I am the population now: The tale of a brain cancer “n of 1”
For nearly 11 months I have been living in a bubble that is in all-things brain cancer. I am stir-crazy, frustrated, lonely, overwhelmed, bored, and yet still deeply curious. I experience my disease physically, neurologically, and quite often, existentially.
Lately I feel more like an observer of my own experience, stepping in and out of the roles of patient and researcher. Is this what Jane Goodall felt like when she was observing chimpanzees but also teaching herself to live amongst them? I am both a chimpanzee and Goodall.
The nature of my life is quite meta at the moment.
Last week I traveled to San Francisco for a brain MRI, neuro-psychiatry testing, and a neuro-oncology visit.
There are no lab tests for brain cancer so we monitor our progress through a combination of imaging (CT, MRI), and carefully monitoring our symptoms so we may alert our doctors and care partners to possible neurological changes.
The trip to San Francisco was the first time I saw my doctor in person since neurosurgery (three months ago) and since completing radiation (four weeks ago).
To be honest, it was also the first time I was outside city limits in those three months. Living with brain cancer feels heartbreakingly small… especially during a time when I see my friends and colleagues returning to normal lives.
My doctor and I had a lot to talk about, including a treatment plan. I was offered three paths:
Do nothing
Take temozolomide (a chemotherapy for primary brain tumors) for the next 6 months
Take lomustine (a chemotherapy for brain tumors, Hodgkin's disease, and other kinds of cancers)
I chose option #2. I started temozolomide on Friday night.
recurrent-recurrent-recurrent low grade glioma
There is no clear path for recurrent-recurrent-recurrent low grade glioma and my doctor and I are in uncharted waters together. The north star for my decision-making process (right now) is quality of life, and I know temozolomide suits the quality of life I desire at this time.
In building my treatment plan we needed to take into consideration the 24 months I spent taking temozolomide in 2009-2011. Today, taking this drug for 24 months straight is unheard of because there exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease. People in my situation today would likely move to other treatment options after the first or second recurrence (those options might include lomustine, Avastin, an IDH inhibitor, or combination of these).
The population level science is right: presented with all of the evidence, people don’t do better by taking temozolomide longer. I just happen to be one of the few people who can live to tell the tale that it did work, for one person, at one point in time.
“I am the population now.” If you don’t get the joke, this is a riff on the popular “I am the captain now” GIF from the movie “Captain Phillips.” I know it’s bad form to have to explain jokes but the readers of this blog are super diverse.
To my friends and family, I AM THE POPULATION, and they think my long-term survival is a given. They don’t know I am an n of 1. They don’t know recurrent-recurrent-recurrent low grade glioma is the brain cancer equivalent of a cat slowly pushing a glass of water off a table. At some point, the glass will drop.
Other than Brett, and likely Bob (who died last year), no one in my IRL circle truly gets it.
An interesting form of time travel
Who should I look to for advice in these uncharted waters? Oddly enough, it’s me I am looking for. (I’m too lazy to create a Lionel Richie meme. He deserves better.) This blog started 15 years ago, after my first brain surgery, and documented my treatment for the 24 months I was on temozolomide. The Liz I am today can lean on the Liz I was 12-14 years ago.
It’s an interesting form of time travel. That Liz had no idea future Liz would live to re-experience temozolomide. In fact, I was told I could never do it again. In the coming months I plan to re-read what I wrote in the past and take time to fix typos and outdated information along the way.
Maybe I’ll even teach myself an old thing or two.
