From Rockstar to Wreck

Ha! Well not exactly, but I do feel like I’ve regressed physically since the October concerts due to what I now know is bone pain from new lesions. The last week has been particularly hard with the pain limiting my typical hikes (for real!) and driving more naps. I’ve had days where I’m literally hobbling along. Bone pain is a steady ache from the inside out. The lesions are in my lower neck and sacrum (new) and my mid spine. I don’t feel the neck at all whereas the others feel bruised. I was hungry for a plan after getting the crappy news about new lesions and palbo no longer working. I don’t like having the cancer with free reign in my body. I will have a full on UCSF scan party on Monday with a brain Mri, ct scan, and full body bone scan. With the contrast injections that will suck up a whole day, but will allow me to start the trial on Dec 1st. 2/3 patients get the biomarin trial drug, else I’m assigned to standard chemo care decided by Rugo. So please think good thoughts for me being on the good side of the odds. If that happens, I will be on a pill 4x daily with fatigue and low blood count as key side effects, and get ct scans every 6 weeks, mri every 12 to track the progress. There will be blood draws every 2 weeks. A trial is more labor intensive but also brings more information. What I’ve made peace with in the last 2 weeks is the reality that this is going to be a real roller coaster. Or perhaps since I’m not a big roller coaster fan, more like a long distance hike at the turn of the season. There will be a time when the pain is managed, a drug works, and everything good is possible. Like cresting the peak and seeing a magical view and a gentle trail down. For now I’m on the ascent in sideways sleet with several false peaks!
The hiker in me has long learned to walk through the pain, but I’ve learned recently that no one is giving me a prize for enduring hell. And if anything pain inhibits healing, brings out the real grump in me, and is not heroic. Creighton and I met with game changing Doctor Rabow who heads up symptoms Mgmt and works with palliative care. He is deeply empathetic and has such perspective on pain and cancer. He was like a warm enveloping hug for us. He put me back on the long acting OxyContin (interestingly better for me than ibuprofen due to natural receptors in the body) and wants me to use the short acting for breakthrough pain until I get back to a better place. I know it sounds crazy, but it really goes straight to the pain and doesn’t make me loopy. (No more than I usually am 😊). He was honest and direct. I had lost my voice talking and singing at my boss’s retirement party (a fabulous celebration of an incredible career for a remarkable leader) so when I tried to talk while crying it came out in sad squeaks. Sad-funny in hindsight. Bebe and Will are so young, and I so need and want to be here for them. The hard part is balancing the utmost optimism with an acceptance of uncertainty on life span. Dr Rabow said “hope for the best, prepare for the worst. When you find you are avoiding a feeling, think about what you could do to prepare.” I suppose that is a strange gift of cancer. No one knows when they’re going to die. For those in Paris or those who suffer a fatal stroke, heart attack, accident, there is no chance to say goodbye. But cancer gives you a shot to ensure nothing is left unsaid. And of course the best offset to the uncertainty is to live with intention, and let go of the superfluous. Try not to stress about the many things you can’t control. Say yes. Say thank you. Be in awe.
I’m also finding that polite calm assertiveness is the only way to navigate our healthcare system. Yesterday an admin from UCSF called to say they were no longer doing bone scans on Mondays. Which would mean the trial timing would be completely thrown off. Are you kidding me? So I pulled the 2010 line out “that is not going to work for me. We need a solution.” Or with the young guy organizing trial logistics I like to tell him “I know you can fix this”. It is scary how easily and carelessly the schedule can be thrown off if you don’t fuss. But I don’t want one more day of this cancer eating my bone, so I got fussy. And now we are back on track.
I love Thanksgiving. I love turkey and stuffing and mashed potatoes and cranberry sauce and pumpkin pie. A lot. I have many happy memories of expat thanksgivings in London growing up. Everyone would pitch in. Sometimes a turkey or pie landed on the floor. Deep Americana dishes like “fluff”, a glorious to me/revolting to some concoction of cranberries, marshmallow wonderfulness, graced the buffet. The house was filled with happy noise and potluck cooking. We dressed to the nines around a beautiful table. We missed our extended families, but said thanks for old and new friends.
This is the first thanksgiving I’m not able to take a big hike. But I have a feeling I will still have room for plenty of mashers. My sister in law is kindly hosting, and the kids are in heaven with their cousins. I will say thanks for loving family, wonderful friends, the hope of innovative medicine, the luxury of time to heal and read and rest, and the gift of a mostly very lucky lovely life. Wishing you all a very Happy Thanksgiving, and I will post you when I’m a ways into the new trial.

And from a healthier week…….
Micaela Heekin, organized a flawless trip to her parents’ home in Santa Fe. It has long been on my bucket list, and I wasn’t disappointed. It is quirky, unique, and beautiful. Their house is a classic adobe with low ceilings, secret courtyards, inviting fireplaces, magnificent and varied art, and creates the illusion of being wonderfull removed despite being a right by town.
We arrived in time to walk to The Compound for dinner. Fires blazed, and we sat in a cozy corner. A prickly pear (did you know it has pink juice?!) Margarita was the perfect tasty welcome, followed by tender roasted squash, and the best polenta I’ve ever eaten. Polenta that would make a polenta hater drool. It was luscious, and topped by sauteed mushrooms. Again, even if you hated all the components typically you would love this dish. The air was bracing and the sky starlit on the walk home. We are both happy reading nerds, and that was how we wrapped up each evening.
We woke to a sunny morning and set out for the Audubon center for a short hike. I was surprised to find lush pines/pinons in a high desert terrain vs the dry stark desert I’d expected. The pinon smell in the crisp fall air and birdsong made for a lovely hike. We also found that a Nature Conservancy property bordered Audubon and wandered along a riverbed through the brilliant yellow aspens.
Your credit card is not safe at Nathalie’s if you have any penchant whatsoever for western goods. Several rooms are packed with exquisite handmade cowboy boots, hats, vintage turquoise jewelry, buckles, and home goods. I had to remind myself that I do not actually live in cowboy land and could not justify a most fabulous hat, but of course could make room for earrings. Big but delicate butterflies and dangly flowers. Naughty but nice! We explored Back at the Ranch just for fun for its museum quality boots. Amazing! And then we literally caught the changing of the season. The temperature dropped, the rain began. We found happy refuge in Terracotta (good menu, ok food) before heading into the Georgia O’Keeffe museum. I love her work, although it was a bit daunting to walk into a straight shot of the female anatomy, so clearly not a flower. We both felt she was ahead of her time. Hard to believe her work began almost 100 years ago. Bold, colorful, other wordly. And while I joke about the flower, I love most of her suggestive work. My back stated its anger and I was happy to spend the rest of the day on the couch deep into The Rosie Effect which has me cackling out loud.
Dinner at Joseph brought another low key, warm hug of a place with beautiful art. We had to have the duck fat fries (worth it- crisp, salty, ridiculous) which I followed with a delicious veggie enchilada. It was small stacked tortillas jammed with roasted veggies, jasmine rice, and an indian style spinach puree that somehow brilliantly pulled it all together. So yummy, so full. Another shocking no dessert evening due to that!
Wednesday’s hike was shot due to pouring rain. But the rain ended up setting the scene for the magnificent Ten Thousand Waves spa. Who knew that Southwest flew to Japan? It is incredible and feels so authentic, a lovely Japanese “village” set against the pines at the base of the mountains. We began in the large soaking pool with mist rising before heading into a Yasiragi head/neck and then a foot treatment. The woman told me it was designed purely to “bring your nervous system to a state of deep relaxation”. Take that cancer! She was right. It was absurd. She rubbed camelia oil into my scalp. Thunder shook the building while the rain poured down. 70 mins later I was mush, and Micaela and I returned to the soaking pool. By sheer luck we again had this lovely large pool to ourselves, and as we eased into the steaming water the rain turned to big wet snowflakes. I leaned back and let they hit my eyelids, covered my head, powdered the pines, and melted into mist on the water. A glorious moment of natural beauty.
When it turned back to rain, we hit the sauna (again, not a soul) and then back to the pool. A meditation room by the koi pond was filled with floor pillows and earphones. We put them on and were whisked away to zen land for about 20 minutes. And for those few hours I got to forget about my back. The funniest thing was the heated Toto toilet. Heated, self cleaning, water spurting, Rolls Royce of toilets. Too funny. Very clean! We decided to stay for lunch at the spa’s Izakami and enjoyed a window table watching the mountains come and go completely in the mist. Magical. We had warm edamame, soup, vegetable laden ramen noodles in bone broth, and a picture perfect bento box (with some strange mushroom pickles). Sated.
We snuck in one museum quality gallery with Taos school artists, and I was blown away by a Thomas Moran and the woodblock work of Gustav Baumann. I loved the sculptures on Canyon– a mountain lion, a horse, an eagle, elk offset by red adobe, turquoise doors, and bright red dried chiles.
We settled happily into the living room with the rain pounding, a roaring fire, and one of the funniest movies I’ve ever seen. Death at a Funeral. Not sure how I missed this one given my love of British humor. Belly laughter. I will be watching this on repeat at home.
In case we hadn’t already had enough food, we added in the fabulous, if overpriced, Geronimo. Stunning art graces the walls. We laughed as we rejected the both people on one side set up, and for awhile Micaela was the only diner on that side of the tables. I had a perfectly cooked elk tenderloin with (of course) mashed potatoes, while Micaela tried local steak, followed by (why moderate) lemon curd crepes and a flourless chocolate cake. Micaela really appreciated the fact that I put the leftover meat and chocolate cake in the same bag for the flight home today….
While we were sad that the weather derailed our hike, we were able to squeeze in a beautiful town walk this morning. Blue sky, rain drenched trees, yellow aspens, and snow brushed mountains in the distance.
I have found a wonderful fellow traveller, and am very grateful that the kids and Creighton are letting me hit some of the bucket list. My back bums me out a lot when it hurts all day, but it’s not stopping me from having some great new adventures.

Sent from my iPhoneimage

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