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.

Getting Into Shape (?)

Although I was worried that I might not get back on my bike for months and months, I checked with Dr. Wong last Friday and he said "no problem". My last ride was October 1 (2023) and had no idea how I'd do. It was easier than I thought, but harder than it should have been. 

My butt hurts. 

I have a little over three weeks to get in reasonably good shape - as I know all too well "the stronger you are going in, the stronger you are getting out". Unfortunately, the last time I had to really test this was in 2009, and I'm fifteen years older than I was then. I was also in really good shape.

I can't say I'm looking forward to the surgery. It's major, and I know it will take a long time to recover. The only redeeming thought I have is that many people in much worse shape than me have come through just fine.

I only wish it was the end of March...

A Winter Break Update

The last two rounds of chemotherapy really left me drained. After the last cycle - which ended December 22 - just having a shower was exhausting, and I spent most of the days sleeping on the couch. 

Knowing that surgery was going to be in two to three months, the plan was to get healthy again ASAP. 

Along with almost everybody else, I got a nasty cough on December 29 - one that lasted for two weeks. I basically just lounged around on the couch for the three weeks after Christmas.

Now things seem more stable. I am getting stronger - although the weather is not cooperating to get outside for a walk to test my endurance.  But doing tasks around the apartment/building is much easier.

I got a surgery date - February 29. Even though I haven't done much (exercise wise) I am getting stronger - just feel less drained and overall feel almost back to normal.

Thanks to everyone who's checked in. Lots of food, lots of phone calls and messages.

Not much else to add - in a holding pattern until the end of February.