My Cancer Roller Coaster

My old chum Rachel from University of Toronto thoughtfully asked me the other day about what words I like to use to describe my “cancer situation”. ‘Journey’? ‘Ordeal’? ‘Battle’? I have spent a good while thinking about her question, and I decided that I’d share those thoughts here on my Bipolar Blog, because they reflect my mental attitudes.

Meanwhile, I have big scary news to share at the end.

Rachel herself had used ‘battle’ in her “how are you doing?” email, but then checked whether I myself would accept that word. Well, it certainly didn’t cause any offense. It’s not even entirely wrong. But ‘battle’ seems both too short term/temporary and too negative. ‘Ordeal’ is even worse on the negativity front. As I’ve noted here and on Facebook, there have been lots of positives to my cancer treatment: for instance, I’ve experienced the kindness and support from friends, family, medical professionals, and even total strangers. I feel so grateful for that. And my depression and anxiety have actually been better during my treatment.

I don’t much like ‘your cancer journey’ for precisely the opposite reason. At least now, when chemo and radiation are still fresh in my mind, ‘journey’ seems too anodyne, given the suffering that’s involved in dealing with cancer. Granted, some journeys do have awful moments: you’re on a lovely trip through Eastern Europe; your wallet and phone get stolen; and then your hotel goes bankrupt; and then… But it feels too rough a ride to characterize August through March as a mere “journey”. What’s more, this “trip” isn’t going to end well.

I think the phrase I like best is ‘roller coaster ride’. A quick recap should make clear why. At the very start, we didn’t even know whether the “mass” (the doctor’s euphemism) was malignant. Then the biopsy and CT scan results came back, and we learned that it was indeed potentially very dangerous, and might have already spread to my liver and lymph nodes. That was a low point on the ride. The PET scan and MRI, however, ruled out metastasis beyond the esophagus. One of the medical team, at that point, described what I had as “a very curable cancer”; this was clearly a high point. For most of the fall and winter my mood was positive, my Bipolar symptoms were essentially in remission, and I categorized my quality of life as “good”. My friend Jay, during a week-long visit to London, even said: “My friend Rob is back!”

Well, I never quite got back to that “mountain” on the coaster. Radiation and chemotherapy got very tough, especially the fatigue. I didn’t know one could be that tired and not be on one’s death bed. But that wasn’t even the lowest point on the ride, emotionally or physically. That came when a follow up CT scan showed, mid-winter, that the tumour was encasing my aorta and might as a result be inoperable. Then, over the last few weeks, the roller coaster continued its downward trajectory. My free-floating fear returned. My suicidal ideations became frequent again. Why? I’m not sure. I suspect that I became just so, so tired of being so, so tired. I have also been experiencing severe pain in my sternum – from the cumulative effect of 28 radiation treatments – to the point that it hurt too much to even drink liquids. What’s more, when the daily treatments were over, back in mid-February, my days became unstructured, I had less social contact, etc. In any case, my mood definitely fell and my Bipolar symptoms were able to get a solid grip.

That brings me to the present, and the lowest point on the roller coaster ride so far. Last week, I had a whole series of tests, to see how effective the second round of chemo + radiation had been. The news isn’t good. Yes, there was a clinically significant response: the tumour got smaller, and the biomarkers in my bloodstream that the cancer gives off (specifically, the protein C9-19) have gotten lower. However, the most desired effect of treatment did not appear. My aorta remains intertwined with the tumour, such that operating is too dangerous. And it isn’t just dangerous in putting my life at risk. That’s something I’d be up for: better a mere 50% chance of survival + actual cure over a 100% chance of slow decay and eventual death. Because of the many veins that come out of the aorta and connect immediately to the spine, however, there would be a high risk of my awakening paralyzed, and remaining that way for the rest of my days. That’s not something I’m willing to risk. In short, though it’s unclear what the timeline may be, I’m now very likely to die from this cancer. Trying to cure it is, for now, basically “off the table”. Maybe this constitutes a roller coaster crash, not just a deep dip!

I’ll end with the mental effects of this news. My psychiatrist Dr. D has said that my highest priority should be letting go of control. I am not – and, in particular, my executive function and intellect are not – in the driver’s seat nowadays. I need to radically accept that. The thing I am finding hardest, however, is not being able to plan at all. I don’t know what this unhappy medical update means for work, for travel… for anything. I think I’d actually suffer less if my medical team had predicted, “You have 18 months left to live. The first 12 you’ll be able to work and fish and… The final six, you’ll be stuck at home, on heavy doses of pain killer”. The uncertainty feels worse than even that dire scenario. Nonetheless, I’ll try to let life, and its joys, just happen.