Nudged from a pier, you are now on your own

Today was A.’s final day of proton radiation. She will undergo an MRI in a couple of weeks to assess the tumor’s status and will likely begin another regimen of chemotherapy following that. Last week she completed the first cycle of chemo, which consisted of six weeks of vincristine. Her last dose of vincristine was canceled due to side effects, however. Her oncologist was pleased that she got five out of six doses, so that’s a win for her.

Today is bittersweet. A. can receive no further radiation, and her oncologist characterized that line of treatment as the best weapon against this aggressive tumor. She now has expended her last bullet and must now rely on chemotherapy, which can certainly slow the tumor’s growth, but that therapy is less focused and carries with it myriad side effects that can limit its use. How will the tumor behave now that the precision protons are gone? How many “good days” do we have left?

As I write this A. and I are joyriding a ferry to Bremerton. I’m typing and she’s knitting. Once we arrive, we’ll reboard the craft and head back to Seattle. I can remember our first ferry ride after we arrived here in 2014. It was a special trip for both of us; neither of us had ever been on a ferry, and riding one was one of our first Seattle experiences. We rode to Bainbridge Island. Shopped a little. Grabbed a bite to eat. It was a nice day. Today’s voyage is a celebration of sorts. A welcomed break from the norm now that her five-days-a-week treatment is finished.

I’ve spent the last ten years of my life with A. When you spend that amount of time with someone, they color nearly every facet of your life in ways you could never imagine. For the rest of my days ferries -- just the idea of a ferry -- will be colored by my days with A. I will remember this trip. I’ll remember our first ride. At some point, once I return back to work, a patient is sure to mention something about a ferry, and A. will then be there, inside my mind, a memory from a different life.

Return

When I started this space over two years ago I had no idea what the near future would hold for me and my wife A. Yes none of us truly know what the future holds, but one can never prepare themself for the sudden shock of a cancer diagnosis, especially when it’s a brain malignancy.

On December 10, 2021, my partner for ten years, A., and a day before her 36th birthday, was diagnosed with an extremely rare and aggressive brain cancer. She likely has a year, at most, until it overcomes her. She’s lost vision in her left eye and the right eye is impaired but not, as yet, to a significant degree. She’s currently undergoing proton radiation and chemotherapy. The primary limiting factor for her at this time is fatigue, which is expected given her therapies. She’s relatively pain free and still independent with all activity.

Throughout our many years together A. has rarely allowed herself to express any kind of vulnerability. Lately, however, this curtain has been wearing thin and starting to tear.

Yesterday in the late afternoon and in our living room, we hugged. Standing there, the two of us, she started to cry. “Thank you for the happiest decade of my life... I’m not sure how much time we have left.”

…

A. has been my partner for ten years. She’s my confidante. My wife. The love of my life. And my best friend. She’s practically my everything (given my social circle is nearly nonexistent). And I will be utterly lost without her.

The size of my pain is too immense to calculate. To witness your spouse slowly fade from life… to see joy vanish… it takes your breath away. At the end of day, when I’m wide awake in bed and as she sleeps, my heart aches. Literally. Your brain struggles to understand, which initiates a cardiac response from the dump of stress hormones, and your heart struggles to keep up. The pounding. With arms extended you see your hands bump bump bump bump with each beat. Heart strain, when prolonged, can lead to acute coronary syndrome, atrial fibrillation, and heart failure.

…

I actually started this space over two years ago but didn’t publish it (and didn’t contribute to it for the last year and a half) until yesterday. I feel like publishing it will incentivize me to write, as well as rediscover my camera (my photographic pursuits have decreased significantly since the pandemic began). I’m hopeful these artistic expressions will prove therapeutic once again.

For those who dare, my previous blog is xxxxxxxxxxx. I wrote it from 2005-2011 and, from what I remember of it, was frequently a dark and, at times, disturbing space. I was dealing with some real mental health issues at the time. And at some point over the last year? two years? those issues, or maybe the same forces that drove those earlier issues, resurfaced. For the first time in my life I began seeing a mental health professional in October 2021, and I regret not seeing one sooner.

Anyway, I guess what I’m trying to articulate is that A.’s diagnosis and all its ramifications have tested my mental health like nothing previous. My old blog was an outlet, a creative outlet that allowed me to cope, or at least attempt to cope, with my sister’s addictions, mom’s alcoholism, and my own faulty wiring (and so much more!). Many of those dark urges are back and pose a much greater threat now then they did then. So I’m back on the interwebs with a new blog. We’ll see how it goes.

mc