Cancer 12

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I was glancing at the New York Times and saw that Catherine, the Princess of Wales, had released an update on her treatment. And I thought, “wow, I hope she’s doing well”. And then I thought, “wow, I bet she gets a lot of positive affirmation and support from all kinds of people”.

I mean, she’s a princess.

Priness Katherine

Even us non-princesses, we need support too, and I have to say that I have been blown away by how kind the people around me in my life have been. And also how kind the other folks who I have never really talked with before have been.

I try to thank my wife as often as I can. It is hard not to feel like a burden when I am, objectively, a burden, no matter how much she avers I am not. I am still not fully well (for reasons), and I really want to be the person she married, a helpful full partner. It is frustrating to still be taking more than I’m giving.

From writing about my experience here, I have heard from other cancer survivors, and other folks who have travelled the particular path of colorectal cancer treatment. Some of them I knew from meetings and events, some from their own footprint on the internet, some of them were new to me. But they were all kind and supportive and it really helped, in the dark and down times.

From my work on the University of Victoria Board of Governors, I have come to know a lot of people in the community there, and they were so kind to me when I shared my diagnosis. My fellow board members stepped in and took on the tasks I have not been able to do the past few months, and the members of the executive and their teams were so generous in sending their well-wishes.

And finally, my employers at Crunchy Data were the best. Like above and beyond. When I told them the news they just said “take as much time as you need and get better”. And they held to that. My family doctor asked “do you need me to write you a letter for your employer” and I said “no, they’re good”, and he said, “wow! don’t see that very often”. You don’t. I’m so glad Crunchy Data is still small enough that it can be run ethically by ethical people. Not having to worry about employment on top of all the other worries that a cancer diagnosis brings, that was a huge gift, and not one I will soon forget.

I think people (and Canadians to a fault, but probably people in general) worry about imposing, that communicating their good thoughts and prayers could be just another thing for the cancer patient to deal with, and my personal experience was: no, it wasn’t. Saying “thanks, I appreciate it” takes almost no energy, and the boost of hearing from someone is real. I think as long as the patient doesn’t sweat it, as long as they recognize that “ackknowledged! thanks!” is a sufficient response, it’s all great.

Fortunately, I am not a princess, so the volume was not insuperable. Anyways, thank you to everyone who reached out over the past 6 months, and also to all those who just read and nodded, and maybe shared with a friend, maybe got someone to take a trip to the gastroenterologist for a colonoscopy.

Talk to you all again soon, inshala.

Mountain

Cancer 11

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What happened there, I didn’t write for three months! Two words: “complications”, and “recovery”.

In a terrifying medical specialty like cancer treatment, one of the painful ironies is that patients spend a lot of time suffering from complications and side effects of the treatments, rather than the cancer. In my case and many others, the existence of the cancer isn’t even noticable without fancy diagnostic machines. The treatments on the other hand… those are very noticable!

cdiff

A lot of this comes with the territory of major surgery and dangerous chemicals. My surgery included specific possible complications including, but not limited to: incontinence, sexual disfunction, urinary disfunction, and sepsis.

Fortunately, I avoided all the complications specific to my surgery.

What I did not avoid was a surprisingly common complication of spending some time in a hospital while taking broad spectrum antibiotics–I contracted the “superbug” clostridioides difficile, aka c.diff.

Let me tell you, finding you have a “superbug” is a real bummer, and c.diff lives up to its reputation. Like cancer, it is hard to kill, it does quite a bit of damage while it’s in you, and the things that kill it also do a lot of damage to your body.

cdiff

Killing my c.diff required a couple of courses of specialized antibiotics (vancomycin), that in addition to killing the c.diff also killed all the other beneficial bacteria in my lower intestine.

So, two months after surgery, I was recovering from:

  • having my lower intestine handled and sliced in a major surgery
  • having that same intestine populated with c.diff and covered in c.diff toxins
  • having the microbiotic population living in my intestine nuked with a modern antibiotic developed to kill resistant superbugs

Not surprisingly, having all those things at once makes for a much longer recovery, and a pretty up-and-down one. My slowly recovering microbiota is in constant flux, which results in some really surprising symptoms.

  • highly variable stomach discomfort (ok)
  • highly variable appetite (makes sense)
  • random days of fatigue (really?)
  • random days of anxiety (what?!?)

I had not really understood the implications of gut/brain connection, until this journey showed me just how tightly bound my mental state was to the current condition of my guts. The anxiety I have experienced as a result of my c.diff exposure has been worse, amazingly, than what I felt after my initial cancer diagnosis. One was in my head, but the other was in my gut.

cdiff

I have also developed a much more acute sympathy for people suffering from long Covid and other chronic diseases. The actual symptoms are bad enough, but the psychological effect of the symptom variability is really hard to deal with. Bad days follow good days, with no warning. I have mostly stopped voicing any optimism about my condition, because who knows what tomorrow will bring.

When people ask me how I’m doing, I shrug.

One thing I have got going for me, that chronic disease sufferers do not, is a sense that I am in fact improving. I started journaling my symptoms early in the recovery process, and I can look back and see definitively that while things are unpredictable day to day, or even week to week, the long term trajectory is one of improvement.

Without that, I think I’d go loopy.

Anyways, I am now rougly three months out from my last course of antibiotics, and I expect it will be at least another three months before I’m firing on all cylinders again, thanks mostly to the surgical complication of acquiring c.diff. If I was just recovering from the surgery, I imagine I would be much closer to full recovery.

Harvesting apples

Cancer 10

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So, I got the news from pathology.

There is no cancer left in me, I am officially “cured”.

Since I am still recovering from surgery and relearning what my GI tract is going to do for the future, I don’t feel entirely cured, but I do feel the weight of wondering about the future lifted off of me.

The future will not hold any more major cancer treatments, just annual screening colonoscopies, and getting better post-surgery.

I truly have had the snack-sized experience, not that I would recommend it to anyone. Diagnosed late February, spit off the back of the conveyor belt in late May. Three months in Cancerland, three months too many.

A few days ago NBA great Bill Walton died of colorectal cancer. It’s the second most common cancer in both men and women, and you can avoid a trip to Cancerland through the simple expedient of getting screened. Don’t skip it because you are young, colorectal cancer rates amount people under 50 are going up fast, and nobody knows why (there’s something in the environment, probably).

Mountain

Cancer 9

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Scanxiety.

This is where I am right now. Scanxiety.

Each stage of the cancer experience is marked by a particular set of tests, of scans.

I actually managed to get through my first set of scans surprisingly calmly. After getting diagnosed (“there’s some cancer in you”), they send you for “staging”, which is an MRI and CT scan.

These scans both involve large, Star Trek seeming machines, which make amazing noises, and in the case of the CT machine I was put through was decorated with colorful LED lights by the manufacturer (because it didn’t look whizzy enough to start with?).

MRI

I kind of internalized the initial “broad-brush” staging my GI gave me, which was that it was a tumor caught early so I would be early stage, so I didn’t worry. And it turned out, that was a good thing, since the scans didn’t contradict that story, and I didn’t worry.

The CT scan, though, did turn up a spot on my hip bone. “Oh, that might be a bone cancer, but it’s probably not.” Might be a bone cancer?!?!?

How do you figure out if you have “a bone cancer, but it’s probably not”? Another cool scan, a nuclear scan, involving being injected with radioactive dye (frankly, the coolest scan I have had so far) and run through another futuristic machine.

Bone Scan

This time, I really sweated out the week between the scan being done and the radiology coming back. And… not bone cancer, as predicted. But a really tense week.

And now I’m in another of those periods. The result of my major surgery is twofold: the piece of me that hosted my original tumor is now no longer inside of me; and, the lymph nodes surrounding that piece are also outside of me.

They are both in the hands of a pathologist, who is going to tell me if there is cancer in the lymph nodes, and thus if I need even more super unpleasant attention from the medical system in the form of several courses of chemotherapy.

The potential long term side effects of the chemotherapy drugs used for colorectal cancers include permanent “peripheral neuropathy”, AKA numbness in the fingers and toes. Which could put a real crimp in my climbing and piano hobbies.

Climb

So as we get closer to getting that report, I am experiencing more and more scanxiety.

If I escape chemo, I will instead join the cohort of “no evidence of disease” (NED) patients. Not quite cured, but on a regular diet of blood work, scans, and colonoscopy, each one of which will involve another trip to scanxiety town. Because “it has come back” starts as a pretty decent probability, and takes several years to diminish to something safely unlikely.

Yet another way that cancer is a psychological experience as well as a physical one.

Talk to you again soon, inshalla.

Cancer 8

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I have a profoundly embarassing cancer. Say it with me “rectal cancer”. “Rectal cancer”.

Why is it embarassing?

Poop!?! Maybe we are all still six, somewhere deep inside.

When Ryan Reynolds got a colonoscopy on camera, to raise awareness of colorectal cancer screening, part of the frisson of the whole thing was that yes, somehow having this procedure done is really embarassing.

So, watch the video, it’s really nothing but an ordinary medical procedure that could very well save your life. And Ryan Reynolds is charming.

Cows

Meanwhile, colo-rectal cancers remain tough to talk about, because frankly the colonoscopy is the least of it.

Not having control of your bowels is, well, really embarassing in our culture. What do people say about elderly presidential candidates they hate? They call them incontinent. They intimate that they wear adult diapers (gasp!).

Do you know who else gets to wear adult diapers? Colorectal cancer patients. We get our insides man-handled, irradiated and chopped up, and the results are not great for bowel control. It happens if you’re 55, it happens if you’re 35. It’s normal, it’s usually temporary, it’s what happens when you insult a GI tract badly enough.

Another rite of passage in treatment is the ostomy. Stage III rectal cancer treatment usually involves a temporary ostomy, after radio-chemotherapy during the resection of the part of the rectum that holds the tumor. Patients with a low (near the anus) tumor location will sometimes require a permanent ostomy, because the tumor cannot be removed without damaging the anus.

When I was diagnosed, I was initially terrified of the ostomy. “The bag.”

After researching the different treatments, I got a lot less terrified, since the side effects of some non-bag outcomes in terms of quality of life can be pretty terrible. Meanwhile folks with ostomies are out hiking, biking, and swimming.

If this talk is all a little uncomfortable, may I recommend a colonoscopy?

And after that, a big meal and some poooooping! Poop! Poop! Poop!

I’m in a pooping mood because my surgery (2 weeks ago now) has left me, not incontinent, but I guess “disordered” is a better word. You know how it feels to really need to take a dump? Imagine feeling that 12 hours a day, even when you don’t actually have anything to dump.

By most measures I think I am ahead of the median patient in recovery from LAR surgery, but unfortunately the recovery time for things like bowel regularity and “normalcy” (the “new normal” will always be somewhat worse than the “old normal”) is measured in months, not days, so I am a little impatient to improve more, and faster.

Talk to you again soon, inshalla.

Everyone Poops