Finger Sandwiches

I wake up and put an X on the calendar. 41 days down, 324 to go. It's incredibly frustrating to gloat on your progress each morning, then immediately be filled with ennui over the realization that there's much, much more to go. At least during the first month, there was news and progress on a daily basis. Now that I'm stabilizing, the changes are slower, more spaced apart. Of course, the doctors said it would be like this.

My visit to the clinic yesterday wasn't newsworthy either. At this stage, my initerary might be something like this:

10:00 am - Enter clinic, check in.
10:10 am - Have weight and vital signs taken. Get assigned a chair in the treatment room.
10:15 am - Have blood drawn and the lab. Return to aforementioned chair and wait...
12:30 pm - Nurse wakes you up from nap and tells you lab results are in. Wipe drool off the side of your face, look at lab results and try to make sense of it.
1:30 pm - Doctor comes in, comments on the labs and tells you to come back in two days.
1:35 pm - Leave clinic.

As you can see, one needs the patience of a Buddhist zen master to cope through one of these visits. It's 90% waiting, 10% action. Anyone with a desire to make it through a day of treatment at the hospital with some haste is in for a rude awakening. Here's a tip: Bring a book. Or maybe a pillow.

Yesterday's schedule didn't stray too far from that template. The lab results took their sweet time, but when they came they revealed that my blood cell counts were slowly inching towards normal. Could the high white blood cell counts be a result of a shingles infection? Was my allergic reaction going away? Does this mean I can finally get out of here?

Dr. Wright came in on schedule at 1:30pm and conveyed optimism on these new numbers. He also commented on how we may have found a proper regimen for my diuretics. That being said, he wanted me to see a dermatologist to check out the rashes that caused the shingles scare over the weekend.

One thing you need to remember when you are part of a clinical trial is that you are as much of a case study for medical students as you are a patient. No doubt my labs and tests will be the discussion of some late-night elective class where the medical students always saunter in a half-hour late. That means that during the course of your treatment you will often have young cadets trailing the doctors like ducklings as they examine you. When my dermatologist entered the room, she was accompanied with an entourage of no less than four other medical students. I immediately felt guilty for not preparing hors d'oeuvres for my guests.

So as finger sandwiches danced through my mind (I hadn't had any lunch, so the food reference was not a wise one), the doctor looked at me an began to quiz the students on some of the bumps on my body. This was obviously the first time they had seen eczema on the back of an amyloid patient, and they were filled with the glee of a child at the Wonka Chocolate Factory. After much obscure medical speak was passed around, the dermatologist looked at me and spoke her professional opinion: "It looks like acne... I'll prescribe you some cream." That's fine about my head, but what about the rash on my back? "That's a curiosity we'll have to watch," she says. I sigh.

So, I'm home with a day off to relax so I can do it all over again on Friday.