The Unwinding of the Miracle - Julie Yip-Williams Page 0,121

hands in an exercise of his self-determination, I applaud that choice, too, so long as it is made with cogency. Similarly, for the person who with thought and clarity chooses hospice over more treatment and more clinical trials, or vice versa, I applaud you. I celebrate you. Bravo!

Whatever the world or my children may think of me after I am gone, I hope that at the very least no one will think of me as a thoughtless, mindless person, desperate to stay alive. I hope the world knows that I approached my death with clarity, that I made my decisions not out of panic but with reason, intellect, compassion, honesty, and love, from the best parts of my humanity. At least, this is my goal.

* * *

Within a week of receiving my scan results, I had an appointment at Mount Sinai to discuss the results of the fruit fly study in which I have been participating. For eighteen months, researchers at Mount Sinai had worked on creating fruit fly avatars containing my tumors from the original primary colon tumor. They had identified one potential drug combination. Out of a library of twelve hundred FDA-approved drugs, one combination, which consisted of two drugs, had resulted in my fruit flies still living. The test was not a measure of tumor shrinkage within the fruit flies; rather, it was simply a question of whether the fruit flies were still standing when everything was said and done. The flies survived the cancer only with this drug combination. One drug the insurance company would easily approve. The other is a melanoma drug, not approved for colorectal cancer, and therefore the insurance would not pay for it. The pharmaceutical company also refused to give me the drug because I didn’t meet their rather stringent income limitations. I did find a specialty mail-order pharmacy that would provide me the drug at a cost of seven thousand dollars a month. Theoretically, I could pay for the drug for two months, and if the scans showed the drug combination was working, I would have an argument with the insurance company for reimbursement.

In the big scheme of things, seven thousand dollars a month is not a huge amount of money for me and Josh, and I could have comfortably spent that sum for a couple months. But I was less than impressed with the fact that the trial had not found a way to cover the cost of the drug when applied to patients; to me, that did not say much about the researchers’ faith in their findings. Second, I continued to be skeptical about whether results in fruit flies would be effectively replicated in human beings; it is hard enough to reproduce mice results in humans, and these are two mammals with much more similar biologies. Plus, the testing had been performed on my primary tumor, which most certainly is not an accurate biological representation of my metastasized cancer. Third, there was the time and energy to be expended with this or any other trial. I have participated in three experimental treatments, two of them clinical trials. I am well aware of the extensive testing required, and at this point, I don’t have much time or energy to spare on something with a 99.9 percent chance of failure. I’d much rather be at home with my children or hanging out with friends or writing or even lounging on my couch watching TV.

I am tired.

Memorial Sloan Kettering offered me a spot in an immunotherapy trial. It seemed decent, but they withdrew the spot after I signed the consent. Yale said I was more than healthy enough for another clinical trial, but they didn’t have a spot in the trial I wanted. Anyway, I wouldn’t have wanted to spend the time traveling two hours each way to New Haven. At some point, the clinical trials these renowned institutions throw at you don’t seem all that different from the green-sludge swamp water from Mexico I swore I would never drink. Acts of desperation made barely palatable by a thin veneer of science performed on mice—that’s all clinical trials are. Call me a little jaded by my experiences. So I said no to the clinical trials and decided to recycle FOLFOX, my first chemotherapy combination, at a reduced dose. It seemed like the treatment with the best odds of working, something I could point to to show the girls that their mother didn’t completely give up at the end. I’ve had three

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