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.

And .... I'm done (the first part, anyway)

This week was really challenging. I felt pretty good on Tuesday, so did some chores around the house for a couple of hours .... mistake. I spent the rest of the week on the couch, and really thought that the nurses would send me home on Friday because my bloodwork was bad. 

Turns out, my bloodwork was OK even though I felt like sh*t. So I got my last treatment (Gemcitabine) on Friday. Brother Don and daughter Kathryn came to the Cancer Agency for the appointment, and tag teamed sitting with me while the poison slowly leached into my body (being pretty dramatic here, aren't I).

So with this last session, I'm done with the chemotherapy part of my cancer treatment. The next step is to wait eight to twelve weeks to recover, and then bladder removal surgery. I had some hope that there might still be an option on the table to avoid the surgery, but Dr. Noonan (Oncologist) put that to rest last week - the standard of care for my situation is four cycles of chemo, followed by bladder removal. 

I'm impressed by BC Cancer for this - when I look into the evolving standards of care around the Western World, only a small percentage of health care systems have adopted this as best practice.  Many have these same studies, but have a hard time moving to the latest/best strategies.

She Quit!

 

OK, so click bait. 

Laura and I met with Dr. Noonan (Oncologist) this morning. 

I've been off for two weeks, so am feeling better - certainly not normal and still a little tired, but improving every day.

The CT scan I had last week showed no evidence of disease outside the bladder - which doesn't mean a whole lot because it's microscopic disease we're worried about. The chemo to date has not shrunk the bladder tumour(s), but it isn't supposed to. It is supposed to hunt down and destroy any cancer cells it finds in my entire body. Except my left foot.

So all signs point to finishing off this chemotherapy round with sessions seven and eight. Starting this Friday (cisplatin and gemcitabine) and next Friday (gemcitabine). After that, she calls Dr. Wong (my Urologist) and she gives him the go ahead to schedule surgery.

I'm on track to finish all the chemo on December 22, so surgery ideally would be the end of February or beginning of March. I talked with Dr. Wong last week and confirmed that his calendar is open on those dates, so scheduling shouldn't be an issue.

When I talked with Dr. Wong he said that "all options are still on the table", although "some are not optimal". This held a glimmer of tri-modal therapy (bladder preservation), but Dr. Noonan pretty much put the stink eye on that option this morning. We're too far down the path of chemotherapy, and TMT isn't optimal for me for a number of reasons (multi-focal tumour, location of tumour near a ureter, bent ureter). 

So back to the "I quit" theme at the beginning. Unless something extraordinary happens, I won't see Dr. Noonan again. She is done. 

Now I look forward to be waited on hand and foot over the Christmas break. 

Party on Garth.

And Now For The Bonus Round

I had the final "Cycle Three" chemotherapy last night. This was the more tolerable of the sessions - Gemcitabine alone for a total of about an hour. Compared to the previous week (Cisplatin and Gemcitabine for a total of three hours),  this is easy.

When we first started, Dr. Noonan (Oncologist) said that "we'll try to get three cycles done, four if you can tolerate it". I wasn't so sure I was tolerating the Cisplatin very well (some kidney function markers and general malaise) but the bloodwork was better this week.

So once I recover from this cycle (two weeks off), I meet with Dr. Noonan again and we decide on Cycle Four (or not). As I've mentioned previously, the stats are pretty glaring - four is better than three, so do four if you can:

[Results: One hundred and twenty-one patients were identified. Patient characteristics are described in the table below. Eighty-six patients received 4 cycles of GC and thirty-five patients received 3 cycles. Ninety-five patients proceeded to cystectomy: 93 received a radical cystectomy, 1 received a partial cystectomy, and 1 was aborted due to positive lymph nodes. There was a statistically significant difference in OS between those who got 3 or 4 cycles (p=0.03) and PFS (p=0.014). Median OS for those who got 3 cycles and 4 cycles was 52 months and 92 months respectively.]   *Note: OS = Overall Survival

If I do four, I'll be done on Dec 22. Just in time for Christmas. 

Five down, three to go

 

This week I had a meeting with the Oncologist (Dr. Noonan) on Wednesday, and the CIS-GEM chemotherapy yesterday (Friday, Nov 24). 

This is the beginning of Cycle 3 (2 sessions per cycle). Ideally, we'd like to get 4 cycles done, but 3 is considered acceptable. 

The title of this post is a little confusing. I'll visit the chemo ward (ideally) 8 times. 4 courses of 2 sessions/course. Session 1,3,5 and 7 are the big ones (CIS-GEM) and 2,4,6,8 are GEM only (CISplatin and GEMcitabine).

Because I'm curious I went looking into the stats for 3 cycles versus 4, and found this. TLDR - 4 is twice as good as 3. Do 4 if you can.

The other curve-ball in this is that my kidney function markers are starting to be affected. It was a question this time as to whether I get a "full dose" of Cisplatin or not ... Dr. Noonan decided that I can get the full meal deal this time, but I'm wondering if this will change moving forward. 

I've had a couple of questions about scheduling surgery. The way it will work is that at the end of the chemo (3 courses or 4), Dr. Noonan will call Dr. Wong (Urologist who will perform the surgery) to schedule. I've read different "ideal" surgery timings, but they're all within an 8-12 week window. It seems that "do it as soon as your healthy enough to do it". In our health care system, I'm sure there are other variables out of everyone's control ... 

PS: If you hover over the photo a caption should come up. If it doesn't, this is my bladder and the arrow is pointing to the tumor. This is pre-chemo, and I'll have another CT on Dec 4th to see any changes.

Tinnitus anyone?

One of the side effects of Cistplatin, and one the doctors and nurses check and recheck all the time, is hearing loss.

As I woke up this morning, and all was quiet, I could "hear" a very low level, very constant, ringing in my ears. I have several instances of "serious" tinnitus during the day, but they only last for a few seconds and then go away. I had been concerned that this what what they were looking for. Maybe it is.

It's not especially bothersome (at this level), and I'll report it to the nurses on Tuesday. If this is as bad as it gets, I can live with it. If it gets much worse than this, they might have to adjust the amount of Cisplatin I'm getting next time.

Right to the edge, huh?

Through the first round of chemotherapy, I thought "well, this isn't so bad". Sure there were unanticipated side effects, but they all had fixes and it was just a matter of a few days to get them under control.

Then I had a couple of weeks off, and felt almost like myself. On Friday, November 3, Round Two started. It's the heavier session with both Cisplatin and Gemcitabine - in total takes about three hours to infuse.

I was hit by a truck. Zero energy, upset stomach, leg and arm pain. I could sleep on the couch from 2pm till 7am the next morning and still feel tired.

But today (Friday, Nov 10) I get the Gemcitabine by itself - takes about a half hour. And I feel OK. It's almost like they know what they're doing...