Not facing the odds

My friend Sam Mygatt died last Tuesday. I am posting, with her permission, remarks that Sam's daughter Jen offered at his memorial service. Sam and Jen provide us with important lessons. The first is about the value, or lack of value, associated with statistics. The second one shows how a family can interact with a receptive medical team to make a real difference in the treatment of a patient.

Dad told me on Monday that he figured there was a “Better than 50% chance,” that he would die either that day or the next. 50%: it strikes me that these have been some of the best odds Dad has had in the past years.

He and I made a deal on Monday afternoon, that at his memorial service, I would tell you all about the role I played in his cancer treatments over the past several years. He thought it might be useful to some of you in the future. So here goes.

First, statistics. They work on a population level; they don’t mean much when you’re talking about one person. I remember reading, in 2006, that 92% of patients who have synovial sarcoma will also have metastatic synovial sarcoma at some point. Pretty nasty. But look, you either have metastatic disease or you don’t: you never have almost-metastatic-but-not-quite disease. Dad knew there were unpleasant statistics, probabilities, and time frames to be found should he look, but he intentionally did not. In not knowing them, he wasn’t bound by them, he wasn’t limited by them, and he refused to be governed by them. “Come and get me,” was how he approached it, and on he went.

In 2006, we moved into the realm of clinical trials: high risks, possible yield, but no real expectations. The 20-page consent forms stated, among other things, that Treatment X was not expected to help us; hopefully it could help others in the future. Before Dad embarked on each clinical trial, I read up on the drug, to get a sense of what might be in store for us. We fell into an agreement that I’d sift out unpleasant statistics and unnecessary information, tell him what I thought might be most useful to him, and make sure to offer whatever strands of hope that I found. Certainly, some people want to know all that they can about the disease they have, but not Dad. In the way he and I split the work, he was able to focus all of his energy on healing and strength and priorities, and I was able to anticipate pitfalls and dig around for back-up possibilities should the current treatment fail him.

Over the next several years, I read up on synovial sarcoma, following any lead back to reliable sources, before bringing select findings to Dad. An online sarcoma forum provided some of my best ideas, and a research database called PubMed was an amazing resource to ground these ideas in science and credible possibility. Dad has had a remarkable oncology team in Boston, and everything I did was ancillary to that. Dad’s oncologists and nurse practitioner both welcomed and came to expect Dad’s enthusiastic participation in his own care, and so I was able to participate.

Because clinical trials are on such shaky ground, it seemed remotely possible I could find something to actually help him, that he wouldn’t already get from his oncology team. Amazingly, I did. Two examples for you.

In December, 2006, one of Dad’s meds quite suddenly rendered him unable to walk or use his hands for a week. We didn’t know that the cause was peripheral neuropathy, a semi-preventable side effect. But you can’t prevent it unless you anticipate it; we hadn’t, because it was not emphasized in earlier visits. On Christmas morning, after his doctor had told him to stop the drug until next week's appointment, I easily found information about the drug’s side effects and how to manage them. I watched the fear in Dad's eyes dissipate as he read the three printed pages, describing exactly what he was experiencing, and he made quick changes to his daily routine to calm the problem. It was a tiny thing that anyone in this church could have found with a quick Google search, but the impact was profound. This was the beginning of my role as a trusted member of his treatment team.

On to our biggest triumph. This was really pretty amazing… One of the drugs I researched actually turned out to be the most successful treatment regimen he had during his fight with metastatic cancer. He flat out would not have started to take the drug without the background research I compiled, which he then proposed as one option of several to his oncology team. The oncologist didn’t think it would amount to much, but we gave it a try anyway, in combination with another drug. Over two months, Dad’s tumor burden shrank by 50%, and we stayed with the drug for a year before discontinuing it. He credits this year of his life to the research I did, mind you, as a 25-year-old with no formal medical education.

I tell you this second story for several reasons. One, he got an extra year of life out of it, maybe more. I helped give that hope and time to Dad, and I can think of nothing more valuable in this survival quest. Two, he asked me to share it with you, and I have always had a habit of doing pretty much anything he requested. And perhaps most importantly, he thought you might be able to borrow the idea should you be faced with a similar situation.

This story is about more than figuring out and fighting this disease. It’s about a guy who believed so much in his daughters, and expected so much from them, that he trusted one of them to play a very special role in the last years of his life. He taught all three of us to learn independently and to back up our ideas enough to present them respectfully to the experts. There’s a lesson here in advocacy, in deciding what is most important and pouring our energy into it, and in believing that we can indeed make a difference.

Dad lived 11 amazing years after being diagnosed with cancer, and plowed through 12 rugged drugs in 10 combinations. I can name them all if you ask; they sound like poetry. For years, I have laughed with family and friends in amazement at his resiliency, courage, and grace. Dad had every intention of living as long as his glass was half full, and his story is a triumphant one. For sure, he faced poor odds, but in never acknowledging them, perhaps he never actually faced them after all?