Let’s Make a Deal

My Cousin David has 2-3 months to live. His pancreatic cancer has grown and spread. He was given the opportunity to participate in three different Phase One drug trials, which means the drug companies are done testing on bunnies and monkeys and are now ready to test on humans. Phase One trials are not as ideal as Phase Three or Phase Four trials when you stand a much better chance of some positive results.

David had some big decisions to make: Should he embark on a drug trial (with all its poking, prodding, testing, discomfort, Big Hope and possibly Big Disappointment) or should he just wave his white flag and surrender into a more peaceful, home-centered, as-comfortable-as-possible sail ride into the sunset? Every single drug treatment that is successfully being used today for a variety of illnesses started with a Phase One trial. By participating in it, David would be able to contribute to science, and it might even work. “There will be a cure for pancreatic cancer one day,” he mused. “Maybe this is the breakthrough drug!”

I likened his quandary to the game show, “Let’s Make a Deal.” Do you take the $500 gift certificate to Montgomery Ward up front, or do you gamble for something better by picking what’s behind Curtain Number Three? There might be a shiny new Cadillac behind the curtain, or there might be a jackass decorated to look like Don Quixote’s companion. In other words, what’s behind the curtain could be glory or a dud. Except in the case of a drug trial, it was either “contribute to science and extend your life” at best, or “contribute to science and make the rest of your short life more painful and stressful” at worst.

At least by choosing death, life was certain. David would settle into the comfort of his beautiful home and read his books, watch the PBS News Hour, surf the internet, and enjoy good dinners with his husband Jon. Hospice would be arranged to ensure he was comfortable and had plenty of Oxycontin on hand. (Ends up this over-prescribed drug that is killing so many addicted Americans is actually GREAT for people with cancer!)

David decided to forgo the drug trial. He came to this decision after a lot of soul searching and imagining the possible consequences of each path he chose. He felt good with the decision. He felt at peace.

Three days later, I got a phone call. “Cousin,” he said to me, “I’ve changed my mind. We met with my oncologist today and there’s a new drug trial here in Madison that sounds promising. After asking a lot of questions and talking it over with Jon, I’ve decided to give it a try.” “Wonderful!” I said. Although I feared David’s precious quality of life would plummet, I was happy to hear the clarity and conviction in his voice. It was such an existentially difficult choice to make, his certainty reassured me that he made the best decision for himself. They began drawing blood and giving him new drugs immediately.

A few days later I got another phone call.  “Cousin,” he said, “I’ve decided to stop the clinical trial.” I was surprised at the quick turnaround and said, “Wow, that was fast! What happened?” He replied, “I had my first round of tests and treatment on Tuesday, and on Wednesday night I was in the Emergency Room with a high fever. I hated being there and I never want to go back. Plus, the treatments were painful and I’m thinking to myself, ‘What for? ‘There’s no guarantee this will benefit me and based on what I’ve already experienced, I’m concerned that my quality of life will disappear. I’ve withdrawn from the study and I feel peaceful with my decision. There’s nothing more anyone can do and I just want to enjoy these next three months the best I can.” He was resolute and clear. “This is a huge turning point for me,” he said. I told him I was happy he tried the drug trial and got the feedback right away, so he could change his mind without having sacrificed too much time or wellness. He agreed.

As we ended our conversation, David said, “Jon is going to put up a beautiful Christmas tree this year and we might even have snow! It snowed this morning, which never happens until later in the season. I wonder if that means winter is coming early this year…” When I hung up the phone I was struck with a mix of grief and gratitude. The $500 gift certificate to Montgomery Ward now felt like winning the lottery. I was so grateful Cousin David chose to live out his last few months without any more medical intervention to cure the cancer that was going to kill him. I was so grateful he was choosing to die on his own terms. He couldn’t control the cancer, but he could control his life. Either way, winter is definitely coming early this year.