Sorry for the Wait
Friends,
I haven’t written publicly since April because, in my mind, my story and what I had to offer seemed trivial in comparison to all that was happening in the world. There was a lot of important information to consume for our own good, to stay safe, to keep informed, to learn something new. It felt silly to draw your attention to my news on top of the quantity and importance of all else happening in our world.
What I didn't account for was that my silence might have left you hanging. I didn’t realize this until, one by one, family and friends started to reach out and softly ask "so... Are you OK?"I realize now that the only thing ruder than piling on additional news in 2020 is to leave a friend wondering.
So I'll tell you, honestly and briefly, what I've been up to this year, how it's gone, and what I think about it all. Amidst the fear and doom of 2020 I think there's more room for the truth. Here's mine.
How it’s been:
After my surgeries in the winter, my Doctors asked me a strange question. They asked me if I wanted to do more treatment. The question was posed as if I was at a bar, and I was asked if I wanted another drink, or if I wanted to switch to seltzer and lime. “You can have another drink if you want, but no pressure man.”
Here’s why the choice was ambiguous: My cancer is rare and slow growing, and they couldn’t tell me if getting treatment right away would have a better long-term outcome than waiting a year, two years, or even longer. The treatment they offered would have been mild, and their expectation was that “it wouldn’t slow me down and at worst, I might be a little tired.”
I sat with that question for a couple weeks in February and thought about what felt right, what my gut was telling me to do. At any moment , I could have raised my hand and said "let's go," and entered a six week course of chemo and radiation. I weighed that option, and it weighed on me. The rational part of me wanted to do it, just get it done with, but the feeling in my gut won. My gut told me: just recover from the double brain surgery Christmas special first. I made the decision to hold off and focus on recovery instead in late February.
Had I entered treatment when it was first offered in February, I would have traveled back and forth to Penn five days a week for six weeks, potentially immunocompromised from the radiation treatment after a few weeks (early April). In retrospect, I’m glad I avoided going to/from a hospital five days a week with a weak immune system in the height of a global pandemic.
I was lucky to wait for another reason too. In January, my surgeon told me “There may be transformative treatments and solutions in a few years for your disease that don’t exist today. That’s not magical thinking.” And he was right. This Summer, new data was published about a clinical trial that could treat my disease. It’s showing some serious potential for cases like mine. BUT, had I gotten the chemo and radiation treatment this year, I would be disqualified from that trail. Trust your gut.
A few things about having that choice: I’m incredibly fortunate to have an option, to have such a choice. I sat with people in waiting rooms at Penn this year that don’t have a choice and are dealing with a grim prognosis. Having a choice was different than most interactions I’ve had with the healthcare professionals. Getting a flu vaccine comes highly recommended, wearing a mask is a good idea, having double brain surgery was presented as a viable and necessary remedy. So to hear chemo and radiation suggested like how the lobster is recommended at a restaurant was challenging, but I’m fortunate to have a choice.
So if there’s that new treatment, what am I waiting for?
I’ll be eligible for that trail soon, and for the sake of keeping this trail blind, I’ll say no more :) If this sounds optimistic to you, I’ll assure you it is. I hope you feel the same levity from this informed optimism as I do.
More on being lucky: Sure, I had a tough set of circumstances this year, and yes, my medical bills were expensive, but I want to acknowledge that our medical system worked very well for me this year. I had access to some of the best care in the world less than an hour from where I live, I have good insurance, and I had support to help me for the six months I wasn’t allowed to drive. I remind myself that so many other people wouldn’t have this experience. Someone else, in a slightly different socioeconomic, geographic or financial situation with the same exact diagnosis as me could have had a very different experience. Three days in the ICU costs about $200,000 dollars and many employers don’t offer the same safety nets as mine does. My same situation could have financially and socially devastated someone else. I acknowledge that I had a privileged experience, and it breaks my heart that my neighbor may not have that same experience. A medical crisis shouldn’t become a financial crisis too. The burden of the medical crisis is enough.
I’ll conclude with sharing a story about the best advice I ever received from a doctor:
I was sitting with my oncologist in July, talking about the psychological challenge of knowing that I’m carrying around a tumor, the strangeness of knowing it’s there and the self doubt that latches itself to this situation. He stopped my rumination with this wisdom:
“Chris, there’s no medical or rational reason why you can’t do the things that you want to do at the highest level possible. Only you can stop yourself.”
That advice set my mind in a better direction. I’ve been carrying this tumor around for a very long time, after all.
I achieved great things with it
Raced my bike over 120 times with it and won a state championship with it in 2017
Climbed several dozen 4000+ ft peaks with it in New York, Maine and New Hampshire
Graduated college and started a career with it
Most of my accomplishments as an adult were achieved with brain cancer, I just didn’t know about it. Just because I know and you know what I carry around in my head doesn’t have to determine anything. I don’t have to treat myself differently. I have to keep training my mind to compete in these psychological Olympics.
Last thing
In my silence since April I failed to tell many of you that I’ve gone back to work, returned to riding my bike outside, immersed in nature and enjoyed rich moments with friends and family. I also haven’t shared that this year has been psychologically challenging, and that the gut punches delivered by this pandemic were, at times, too much for me to handle.
2020 was (and is) life-altering in ways I couldn’t expect. While we can’t control our circumstances, we can prioritize practicing loving kindness to ourselves and others. With practice, I’m finding that when I take care of myself that way, the rest takes care of itself.
I’ve gone to many of you for solace, and I hope I can be there for you too.
Be well and be kind,
CB
