Cancer: An Unexpected Gift
I’m not sure why, but last week's post as well as this one have been really hard to write. I’ve talked on and on and on over the last few years about my experience with psilocybin therapy and how it helped me. So much, in fact, that I can tell the story without much emotion now. Once in a while something bubbles up, but I usually feel like I’m just speaking from a well-worn script that I don’t even need to think about anymore. I can simultaneously tell the story while putting my grocery list together in my head. But I haven’t really talked about the last year yet. Partly because no one’s asked, partly because there’s been a ton of crazy stuff happen and I’m trying to decide what parts of the story to tell, and partly because I’m still working through it. I don’t know how the story ends yet, and there’s still a lot of emotion there. So here’s my attempt, and I hope you find something meaningful in it.
There were no clinical trials, so my only option was more chemotherapy and another surgery. This time they may have to take part of my left hip and there could be nerve damage, which would mean I’d be left with an uneven gait, and my left leg may drag when I walked. Walking had become the one activity I could still do and really enjoyed, I was walking for miles every day by that point, and now that might be taken away too? Truthfully, I could have lived with all of those things if there were any guarantee that it would work and I’d finally be able to exit this never-ending ride, but the chances were slim. What really made me decide not to have surgery was the thought of having another drainage tube yanked out. It’s always the little things that get ya - death by a thousand cuts, or something like that.
I went back and forth between my Oncologist and Surgeon for what felt like months. I knew what the right decision was, for me, but I was afraid to make it. How do you choose what to do when it’s life and death and the outcome is unknown, no matter which direction you go? It’s impossible, so you just have to cross your fingers, decide what’s right for you, and go with it. So I did.
My Surgeon referred me to another Oncologist, one who works outside of the BC Cancer Agency and may be able to offer different treatment options. I liked my first Oncologist because I knew he was working hard for me. I had many phone calls from him late into the evening, or on the weekends, asking me questions because he was working on my case, I felt safe and well cared for, but there didn’t seem to be any other options, so I made my appointment with the new Doctor.
My first appointment with Dr Sasha was over the phone while out on a walk (one nice thing caused by covid). One of the first things he said to me was “You're the expert on this by now, what do YOU want?” And I replied “I just want to enjoy my life, and if that puts me in an early grave, then so be it.” By that point I wasn’t under any illusions - I knew what my prognosis was and I was tired of feeling sick. We decided that the best option was a low dose oral chemo as it would give me freedom to travel and for the most part do whatever I want. As long as I get 14 days worth of pills down every 28 days, I’m good. Drives the pharmacists crazy, but it works for me. No more rigid schedule of chemo every two weeks with a longer and longer recovery every time. No more nightly shots in the belly (Glenn was enjoying giving them to me a little too much and I was starting to get suspicious). I was finally free to live my life again.
By this time it was the spring of 2021. I was still walking every day, getting out and enjoying the fresh air and sunshine, sometimes with a friend or two or three, sometimes by myself. My outlook on life started to improve and I started to feel hopeful. My friend Adele told me one day while we were walking that she thought I was going to beat this, and I started to believe it too. I mean, she’s a nurse, so she should know.
That hope felt dangerous to me though. It wasn’t easy getting to the place of peace and acceptance. It required a lot of struggle and a whole lot of tears and letting go, but I was also feeling peaceful and at rest. My mantra, thanks to Denise on season 40 of Survivor, had been ‘endure or let go', because either one is a viable option. The endure or let go part was easy, it was the acceptance of either one being an equally viable option that was hard. We spend so much time fighting and grasping for the more appealing choice, in this case life, that we don’t even want to consider the other. At least that’s where the battle was for me. Getting to the place of acceptance, of seeing both life and death as viable and equal options was hard. It’s still a daily battle, but one that I've found necessary for me. I don't think you can find peace without acceptance of what is first. I wanted to have ‘Endure’ and ‘Let Go’ tattooed on each of my forearms so I could remember to hold loosely to both.
In addition to everything else going on in my life, I found out sometime in the late spring of 2021 that I had breast cancer as well… sigh. The colon cancer hadn’t spread, which was good news, but my right breast was full of tumours - they stopped counting at ten. More discussions with my Doctor and Surgeon followed, and the decision was made that I would be put on an estrogen blocker, which meant that I had to take one more tiny pill every day. It also means terrible hot flashes at the most inopportune times and very achy bones, but I guess I’ll endure.
We figured that 2021 would be my last summer, so we bought a trailer and hit the road. We camped for a few weeks close to home and then left for a six-week adventure. We had all kinds of plans for what we were going to do and things to see. We had a great time travelling around BC and Alberta, but realised after a few weeks how tired we were and that what we really needed was rest, so our manic travelling from one sight to another slowed down. We found campgrounds where we could stay for longer periods of time and just sat. We still had lots of fun, but also lots of sleep and rest.
After about a month on the road, I started to feel a lot of pain in my left hip. I could hardly breathe at times it was so painful, and I assumed that it was the beginning of the end, that the cancer had spread and was starting to take over. I hadn’t brought any of my prescribed pain meds with me, because I hadn’t needed them in over a year and hadn’t even thought about it, so we cut our trip short and raced home.
I made a call to my Doctor and a PET scan was scheduled for a few days later. Good news! Turns out the colon cancer had shrunk and the breast cancer was all but gone. I don’t know what caused the pain in my hip. The only two possibilities I can think of is I tweaked it getting in and out of my kayak, because sometimes it’s not very graceful, or I had just spent too much time sitting on my ass.
Everyone was celebrating the good news except me. The truth is, I wasn’t sure I wanted to live, but no one wants to hear that. I have a lot of things that I have to contend with every day, and the thought of having to do that for thirty or forty more years is a lot. It felt torturous that everyone around me was moving on and seemed to expect me to do the same. People would come up to me and congratulate me on the good news, but it wasn’t good news to me. Everyone was acting like it was all over. “What are you going to do now?” and “When are you going back to work?” were questions I was hearing all the time, and I just wanted to scream.
Then I got sick with another bowel obstruction and spent five days in the hospital throwing up, wishing for death to come and take me. I went into hospital on a Saturday afternoon, and by Tuesday morning I was asking Glenn to contact MAID (medical assistance in dying). I was done. If this is what my life is going to be then I want out. This is total bullshit.
By that afternoon, though, I started to feel a tiny bit better. I realised that the water and ice chips that I had were staying down a bit longer, and I started to watch the clock and time how long I could hold it down before it came back up again. It’s not all that helpful, when you’re feeling nauseous, to concentrate more on it, but what else is there to do when you’re sitting in the emergency room for days on end?
Once I was feeling a bit better I started to get mad and decided that there was no way I was going out like that if I could help it. I had imagined my death to be a peaceful event surrounded by family and friends, all seen through a gauzy, dreamy filter, not in the hallway of the ER throwing up in a cardboard bucket and wearing 3-day old underwear.
A quick side-note here: If you ever find out you have cancer, make sure you have at least one friend who will drop everything in the middle of their day to go to your house and dig through your drawers so you can have clean undies in hospital.
Then I started to laugh. I’m sure the fact that I hadn’t slept in days and was being pumped full of all kinds of medication had a lot to do with it, but I started to laugh at all my scars and at my cancer. I imagined that I was on a wilderness safari and was navigating my abdomen like it was new, uncharted territory. “Crikey! Would you look at that scar running through the terrain, around this gaping sink hole (my belly button) like half a traffic circle. I wonder what kind of natural disaster caused that mess?“(Yes, I was channeling the Crocodile Hunter). I started to laugh at the stupidity of it all, and it wasn’t long after that that I decided I may want to give living another shot.
I had another scan not long after and the the cancer had shrunk again and the tutors in my right breast were all but gone. No new set of tits for me I guess. More rejoicing from everyone else but it took a while longer for me to get there. One day I came to the realisation that it’s dumb not to accept the good news and just be happy. It’s what I’ve been fighting for for three plus years. Am I really not going to accept it? Yeah, hold loosely to it, but you've got two hands, so just hold both possibilities loosely.
That has become my life now, every day. I have accepted, for the most part, that I am probably going to die of cancer. But there’s a probably in that sentence now, where there wasn’t one before. I’m holding hope in the other hand, and it’s a constant juggling of both. Some days I feel overwhelmed by positivity and hope, and those are great days. Sometimes I feel sad and anxious about my future, and sometimes I feel totally at peace and am able to say ‘whatever’, and feel like I truly mean it. Some days I wonder “What’s the point?” But I feel safer in allowing myself to feel all of those things now, because I know that I can get back to centre, to the place of balance in my life.
The one thing I feel every day now though is gratitude. I'm so thankful for this wild, crazy life of mine. Yesterday was Glenn and my 34th anniversary and as we reflected on the last 34 years we laughed and cried at the beauty of it all. We are nowhere near where we thought we'd be by this point, 34 years ago when we first started out, but it's so much better than we could have ever imagined. Yes, there's been a few course corrections along the way that were really painful, but what can seem like a tangled mess from close up makes a lot more sense when you step back and take a look. Everything, good and bad, ups and downs, bitter and sweet, love and loss, have all come together to make a beautiful picture. I just needed to put in the time and work to be able to see it. And I'm so grateful.