CAR T - 8

This week has been draining, so this post is a bit late.

On Monday the 27th, I received my CAR T cells--the immune system cells that had been collected and genetically modified to destroy the cancer. Since then, they've been screening me non-stop for symptoms of neuropathy. They have me state the year, our location, my full name, identify three objects in the room and count down from 100 by tens. They also had me write a sentence before the treatment began, and every day since then I write the same sentence again on the same sheet of paper--checking my dexterity by comparing my handwriting.

I've been patient thus far--I've been in the hospital hundreds of times in the past year. I've been hospitalized for periods from less than a week to over a month. I've had three implants, dozens of medications, radiation, and more scans and X-rays than I can remember. Now I'm losing my patience.

It started on Wednesday, when I showed the doctor some bumps. I thought were probably acne, but wanted to check. He said they looked a lot like shingles. He got the opinion of some other people--this took half an hour. He wanted to biopsy the bumps--another half hour as, piece by piece, the biopsy equipment (read: needle, Q-tip, test tube) was delivered by a retinue of nurses. As a precaution, the doctor prescribed some stronger antibiotics. The insurance wouldn't cover them at first, so we waited another hour while alternative therapies were debated and discussed. The nurse went to lunch and came back somewhere in the middle of this. Someone assured us they would gather more information from somebody only for the nurse to come back and say that both of those people since left for the day. By the time we left, this short follow-up had taken well over six hours, most of which we spent waiting alone in the room.

When you have so little to look forward to in the day-to-day sense, this kind of time wasting takes a toll. I left the appointment fuming and cursing, and my mood hasn't improved much since then. They've even slowly walked back the shingles diagnosis, making it all even more frustrating. Today, they had four people ask me the exact same set of banal questions--do you have a cough, fever, aches and pains, rashes, so on. It doesn't take two assistants, a nurse and a doctor to ask these questions.

I prefer this to the times where I lost use of my leg or vomited several times a day, but only by a slim margin.