Update #17 – Next Thing I Know… The Stage IV Blues 

Greetings, Let’s see… Update #16 (3/14/26) had me headed to MGH-Boston for a 3/30/26 needle biopsy to determine if the thickened rectal mass in my abdomen is cancerous.

After waiting a week for the results — see “Scanxiety” — I learned the answer: Yes.

Next. Thing. I. Know. — 4 words that anyone with cancer needs to both accept and accommodate — my calendar is chock full of “-ologists.” (By my count: 6 different prefixed ones: oncol-, urol-, gastroenter-, etc.) Heck, on 4/9/Thu I found myself at 3 different MGH hospitals in two different states. (Thanks, Gigi MacMillan, for riding shotgun the whole way!)

During those appointments, I learned that my bladder cancer journey has arrived at Stage 4. Hold that thought. (If I can, you sure can.)

When I wrote Update #1 (11/24) — which obviously was not called that back then — I had no thought that I’d still be writing these things 18 months later. And each time I sit down at the keyboard, a dilemma pops up: Do I lead with how I’m feeling and then fill in the details?… Or… Do I lead with the details and then try to convey how they’re impacting my head/heart/psyche?

In the spirit of Next.Thing.I.Know., allow me to mix the two a bit, leading with my takeaways from my meetings with my legion of -ologists.   (And please appreciate one proviso: “My takeaways” should not be perceived as 100% accurate as to what was said or meant by my doctors. Hey, “a lot to take in” doesn’t cover it. I mean, this last month has felt as though I’ve had a bowling alley installed in my brain.)

Anyway, during my MGH trifecta day, one doctor said, “Malcolm, the bottom line is: We have now done a major surgery (i.e., radical cystectomy, 11/24), a full chemo regimen, and half of an immunotherapy regimen (i.e., cancelled last December due to my legs blowing up). And yet, the plasmacytoid has evaded all three of these measures. The good news is that there are no new cancers in your system… but the plasmacytoid is still there.”

The same doc went on to say, “As we/you have known since the beginning, plasmacytoid is a very aggressive and very sneaky strain of cancer. It’s not like a tumor where we try to decide whether it’s bigger than a marble or smaller than a golf ball.  It’s microscopic. It’s amorphous. Surgeons are never sure that they’ve gotten all of it.”

When I met with my two oncologists, I presented a single question: “Is the treatment plan you are considering being designed for a goal of recovery or for palliative care?” The response: “We’re not yet sure…” was strangely comforting, and more so after they explained the careful process they were following to come up with the result.

Returning to the Stage 4 factor… “Stage Four” are two words that never fail to elicit a shriek, be it audible, a facial wince, or a silent look of serious dread. To be sure, I showed all three when my doc first laid the diagnosis on me. Needless to say, it was not what I was hoping for when I did the needle biopsy only 10 days before.  No way it can be perceived as good news, but I came away feeling that all was not lost. Here is my understanding of the future:

– “Cure” is neither likely nor the objective.

– The treatment goal is to shrink the cancerous mass. Hold it at bay, isolate it, render it unable to spread. If that is successful, perhaps surgery or radiation could come into play.

– Stage 4 is not necessarily a death sentence. Many people in similar circumstances have gone on to live meaningfully for many years, some for decades. (I have seen testimonial proof of this on an awesome online bladder cancer support group I follow.)

For my part, I:

– Want to be one of those people — See “meaningful years.”

– Do not want to spend every waking hour consumed with a desperate obsession with gaining a few extra crumbs of longevity. (And it goes without saying that I do not want to live in constant pain.) 

– Would rather have 12-18 quality months than engage in a desperate struggle in order to maybe get 4 or 5 more. 

So, On 4/20/Mon, I went to Portsmouth to begin a treatment program that — depending upon how my body responds — will involve a combination of medications beginning with PadCev, a targeted antibody drug conjugate, possibly to be followed by KeyTruda. (You can see ads for both on TV.) The actual process — infusion through the port I had installed a year ago — takes only a fraction of the time that the chemo took.  Depending upon the outcomes of these treatments, it is possible that radiation will be utilized further down the road.

How did the first treatment go? Well, it was all going swimmingly until there were maybe five minutes to go when I started to feel funny and… Next. Thing.I.Know… my body starts shaking in convulsions, my blood pressure sky rockets, and all color fades from my face. All I could say to the nurses was, “It feels like somebody just shovelled hot coals into my abdomen.” For the second time in barely a month, cancer had rendered me miserable.

Thankfully, the excellent MGH nursing team jumped into action, swapping out the nearly empty PadCev dose for some Demerol and things calmed down. As you may have surmised, my body had an allergic reaction to the medication. Now my docs are working on Plan #B. The hope is that an alternative dosing method may make it possible to continue the PadCev/Keytruda protocol as they continue to feel that this combination represents my best option, for now, or until the Next.Thing.I.Know. 

So, there you have it, the long story. I’ll end with the short one, the elevator speech: “No way around it, my prospects are not good. But they’re not hopeless. My hand has some good cards — great doctors, strong physical condition, a level of love from family and friends that I can’t believe — and I intend to play them to the best of my ability.” 

I also want to spend time playing with this guy…

And these two…

Lots to live for.  Onward, Malcolm