My cancer curriculum
I’m coming to the end of ten months of treatment for cancer, with a successful outcome. Here are some things I’ve learned.
In May 2020 I suspected I’d got parasites from rafting in Costa Rica; I was feeling bloated and uncomfortable after eating. A couple of tests later, and sure enough, I had those parasites, but also stage 3 colorectal cancer. Waking up from a colonoscopy to be told directly that you have a 5 inch mass and it’s likely cancer is like jumping on an emotional hyperloop. I’m not sure there’s an emotion I didn’t feel in the next 72 hours. The most important of which is gratitude, particularly for my oncologist Dr. Sean Fischer and my radiation oncologist Dr. Robert Wollman (and later, my surgeon Dr. Sang Lee). I talked to a lot of experts in the days following my diagnosis, but I wanted to go with this trio of heroes because they were unwaveringly calm and upbeat. I remember three things from the first meeting with Dr. Sean: “garden variety”; “completely curable”; “palatable treatment”. I would come to question his palate over the coming months; 4 months of chemo, 5 weeks of radiation and two surgeries are certainly not my idea of a tasty experience… but the confidence they exuded was enough to slow me down from hyperloop adrenaline to a more manageable state of energized determination, and at best, a calm curiosity.
The months that followed were at times unpleasant, occasionally miserable, sometimes humiliating, often uplifting, and most other things you could imagine on an incredibly visceral ride. I’ll spare the details — but I wanted to capture some of my learning through the journey; partly for myself, and maybe of service to anyone else that goes through this.
The big lessons
1. Our interconnectedness
At my worst, I can feel fairly self-satisfied… ‘I’ve built a life I wanted’; ‘I worked hard for what I have’; ‘I’ve made my luck’… that kind of nonsense that underplays the world around me. Of course the Covid pandemic has made us all more aware of our interconnectedness and reliance on the actions of others, but cancer treatment is an up-close-and-personal communion with our pathetic individual fallibility. I’ve been to over 130 medical appointments over the past ten months, and been treated by at least a hundred doctors, nurses and staff. Incredibly specialized, highly trained, compassionate, mission-driven, loving, funny, wise people, without whom I wouldn’t stand a chance of being here.
And while I have learned stoicism and tend to turn inwards in tough times, I had to surrender to the incredible support of Kerry, my family, friends, and team at enso —I teared up many times, touched at the wonderful things people did for me. I’ve never felt more supported in my life, and I’m so grateful for that. Frankly, to say that I’m coming to the end of this journey is wrong; so much of this was navigated by Kerry, both practically and emotionally; I should really say we are coming to the end of this journey.
And then when I watched the chemo dripping into my arm, or the ingenuity of the port implanted in my chest, or the crazy pump that I wore for three days each cycle… I was filled with awe for the thousands of people that had been part of the science and development and practice and trial and error of those breakthroughs. I was benefitting from the brilliance of a small army.
Which of course, is not unique to cancer; frankly, it’s an everyday experience, I just couldn’t see it as vividly before cancer made it so technicolor. Every day my life is surrounded by the immense fortune of good circumstances and great people, many of whom I’ll never meet, but whose efforts have made my life possible and infinitely better.
2. Everything is a curriculum
Here’s a crazy thing: in January 2020 I wrote a series of commitments for the year ahead, one of which was, ‘listen to my gut more than my head’.
Ok gut, I hear you.
One of the most important moments of this journey came in talking with my enso partner and daily life guide, Kirk. He went through a much tougher cancer journey than I was facing, and at a young age. In our first call after my diagnosis, he said, ‘this may not be the curriculum you’d choose, but it could be a curriculum nonetheless’.
I’d been working before that on seeing everything in life as an adventure, so that I could have gratitude even for the un-fun experiences. But I hadn’t been able to apply that to cancer; up to that point I’d seen it as a miserable affliction with no redeeming value. Something to be survived, at best.
But the idea of ‘curriculum’ became a touchstone for my experience.
‘Ok, this is what an infusion room looks like’
‘Huh, that radiation machine looks super clever, I wonder how it works’
‘Ok, I was resilient enough to get through that cycle, I know I can do another’
‘What made you want to be an oncology nurse?’
Etcetera. Essentially Kirk gave me an emotional hack I could apply in every circumstance, helping me soak up life’s intricacies and it’s a life raft I reached for every time I could feel myself dropping below the line.
Again, this is completely unrelated to cancer, but it took cancer for me to really get it and get disciplined about applying it. Now I’m trying to be much more rigorous about seeing everything in life as the learning experience it is; this is why I always say it’s my cancer ‘journey’ (vs. ‘diagnosis’, ‘disease’, ‘disaster’, etc.)—one journey as part of the grand life journey.
3. Being super disciplined about what I consume
Many people I told about cancer wanted to tell me their pet theory about what caused it or how to solve it. Go plant-based! Go keto! NO SUGAR! It must be the water! The air!
Those people might be right, but my doctors didn’t think so. There is a rise of young people getting colorectal cancer (it’s not normally even suspected below 50; I was 41 when I was diagnosed) … but apparently nobody’s solved it yet.
Of course, I was careful about what I ate, but I was before (part of the reason I live in California is the farmers markets).
What I got really disciplined about was my mental diet. I’m incredibly lucky that Kerry agreed to be my information filter on the world; I haven’t gone down a single doomscape google rabbit hole — I’ve only listened to the filtered stuff Kerry shared, read medical journals my doctor recommended, and otherwise I’ve watched more nature, adventure and general good-life content in the past months than ever before (thanks Epic Family Roadtrip and Sailing La Vagabonde!). Several people recommended books of wisdom from people who’d died from cancer; I bought several, and I’m sure they’re good, but I only wanted to engage in optimism, and I didn’t think I’d be strong enough to absorb the wisdom without engaging in the emotional spiral of ‘what if that’s me..?’
Whenever I was around a cancer fear-monger/doomsayer, I either extracted myself from the conversation or avoided them completely. Surprisingly, several people in treatment rooms wanted to engage in the camaraderie of communal alarm or depression; I put my headphones on and watched BBC Planet or a football podcast. (I also experienced the opposite — some of the most beautifully upbeat and energizing people I’ve come across)
I never wanted to engage in any of the ‘fuckcancer’ type sentiments; no judgement on people that go down that path, but I felt that hate, anger or alarm wasn’t a useful energy for me.
Another Kirk-ism: joy is a treatment modality.
I got a huge amount of wisdom from the second opinions we sought in the early days; a UCLA oncologist gave me a great guide: ‘don’t become a professional cancer patient. Make this a small part of your life, and focus on living well.’
Of course I’ve succumbed to the rollercoaster occasionally (one of the worst times was the weekend of Chadwick Boseman’s death — he also had stage 3 colorectal cancer, at almost the same age I was), but I’ve been able to stay above the line/ optimistic about 95% of the time. That’s made this experience a lot easier.
Everyone told me that chemo would get progressively worse, that the toxicity would build up such that cycle 8 would be much tougher than cycle 1. But I found the opposite; cycle 1 was by far the toughest, because for every bad sensation, I was projecting months of even worse sensations on top of it. Small nausea now mixed with projected months of increasingly terrible nausea = much worse nausea now.
Yet another Kirk-ism: thoughts and feelings are like birds, passing blips on the blue sky; let them go rather than focusing on them.
That gave me and Kerry a shared vernacular, ‘bird!’, which was a cue to switch to a more positive subject or projection.
4. Living with more love
There’s no way I can write this without it being an eye roll for some, or with any particularly fresh insight. Steve Jobs said death is life’s greatest invention. This dialogue with life and death I’ve had over the past months shifted something quite deep for me. As an English person, who went to a boarding school where love was not in the curriculum, engaging in emotions has not exactly been my forte. But I’ve expressed my love and received love more times over the past year than I probably have in my entire life. I’ve been on the receiving end of loving care, not least from nurses who had to step into even greater emotional support for me and all patients while families weren’t allowed to join any visits. That they can find it in themselves to give even more, when they’re navigating a pandemic too, is really an inspiration.
When I woke up in the recovery room after my second surgery I was crying tears of joy (confusing the anesthetists trying to figure out what pain I was in), because I was overcome with love and gratitude for this life, for the people I get to navigate it with, for this remarkable body I get to ride around in and which has done incredible things recently, for science and skill and magical care. Yes, the drugs played a part in that emotional ride, but if it’s done nothing else for me, I hope the biggest lesson I take from this curriculum is to live with, and give, more love.
Life is even more beautiful from here.
I’m done with all the treatment my doctors recommend, I’m healthy and my doctors are confident they got everything; from here I go into observation mode. While I’m super grateful for these lessons, I’m ready to close this chapter and learn other things; hopefully through a curriculum that’s a lot more fun.
I learned a lot of other things specific to the cancer and treatment I did (total neoadjuvant / ‘TNT’, with FOLFOX chemo), mostly the things that worked for me to feel better, like weekly acupuncture and precisely timed marmite sandwiches; I would be delighted to share them with anyone that’s going through something similar — just reach out.