I've been suffering a fair amount of cognitive dissonance about my state of health. At one extreme, my deepest, darkest fears come from the knowledge that one of my cancers is of a type that can spread to the brain. This is one reason why apparently healthy cancer patients can suddenly become very ill and die with little warning. Such fears are only fueled when the hot and humid weather triggers a migraine.
At the other extreme, newer treatments such as immunotherapy (which I’m on) can produce lasting remissions that would have been considered miraculous not long ago. It’s not unrealistic to hope that the cancer could disappear from my scans and stay that way for years, perhaps decades.
I been discussing these thoughts with the nurse practitioner at my oncology appointments. We seem to be in agreement that the best strategy is to include a brain MRI as part of my routine scans, and otherwise hope for the long lasting remission. My worst fears aren’t to be ignored entirely, but we take the precautions we can and then move one. It truly is preparing for the worst while hoping for the best.
My ability to do things other than sit on the couch is the other source of cognitive dissonance. This is where the oil change come in. One of the odder parts of the cancer experience for me is having a “can do” attitude while saying “can’t do” to the people who administer my long term disability policy.
Let’s look at a concrete example. Last week my “can do” attitude led me to perform a long overdue oil change on my Mustang. This is a car I custom ordered from Ford back in 1997, and other than the very first oil change I've done every single one for 144k miles and 23 years. A part of me would die if this car went to Jiffy Lube.
This particular oil change actually started back in March, when I bought several bottles of oil and filters for the various cars in the family fleet. I managed to complete a couple of those oil changes during the earlier chemo cycles before the accumulating side effects and hot weather put me on full time couch duty.
It took until a cool morning in August before I felt fit enough to attempt the last one. It also took a strategy of dividing the job down into teeny tiny tasks that I could complete with breaks in between. Pull the drain plug and rest while the oil drained. Change the filter and rest. Refill with new oil and rest. Have lunch before starting the engine and checking for leaks. What normally would take me about 30 minutes stretched out to about 4 hours. It was my one and only major accomplishment for the day.
If I was a professional auto mechanic I’d be fired. The expectation would be for multiple oil changes in an hour, for multiple hours in a day. And this is why I’m on disability leave. It’s not that I can’t do anything, but that I am very far away from being able to meet the expectations for quality and quantity of work produced by a principal software engineer.
This was a topic of another conversation with the nurse practitioner. She strongly warned me against expecting to be able to do things as fast or for as long as I used to. I suggested that with some significant improvement in my energy levels, I’d like to get to the point where what I normally would accomplish in a weekend might be done over the course of a 7 day week, and she agreed that sounded realistic.
This is uncharted territory for me. I’ve worked in software for three decades, and I’m used to doing everything with some form of schedule and deadlines to be met. Somehow, when I was on disability leave in 2019 I managed to set a personal deadline of July for returning to work, and met that. I set goals of running a 30 minute 5K and completing a half marathon and met those. It was an odd and wonderful time in my life where even aggressive goals seemed easy to reach.
Of course at the time I was only battling one incurable cancer, and if the treatments I was on (and still am on) failed there were other treatments available to continue the fight. With my latest diagnosis I’m now fighting two incurable cancers with ongoing treatments for both. If the neuroendocrine cancer comes back, there are no great options to continue the fight at this time. To make things absurd, I’m also doing this during a pandemic.
I tried repeating the magic of 2019. Back in May I proclaimed in this blog that my stent would be removed in June, that I wouldn’t need radiation, and that I could start ramping up my “running” distance and pace. I failed on all three counts, and now remember fondly how healthy and fit I was in May after five cycles of chemo.
It’s led me to the point where I’m ditching specific goals and schedules and truly learning to live one day at a time. My focus is almost entirely on regaining my health and fitness. How much I will regain and how long that will take is entirely unknown and I’m learning not to care. Or more specifically, learning not to be disappointed when it takes longer than expected to get back less fitness than I was hoping for.
What really matters is that I’m still in the game of life, that all those harsh treatments appear to be working, and I’m seeing hints of improvements in my health. Today I’m taking advantage of the cooler weather to bring our trash and a bottle of used motor oil to the town dump. Cutting and splitting some firewood is on the to-do list for the fall but I’m not sure exactly when that will happen or how much wood I’ll produce, and it really doesn’t matter.
One final thought: I could focus on the dramatic changes and losses that have happened in 2020, and the virtual Sword of Damocles hanging over my head, and be very sad. Or, I could focus on the moment, and enjoy being in my fifties and experiencing an increase in my health and fitness while largely getting a break from deadlines and commitments. In the moments when I’m able to choose the latter, I feel much like a kid on summer break from school.
