Tick Tock

The past week featured two trips to Chicago, two visits to the local cancer center for platelet transfusions, and a decision to bring our older son Jake home for the rest of the summer and the fall.

Monday

The Monday trip to Chicago, with Jan, had the usual blood work and a meeting with my doctor, now back from vacation. My blood counts continue to drop and are now at dangerously low levels across the board: red, white, and platelets.

The gist of my doctor's message was that most people in my position would choose to keep seeking treatment, but we should think hard about how I want to spend what is, statistically, not a lot of remaining time. How much of that time do I want to spend in Chicago, maybe in the hospital, maybe suffering painful battles with infections, and all for a less than likely positive outcome? Where do we want to draw the line? That is a very hard question to answer, and we have not yet done so.

Then a nurse brought in a consent form for participating in the clinical trial we had heard about earlier, which is the only treatment option that the leukemia team thinks has some chance of success for me.

The drug is SGI-110. The protocol doesn't sound so bad: an injection a day for five days, with frequent blood draws on the first and last days, and a bone marrow biopsy on the last day. Then three weeks at home, waiting and watching blood counts. Then we repeat the cycle if there is any sign that it's helping. The main potential side effects are not anything that I'm not already experiencing: lowered blood counts, feeling tired, high risk of life-threatening infections. The injections are done as an outpatient, so the main drawback for us is the disruption of being in Chicago for five straight days.

Since the alternative is waiting at home for some disease or infection to take advantage of my weakened immune system and do me in, we decided that the treatment falls on this side of the line we haven't drawn yet. It may or may not work, and the odds are not in my favor, but it's worth a shot. So we signed the forms. The nurse was unsure whether I would be able to start in one week or two — the timing depended on the length of time since my last dose of prednisone, and she didn't recall whether that gap needed to be one week or two.

That was a sad ride home from Chicago. We talked to my parents and to Mara. We decided to ask Jake to come home from his summer job at Harvard, and to delay the start of his graduate work at Berkeley so that he could be home this fall. No matter how this turns out, it will be better for all of us to be together.

Tuesday

On Tuesday, we talked by phone to the doctor running the clinical trial. That raised our spirits, as she recounted some of the success stories they have had. She didn't sugarcoat the odds, but she did second our opinion that there's little harm in trying. We also heard from the nurse coordinating the trial that we would be starting the first cycle next week (July 16), which was another boost to our spirits. We made arrangements to stay in Chicago for four nights at the same place we rented in January and February, when I was out of the hospital but needed to stay close.

Wednesday

On Wednesday, I told my supervisor at work that they should be prepared for me to stop working. I have been working about 50% time lately, mostly designing user interfaces for web and smartphone apps. It is enjoyable work, and it keeps my mind occupied in a good way. They were already planning to hire an additional person to keep up with anticipated extra work. Now they can conduct that search with a different perspective about their future needs.

I went to the local cancer center for a platelet transfusion. My platelets were at 11 on Monday, and the Chicago team felt I should get some more in preparation for my Thursday biopsy, part of the screening tests for the clinical trial.

At the end of the day, we learned that I could not start the clinical trial for another week, on July 23. The nurse thought I had stopped taking prednisone a week earlier than was the case. This was discouraging. The longer we wait, the more time the leukemia has to build, and the greater are the chances of an infection taking hold.

Thursday

A friend drove me up to Chicago for screening tests for the clinical trial: a couple of heart tests (MUGA and EKG), some blood work, and a bone marrow biopsy. We won't get any results from this biopsy. Some of the samples go to the drug company that is sponsoring the trial, and the rest get frozen at the Chicago clinic for future research.

The nurse practitioner who performed the biopsy gave me her professional opinion on the return of my leukemia: "This sucks." So true! She also prescribed an additional antibiotic and, at my request, some sleeping pills.

Friday

Another platelet transfusion at the local cancer center, accompanied by my son Paul. I don't get the same boost in platelet counts that most people get from a transfusion. So not only am I not producing enough platelets because of the leukemia, but I'm also losing the ones I do make or receive, for some unknown reason. 

The outward manifestation of my low platelet count is that my lower legs are densely covered with tiny red dots called petechiae. My low red blood cell count causes me to be more tired than I have been recently. My low white cell count causes me to worry about every sniffle or ache — is this the start of some killer infection?

= = =

Was the account above hard to read? That seems fair — it was hard to write.

It is not easy to be realistic and optimistic at the same time. Realistic, because we have to prepare for the worst. Optimistic, because a positive outlook correlates to better outcomes, and because hope feels better than despair. On the positive side: I have some symptoms of GVHD, indicating that my immune system might still have some useful fight left in it, if the new treatment can slow down the leukemia.

The odds are against me, but that has been true before. The last time the odds looked especially bad, late last fall, I was in a hospital bed in Chicago battling a deadly sinus infection and leukemia at the same time. This time, I get to be at home: grilling on the patio, watching the Tour de France and movies with my family, doing useful work, taking walks in the neighborhood, holding and being held by my wife. This is better.