A note! I had this written and ready to go for Friday morning, but before I could format everything we had to get to the cancer center for back-to-back followup appointments. I thought I’d have time in the waiting room to send it out, but they kept us busy. The good news of this delay is that I can share now that we have an official diagnosis, and it’s better than I was expecting (a grade 2 tumor, verses a 3 or 4), which is about as much as we could have hoped. As you’ll read below, I was dipping into some worst case scenarios, so I’m happy to be out of those despair tunnels.
If you’re new here, you’re catching me at a particularly hyper-focused time. It won’t always be so….cancer-y. But these Friday notes—even more than the free Monday essays—tend toward the personal, and this is just what’s going on right now. Below the note, under the paywall, are lists of recommended readings and other media, as well as some warm n’ fuzzy gratitude shoutouts from the week. People tend to enjoy those, so maybe consider a paid month to see what you think?
Dear ones,
The morning of Peter’s surgery, the alarm penetrates my hazy sleep at 4:30am. It is still dark and I stumble toward him, his tall shape coming into focus from the kitchen where he had just taken his anti-seizure pill. I hug him, squeeze him, start going through our checklist for the day ahead. He keeps insisting I come back home to sleep after dropping him off, which I have only half-agreed to and only because I am getting over Covid (which the doctors know, and I’m likely just out of the contagion window, but I still feel awful, and, no, we can’t believe this timing). We grab our pre-packed bag and drive to the clinic. It is still dark when we arrive, the streetlights aglow as if it is still night. I stay with him as long as I can, cuddling into the small pre-op bed in Room 11— “Baby, 11!” I exclaim; we are into numbers, both of us assessing where addresses, plane seats, or birthdays fall on the luck spectrum. Eleven, we agree, is a good sign. Eventually, after meeting with the team who’ll be in the operating room, Dr. G tells me to say our “see you laters” which I can tell is an easy bedside manner trick he’s learned in place of “say your goodbyes.” So I do, I say ‘see you later, my love,’ and I kiss his face and his fingers still entwined with mine.
I do go home, I kind of half-sleep for about 45 minutes, but I am woken up by a nurse in the operating room texting me with check-ins. At 9:40am they have begun the surgery, she says. At 11:11am she texts, “procedure is going as expected.” 11:11, make a wish, I think in the cadence we’re taught as children. And I do wish, but also I feel a wash of comfort —because of this magic number, after being in magic Room 11 before surgery – and trust he’ll be just fine today.
When I am back at the hospital, I scroll through newsletters and find Suleika Jaouad writing about returning to Paris for the first time since her last visit where she fell severely ill (which was the second time she got very sick in Paris). She wrote in her newsletter about believing that she had a Paris curse, and half-joking with her nurse about refusing to return to France: “we both know logically that my illness is not Paris’s fault.” But still, Jaouad has some lingering anxiety: “Such superstition has always struck me as an attempt at imposing order on the uncertainty of life.”
I grew up with a lot of superstition, which I think is evidence of my long-time interest in magic. I learned not to step on cracks, lest I break my mother’s back — a jingle I took incredibly seriously since I already had one severely disabled parent, and could not risk another. I held my breath in the car when we passed cemeteries, otherwise “bad spirits might sneak in,” one friend explained. I don’t remember when knocking on wood became a compulsion, but it’s one I have now, walking in the neighborhood and touching trees anytime something comes out of my mouth that I don’t want to jinx. When I started driving, I did as Rainer Maria reminds us: “traffic light turning yellow/a kiss and a slap on the roof.” And, as I’ve written about before, my mom and I have a special one: like Dr. G’s anxiety-reduction trick, we never say or type “goodbye.” We only say ‘goodnight’; even at eleven in the morning, “goodnight.” Most recently, I’ve indulged the power of signs in the form of my cat, who I’m convinced portended my miscarriage.
I am reading Jaouad’s words in the waiting room and it is hitting me how many newsletters I’ve been reading for the past year that are about cancer. Jaouad is a long-term cancer survivor, having been diagnosed with leukemia at age 22. My RBF editor, the extremely talented writer Martha Bayne, did not set out to write a cancer newsletter, but she was diagnosed a bit over a year ago, right before her wedding. My internet friend, tarot and astrology expert, and crafter of aspirationally good sentences, Cameron, writes a lot about her experience with chemo, which I used to read with sympathy and solidarity, but now I read like a manual to discuss with Peter. Andrea Gibson, longtime queer poet of my heart, shifted their newsletter from ‘how to cope with the pandemic’ to reflections on living with a late stage cancer diagnosis.
There is part of me, in realizing this, that wonders if this is also some kind of bad magic, some kind of accidental Substack jinx. Like I was setting myself up to need these writers. I am, for a brief moment, fully entertaining the possibility that I have somehow contributed to giving Peter a brain tumor because of the newsletters I read.
This is the double-edged sword of any belief system, but I won’t abandon it. The signs, the rituals of protection, they help make magic of the mundane. I am delighted by messages offered up by the universe nearly every day, and I am just as often comforted with a little touch of wood, the daily “goodnights.” There is power in faith, and I’ve lived by it as both a spiritual person and an anarchist. A birdsong that I decide is good luck is not so dissimilar from pointing to a pipeline defense win and saying ‘see, look, this is a sign that all is not lost!’ I’ll never apologize for hope, even if the method of it sometimes backfires.
As we near the appointment where we’ll find out the details in the pathology report — which will reveal, officially, the grade of the tumor, the genetic makeup, and the prognosis of what we know already is a technically incurable cancer — I know I have to give a bit of a rest to reading into things. For example, I have been thinking about Peter’s mortality approximately 92% of my waking hours. In one of these instances, on a walk, I saw a dead squirrel. An omen, a terrible omen, I thought for a moment. But then I realized I was also thinking of Peter’s mortality when a sweet dog approached me for a life-giving sniff, when I passed a vibrant bloom of chicory, when I smelled the most fecund soil after a summer rain. There will be no message from the skies to tell me the findings of a microscope. There will be a doctor. And just like we do with birdsong, we will have to make meaning of it.
To me, the agency of meaning-making is what differentiates magical spirituality from dangerous evangelicalism. I will continue to look for signs, will continue to practice small acts of ‘just in case,’ but I will know that ultimately, although we do have power, we do not have control.
In Audre Lorde’s The Cancer Journals, she writes as a feminist and radical activist making sense of a health crisis that is absolutely a structural issue, but also an acute embodied one.
That part where she says, “I must be content to see how really little I can do and still do it with an open heart”? That’s it. That’s all there is.
My open heart likes to make meaning of signs, likes to believe in magic. It propels me to keep trying, to keep making dents in situations that are beyond my individual control. As Peter and I navigate cancer treatment, alongside navigating our efforts to leave this world better than we found it, I think we’ll work to find a balance. Good signs and cautionary acts coupled with radical acceptance and doing the best we can with what we have.
And, I don’t care how silly it is, I’ll still always be glad he was in Room 11.
love & solidarity,
raechel
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