Buying Green Bananas

I am three days into the five days of injections that begin the first 28-day cycle of the clinical trial. So far, so good.

The day before the trial started, I had an uplifting experience and a scare.

The uplifting experience was a Meeting for Worship with a concern for Healing held by the local Quakers (my religious community). Since I am in isolation, my family participated via Skype. We had some technical difficulties during the hour, but it was good to see all those familiar faces doing the Quaker silent worship thing on my behalf. I heard afterward that when the meeting was over and we had signed off, the gathered Quakers hung around saying nice things about me, some of which were relayed to me. It was like being eulogized while still alive, which seems more useful than the usual practice.

The scare was a fever that climbed as high as 99.7. If it had reached 100.5, I would have had to go the emergency room, and my participation in the trial would have been postponed until the fever was controlled. Fortunately, the fever went away as quickly as it appeared, and we were able to begin the trial on Monday.

Monday was a long day. It started with Jan and me leaving Champaign shortly after 5:00 in the morning so that we could get to the clinic in Chicago by 8:00. Jan's best friend Maggi flew in for a much-appreciated 24-hour visit, joining us at the clinic not long after we arrived. I had a blood test which confirmed that my counts continue to approach zero. I had another EKG. Then I was called back to a reclining chair — chair 18 — in the infusion therapy room, which is a large room with a lot of chairs separated from each other by curtains. There are a few private infusion rooms, some with beds, but I guess I didn't rate. I spent about eight hours in that chair, except for bathroom breaks.


We heard that it took a couple of hours to prepare the injection, and we expected the injection to take place around 10:00. This would allow for the eight hours of blood draws we agreed to in the consent form. It took about four hours for the injections to be delivered from the pharmacy, so we only had time for six hours of blood draws before the clinic closed, at the same time that I was receiving a bag of platelets and a bag of red blood.

Ouch! Times two!

A nap with Jan was one of the best parts of a long day in chair 18

After a final blood draw around 6:00 p.m., the three of us headed to the apartment Jan and I rented for the week and ordered dinner from a Mediterranean restaurant. It was wonderful to be able to spend the day with Maggi, especially for Jan.


Maggi left at 7:00 a.m. on Tuesday. We were back at the clinic at 8:00, scheduled for another bag of red blood and the second day of injections. I got chair 18 again. There was no order for blood, so it took a while for the blood to show up, and it again took several hours for the injections to arrive from the pharmacy. We left the clinic a little before 1:00. Leftovers for dinner, and then a lovely walk along the lakeshore around sunset.


Wednesday was easy. We arrived at 8:30 and were done around 10:00, again in chair 18. It didn't make the injections hurt any less, and they are pretty painful, but it's nice not to spend so much time in the clinic.


Thursday and Friday may be a little longer, depending on what transfusions I need and when, to get me through the weekend before I return to the clinic on Monday to visit my doctor. I will probably get more transfusions Monday, and the current plan is to have a line inserted into my arm to make it easier to draw and receive blood. 


If we're lucky, there will be more blood tests and transfusions in the coming weeks and months than the veins in my arms can handle. Having this procedure is an act of optimism, like buying green bananas.