunologist and the trial's ringleader, affiliated with Northwestern, and Dr. Roumen Balabanov, my neurologist at Rush University.

My first appointment was with the latter of these. Dr. Balabanov has a fun name to pronounce, or, in my mother's case, mispronounce. He is also from Bulgaria, so he has an awesome Eastern European accent. With it he exudes a nice nonchalance that helps him to keep his sense of humor even as he sees a very high number of demanding patients in the Rush MS Center. He also reminds me a lot of Dr. Charles Nichols from The Fugitive with Harrison Ford. Without, you know, the murderous ambition.

He gave me the perfunctory MS neurological exam, and gave me his approval for the trial. His medical opinion weighs quite heavily, and well, with Dr. Burt as a determination of eligibility. It was nice to hear him tell me that I looked great, but I assured him that beneath a veneer of health lay a bubbling, unstable, and downright volatile nervous system. He said he noticed this, and, on a walk we took down one of the floor's long aisles, told me about a brain stimulation procedure that could resolve a slight tremor he saw in my left hand. I assure you, this tremor only comes up intermittently, and since it was early it was probably very noticeable.

This, he said, was an option should I fall into the placebo-ish group during randomization. The great thing about this aspect, though, is that I'd be automatically eligible and approved for the transplant in six months. After all, the study has to include a group of individuals that do not receive the transplant. Nevertheless, they get another, more aggressive form of treatment that is different from the one they are currently on. In the end, it still sucks to be in this group, but hopefully only for half a year.

After he gave me the green light, I headed to Northwestern Memorial Hospital's Division of Immunotherapy to meet with Dr. Burt. Dr. Burt exudes competence, and I also like him immensely. When he walks into the room, you immediately know that he knows more than you about whatever you're seeing him for. It's not a pretentious, ohyeahdidyouknowthis? arrogance, though. He's quietly confident and confidently smart.

Quick digression, yet again: the nurse who took my vitals here commented on my eyelashes. I, embarrassed somewhat at the unexpected compliment, responded with, "Yeah--wait a month if I get into the trial. Enjoy them now, because they might not be here later." Awesome downer, I know, but I was mildly distracted because I was about to meet with the head of the whole shebang.

When Dr. Burt came in, I could tell immediately that he was not his usual, buoyant, cool self. Something weighed on his mind and diluted his joviality. I think I may have trivialized some of his feelings when he went through the possible side effects of the treatment. Sterility? I knew that. Death? What're you gonna do? I later realized, as my mother pointed out, that he was obviously flummoxed because he saw me right after he had to deny some woman's inclusion in the trial because her MS had progressed beyond the reach of the study. We rode with her in the elevator, and I had no idea why she was so quiet in her wheelchair. Later, I understood her despondency. Nevertheless, he too said I was ready and ideal for the procedure.

I then had to perform a series of cognitive tests with the head nurse of the trial, to whom I referred in a previous post. For the first test, I had to put nine plastic pegs into three rows of three holes in a blue board. Apparently I did well, or so she said, but I confessed that it was hard for me to concentrate because I was so absurdly tired. Three days of tests, totaling 20+ hours, had exhausted me enough to render my coordination lazy.

Then I had to do a mental math quiz. Apparently I did well on this as well, although I'm not sure if she was just being kind. I hate math--shocking, I know--and my prowess really seemed to me to be functional at best. It also couldn't have helped that I was constantly distracted by the items in the room. This sounds like an excuse, and it is, but some things honestly fucked with my head. I stopped listening intently to the voice on the old tape recorder that was giving me numbers to add when I saw the blood pressure thing.

I became obsessed with the name of this thing. I was pretty sure it was "sphygmomanometer," but I couldn't be sure. Was there an extra syllable in there somewhere? After the test, I asked Kristin, the nurse, but she wasn't sure because it had been a while since she thought about it. Fair enough, although I did chide her for not knowing. Mind you--this is the same bubbly woman who remarked on my dry yet scorching (if I may be so bold) sense of humor, so she laughed at my playful critique. In the lobby afterward, she told my mother as much and said that she enjoyed my playful apathy. (I wonder if she knows that I'm not simply feigning my insouciance.)

Then we left, these last three days of arduous, extensive, and intensive assessment finally over. It was bittersweet, as most things are to my pragmatic (some would say "pessimistic") mind, because of the subsequent elevator ride with the aforementioned rejectee and her family, from Ohio.

As for me, I'm just glad to be done with this week of tests. Randomization takes place next Thursday, so I'll know then if I will get the transplant or some other treatment. Again, either outcome will be bittersweet. One option means a few weeks of hospitalization and chemo and all that that entails, and the other points me toward other alternative treatments (but eventual transplantation).

I'll know the outcome in a week. Until then, it's back to my normal modus operandi of tolerance and ignorance (of my onerous symptoms, I mean). So, at least for the next week of uncertainty, I'll keep in mind what the French say (I think--I speak no French): "C'est la vie."

R
--Tomorrow I'll probably be energized enough to express fully my abhorrence of the opposition to national health care, and that fucking moron who brought a gun to an Obama rally/speech.