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May 12, 2024
Dear Friends,
Thank you so very much for your patience, concern, and loving expressions of support over the last 8 months. I deeply appreciate your patience, concern, and love. So do Dee and the girls, and Dee is writing this update, with my mild , awkward okay.
You are part of a treasured circle of close friends. Local friends, folks with whom I am so fortunate to regularly make music, flyfish, camp, golf, drink beer, and travel with in pursuit of these shared, keen, interests.
And equally valued and shaping my 61 years are dear people befriended many moons ago in Norwalk, Middlebury, Yale, San Francisco, Oakland, Maine, Bend, and beyond. Friendships active and thriving despite our living on opposite coasts.
Whether near or far, I wanted to offer you info on my condition and plans. I have a very rare and hard to treat cancer called Adenoid Cystic Carcinoma. Originated, likely years ago, in the ethmoid sinus behind right eye. There’s no risk or lifestyle factors, nor screening. If one’s googles ACC, it’s a rare “orphan cancer”, “cold” slow, often symptom-less cancer, until…it’s not. It spreads swiftly and uniquely, on nerve pathways, then to bone, and very often to lung. Late August ‘23 I was with close buddies on our Alaskan, very off-the-grid fly fishing/rafting trip. Mid-way, I noticed a vision decrease (cataract, I reassured myself). Upon return home: our optometrist examined right eye and directed me asap to emergency department. MRI, CT’s, many consults that night, then urgent referral for outpatient endoscopic biopsies, my only “surgery”, the next week. I got the news in a Friday afternoon phone call from the ENT surgeon, Sept 8. 45 seconds. Alone. Inoperable. “Probably SNUC” (?). Dee returned from grocery store, ripped ENT surgeon a new one, got a proper oncology referral, and started calls. By 5 pm-I was at band practice on our deck. Next steps kind oncology clinicians, more imaging, central line power-port in my chest for labs and chemos. Next evening I caught a few steelhead on the Deschutes with desr, fully-sighted friends. Kept up with band practices!
My lack of response to chemos indicated a mis-diagnosis-not uncommon with ACC. With Dee’s advocacy (MS Oncology; hospice; cancer RN navigator 33 years) and the unflagging support of two dear physician friends, we got a more expert exam of biopsies at two renowned cancer centers. Quick end to very toxic and ineffective chemo. No role for surgery or gamma knife. No time to get care at either. All symptom management now by an amazing oncology Palliative Care Nurse Practitioner-the meds were, and are, a game changer.
Late fall, started daily radiation treatment to “sterilize” tumor and its borders. Too late to return vision, it helped bone pain, and! per MRI’s: tumor responded very well to 35 daily radiation treatments, ending early ‘24.
Kept up practice, some gigs, and recording with our band, Catch and Release.
This early winter and spring, I’ve survived Oregon’s cold rain and uncommon snow and ice, enjoyed home visits by good friends, as well as escaped to warmer climes on wonderful trips with Dee Cassidy, Annabel and Lola, and joined great cleat and creel friends in San Diego, Belize, and the gulf coast of Florida.
Sadly, last month I developed some new but familiar symptoms. MRI’s and CT scans show progression of that old right side tumor and extension to the left side, accounting for big decrease in “good” left eye vision, uptick in pain, and nerve stuff affecting left cheek/mouth numbness. I will soon complete a 10th, palliative radiation treatment- this augmented by a course of oral immunotherapy for a possible genetic alteration/target, with a goal of stalling my left vision decrease for as long as possible. Radiotherapy isn’t an option for the (now quiet( ACC in my lungs. There’s no clinical trials for this rare beast, but Dee observes that my cancer tissue germ line from biopsied is quite coveted for research. Medication tweaks along the way have been very effective in managing pain. Fatigue from immunotherapy and radiation notably slow one down for a bit- yet- I’m overall happy, busy, and semi-productive. Recording a rock opera play about segregationist Alabama governor George Wallace. Got my first fiction novella, Belgian Flats, to press, turned 61. Enjoying pizza, carefully sipping Peet’s coffee, a pint of beer, noshing on wonderfully crafted birthday cakes. I am astounded and we are fortified by the delicious bounty delivered by a meal train by kind local friends and neighbors. I’m golfing a bit (a cart or a bucket of balls), Walking carefully, napping (me? And a lot!) with Dee, Annabel, and Lola. Cassidy graduated from St Johns University (Queens) BS in ‘22, and now out from Brooklyn for the summer, is very loving and helps hugely with cleaning, meals, bills and paperwork. Annabel is ever-attentive, kind, musical, funny, gentle and harmony-insuring. Both Daughters are incredibly sensitive and nurturing of both myself, and Dee. Our papers are in order, houses paid off.
My first fiction book-Belgian Flats- is to be published in next few months. I am semi adjusting to little reading of my beloved books or magazines, and am learning to enjoy the audio New Yorker and whatever podcast is playe. NPR is always a friend.
So, that's a huge nutshell of my status.
Although I may not be able to easily respond to every email or text in my usual manner, or pick up my phone, I truly do enjoy talking and catching up. My speech is a tiny bit wonky, I worry, and I may be a bit knackered the next month or so-but please, do keep in touch. Dee’s mantras are: Rest is Restorative, and friends are Best Medicine. Apparently, Dee got a big iPad Pro for Outlook, adaptive bells and whistles, enlarged font etc. So- let’s zoom or whatever. Shoot me some dates and times, Regale me with your Detroit style pizza reviews, witty repartee, memes and links, podcast or audiobook recommendations. Your Talladega Nights, Grateful Dead, Lou Reed,Bob Dylan, American Fiction, flyfishing or any other references. I’ll reach out as I can. Promise.
Please know I deeply appreciate every expression of concern, support, and love.
(((Hugs)))
Chris