Monday, July 6, 2015

Day One

By now I had received the TILs, and three doses of IL-2.  I toyed with the idea of stopping at three doses.  Why invite trouble?  Things were going so well though, that I agreed to Dose 4 at 3PM.  I was still very nauseous; still receiving many, many medications both infused and orally.  I think I mostly slept through this infusion, too.  No side effects again, or rather, no additional side-effects.  The nausea was a hold-over from the seven days of chemo.

I agreed to Dose 5, which would be administered at 11 PM.  I had a sense of foreboding.  It seemed like this was "too easy", and I silently offered thanksgiving prayers for all the people I knew who were praying for me.  I went to sleep clutching two of the sacramentals (Catholic thing) that I brought with me:  St. Benedict's Cross-Medal (crucifix and medal combined, given to me by a holy priest who said he'd pray that I got into the trial), and the Miraculous Medal (blessed by the archbishop of Detroit, and given to me by a friend).  I slept pretty well between regular checks of my vital signs by the nursing staff.  Again, no side-effects.

The attending doc visited the next morning (Day One of the trial) at rounds and expounded on how well he thought things were going.  He was eager for me to try a sixth dose, but I was less so.  I expressed my concerns and he assured me that the decision was mine to make.  Because this treatment is so experimental, there are no standards for how many doses are indicated.  What to do?  American culture screams "more is better", but I don't subscribe to that point of view.  Maybe "more" was just..."more".  What if "more" was actually "worse"?

The doctors offered no advice on what I should do; the decision was entirely mine.

That morning, I prayed specifically for guidance about whether to continue the IL-2 infusions or to stop. I asked for a sign. Diarrhea set in very shortly after that prayer, and I told God, "Got it. Great sign! I'm done. Thanks." One of the fellows (not mine) visited to ask what I wanted to do.  "I'd like to stop at 5."  She asked why.  I answered, "fatigue". I was bone-tired. She re-stated my request in more formal language, asked me if she had understood me correctly (she had) then stated, "I'll let [the attending physician] know."  With that, she left.

It felt an enormous sense of relief that I wouldn't need to think about IL-2 anymore. Diarrhea did not happen again. I settled in for a glorious nap, even though it was the middle of the day.

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