My Leukemia Diagnosis

A drawing of my photo of Clive James’ Japanese maple, from his back garden, February 2015

JULY 9, 2021

Hi, my friends:

I’ve been diagnosed with Chronic Lymphocytic Leukemia (CLL). I’m at stage zero and may go a long time (potentially years) before I require treatment. Survival rates for this form of leukemia are very good, and even better for someone at my age (it shows up more often in 70+-year-old people than in a 50 year old).

Before I get to anything else, I want to tell you: DO NOT BLOW OFF CHECKUPS, ROUTINE MEDICAL EXAMS, AND OTHER PREVENTATIVE HEALTH APPOINTMENTS.

I know it can be a hassle and an expense, but it’s your health, so please attend to the routine stuff. I was uncertain about sharing all this with you, but that public service announcement aspect tipped the scales in favor of disclosure. (I also want to share What’s Going On, because it’s a burden that’s been weighing on me and I think you all can help, just by knowing.)

At my annual physical last month (I skipped 2020’s due to the pandemic), my physician saw some weird numbers in my routine bloodwork. Followup bloodwork two weeks later got him worried, so he sent me to a hematologist (oncologist), who diagnosed CLL and subsequently staged my condition. She filled me in on the cytology report yesterday evening, which corroborated her stage zero assessment — pending One More Test that’s intended more as a baseline than as a further diagnostic — and led her to suggest my condition may lie dormant for a long time.

The course of action will be “watchful waiting”: semiannual bloodwork & keeping an eye out for symptoms. When the numbers pass certain thresholds I’ll have to go on a course of targeted therapies — one of which is contract manufactured by a company I represent at my day job — to try to get them back down. They’re very effective, and far less damaging than the previous front-line option of chemotherapy.

After that, it’ll be up to monitoring and treatments in the years ahead, as the excess immature leukocytes that my body makes lead to greater susceptibility to infection, and crowd out of red blood cells and platelets, all of which can cause other problems in my system, and lead to my death.

With CLL, there’s no cure, no direct cause (just mutations), and nothing I can do will affect its progression, but the targeted treatments are effective at fighting it. When I described my exercise habits & the fact that I’ve never smoked & haven’t had a drink since 2012, the oncologist said, “Keep that up. It won’t change the course of the disease, but it’ll help you deal with the side effects when you need treatment.” When she asked if, among other symptoms, I was suffering from fatigue or anemia, I told her that I ran 6.3 miles in 80°+ temps and 9,000,000% humidity that morning, and she laughed as she checked “no”.

So that’s the somatic version of what’s going on: I have a seemingly dormant, treatable version of leukemia, and will have to stay on top of it for the rest of my days.

As for what’s going on in my mind, well that’s where things get complicated.

For one thing, anxiety has been walloping me, between the waiting period for test results & diagnosis, the need to talk to people without overly worrying them, some heavy-duty business issues that have come to a head, and even the debate over whether to write and send this out. I haven’t been sleeping or eating well, have dropped about 6 lbs. in the past 10 days, and worry that issues I’m having with running are somehow symptoms of a hyper-accelerated acute version of my leukemia, as opposed to “you worry too much and it’s affecting your diet, sleep and body.”

I’m still adjusting. Getting the (relatively) good news yesterday should have alleviated some of my anxiety, but I still felt The Pit in my stomach at 3:30 this morning. Having a neurotic mind and a body that’s a timebomb is not sustainable in the long term, so I’m going to have to learn/train to slow down and worry less in the moment. I once told Walter Kirn, “Anxiety is my drug of choice,” but I think I need to cut down.

Me being me, before the initial diagnosis last week, I gamed out worst-case scenarios, a process that has changed me. I’d say it “helped me put my life in perspective,” but it’s more like it gave me a different perspective, when I considered what it would mean if I had, say, 6 months left. (When I recorded with DG Myers in 2014, he thought his recurrent prostate cancer meant he had about 2 years to go, but he was dead 6 months later.)

I began updating the “in case of the event of my death” document that I put together a few years ago, to help Amy in case all my work-travel led to my death via plane crash, train derailment, or meth-addled Lyft driver. I started writing an obituary as an exercise to find out what I thought I’d done with my life and how it should be memorialized. I unsubscribed from a lot of e-mails. I kept making art every day, even when it was tough to focus.

And in my hypothetical six-months-left window, I thought about the podcast: how I’d wind it down and how I could make sure it sticks around as both a resource and my legacy. Maybe that sounds silly to you, but those conversations are the thing I’ll leave behind in this world, more than any professional achievements, goofy dog pictures, or my trees.

I thought about the people I’d want to record with before I’m gone, the last few conversations I’d want to have and share with the world. There really were only a few, and they weren’t pantheon-famous or anything, but they’d have been special to me.

I also thought about the guests who were on my immediate schedule and how tough it would be to keep a conversation going without bringing my diagnosis into it. You can listen to the most recent few episodes to see how I did on that front. When Ron Hogan mentioned tech-bro Stoicism and reading Marcus Aurelius, you don’t know how tough it was for me not to ask about whether he himself felt prepared for death.

I thought about what a world without me would be like, and I wasn’t scared the way I thought I would be. (I felt awful for Amy, my parents, and close friends, and still worry about the burden I’m putting on them, even though I KNOW it’s part of life and what we do for each other.) I’ll try to talk through this on the show sometime, and/or get some counseling, but what I think it boils down to is: I’ve seen great people die in recent years, and the world has kept turning. And I lost Tom Spurgeon, my best friend, nearly 2 years ago, and that experience — seeing how people have tried to live up to his memory, and taken heart from his life rather than wallowing in the sorrow of his death — seems to have changed me, too.

(There’s a whole other gigantic e-mail about the importance of the friends I’ve made over the years and how much you all mean to me. There’s also a lot of private stuff, so if I don’t tell you much about how Amy & our family are handling this situation, please respect that & don’t chalk it up to narcissism or tough-guy-ness.)

I know my absence would leave a hole in people’s lives, but I don’t feel like I’ve left anything undone. There are places I want to go, people I want to talk to, pieces of art I want to make, but like I wrote about in this e-mail a few weeks ago when I was obliquely alluding to my condition — and don’t blame yourself; no one would pick up on the signals I was giving off, even when I posted a link to my drawing of the Japanese maple in Clive James‘ backyard (Clive also had CLL, and his poem about the maple centered on whether he’d live to see it bloom) — Eddie Campbell once told me & Tom why he thinks bucket lists are inane, and why he’d rather just enjoy the simple daily pleasures of life one more time, and I agree with him.

THAT SAID: I’m not proposing complacency or self-satisfaction with one’s life. If Worst-Case Scenario had come up last year, the Gil who “hadn’t left anything undone” never would have known that he can draw and make watercolors, nor experienced the joy of doing it. If it had come up the year before that, spring 2019 Gil would never have known that he could run a half-marathon (for the first time) on 36 hours’ notice, come in under 1:50:00, and not suffer incontinence.

Life is becoming. It has to be. Maybe there will be new discoveries for me, and for you.

There’s so much more to say, but I’ve gone on too long already. I’m out of worst-case thinking, and looking forward. Where we are now is: I have a long-term, treatable form of leukemia, and I plan to continue

But maybe I’ll need a break sometimes, too.

During that worst-case phase, I wondered whether I’d actually buy another book, if I only had [time] left. Then I ordered a couple from New York Review Books’ sale during July 4th weekend, which means I have to stick around, right?

To quote Sun Ra,

Love For Everybody,

Gil

[UPDATE: My first semiannual check-in in Jan. 2022 went fine; no significant progression, so no treatment or other changes.]

[UPDATE: My next semiannual check-in in July 2022 went fine; no significant progression, so no treatment or other changes, but there’s another lesser indicator they want to keep an eye on, so I’ll be back in ~4 months.]

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