My uncle was one of the first people to get chemotherapy. The way Grandmom tells it, he was sick, nothing was working, and the doctors were sure he was going to die. When everyone had almost given up hope, a doctor came to them with word of a very experimental drug that might possibly cure him, but it wouldn’t be easy, and it wouldn’t be fun. But he was so sick, if they didn’t try this, he would surely die. So they shot him up with “gawd only knows what” and my uncle lived.
When I was little and I heard this story, it was just another story that we tell about our family. Like the one about Poppop loaning out his brand new Cadillac to a neighbor whose wife had locked the keys in the car. Or when Mom met a convicted murderer at a party. It’s just one of those stories.
Now that I’m older, and in these highly uncomfortable shoes of Cancerland, I have a very different appreciation of this story. I realize how lost my grandparents must have felt when this opportunity came to them. At the time my uncle took the drug, the doctors didn’t know nearly as much about chemotherapy, its side effects, or how to mitigate them. They watched him lose his hair, get sick regularly, lose even more weight. I imagine they sometimes questioned if trying this experimental drug was the right thing to do at all. The doctors made no promises about his life expectancy after taking the medication – they weren’t sure he’d make it to 20, let alone survive to have children and see them grow (for the record, he’s alive, well, recently earned his PhD and has two children entering the medical profession).
My grandparents insist that it wasn’t a difficult choice to make – it was the only choice. Now that we’re further down the line, they say that difficult choice would have been to participate in a clinical trial. Clinical trials are hugely important in medical research and drug development as they are organized to help inform doctors and researchers about the effects of medications and treatments on patients in various circumstances. All of that information about your drug interactions, your side effects, the effectiveness of a medication – all of that comes from clinical trials.
Patients choose to be a part of clinical trials for a number of reasons, but top among them is the possibility of trying this new thing that will be less unpleasant than whatever is considered traditional or usual. Before the trial begins, there are of course many tests, and standardizations, and hoops to jump through. Already that’s not fun, and adds up to extra work. But you tell yourself that it’s worth it, because maybe just maybe you’ll be in the happy group, and what the doctors and researchers learn can help others and hopefully make it a better experience for patients down the line. But of course, you don’t get to pick which group you are in – it is random. So while there is a chance that you get the new fancy thing, there’s also a chance of getting just the standard treatment. Or being in the placebo group. So to be in a clinical trial requires the courage to accept that there is a chance you’ll get to play with the shiny new toy waved in front of you, but there’s also the chance that you’ll get the same toy that you’ve been playing with – the one with the paint chipping and the strap that keeps hitting you in the back of the leg.
Today, I’m thinking of friends of mine who have already had a long journey, and have now learned that they do not get to try the new thing, they are in that standard group. They get to suffer exactly as much as they would have suffered if they had never signed up for the clinical trial, with the added emotional weight from the let down of not getting the new treatment. I wish chance would cut them a break, but that’s the nature of it.
So in the meantime, I’m frustrated for them, I’m standing with them, and I am so thankful for them. Have you hugged your clinical trial patient today?