I had been expecting for some time to hear from BWH that my clinical trial was beginning. In fact, the hospital called me on three separate occasions throughout August and the first week of September, indicating that I could come in for surgery the following week. Every time they called me, I asked them what patient number I would be, since I wanted to avoid being in the first cohort. As I indicated earlier, my fear was that I would be given a dose too low to be effective (175mg of Cisplatinum per meter squared) by being part of the first cohort of three patients. I wanted to ensure, since I only had one shot at this, that I would be in the second cohort where the dose of 200mg per meter squared be would most likely be effective. I also wanted to avoid being in the third cohort, since I feared that the higher doses of 225mg per meter squared and above contemplated for use by the later cohorts could be damaging.

Each time they called, I turned them down without specifically indicating my reason. The agreement we all signed with the hospital allowed us to choose a surgical date that suited us. I had been scheduled for the middle or end of September and was told that I could keep to that date, if I so chose. I have frequently reflected on the ethics of my actions. After all, I was seeking a preferential position in the trial, possibly at the expense of other patients who were planning to undergo the same surgery. I suppose one could argue that letting other patients go before me in the trial in order to receive a higher chemotherapy dose was unfair to those patients. This might be valid if being in a later cohort actually did confer a survival advantage. However, this was something I couldn’t prove and probably still can’t, and nobody could have predicted what actually happened.

As it turned out, the antidote being used along with the chemotherapy was ineffective and the dose of Cisplatinum I received was too high to be tolerated. The other two members of my cohort suffered collateral damage or morbidity to their kidneys. The trial was immediately altered after our cohort was completed, so that all later cohorts received either a lower dose or an equivalent dose to that of the first cohort. Only three people ever received the dose that I got and I alone survived that dose without lasting collateral organ damage. Even in my case, there were several days where my creatinine levels indicated that I was slipping into kidney failure, only to make a strong recovery later in the week.

Incredibly, by delaying my surgery as I did, fate intervened in a wholly different way. My scheduled surgery date for the end of September was erased by the horrible suicide bombings of the World Trade Center. This created a state of emergency where hospitals up and down the East Coast were assigned to triage, causing the cancellation of most elective surgery. In addition, all airline traffic was suspended for several days, and many flights were canceled for months afterwards. My surgery was pushed out almost a month from its original schedule date.

The delay in my treatment could have caused my tumor to become inoperable, and in retrospect, those who went ahead of me were given a preferential opportunity for surgery, which was possibly lifesaving for them. In a way, you might say that I gambled my life and should have lost. Yet in the end, my strategy with the heated chemotherapy trial worked out very well for me. Apparently, of the 25 patients in the trial, I alone received the 200mg dose without lasting side effects.

I finally received permission to travel to Boston for surgery the second week of October. United airlines had agreed, for compassionate reasons, to let me get my tickets at a reduced price and move those tickets out to new dates without penalty. Consequently, I lost nothing by waiting through the September 11th period, other than some self-confidence, a lot of peace of mind, and some fingernails.