21 Apr 2024
This is probably my last posting before I go in for surgery and start my new life as a “patient”.
I was talking with a friend, and we were laughing at how “patient” has the dual meaning of forebearance and under medical care. We didn’t pull out our phones and find out that it is also from the Latin, for “suffering”.
Anyways, suffering is definitely part of life in CancerLand, and surely a reason why we are culturally so frightened of it, even when prognosis is good. Some measure of suffering will be extracted, on the way through, and that’s if you are lucky.
A poster on the groups shared that she felt angry, when talking to civilians about their “troubles”. She said wanted to scream at them, “well at least you don’t have cancer!”
Someone responded, “the healthy man desires many things, the sick man desires only one thing”. Which seemed the most pithy perspective.
I shared that I felt a little guilty posting about my own mental state, dealing with a stage two diagnosis, in a forum frequented by many people in stages three and four. And people were fairly uniform in saying, there is something about hearing the words, “you have cancer”, that marks a sharp dividing line in ones life, no matter what the physical progression is.
Surgery will be my first sharp physical dividing line. Hopefully also my last, but as usual the grey area is in effect.
Talk to you again soon, on the other side, inshalla.
18 Apr 2024
Cancer is a mind fuck.
I mean, it’s a body fuck too, obviously, but the early experience for me has been of weird gyrations of mental health and mood with each passing day.
The first thing I did was the first thing everyone does – look up all the different probabilities of five year survival, because that’s what is at the top of the Google search.
With a stage two diagnosis (hard to know if that’s actually what I have, though) Google says I have a 10% chance of dying over the next five years.
That feels like… a lot? A scary amount.
But wait, here’s a fact – my odds of dying just in the ordinary course of affairs over the next five years are about 4.5%.
Does that stop me from being 1000% more terrified, on a daily basis, since receiving my diagnosis? No it does not.
A good deal of that terror, I think, is that cancer promises a patient a long and painful interaction with a medical system that has only destructive rear-guard actions at hand to stop it. Cut things out; kill it with poison; zap it with radiation. These procedures all leave a body worse for wear, and if they don’t work… they bring you back and do some more of them.
My great grandfather died while rolling a ball on the lawn bowling green in his late 80s. Massive stroke, he died doing something he loved and was dead before he hit the ground. Floyd Ramsey hit the mortality jackpot.
Naturally, I would also like to hit that jackpot. Cancer says, “not so fast, you might have a different life experience ahead of you”.
It would be a little too pat to say that getting a diagnosis starts you off on the stages of grief, because that implies some orderly process to the mental evolution. I am not progressing linearly through the stages of grief, so much as visiting them randomly, over and over, in an emotional shuffle mode.
Some days are denial days. Some days are acceptance days. Some days are bargaining days.
I told my councillor last week that “I only feel OK to the extent that I am dissociative”, and that seems to still hold true. I am at my most together when I have fully distracted myself from the diagnosis. I’m not sure if this counts as “taking one day at a time”. Probably not.
Talk to you again soon, on the other side, inshalla.
16 Apr 2024
A common refrain on my Facebook cancer support groups is that the first months after diagnosis can be among the most stressful. You know the least about the actual extent of your condition, but you simultaneously know for sure that your life is going to change a great deal, starting now.
It is also the first time for grieving.
In the worst case it is grieving actual mortality, the very real threat of the end. But even in a relatively low impact diagnosis like my (current) one, there is grief. It is the grief of lost futures, lost plans, lost self-image.
I am a person who runs and climbs and rows and goes on long walks and travels and teaches and speaks publicly. At least, I was. If all goes according to plan, there will eventually be a new me, who does some or many of those things. Maybe not all of them anymore, there is no predictability or control.
Last Christmas I took my family to Rome over the holidays. “No time like the present!” I said, little knowing how apt that would be. I’m glad for everything I have done with my family. Climbing mountains, scaling cliffs, travelling afar, and even the predictable summer trips to the beach.
Some of these adventures were quite hard, and in the moment I wondered to myself “what the heck were you thinking?” In the end, I regretted none of it, and we all have lifelong memories we share.
Before she was killed by cancer, Amy Ettinger wrote:
I’ve always tried to say yes to the voice that tells me I should go out and do something now, even when that decision seems wildly impractical … Money always comes back, but if you miss out on an experience, the opportunity may never come back.
I am trying to pack as much climbing, and eating out, and walks to the cafe, and evening date nights into my life as I can, before the start of treatment. It’s too late for anything big, but these are little things that bring me joy that may become harder to do, after.
My surgery date is set now, and the procedure will mark an abrupt decline and then the start of a long slow climb back up to whatever “new normal” my body can fashion from my reconfigured plumbing. Some people have great results, some people have terrible ones.
As always, there’s no way to know, the grey area is omnipresent, which is perhaps why I sound so morose.
Talk to you again soon, inshalla.
14 Apr 2024
Before I joined the population of fellow cancer travellers, I had the same simple linear understanding of the “process” that most people do.
You get diagnosed, you get treatment, it works or it doesn’t.
What I didn’t appreciate (and this will vary from cancer to cancer, but my experience is with colorectal) is how little certainty there is, and how wide the grey areas are.
Like, in my previous post, I said I was “diagnosed” with cancer. Which maybe made you think I have it. But that’s not how it works. I had a colonoscopy, and a large polyp was removed, and that polyp was cancerous, and a very small part of it could not be excised. So it’s still in me.
Do I have cancer? Maybe! I have a probability of having live cancer cells in me that is significantly higher than zero. But not as high as one.
How bad is what I have? This is also a game of probabilty. Modern technology can shave off the edges of the distribution, but it can’t quite nail it down.
A computed tomography (CT) scan didn’t show any other tumors in my body, so that means I probably don’t have “stage 4” (modulo the resolution of the scan), which is mostly incurable (though it can be manageable), where the cancer has managed to spread outside the colon.
An MRI didn’t show any swollen lymph nodes, which means I maybe do not have “stage 3”, which requires chemotherapy, because the cancer has partially escaped the colon. But MRI results are better at proving rather than disproving nodal involvement and people report having surgical results that run counter to the MRI all the time.
That leaves me (theoretically) at “stage 2”, looking at a surgical “cure” that involves removing the majority of my rectum and a bunch of lymph nodes. At that point (after the major life-altering surgery!) the excised bits are sent to a pathologist, and the probability tree narrows a little more. Either the pathologist finds cancer in the nodes (MRI was wrong), and I am “upstaged” to stage 3 and sent to chemotherapy, or she doesn’t and I remain a stage 2 and move to a program of monitoring.
In an exciting third possibility, the pathologist finds no cancer in the lymph nodes or the rectum, which means I will have had major life-altering surgery to remove… nothing dangerous. My surgeon says I should find this a happy result (no cancer!) which is probably because he’s seen so many unhappy results, but it’s a major surgery with life-long side effects and I would do almost anything to not have to have it.
Amazingly, despite our modern technology there’s just no way to know for sure if there are still live cancer cells in me short of taking the affected bits out and doing the pathology. Or waiting to see if something grows back, which is to flirt with a much worse prognosis.
Monitoring will be regular blood tests, annual scans and colonoscopies for several years, as the probability of recurrence slowly and asymptotically moves toward (but never quite arrives at) zero. And all those tests and procedures have their own error rates and blind spots.
There are no certainties. All the measuring and cutting and chemicals, and I will still have not driven the cancer entirely out, it will stubbornly remain as a probability, a non-zero ghost haunting me every year of the rest of my hopefully long life.
And of course worth mentioning, I am getting the snack-sized, easy-mode version of this experience! People in stage three or stage four face a probability tree with a lot more “and then you probably die in a few years” branches, and the same continuous reevaluation of that tree, with each new procedure and scan, each new discovery of progression or remission.
Talk to you again soon, inshalla.
10 Apr 2024
A little over a month ago, three days after my 53rd birthday, I received a diagnosis of rectal cancer. Happy birthday to me.
Since then, I have been wrestling with how public to be about it. I have a sense that writing is good for me. But it also keeps like milk. I wrote most of this a couple weeks ago and my head space has already evolved.
So writing like this is mostly a work of self-absorption (I’m sure you can forgive me) but hopefully it also helps to raise awareness amongst the cohort of people who might know me or read this.
Colorectal cancer rates are going up, and the expected age of occurance is going down. Please get screened. No matter your age, ask your clinician for a “FIT test”. If you’re over 45, just ask for a colonoscopy, the FIT test isn’t perfect.
I have a pretty good prognosis, mostly because my case was caught by screening, not by experiencing symptoms bad enough to warrant a trip to the doctor. Most of the people who get diagnosed after showing symptoms have it worse than I, and will have a longer, harder road to recovery. Get screened.
Our language of cancer borrows a bit from the language of contagion. I “got” cancer. It’s not quite a neutral description, there’s a hint of agency in there, maybe I did something wrong? This article drives me crazy, the author “went vegan and became a distance runner” after his father died of colorectal cancer.
Sorry friend, cancer is not something you “get”, and it’s not something you can opt out of with clean living. It’s something that happens to you. Take it from this running, cycling, ocean rowing, rock climbing, healthy eater – driving down the marginal probability of cancer (and heart disease (and depression (and more))) with exercise and diet is its own reward, but you are not in control. When cancer wants you, it will come for you.
This is why you should get screened (right?). It’s the one way to proactively protect yourself. The amazing thing about a colonoscopy is, not only can it detect cancer, but it also prevent it, by removing pre-cancerous polyps. It’s possible that screening could have prevented my case, if I had been screened a few years earlier.
I am now a denizen of numerous Facebook fora for fellow travellers along this life path, and one of the posts last week asked “what do you think cancer taught you”? I am a little too early on the path to write an answer myself, but one woman’s answer struck me.
She said it taught her that control is an illusion.
Before, I had plans. I could tell you I was going to go places, and do things, and when I was going to do them, next month, next season, next year. I was in control. Now, I can tell you what I will be doing next week. Perhaps. The rest is in other hands than mine.
Talk to you again soon, inshalla.
