Research is work. You can look it up; ‘work’ is an actual synonym for ‘research’. Participating in research is full of stringent protocols, long lists of what you can and cannot do, and even longer lists of risks and side-effects. I know this firsthand — I was in a research study for over a decade, and it’s a large part of why I’m even still around. Twenty-one years ago today, I was diagnosed with breast cancer, and given pretty grim odds (I’ve written about it here and here and here). Tiny odds for five year survival, no data past ten years. I did not have a lot of good news coming at me — except that I was young and healthy (other than a really aggressive cancer), and therefore could maybe get into a clinical trial for a new treatment being tested. I know a lot of things about myself, and I am not a scientist. I scribbled down notes in meetings with oncologists and researchers, trying to sort what I was being told. At every turn, it was clearer this path was my best option, and trusting science was going to buy me a chance to see my kids (age nine, seven and three) get to double-digits. So I followed the science.
Nothing about fighting cancer is easy. Breast cancer in particular suffers lack of funding, for many reasons. Longitudinal studies are difficult to find, and sustain. At the very time I was diagnosed, there was a promising new drug on the horizon, extracted from the yew tree. You can look up the history if you are so inclined; I can tell you the compound I received has been reformulated into four different drugs now, under at least four different names, so what I was given in the study is no longer in use, but eventually, after shared data analysis and scientific interpretation and published studies, led to really positive outcomes. Certainly that’s true for me (though it was a grueling haul) and most definitely for other patients who benefit from the rigorous protocols of moving a drug through a research study and into safe supervised use. Participating in research is no joke; you are tested (in every sense), poked, bled, injected and truly made as sick as possible to best understand the drug interfaces and immune system recovery. Zero people can honestly do their own valid research on an untested drug. They would die.
Oh wait. Scientists did die along the way. Quick aside: maybe read “The Disappearing Spoon”, which is a fascinating (and true) recap of how we got the elements on the periodic table. Spoiler: if you are compounding an element, and your spoon disintegrates while stirring the mix, time to significantly raise your precautions. Also, in the name of research, these early scientists left a note if they were about to ingest or inject something — so, if it all goes awry, fellow scientists (often their competitors) would know what fatal chemical took them out. Thanks to their methodology, the importance of the null hypothesis is well documented, along with parameters for validity and reliability — all still earmarks of legit research.
Like many cancer treatment patients, I tolerated far more than the body is designed to bear. Burned and cut and poisoned, in the course of fighting an aggressive disease. But these extremes are permissible in the realm of cancer treatment, because data supports the efficacy. Along the way, I had a fair number of lymph nodes removed (lymph nodes act like little filters that fight infection and disease), and a good many were full of cancer. If you are glass-half-full, you are like ‘yay for filtering’. If you are not prone to that thinking, you are like ‘oh shit’. You have over 600 lymph nodes in your body, so being down a dozen or more should be okay….unless, say, there is a pandemic and then you fall in the category of immune-compromised. Turns out you can be perfectly healthy, and some foolish outlier thinking they are a scientist can cause you (and others) a tremendous amount of harm. If you are in a position to lead a team or a community or a country, leadership should look exactly like making decisions to protect your people from harm and keep them safe and well. Failures in those areas are failures of character, and I have no patience for supporters who continue to prop up those pedestals.
Here I am 21 years later, and actually am perfectly healthy. In an annual exam last month, my primary doctor paged through my most recent labs, atop my staggering file. He said he’d like to see my cholesterol come down to (he named a number). “What is it now?,” I asked. He named another number, one digit higher. “That’s IT? Bring it down by one and I’m good?”. “That’s all I’ve got,” he answered, “everything else looks terrific.” This is no small thing, I promise you. But I’ll tell you the enormous unspoken thing: no one will insure me if I lose my health insurance. No company will carry me, as a cancer survivor, beyond the survival data, who used an experimental drug in a medical study. Maybe I can buy some outrageously priced limited coverage, at premiums of 600% more than the regular citizen, but most likely I cannot. I can tell you I have very strong feelings about some people with some wing-nutty ideas about alternate virus treatment ideas who are somehow not dropped from their insurance.
Medical debt is part of the cancer survivor’s history. Personally, we took ten years to pay ours down, and we had good insurance. Those were some lean years. One well-meaning argument posits that universal healthcare won’t work because people want to pick their doctors. Maybe that is true (but we don’t know, because we don’t have it, so we are just speculating in the negative there). I believe that more than picking our doctors, those of us with pre-existing conditions would like the option to continue to live our lives. Anyone voting for a candidate who is against affordable healthcare is putting a price on the head of people like me — a price we can never afford — pricing us out of care. You can positively bust your ass fighting a disease, take your body to the edge of what it can reasonably withstand, recover, thrive, be healthy and well, and still be categorized as ‘not worth it’ by people who do not even know you.
A lot can happen in 21 years. And 21 years ago, I bet on myself, and on science, on data and methodology, extensive review and analysis, clinical trials and interpretation of evidence. I bet on being scarily sick, under supervised medical care, for a while in order to be well in the long run. Along the way, I did do my own research — and none of it is scientific. I learned I love the sunrise, and the night sky, I can run farther than I thought, I like coffee black and whisky neat, the right dog is the right dog. I love baseball and old jeans and good books and deep laughter and vintage shops and local bookshops and art fairs and baking and beaches and bridges and rivers and trails in the woods. I would be lost without my family and friends, my kids are astounding every damn day, they make me joyful and will take care of me when I’m old. I love good-morning texts, and travel plans, live music, and cheering for my teams. I will stop at a bakery on the way to a bakery, and pie is an acceptable breakfast. My favorite movie has subtitles, my favorite boots are worn thin, my favorite people delight me and believe in me and I carry them in my burnt bruised resilient heart. These are my conclusions thus far; the research is ongoing and the outcomes are better than anyone ever would have guessed, despite the longshot odds.