The Rage of Reading the Drug List
I want to write about a specific feeling. It doesn't have a clean name.
The feeling arrived one Sunday morning a while ago, when I was sitting at our kitchen table with a printout of my son's cumulative treatment record open in front of me. I had asked our survivorship team for the record so we could file it for his medical history. It came with a list of every drug he'd received, the total dose, the timing, the protocol codes.
I was reading it with a kind of clinical detachment, the way you read your own W-2 in April. Then I started noticing the years next to some of the drug names. Not the years he received them. The years the drugs were approved.
Vincristine, FDA-approved 1963.
6-mercaptopurine, FDA-approved 1953.
Methotrexate, developed from Sidney Farber's 1948 aminopterin work.
I sat with that list for a long time.
What the feeling was
It wasn't grief. Grief has a specific shape and I've come to know it well. This was something adjacent to grief but not the same.
It wasn't anger at any specific person. I wasn't mad at the researchers who developed these drugs. They were doing the work of their time, and their work saved my child. I wasn't mad at our oncology team. They gave my child the best-available treatment. That's what they trained for.
The feeling was more like a slow, quiet indignation. A sense that something had been allowed to become normal that should not have been allowed to become normal.
The something was this: my son took chemotherapy drugs from the 1950s and 60s, hundreds of times, over three and a half years. Not because we live in an underdeveloped medical system. We live in the country with the largest cancer research infrastructure in the world. My son took drugs from the 1950s and 60s because our national investment in pediatric cancer research has been, for decades, a fraction of what it should have been. Because pediatric cancer was, and mostly still is, treated as a smaller research priority than adult cancer. Because "only" 15,000 U.S. children a year are diagnosed with cancer, and 15,000 is not a large enough number to command the drug-development pipeline the way an adult cancer with hundreds of thousands of annual diagnoses does.
The feeling was rage. But rage isn't quite right either, because rage is loud, and this was quiet. It was more like the rage's older sister, who lives in a house in the country and doesn't say much but is very clear-eyed about what she'd change if she could.
What I did with the feeling
I sat with it that Sunday. Then I closed the folder. Then I walked around the block. Then I came home and told my husband what I had just realized.
That's the whole moment. That is the whole day. There wasn't a lightning bolt. There wasn't a decision. There was just the quiet arrival of a new lens on what our family had been through and what we were going to do about it.
In the weeks that followed, my husband and I made a set of small decisions that, in retrospect, added up to becoming an advocacy family. Redirecting some of our year-end giving to pediatric cancer research foundations (St. Baldrick's is our top pick). Committing to quarterly letters to our congressional representatives. Adding one advocacy conversation a week into our normal social life. Signing up for advocacy alerts.
None of it was dramatic. All of it was fueled, at some level, by that Sunday morning in the kitchen with the folder open.
Why I'm writing this down
I'm writing this down because I think a lot of cancer moms have a version of this Sunday-morning-in-the-kitchen moment. It doesn't always come in the kitchen. It comes when you're standing in the pharmacy pickup line for the twentieth time. When you're reading a treatment protocol on the patient portal. When you overhear a conversation at a fundraiser. When your child asks you a question about the medicine and you can't quite answer it.
The moment doesn't have a name in the cancer mom lexicon that I know of. I think it should.
I've come to think of it as the moment when a cancer parent becomes an advocacy parent. The moment when the gratitude for survival stops being the whole story, and starts sitting alongside a clear-eyed understanding of what could be better.
You can love the medical team and the medicine that saved your child. You can also, in the same breath, know that the medicine should have been improved decades ago, and that the reason it wasn't is a policy failure, and that policy failures can be changed by sustained citizen action.
Both things are true. Advocacy is where both things get held together.
For the cancer mom reading this
If you're a cancer mom and you've had this feeling, or something like it, please know that you're not alone. The community of moms who have moved into advocacy work is bigger than you might realize. Some of them are quiet advocates like me. Some are loud. Some run their own foundations. Some are on the boards of research organizations. Some are writing books. Some are simply making sure their kitchen table conversations, week after week, include the sentence "pediatric cancer research needs more funding."
All of it is advocacy. All of it counts.
Nobody wants to become a cancer parent. Once you are, though, the community that opens up on the advocacy side is one of the most powerful communities you will ever be part of. Reach out. Find another mom. Have the Sunday morning conversation together.
Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛
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