Slowing Down with Cancer
This isn't clickbait. Just trying to find a way to process.
It’s taken me seven months to write this. It’s long. I’m sorry.
I tried going back through the various entries in the app used for medical records by Hamilton hospitals to find the moment I received the news about my diagnosis—but funnily enough, I can’t pin down exactly which one it was. I just remember that we were awaiting the news about the biopsy of the mass growing on my pancreas, and that I got the alert just before bed. Not a call from my gastroenterologist, who had been overseeing various tests, procedures, etc. It was the actual report, with the actual diagnosis: High grade B-cell lymphoma.
I did receive a phone call the next day. And information about how my care would be transferred to the oncology team at the Juravinski Cancer Centre—ironically, as the crow flies, just a few minutes from where I’m writing this in the little house we rent. The crow has to gain some elevation if it’s going to make it, though, as we live in the lower city (“downtown” is technically correct, though having only moved here in 2018, I don’t want to engage in arguments with longer-termed residents about what exactly is “downtown”) and the hospital is on the “mountain brow”. I love these terms. It’s the Niagara Escarpment, not a mountain. But if you were to choose to climb one of the many-setted stairs between here and there, you would nod slowly at the top and say, “I see why they call it “the mountain” now.
And doesn’t this imagery just make all of this sound more heroic when you’re trying to describe to someone what it’s like undergoing treatment for non-Hodgkin lymphoma? Climbing a mountain? I think that’s more accurate than what you typically hear—that you’re fighting a battle. I don’t want to poo-poo the ways people in my situation process and cope, but I don’t think “battling” or “fighting” are helpful to me. The doctors deciding which poison goes in when are fighting; I’m sort of the battlefield. The cancer itself isn’t fighting; it’s eating the poison, in a way, like you’d put out peanut butter laced with something to knock down the mouse population of your kitchen. So, I’m climbing a mountain.
1. Why this (Substack), why now?
This is a suggested first subheading from Substack, and I suppose it’s a good question to ask. Will you get another post from me in seven months? Who knows. I’d like to do a bit more popular-level writing while I officially continue to be unable to work. For now, this can be a pseudo-therapeutic outlet for me. You can subscribe if you want, or just check in when I post a link.
Anyway, on to the juicy details that people like to hear.
2. How did we get here?
Some of you who know me know that I’d been dealing with health issues since September of last year (2023). I’m somewhat thorough enough with documenting things in my calendar that I can trace the various visits to doctors trying to suss out why I was in so much gastroenterological stress. Was it just because of the transition to a new job? Something worse? (I’m the Ecumenical Chaplain at McMaster University, but you wouldn’t know it because of how little I’ve actually been able to participate in the life of the university, much less to sit in my chair in that office.)
After a scan showing pancreatitis, I had my gallbladder out at the end of October. I was continuing to deal with jaundice (not fun!). Biliary stents were put in because my bile ducts at/around my pancreas were still swollen. Then…the masses appeared. The first less solid—more like debris. The second, solid.
The funniest thing about all this was the phone call with my gastroenterologist about the solid mass. He and I were both thinking the same word, but because of the growth of the tumour on my pancreas, he assured me that the chances of this being cancerous were minuscule. More like an autoimmune response that could be treated primarily with steroids. He said I was well enough to travel to an academic conference in the US, one at which I genuinely had fun and made some fantastic connections for some future writing I’m doing. Though, I was itchy and yellow from the jaundice; the kindness of friends not to point that out to me for the duration of the trip is not forgotten.
But then—the biopsy (and a second after it) revealed the truth. Thankfully not pancreatic cancer, but non-Hodgkin lymphoma. And so, treatment would need to begin immediately. The short story on NHL: it’s a blood cancer that impacts the lymphatic system. An appearance in a highly localized mass on the pancreas is exceedingly rare; as you can imagine, there’s not a lot of wiggle room for extra bits down by your pancreas/gallbladder/liver/kidneys, so at least that aids in detection. It’s fast-growing, but slowed by steroids.
The one refrain I kept hearing from my oncology team—who are extremely lovely, by the way—was that since I’m “young and fit” for such a diagnosis, we have several chances to cure this cancer. I can assure you, now that I’ve crossed the 40-year threshold and have been unable to run since last summer, I don’t really feel tied to either of those descriptors. But I’m grateful that the ones doing the fighting do feel that way.
And so they’re fighting, and I’m climbing. I started on one chemo regimen, then was switched to a different after some genetic testing came back. That wrapped up in April. I don’t know what to say about it that you haven’t heard a million times. I lost all my hair. Having no eyebrows is what I’ve decided fundamentally changed how I perceived myself in a mirror, more than anything else. I’ve experienced neuropathy in my hands. I hate being nauseous, so I was on top of all that with preventative meds, and I’m very grateful for their effectiveness. There’s always restlessness and weight gain from the steroids.
Then we waited. I had a PET scan at the end of May that was delayed by my son’s gift of rhinovirus from daycare. The scan revealed that the tumour was tiny (eradication of the tumour wasn’t necessarily expected), but still active. So now we’re on to the second round: a more aggressive chemo which will be followed by some sort of cell therapy/transplant treatment…which I hear is not fun. But it’s interesting! They remove stem cells, then blast you with chemo, then put the stem cells back in, with the hope that these stem cells can then help your bone marrow recover and fight the cancer better. If this doesn’t work, there’s a possibility of CAR T-cell therapy being an option, and it’s wild. They will literally re-engineer your T-cells from samples taken, put them in, and watch them go to town on the cancer. There’s no point going into further detail here, except to say that I’m told the recovery period from cell transplants is going to be…long.
3. What should I say about God and work and faith?
The obvious questions you might have besides the “what” involve the “why” or “how” of all the little life details. I have a 17-month-old son who’s had to endure some strange absences from dad for reasons he can’t possibly understand. I have a partner who somehow has kept our entire household afloat this entire time—coming off parental leave and moving into a caregiver leave (not without some bumps, but thanks to a very helpful caseworker in the Canadian government), essentially solo parenting the millions of early wake-ups, bath times, dinner times, etc., during the months I have been knocked on my butt. I can barely express the appropriate level of gratitude to her in real life, much less do so adequately here—you’ll just have to trust me.
I also need to convey my perpetual thanks to the various communities that surround me, both near and far, with love, care, prayers, baked goods, meals, gift cards, and so much more. Folks from St. John the Evangelist, from St. Paul’s Westdale, from McMaster, Hamilton friends near and at-large, worldwide friends-at-large. We certainly would not have come this far without an extensive meal train during my first chemo regimen. My in-laws have provide an unending amount of support. Despite dealing with several bouts of wellness in-between readying his immune system for existing in the wider world, we are also grateful for St. Patrick’s Child Care Centre.
All of these people have proven to me the love of God. Whatever that means to you from your position of belief, it means to me that when I neither feel any sort of divine presence nor can reasonably cognitively consent to it, it is there. And that’s enough for now. When nurses and chaplains ask what I do for a living, I can’t get around the fact that I’m a person of faith who is being challenged in a way that typically transforms one’s belief system in a major way. And while I’ve been reflecting and praying when possible this whole time, I have no answers for anyone. At the very base, human bodies grow, age, decay. Cells do things. The environment has no doubt affected my body, but so have my genetics, diet, etc. The easiest way I’ve found to answer the question of “why?” is that I don’t have or need a “why?” for any of this. It just is.
But I’ve been unable to serve as chaplain for the majority of the past academic year, and now I’m headed into a summer and fall (and perhaps a winter, but that’s too far down the line to guess about right now) where that will continue to be the case. I was ordained to the diaconate just over a year ago, and have barely been able to serve in my wonderful curacy placement at what is essentially the campus Anglican parish. I’ve had to turn down some opportunities to teach and write because of this. One major project, which maybe I’ll get to in another post, is a book on my academic life-partner. I’m still writing it, but the deadlines have moved, as you might’ve imagined.
My brain is very vocation-wired, and it is immensely difficult to wrap my mind around simply having to slow down, stop, and wait. I have been pushing and striving since finishing my PhD in 2019 to figure out my place in this weird academic-cum-ecclesial space in which I work.
And now—stop. I close my eyes. I’m once again in the base camp at a poisonous Everest that is not the same mountain as I was climbing before.
Hence the motto for this Substack. It probably sounds glib to some of you, but repeating this newfangled memento mori has helped. This particular cross-stitch was wrangled into existence by my dear friend Adrienne. It adorns one of the walls in my living room, which ironically I can’t see when I’m laid up in bed with the vapours.
More to come.