#13 – Bladder Cancer & Me

My original plan was to shift to writing these updates every 6 months coinciding with my CT scans. However, Cancer cares nothing about my plans.

Last week (Update #12 – 3/15/25), after kicking off with my delight over the news of my No Evidence of Disease (NED) CT scan on December 1, I wrote of the adverse reactions I was experiencing on my lower legs resulting from my monthly immunotherapy treatments: lesions, bruising, boils, swelling, etc. As I have learned/observed, immunotherapy tends to present a double-edged sword: It can sometimes deliver an NED CT scan… but post-delivery, it might proceed to attack your immune system in ways you really don’t want. In my case, it has decided that it really likes those cells that protect the skin of my lower legs.

Anyway, just in the past week, the aforementioned symptoms have shifted into over-drive. And, unfortunately, the unsightly look of my legs — esp. the left — is not the worst of it. That would be the pain. I cannot recall any prior level being this bad. We’re talkin’ screaming-in-agony-for-3-minutes-when-you-get-out-of-bed pain. As my doc explained, more than any other part of your body, the shins and feet are flat-out skin-and-bone. Thus, when already swelled, they cannot accommodate the downward rush of blood after you stand up, gravity does its thing, and the lesions fail to accommodate the resulting pressure. (Note: Did I mention that I’m not a doctor?) Whatever the reason, it’s bad… really, really, bad. (Note to Self: That’s enough “really” for one blog post.) 

So, I’m currently on crutches and/or a wheel chair at home. Walking is pretty much out of the question. I do a bit of hopping around the house (right foot only) but that’s about as mobile as I can be at this point.

Last week, I met with a dermatologist at Mass General (Boston) who is expert in adverse skin reactions to immunotherapy. We have a plan. And as I write, things actually seem a bit better than they were even a few days ago. (I merely screeched for maybe 20 seconds when I got out of bed this morning.) But the timeline of “whats” and “whens” moving forward is uncertain, at best.

So, why am I writing this? 3 reasons:

1. If you are reading this, you are probably a friend and this is easier than sending 100s of individual emails.
2. It hopefully puts at least a few guard rails on the rumor mill.
3. As I prepare to retire from a half-century as an educator, I cannot resist getting my “teach” on one last tme. Let me explain.

During Cancer #1 (2011-14: Prostate), my blog posts were of the more stoic variety. Although totally freaked out to have cancer, something I had always seen it as a “thing that happens to other people,” I masked that feeling by presenting an “I got this” demeanor. That’s just where I was at that point in my life. As for now, maybe Bob Dylan put it best: “Ah, but I was so much older then, I’m younger than that now.” 

Maybe it comes from looking at your mortality eye-to-eye and having it look right back at you, but now I’m motivated by a crusade-like urge to help raise societal understanding of cancer… to help people break out of the “availability heuristic” mindset and both broaden and deepen their understanding. (I know that lives can be both saved and enriched as a result.) God willing, I’m thinking about writing a book about it. But in the meantime, how might one broaden and deepen that understanding? I’ll close here with 3 “starter” suggestions:

• Before equating (i.e., limiting) your understanding of cancer with the experience that “Uncle Bob” or Grandma or friend Billy or Sally might have had, take a moment to learn about four other people’s experiences.
• Have all the check-ups you’re supposed to have when you’re supposed to have them. (“No matter how sophisticated the surgical techniques or medications get, nothing beats early detection.” – Dr. Francis McGovern, my awesome(!) urologist at Mass General, Boston.)
• If you’re a web surfer, stick to the proven and reputable hospital sites: e.g., Cleveland Clinic, Mayo Clinic, Healthline. These are helpful, legit, and pretty much void of “medicalese.”

Suffice it to say, it’s been tough sledding lately. But, I’ll take it over a bad CT Scan… any day of the week.

Love & Onward… (Always Onward) – Malcolm