Doug 5.0 **

OEM Doug

A couple of old friends have made some poignant comments over my last post, and it's time to turn the page on Doug 4.3. I think this event is major enough to warrant it (thanks, Sherri). Also, I don't care what you think. It's my blog.

This post is really premature, but I figured I should get it all in writing before life throws another curve-ball. Or knuckle-ball. Or fast-ball. TLDR: Not dead yet.

Steve called me the other day, and after a long chat asked what I was optimistic about - and I didn't have a ready answer for him. But after a couple of minutes I thought that I am not exactly optimistic, but I am mostly grateful.

• I'm grateful for our family. Everyone is doing well. Everyone is healthy. Everyone is smart. Everyone is kind. Most of the time, my family understands my humour.
• I'm grateful for being surrounded by friends. Many, many we've had for thirty, forty or fifty years. And these aren't just people we know - these are people we still see regularly. Most of the time, these people do not understand my humour. Or me. They tolerate me because of Laura.
• I'm grateful that I got an extra nineteen years. My heart bypass was in 2006, and my stroke was in 2009. Both could have been extinction events. It's been all me-me-me for almost twenty years.
• I'm grateful that Laura and I took the time to tackle our bucket list early. We've travelled a lot, seen a lot, and done a lot. I've had a good ride. So long and thanks for all the fish.
• But mostly I'm grateful that Laura, the love of my life, will be OK. She's surrounded by a world of people that will help and support her. All of you know it was always her, and I was just along for the ride.

* Special shout out to my brother, Don, who's been there through this whole roller coaster.

**

Doug 1.0 - OEM Doug in 1960

Doug 2.0 - Heart Bypass Surgery in 2006

Doug 3.0 - Stroke in 2009

Doug 4.0 - Cancer in 2023

Doug 4.1 - Chemo

Doug 4.2 - Radical Cysectomy

Doug 4.3 - Immunotherapy

Doug 5.0 - Today

It's Back...

Alan and I went to see my new oncologist, Dr. Suo (Dr. Noonan is on sabatical) this afternoon for the results of my PET scan in early May.

The results are not good. The worrisome mass seen in the CT scan last month is the glowing red/yellow spot in the middle of the PET screenshot above (the red/yellow at the top of the shot is my urostomy bag). The scale on the left of the screen (white to red) is the aggressiveness of the tumor. Mine's very aggressive.

Bladder cancer, for me, is going to be terminal. All we can do now is treat and try to slow it down. There are no curative options. From here on in, we'll be playing "wack-a-mole".

Dr. Suo left us with some options, and they are:

1. Talk with Dr. Wong (my urologist/surgeon) about resection (surgical removal) of this tumor. It's in an awkward spot, and it's not likely, but it's worth asking.
2. Dr. Suo is going to talk to the radiotherapy people about radiation. Again, close to the bowel, and they don't like to do that, but worth asking.
3. Lastly, and most importantly, I'll be starting a new program of chemo-immunotherapy. The drugs PADCEV (Enfortumab vedotin) and KEYTRUDA (Pembrolizumab) will be given every couple of weeks until it either stops working or I tap out.

 

 So there it is. I have to decide, at some point, when the treatment vs. quality of life equation becomes an issue. For right now, I'll start the chemo/immunotherapy and see how I tolerate it.

 

PS: The FGFR mutation I talked about last month is a non-starter - I don't have it.

It isn't over till it's over

We met with Dr. Noonan (my oncologist) this morning to get imaging results.

I had a CT scan on April 3 to see if there was any indication of cancer spread (my last CT was in June 2024 and was clear).

It showed a small (1.5cm) growth on my left pelvis. It could be scar tissue from my surgery in Feb'24 or it could be cancer spread.

To determine what it is, I'm now being scheduled for a PET scan (PET uses sugar to detect cancer). 

If the PET comes back negative - then I guess we'll figure out what it is and what to do about it. But if the PET comes back positive, there are some options.

The pathology from my surgery is being sent to the lab to see if it will respond to a FGFR immunotherapy. If it won't, then we'll consult with radiation oncologists to see if the growth can be treated with high-dose radiation (it's close to the bowel, and they don't want to radiate the bowel). If neither of those are options, then there's some other immuno/chemotherapy to try. And then there's some research studies - and being relatively young and healthy I should be eligible.

Net-net, all is not lost. There are options. I feel good and am in pretty good shape. 

Bring it on.

Update: 4/17/25 - spoke with Dr. Eigl about the trial (link above) and he's starting the ball rolling with testing of my bladder sample (plus additional blood testing) to see if I have the FGFR3 mutation. If I don't, there are some other newer therapies to try.

Never too late ???

Over the last couple of years my brother Don has been a huge help for Laura and me (and Kath and Dave) while I've been going through this latest adventure in cancer-land.

He was there at the hospital when I had the surgery, drove my dad in to see me, brought coffee in the morning while I was unable to move, and helped Laura make sure that somebody was always either there or nearby all the time. And he didn't seem to mind sleeping on the couch.

He was with me at my last chemo session in December 2023, and at my final (?) immunotherapy session last week.

This was not the first rodeo.

In 2006, Don also showed up to help us when I had bypass surgery and we had a move scheduled for the exact same time. He was living in Fernie at the time, so no small trip to come see us.

I can't count the big (and small) kindnesses over the last fifteen years.

So thanks again Don. I doubt I could be as good a brother to you as you have been to me.

 

Twelve down, none to go?

 

I was always convinced that I would have Nivolumab treatments for a year. Every four weeks for thirteen rounds.

Yesterday was treatment number twelve.

Normally when I go it I drop off an "appointment card" where they fill in what's next (next labwork, next therapy, next meeting with the doctor). This time they returned the card with only two items: (1) CT scan scheduled for April 3 and (2) meeting with Dr. Noonan on April 14.

This was unusual, so I called back to see if they missed something. They didn't. The only thing on their books are these two things. So maybe that was my last session? I guess I'll find out on April 14th, where I'll also get the results of the CT scan on April 3.

The scan will tell us whether they can see any cancer spread. I feel good, and have no obvious symptoms of spread, so fingers crossed.

Am I Naively Optimistic?

I'm pretty active on a subreddit called r/BladderCancer (d'uh). I find there's lots of people there that have been coping with this disease for a long time - the majority have NMIBC (non-muscle-invasive bladder cancer) where the prognosis is generally good, and the disease is managed in the short and long term. Less often, I find another case of MIBC (muscle-invasive) bladder cancer. This week, a son wrote about his 54 year old dad with MIBC who had a radical cysectomy, and found one involved lymph node in the pathology. 

Sounds just like me.

His dad's surgery was in January, and the pathology was just recently given to the family and he was wondering what the probable next steps were. He gave some details on the pathology, so I went back and looked at the details of mine, specifically about the involved lymph node:

When I reread my pathology, with many months of research and introspection, as well as my general feeling right now (quite good - pretty normal), I dove deeper into the details of the affected lymph node.

Specifically the terms "subcapsular" and "Extranodal Extension". Subcapsular means inside or below a capsule, and Extranodal Extension means the cancer has escaped the capsule(s).

So I guess this means that, although the cancer escaped the bladder itself, it was still incapsulated in one lymph node. The node itself was pretty large (2cm - average lymph nodes are about 12mm), and the "largest metastatic deposit" was 2mm.

Because I've had no symptoms of any kind in the last 10 months (except that UTI in the summer) that maybe indeed the entire mess was removed in the surgery a year ago.

Everyone teases me about being a fatalist (even before the bladder cancer), but I'm finding more reasons now to be an optimist.

Seventy Seven

I had session number ten (of thirteen) yesterday. Again, completely uneventful and the nurse even got the IV catheter in on the first try (this has been somewhat hit and miss over the last forty weeks).

The only other stuff going on is that Laura is back in Harrison Hot Springs for her annual five week job at the Canadian Labour Congress. She has been providing child care for their "Winter School" since 2012. It's her favorite gig and she looks forward to it all year.

As for me, I've been occupied selling off three of my watches - I now have three left. One was a SARB035 that we gave to Dave years and years ago - but he doesn't wear a watch, so was OK with me selling it for him (better somebody get use out of it than sitting in a drawer somewhere). The other two were recent purchases that I never really bonded with - so out they go.

The ones on this page are the ones I'm keeping. You probably don't care what they are. But in the off chance you do, just hover over the image.

So I'm in the home stretch now - the last immunotherapy session with be on April 15. Dr. Noonan wants to have a phone call in February (she doesn't even want to "see" me) and we'll determine where we're at.

Oh - Seventy Seven is the percent I've done now.

Christmas - Festivus 2024 Stewart Newsletter

Welcome to my annual announcement of how we’re doing so much better than you. Even if we aren’t.

Dave. After living in Montreal for several years, and trying really hard to make his art pay, he has decided to take a break from all the Frenchness and move back to Seoul. He’s teaching English, and he begs forgiveness for being the catalyst behind their recent Martial Law debacle. Note that he left behind a bunch of paintings at the Corkin Gallery in Toronto. Have a look and buy something, would you?

Kath and Alan and George and Edith. No huge change this year except that George is now at kindergarten all day. He’s also in Tai-Kwon-Do on Saturdays. The Jake Paul fight is scheduled for later next year. Edith is a mini Kathryn - knows exactly what she wants and when she wants it. Still at the daycare beside Children’s Hospital - where Alan works. Kath is a teacher in North Vancouver and I’m exhausted just hearing about their busy days. They all had a big trip back to England this past summer where there’s a ton of family on Alan’s side. We see them often, and the grandkids stay over on the weekend pretty frequently. I have Lego in my sock drawer.

Laura keeps busy with the part time ECE gig. She’s slowing down a bit and trying to plan some handing off of her bigger projects (CLC in Harrison Hot Springs every year).  We’re still living the hi-rise life and, come this summer, it will be the longest we’ve ever lived in one spot.

Me, I’m still alive. After the bladder cancer diagnosis last year, I had my bladder (and other bits and pieces) removed in February. The cancer had spread, and so now I am on a years’ worth of immunotherapy (last treatment will be April ‘2025). So far, so good. I don’t have any symptoms and my last CT was clear. I look fantastic, and my charm is off the charts. I’ve kept up my blog (it’s my therapy, and you're reading it now) and now goes back some 18 years.

So in a nutshell, that’s it. We keep on keeping on. The grand kids get bigger, and our kids get older. Life is pretty good.

We hope your lives are good too, and you’ve learned to pivot when uncomfortable stuff gets in the way (that’s my new word - pivot).

Wishing you all the best for 2025.

Platonically,

Doug (and Laura).

A New Hope

Nivolumab treatment number eight is tomorrow, and today I had another (bi-monthly?) sit down with Dr. Noonan (oncologist). I'm pretty convinced the doctors only want to see me in person now to actually get their eyeballs on me. If I look OK, I'm likely OK. If I look sick, then there's alarm bells.

Anyway, I look good, and she was pleased about that. So other than talking in general about treatment side effects, I had a couple of ad hoc questions.

• Q: If things continue to go well, what is the typical natural progression of this disease? Does it hide in the background for years?
• A: Urothelial cancer, if it's not cured by the surgery or the nivolumab, would tend to come back in the first two years after treatment. After five years, the odds fade into background noise (my interpretation on the five year stats).
• Note: I don't know when the two/five year clock starts/started. Should have asked that - next time.
• EDIT: I asked for opinions on the Bladder Cancer Sub-Reddit (I've received lots of good information there), and the consensus is that the clock starts when there is no evidence of disease - NED (so for me, after the radical cysectomy - RC). So my clock would have started in March'24.
• Q: So if it comes back, is there anything that can be done? I've been going on the premise that Nivolumab was pretty much the last hope.
• A: There is another immunotherapy, enfortumab vedotin (EV), that is showing some promise - and that would likely be the next step (should things go sideways with the current treatment).
• Q: What can you see with the monthly bloodwork I have before each immunotherapy session - does it tell you anything other than I'm OK for the next treatment?
• A: Dr. Noonan can see markers in those tests that will say things are not right. This would lead to some more diagnostics, beyond just modifying the session.
• Q: So we talked about not doing another CT scan until the end of Nivolumab? What is the schedule?
• A: We'll do a CT at the end of the current treatment (April '25) and then every six months for two years. And then every year for another three years - so a total of five years. That seems to be a typical screening for every cancer!?

So things look good right now. I feel fine, energy levels are good, and side-effects are minimal and easily handled. My next treatment is tomorrow (Nov 26) and the one after that is Christmas Eve.

Half Way

Yesterday marked treatment number 7 (out of 13). This means I'm a hair over half way through my adventure with Nivolumab.

I feel really very good. No unexplained pain anywhere, and the treatments are non-events. I hope this is a sign that things are progressing well. The cancer was aggressive, and I think I would see signs of its return by now. The doctor(s) won't say as much, but when I ask this question, I think they think this too. 

Maybe I am one of the lucky 27% that beat this thing (the math is that 20% of the time the surgery itself was curative, and the other 7% comes from the efficacy of the immunotherapy (Novolumab)). Unfortunately there is no blood test I can take to see if there are any microscopic bladder cancer cells floating around in my body.

On a completely unrelated side note, I met with my cardiologist this week too. He ran an EKG and listened to my heart, and then sent me packing. He only wants to see me again if some heart-related issue comes up. I said I'm sorry that he's now relegated to the bench, but my current doctor/specialist roster is full. 

I'm still not over the John Ostrom tragedy last month, and think about him a lot. Our next grad reunion is in 2028 and I'll miss seeing him there... 

So Sad....

I started writing a post yesterday, and didn't have much to add over last month. I got some news this morning, though, that turned that on it's head.

I met John on the first day of my new school (Seal Cove Elementary) when we moved to Prince Rupert in 1972. I was 11. He was one of the first people I met, and we had remained good friends all through elementary school, high school, and I would often spend the weekend with him when he was at UBC and I was at BCIT.

We drifted apart after that, but reconnected in Calgary when we lived there, and then again at every high school reunion - we both attended every one.

In my last conversation with him, he was ramping down for retirement, and planning on a move from Calgary to Vancouver Island. I said it'd be great to see him more often than once a decade.

John knew I was into watches, and part of that last conversation was about me helping him sell a watch he'd had in high school (a Seiko "Willard"). His parents gave him a Rolex when he graduated UBC, so the Willard was relegated to a drawer for the last thirty five years.

Our friend Christine reached out to me this morning and asked if I'd heard that John died last Sunday. I hadn't, and I'm shocked and saddened. Me, with all the stuff wrong with me, is outliving many of my closest friends. This sucks. Carpe Diem.

John Ostrom 1960-2024

Da Bears

I just completed my fifth (of thirteen) immunotherapy sessions, and as before, it was pretty uneventful. The major change I made this month was to cancel our Grand Canary trip (scheduled for November) after some conversation with my oncologist and family doctor. In a nutshell, we caught the UTI in July right away and I had antibiotics in me in a few hours. That same feat might be really hard to do far away from home in a country that speaks a different language. Had this infection had some more time to brew, it could get pretty serious pretty fast, and that's a risk I'm unwilling to take. We'll catch up with Andrew and Cheryl once the boat is in this hemisphere.

So as a consolation prize, Laura and I are heading up to Telegraph Cove next week to do a grizzy bear watching tour. We cancelled our bear viewing in Bella Coola last year when the cancer diagnosis happened, so we'll try it again in a different venue.

0.3077

On Tuesday I had my fourth (of thirteen) Nivolumab treatments. Again, no side effects so far from the immunotherapy, although the cumulative affect of the chemo I had last fall has stabilised. I have permanent tinnitus (ringing in the ears) and some neuropathy in both feet (they tingle, especially in the shower). All in all, not a bad outcome (side effect wise).

I also got my follow up urine culture and chest x-ray done to close the loop on my Calgary extravaganza. There was still traces of blood in the urine (which my doc said not too concerning based on all the surgery, missing parts and new parts that I now have), and the chest x-ray is now clear. I followed up with Dr. Noonan about it, she said that Foothills Hospital in Calgary did exactly the right thing(s).

When I talked with both my oncologist (Noonan) and GP (LeVoi) they cautioned me about the heightened chance of UTI's from now on - and the only indication I'm likely to get is a fever (maybe kidney pain too). So I'll have to see them about carrying some "just in case" antibiotics with me when we go overseas in November. I do not want to sit in a hospital in Spain trying to explain what's going on.

Otherwise, things are good. I feel good. I look deceptively great. And my charm and wit are exceptional.

Oh, the 0.3077 in the title? That's the percentage I've done with the Nivolumab.

Delays, Disease, and Destruction

Although this post sounds kind of ominous, and for the people affected it was, we have come through unscathed.

Once I got the "all clear" to travel after a good CT scan, we hopped in the car and overlanded to Calgary.
The intent was to visit family that had been crossing their fingers for several months hoping things would turn out OK. We would stay with Kelly D, who lost her husband (and my buddy) to a glioblastoma in 2010.

We took two days from Vancouver, and stopped in Revelstoke overnight. The following day, which was supposed to be a quick run into Calgary, turned into a major delay on Hwy 1 just outside of Field, BC. A terrible accident (non-fatal) closed the highway in both directions for about four hours. We were there for all four - I couldn't bring myself to turn around and detour through Golden and Radium. Thirty degree heat, open asphalt, and a thousand stranded cars and semi-trailers.

On the Saturday my cousin, Debra, hosted a family dinner with the "surface of the sun" temperatures Calgary was feeling. Fortunately, she had air conditioning. Unfortunately, it was the first sign for me that something might be wrong.

I woke up Sunday morning shivering, and with a 39 degree fever. I called BC Cancer, thinking this might be a side effect of the Nivolumab, but they said it likely wasn't. I was to monitor it and go get checked out if things remained the same or got worse. It got worse really quickly, so Laura drove me to Emergency at Foothills Hospital to get checked out. Alberta Health still had me in their records from thirty years ago in Okotoks.

Dr. David Choi was attending, and he was excellent. Came back to me in about an hour and said "you have a screaming urine infection" (UTI). They also ran a blood culture to make sure nothing was growing there either, and a chest x-ray just to round things out. The chest x-ray did show suspected LLL pneumonia.

So I was put of Levofloxacin for a week. This is the same drug used for Anthrax. They also gave me a nice little form to show who had done what, and to copy it to my GP.

I actually felt worse on the Monday, but things had definitely improved by Tuesday morning. As I write this on Sunday, all systems seem back to normal.

When Laura planned our trip, we were going to end it with four days at the Panorama Ski Resort (not to ski, we have a membership with Hilton Vacations). It cost her a lot of points so it was important to go if I was OK.

I was OK but the planet is not OK. Jasper was destroyed on Wednesday night, and the scene is horrific. We got a phone call from a friend in Invermere (just outside of Panarama) on Thursday morning that it was "apocalyptic" there too. Laura called the General Manager and she said "do not come" and they would refund the points. 

So we stayed an extra night in Calgary and headed home taking the southern route (Hwy 3). We took our time there as well, and divided it over three days. Note that we probably dodged a wildfire or two on the trip home as well. Smokey in many of the places we stopped, until we got west of the Okanagan Valley.

Three down, ten to go.

This week was treatment number three of Nivolumab. Up to now, there have been no side effects whatever, so it's pretty much like a saline IV for a half hour.

But this time was preceded by a meeting with Dr. Lilly Lee. She was standing in for Dr. Noonan - my regular oncologist, who is on vacation. I found her somewhere between my urologist - Dr. Wong - and Dr. Noonan in terms of temperament, although she has significantly more clinical experience than either of them (I guess her age as late forties, early fifties - and has been practising oncology for twenty years). Pretty pragmatic. Pretty matter-of-fact. But with an empathetic veneer. 

Anyway, she and I talked for about a half hour. She referred to the Nivolumab as the "insurance therapy" they were not able to offer just a couple of years ago. Back then, a person in my position would be left to go home and see what happened - there was no additional treatment available for muscle invasive bladder cancer. You either lived or you died.

Although I couldn't really pin her down, she did admit that a clear CT at this stage was a good thing. In her practice she would likely not do another until the full course of treatment was done (one year) - or maybe none at all. Her comment was "why go looking for trouble". I can see her point - if there are no symptoms and something is discovered, all you do is introduce anxiety. If there are symptoms, do the CT to help determine what it is.

So for now, things are good. I feel great, we're travelling again this summer, and have booked flights to The Canary Islands in November to see our friends Andrew and Cheryl on their catamaran (that's their boat in the photo).

Carpe diem?

PS: I did buy a watch. Casio G-Shock custom made for me in the UK.