Losing count

Update: July 9

The situation has changed, the biopsy came back negative, which was a surprise to me, and I imagine it will be a surprise to my surgeon as well. I have not discussed the results in detail with her just yet, but will soon.

This is good news, but I’m thinking about it in a measured way—ultimately the long term trajectory has not changed. I still have a perniciously recurrent (if slow growing) type of cancer that has no known cure. I will probably have another recurrence within the next year, and then we’ll pick back up discussions about clinical trials and other options for mitigation. Thankfully, it’s not an immediate concern, and I can focus my full attention on the kitchen :)

The timing is never good. At 30, a career was beginning; at 42, it’s in transition. Several years ago I built a timeline diagram to help me remember all the spaces filled by recurrence and surgery and once again, I’ve lost count.

I hear this question a lot: “How’s your health?” It’s a polite way of asking if I’m actively dealing with something cancer related. My friends who’ve been on the diagnosis/treatment/surveillance carousel are more direct: “what’s your status now? What did your last scans show—all clear?”

Pixelated rainbow-ized image of the tumor

I am a touch amused by the novel way this latest bit was identified. It wasn’t found with a scan or a scope, but rather was a bump I noticed, a dime-sized growth in the back of my highly altered throat¹. It took a few days or maybe a week before I mentioned it to Lindsay and then a few weeks more until I was ready to admit what I already knew. For a while, I wondered if it was a gland I hadn’t noticed before. Then it started to grow and I was quite sure we’d entered the realm of abnormal.

We saw Dr. Barber and chatted about kitchen remodels for a while. Then the conversation turned—in our experience, whenever it opens with “I’m sorry…” what follows is a discussion of options, decisions to make, more trips to Seattle. I am still fixated on finishing the kitchen work, no matter what, poor timing be damned.

The words “clinical trials” and “experimental” and “rare cancer initiative” came up. I thought: Inconvenient, expensive, untimely, but I understand why we want to explore treatments. We seem to be at an interval that’s accelerating—more frequent recurrences—coupled with unpredictability of location. I imagine we want to try and head off an outcome where the space this pesky glob inhabits proves too risky to extract. Mind you, that’s not the situation right now. Surgery would probably be outpatient and I’d likely come home and work on the house. But the broader implications remain the same; we don’t want to stay in this loop and if there is a solution, we should try and find it now.

Dr. Barber used an instrument that looked like a set of micro-tongs to clip two pieces of the tumor. A long matchstick with a bulb of silver nitrate slowed the bleeding as I held a piece of gauze, forcing my jaw open with my hand, index finger set along the inside of my cheek. We spoke some more as I tried to keep myself from drooling or choking on the bundle of cotton.

I’m not surprised by any of this, nor am I disappointed, or particularly concerned— but I am irritated, slightly. I want my full attention directed in other ways. I want to make progress without being interrupted. I want to make decisions and plans that are durable, to take risks and stretch myself in new ways. I sat with these feelings on the drive home, sipping a bubbly water that tasted more metallic than usual.

I am trying to imagine how a mid-career pivot to an analogous role works alongside an experimental treatment regimen, if one exists. The risk and suitability thresholds for traditional roles (like the one I have now) vs non-traditional are inverted.

Non-traditional (self-employed, contracting, etc): probably much higher suitability in terms of how I work, my need for broad flexibility, my suite of interests, but risky (primarily health insurance but also variability of income).

Traditional (FTE in mid-size/large org, public or private): honestly, I don’t know that I can (a) convince myself to do this again, (b) find one interested in hiring me and (c) get the flexibility I need, but an assurance of benefits would be handy.

Problem solving is a space where I excel and none of this is intractable (although my cancer might be). I’m reminded of some of the big risks I’ve taken, where many unknowns existed and I decided to confidently go forward. In particular: moving to Washington and buying the house. Both were financially risky and both turned out pretty well. It’s unlikely Linds and I would own a home if we’d waited until present day; back in 2016, I didn’t have much in savings, and I sunk every spare dollar into the buying the house. It was a great decision. I find myself wondering if I am on the precipice of another big, consequential moment like that one and worry that the whole cancer gambit is clouding my judgment, steering me towards a safer but less fulfilling outcome.

The timing could be better, but here we are again at the intersection of career and cancer. The biggest difference this time around is that I have a lot more experience. I can’t remember the number of recurrences without a diagram, but I’ve learned so much and will continue to.

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