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.