Cancer Journey Update: It’s the End of the World as We Know It – and I Feel Fine
- At December 20, 2016
- By Jeannine Gailey
- In Blog
- 21
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.
Yvonne Higgins Leach
I love hearing this good news Jeannine. And I truly appreciate your message about what’s important. I am carrying that with me!
Jennifer Bullis
So many hearts, Jeannine. I’m thankful for your “goodish” news, and for your profound reflections here. In the darkness, you are a bright light.
Deborah K. Hammond
A million thanks for this, Jeannine. I am really glad to hear that your liver has some respit from those unwelcome guests who have been visiting. Goodness knows you and your body need a break! 2016 has, indeed, been the gift that keeps on giving. I’m awfully grateful that your welcome and amazing light spills out into this world. We who receive it are so fortunate. May you keep yourself at the top of the loving care list and call on the rest of us if we can help. Sending love and light. Deb
Jeannine Gailey
Thank you so much, Yvonne, Jennifer, and Deborah.
Ronny Allan
Great post. Thanks.
Jeannine Gailey
Thank you, Ronny, for all your inspirational blog posts!
Michael Meyerhofer
Wonderful post! I was just thinking about you–and most of all, the joy I’ve gotten from your books!
Ren Powell
I am so glad you have such good news so far. I am and have been grateful for the fact that you are sharing these life lessons. I hope your writing continues to go well!
Penny Harter
Oh, Jeannine, I’m so happy for you that your MRI news was good. Thank you for the words of inspiration in your post, which I needed this morning. You express so well what I mostly feel….and need to be reminded of when I don’t….celebrate each day, especially ‘each moment of meaning’ and the people in our lives we love and who love us.
Martha Moesker
We’re so happy for your guardedly optimistic good news! We pray every day for your health and happiness. It is a wonder and a delight to know the fine woman and poet that feisty little girl we love has become.
Lesley Wheeler
Best post-apocalypse post ever. I will raise a glass this weekend to your continued fineness!
Suzanne
Happy to be closer to you on this journey. Looking forward to seeing you in January. Indeed, illness and not knowing when dearh might wave its wand at us, which none of us really knows, makes for re-evaluating priorities. I’d say yours are terrific. xxoo
melanie
Considering everything, you really did get good-ish news (as you called it earlier), and you seem to have beyond-good-ish doctors who aren’t Henny Pennying all over the place. (I really have to use standard English…) Happy Solstice, and may all the things that keep you going surround you.
Remember this from the Incredible String Band song? I have it written in my purse planner, and it’s not a bad mantra.
May the long time sun
Shine upon you,
All love surround you,
And the pure light within you
Guide your way on.
Jeannine Gailey
Thank you so much for all your kind words, and for sharing in the crazy journey this year with me!
Donna Vorreyer
Glad for your goodish news – and grateful for you sharing your advice about how to approach life!
James Prier
Courage to look life in the eyes is the essence of poetry.
Jane Satterfield
Such lovely words of wisdom! Sending more healing vibes and now that grades are in, I can look forward to reading the new book!
Judith Skillman
Jeannine, I am so happy to hear about the results of your MRI. It’s good you have been conservative. With my chronic health issues I have felt in you a kindred spirit ever since we were Jack Straw fellows in 2013. Your courage is an inspiration and a blessing…
Anne Balfour
Jeannine, so glad to hear this news of your “fineness.” This post touched me, and I aim to keep your perspective with me during this season and beyond. Love you, old friend! (Not old age-wise, just the 25 years since we met…)
Laura Granger
Hi Jeannine,
I don’t know if you’ll remember me. We met in college. I married James Granger (my maiden name is Kronenberg). I began reading your blog about a year ago. It has been encouraging to hear how you handle all that’s been thrown at you this past year with grace, wisdom and a good sense of humor.
We’ve been journeying down a similar road, as our youngest son was diagnosed with stage 4 cancer last year (a day before his 15th birthday). I find myself also changing; appreciating all the gifts this life has to offer, both large and small, not putting up with any crap or annoyances, and being so thankful for each day we get with Luke.
Luke is still with us, fighting hard. We are hopeful that his next scans in February will show No Evidence of Disease (NED). But this is a deadly and aggressive form of cancer so our hope is also guarded.
I pray you will enjoy many more days on this earth and continue to bless others with your life and poetry! Thank you for sharing your journey with us on your blog. Merry Christmas!
Jeannine Gailey
Thank you all so much for your comments, your hope and encouragement!
Laura, thank you for sharing your story. I will think all the good light thoughts for your son.