Cancer Journey Update: It’s the End of the World as We Know It – and I Feel Fine
A few years ago I started writing the book that became Field Guide to the End of the World – poems about coming to grips not just with death, but the end of all the things that we’ve become accustomed to – civilization, running water, grocery stores, telephone systems, mail.
Back in February of this year, I was diagnosed (surprise!) after finding 14 tumors in my liver – with metastatic cancer. This is NOT the kind of thing you want as a surprise diagnosis. I was told that I probably had six months to live. I made the decision to put off a dangerous and possibly life-threatening liver biopsy and go to AWP instead. When I got back, I took myself to a bunch of specialists who thought maybe I didn’t have cancer after all, just a bunch of benign tumors that might rupture, or turn into cancer. Then I was found to have a super high tumor marker for a rare slow-moving cancer called carcinoid (or neuroendocrine tumors) which also matched a lot of my symptoms, and I got a diagnosis for that. It was official, on all my charts and medical records and everything. My book came out and I immediately caught pneumonia. This meant I had to postpone the chemo I was supposed to start in September.
While I was too sick to get chemo, I visited some endocrinologists (multiple) encouraged me to be cautious and wait to get more tests and scans before I did. I started getting ‘cancer insurance’ offers in my mailbox. As I tried to trade in a six-month life expectancy for one that looked closer to a couple of years, I made some changes in my life. We bought a home. I adopted a kitten (almost always a good choice.) I said no to lots and lots of things that I was asked to do. I tried to reduce my stress levels, exercise, eat better, take medicines that doctors recommended for my symptom control, and try to enjoy life and avoid things that made life worse for me. I bought a piece of art that brightens my day every time I look at it. I reconnected with old friends, told people I loved them. Tried to make hard choices about how to spend my remaining time. I thought to myself “I probably don’t have time to write another book of poetry.” That last thing made me pretty sad. I spent a lot more time outdoors. I smelled every flower I could. I planted lavender in my new front yard, and when I did that, I didn’t know if I’d live to see it bloom next summer.
So now it’s winter, I’m still here, and besides the unexplained hives/stomach problems and the more banal flu sessions, I mostly feel…fine! And here’s my latest news…I just met with the head of a liver center to go over my latest MRI, a scan of my abdomen that indicated the tumors hadn’t grown, changed, or spread, which in cancer language is pretty positive news, with a “wait and watch” message from the liver specialist for now. It’s questionable now – though I have to wait for some more tumor marker tests to know for sure – if carcinoid syndrome is even my correct diagnosis. So it’s goodish news from my end of the world – I just wanted to let everyone who’s been on this journey with me know this – what I think of “as good as you get with 14 tumors in your liver” – update. Though I manage to walk a balance daily between skeptically pessimistic and cautiously optimistic, as I feel pretty battered in terms of my emotions and my overall perception of my health. Yeah, I mean, sure, in the last twenty years, I’d learned to manage – having been born with one kidney, having a primary immune deficiency, messed up joints, unexplained neural lesions (still under investigation) and a heritable bleeding disorder, among other weirdness – all of which put you on a precarious tightrope of “any little thing COULD kill you at any time” that I had pretty much lived with by ignoring and wearing one of those medical-jewelry bracelets – but the cancer thing this year has probably been the most eye-opening world-spinner I’ve encountered.
If it’s the end of your world, weird things take on more significance, and other things take on less. You feel less inclined to put up with bullshit of any kind, and more inclined to put things that satisfy your inner self – in my case, books, art, animals, nature, and inspiring people – on your priority list. You notice who loves you and who makes the effort, and who doesn’t. I also found to my surprise that I was not super unhappy or anxious in terms of my life – I mean, I didn’t really have much of a bucket list left, which means I’ve either really lost my ambition or I’ve accomplished the things that were important to me to accomplish.
And notice – I still post on Twitter, and Facebook, and on this blog. I still read the news, which FYI, has seemed to be a non-stop crapfest during the whole of 2016 – environmental, personal, political, you name it – and try to participate in the world, even as I might be teetering as if it were ending, at least for me. I still write poems, even if they may not ever make it into a book. What does the end of the world really mean? Who or what would you regret saying goodbye to, and who or what could you lose without any regret? What makes you laugh? What makes you feel like you connect to a larger purpose? For me, I’ve learned to say no, to admit more weakness and be more honest, to really enthusiastically enjoy the things that I can while I can. I’ve learned that even staring at the end, you can still capitalize on each moment of meaning, pleasure, love, poetry, sunshine, hummingbird wings. You can learn that the world’s spinning is so beautiful because at any moment it might stop.