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.

Recap and some news...

Instead of making you read all of my prior posts, I'll give a short recap here to bring you up to speed. 

• My latest journey is all about cancer.
• In May of 2023 I saw blood in my urine.
• After some initial testing, and a cystoscopy in July, I was found to have bladder cancer.
• A TURBT in August showed that the cancer was Stage 2, Muscle Invasive. The protocol at this stage is chemotherapy followed by bladder removal (radical cysectomy).
• I had four rounds of chemo in Oct-Nov-Dec (cisplatin and gemcitabine).
• After two months of recuperation, I had bladder removal surgery on Feb 29, 2024.
• The pathology of the bladder (and prostate, and lymph nodes, and ...) was the cancer was very aggressive, and had spread to 1 of the 8 removed lymph nodes. 
• The odds were 80% that the cancer, once escaping the bladder, was roaming around my body, so the next step in the protocol would be immunotherapy (Nivolumab) to try and limit the potential spread.
• I started my first treatment of Nivolumab on May 14. I will have one every 4 weeks for a year (13 total). The next one is tomorrow.
• I also had a CT scan on June 2 to establish a baseline.

So now for the good news. Laura and I were at BC Cancer this morning and our oncologist (Dr. Noonan) said that the scan was clear and there were no areas of concern. She will order another CT in a few months to see what's what, and will talk with me each month before treatment(s).

My urologist/surgeon (Dr. Wong) also called this morning to say that this was "very good news", and doesn't want to talk to me for another 6 months.

So ... the first bit of good news in over a year. 

I'll take it. 

(I think I'll buy a watch ...)

Champagne

I'm thankful that we live in a country with universal healthcare. I got my first treatment of Nivolumab today, and looked up the price of this drug in the USA. Drugs.com says it averages $1,323 USD for a supply of 4 millilitres (10 mg/mL) and my dose was 427mg. This works out to about $14,123 USD per dose. My course is for 13 doses for a grand total of half your house.

PS: The process went well. I was cold during the IV, but it was probably because of the air conditioner duct above my head.

Got A Date

I got a phone call from BC Cancer this afternoon. My first scheduled immunotherapy (Nivolumab) will be next Tuesday, May 14. I hope it goes smoothly. Side effects are rare, but they're serious if you get them. Maybe I'll get lucky. Still no word on the full body CT scan.

As for the previous post (the one about dying), I didn't know at the time that there was already some "backroom chatter" about this in the immediate family. So I'm happy I posted it, and we're all on the same page.

Today, I'm feeling really well (OK - got this cold/cough that is lingering).

So, onward. Once this first session is done, the remaining twelve should happen four weeks apart - which makes our lives a little easier to plan.

On Dying

Bladder cancer will likely kill me. There, I said it.

We go around in circles not talking about it, but everyone who's read these pages knows the quick progression of this disease, and the revised odds of defeating it (about 25%).

I hope this is beatable, and I am doing everything possible to win this battle. But in life it is always better to hope for the best and plan for the worst. I think a major part of planning for the worst is admitting what the worst really is.

The family has asked me several times whether I want to seek out counselling, and I've declined. Maybe it's my stubbornness, or maybe it's hubris, but I don't really think I want or need it.

Just as with my stroke, "it is what it is". Getting to acceptance is something I've always been good at - any of you that know me have to give me credit for that. I consider myself a realist and a pragmatist, so why should this situation be any different?

For those of you who believe in (a) god, please know that I don't. Never have, never will - so please don't ask me to start.

So what do I do?

I want to talk openly about it. I don't want it to be off limits. I want to plan. You all know how I crave a good plan. Maybe my epitaph should read "He was organized".

It's still very early days with the diagnosis and my immunotherapy hasn't even started, but I want to write down these few words to let you all know where my head is at.

PS: One of the kind gifts the stoke left me with is something called the pseudobulbar affect (emotional lability). So when you see me have a burst of crying, please understand that I really do want to control this emotion, but I can't (ask Laura).

PPS: I think writing this blog is my therapy.

Lies, Damn Lies, and Statistics ....

We met with Dr. Noonan at BC Cancer this morning. Alan came as well, so we had our Immunology PhD in our corner to ask intimidating questions.

It seems to me that my cancer treatment now comes down to studies and statistics. Here are the ones I think I understand:

• When the oncologist calculates my specific risk for bladder cancer recurrence, the number is 80%. 
• There is a 20% chance that I am now disease free, but because there is no test to determine if that's true, the smart money is that I have cancer cells still floating around in my body.
• It would take a year or two of waiting to see signs of a tumour somewhere else in my body. Dr. Noonan explained that if we waited until we saw something, treatment would become maintenance - not curative. So waiting is a bad idea.
• Dr. Noonan's recommendation is that we start immunotherapy (Nivolumab) right now. I will need to get some bloodwork (OK - a lot of bloodwork) and a CT scan to establish a baseline as Step #1.
• In recent data presented in Paris on the efficacy of Nivolumab in bladder cancer patients, it showed a 7% improvement in disease free survival at 3 years. The trials have not run longer than that, so this is all the data we have.
• Noonan is optimistic that this will do something. This is the promising new therapy for a bunch of different cancers. 
• The ideal outcome for the Nivolumab treatments would be to cure me of bladder cancer.
• The side effect profile of Nivolumab is nowhere near as harsh/prevalent as in chemotherapy, although when they do show up (maybe 10% of the time) they can be quite serious. Most patients have limited or no side effects from the drug.
• The protocol for delivering Nivolumab will be once every 4 weeks, 13 times (1 year). Infusion will be through an IV, and will take about an hour. I'll have a conversation with Dr. Noonan before each treatment.
• I will start this new journey next Monday with the longest list of blood tests I've ever seen. Then a CT will be scheduled. Immunotherapy should start in a few weeks.

So those are the salient points (I guess?). It will take me a bit to wrap my head around this, but now there is a plan. Plans are good.

PS: You can nerd out on this.

PPS: It took me a while, but my situation right now is 1 in 4 (20% + 7%) that I can beat this. If only there was something additional I could do to improve the odds. But as my heart surgeon said in 2006 (sad that I had a heart surgeon), statistics only apply to other people.

Normalizing

This might seem a bit weird, but of the many things that have happened in the last couple of weeks, my new stoma and urostomy pouch system have been the least concerning of it all.

I've now had three home visits with nurses at Fraser Health (our Health district). All were excellent, all watched me do a complete "bag change" and all offered some tips to make it quicker and more secure.

It really is simply a different way of doing things, and I can see myself comfortable with it in a few weeks.

I no longer have to get up and go pee at night.

What's caused more consternation is the pain/itching of the axe wound I have below my navel. It's not so bad sitting still, but rubs and itches when I walk, and it's really hard to find a comfortable position when I sleep. It's also awkward when I MMA fight.

I neglected to fill the prescription for Tylenol-3's they gave me when released from the hospital - because I'm a man and can suck it up.  Wrong.

The other irritation I have is injecting myself with Lovenox every night until March 29. I know, I know, diabetics have to do this every day, but it still sucks! (Lovenox is a derivative of heparin, a blood anticoagulant.)

I'm walking more and more each day, and can feel the energy starting to come back. I'm driving again (doc said that the only concern he had was opioids and narcotics - as soon as I was strong enough and off the drugs I'm good to go), and I can put my shoes and socks on myself. I'm a big boy!

So onward and upward. Gotta get strong to start the next phase - I think it will be Nivolumab. We'll know more April 8 (meeting with Dr. Noonan at BC Cancer).

Pathology Results. Doug 4.3?

I was called into my surgeon (Dr. Wong) yesterday to get my staples and stents removed from the RC surgery (radical cysectomy) I had on Feb 29. He also had pathology results from the surgery.

As it turns out, a couple of minutes before I arrived he was called in to emergency surgery at RCH (next door), and had only seconds to see me.

So all the pathology results I have so far were lying flat on my back while he took the staples out. This story may change in the next day or two if I get more information out of him.

OK - so the pathology. I was originally diagnosed with Stage 2 MIBC (muscle invasive bladder cancer) in August 2023 with no evidence of spread. I had 4 rounds of GEM-CIS chemotherapy (Oct-Dec '23) before RC surgery.

The surgical pathology results were that the bladder was completely removed with nice margins surrounding the tumor(s). Same with the prostate and seminal vessels. But one of the eight removed lymph nodes removed showed cancer. So this now has to be reclassified as Stage 3.

EDIT: I did hear from him. Cancer was very aggressive, and had entered the fat layer of the bladder, although when it was removed it appeared completely contained. The actual tumor was about 2cm. To put this in perspective, Dr. Wong had removed the entire tumor in August. It had grown to this size in six months, in the middle of chemotherapy.

Wong is now referring me back to my oncologist (Noonan - I thought she quit!) for immunotherapy. I believe the therapy will be Nivolumab. So while this is not good news, I'm spinning this that having immunotherapy at this stage is probably a good thing. Without the lymph node being affected, I'd go into a monitoring program. This way, regardless of what is actually going on, I'm getting the immunotherapy. Wong may have removed all of the cancer. But maybe he didn't.

ANOTHER EDIT: Got a call today (3/14/24) in to see the Oncologist on April 8.

Doug 4.2

 A little housekeeping.

• Doug 4.0 diagnosis
• Doug 4.1 chemotherapy
• Doug 4.1 radical cysectomy

And I'm Done?

It's Friday, March 8th, and I was released from the hospital this morning.

We arrived at Royal Columbian Hospital at 6:30am on Thursday, February 29 - surgery was slated for 8:45am. I was wheeled into the OR at 8:44am (I asked what time it was because I'm that kind of a guy). 

It took about 20 minutes up front to have the anaesthetist install an epidural. He told me as he's trying to jab something between L2 /L3  (or was it T3 /T4) that I have minor scoliosis. Who knew (certainly not me)? Anyways, lights out about 9:15am on Thursday. 

(The reason they give the epidural is to ensure that the entire mid-section of your body stays completely anaesthetised during the surgery. Apparently it's very simple and reliable. It also prevents the screaming when you wake up mid-procedure.)

I wasn't there when it happened, but Dr. Wong called Laura about 12:20pm and said he was done, and happy with the results. So a little over 3 hours. 

Although the hospital was super busy, the care and attention I got was outstanding. I left with a bag full of supplies, a couple of prescriptions, a handful of to-do's, and some Halloween candy. 

I look pretty good, and it only hurts when I blink. 

We will have pathology back on the bladder, prostate, lymph nodes and seminal vessels (all the stuff they removed) in another week. I'll write another update then, with the plan moving forward (surveillance, more treatment, buying a round-the-world cruise on a credit card).

Home and feeling good...

X Marks The Spot

I'm feeling pretty good right now. That's the pernicious part of all this ... you feel fine but there's a big problem brewing inside your body.

Yesterday, brother Don went with me for all the lab work and ECG I needed at Royal Columbian Hospital. We also walked down some long-forgotten rabbit warren hallways in the basement to find the Ostomy Nurse (Lucy). She spent about a half hour with us, answered all kinds of random questions, and put an X on my stomach where the best location for my stoma would be. It turned out to be a little more involved than I thought it would be - all kinds of factors to consider that I had never thought of (can you see it when you stand up, where's you beltline, where will the bag sit).

Two weeks today is surgery day.