TL;DR
I still have cancer.
I’m on a trial.
I feel pretty darn good right now, relatively speaking.
Here are some photos.
Order-of-the-Phoenix-Length Version
When we left off last September, I was taking Lonsurf and had just had a dose reduction. That dose reduction helped in that it reduced the number of times a day I was vomiting, and reduced the spontaneous gagging, somewhat. But I was still throwing up, still gagging, still horrendously nauseated and exhausted to the point that I just couldn’t function for large chunks of the day. I would go to bed for the night at 5pm. This would go on for roughly two weeks and then I’d have two weeks off.
During the two weeks off, I felt much, much better in my body. But my brain got foggier and foggier and eventually my running slowed to non-existent. I was so exhausted I gave the ducks to a local farm. Mentally, it was too much.
During this time depression set in. Not sadness. Not I-feel-sad-because-I-feel-tired-and-nauseated-and-can’t-function-and-have-terminal-cancer but proper depression. A mild version, but the true kind of which, “think positive” and “get some fresh air” are utterly useless suggestions. Please, never say that to someone with depression.
I had never experienced it before. It was like my serotonin or dopamine releasing systems had shut off. I could look at the blazing orange of a miles-high thunder cloud at sunset and feel nothing. I was blank and empty. Occasionally it would lift for a full minute or two, as obvious as if I were rising out of water into fresh air; I could breathe and feel warmth. And then it would draw me back down into cold numbness.
It followed an odd pattern: it would show up a couple of days after I stopped taking my Lonsurf, and would lift about one to two days before I started taking it again. So I wasn’t depressed while I was nauseated and throwing up. It was when my body was feeling better that the emptiness showed up.
Knowing that exercise is known to help, several times I dragged myself out to run. I can tell you from experience that four miles gives me about ten minutes of post-run depression-free reprieve.
I talked to my new oncologist about it (Shanthi left, which was devastating) while also lamenting the nausea and tiredness. She said the nausea and tiredness were only going to get worse and she offered me an antidepressant, the top two side-effects of which were nausea and tiredness. I laughed at her.
I brainstormed with Jenna (naturopathic oncologist). She was glad I hadn’t gone with the anti-depressant and suggested some supplements with a B vitamin cocktail, and some things that would promote healing in my intestinal tract as well as instructions to eat the widest variety of fruit and veg possible in order to promote a healthy balance of gut flora. We wondered if the depression was related to the Lonsurf. We knew from the watery diarrhea that it was seriously messing with my gut. We also know that the gut provides a massively high percentage of the body’s serotonin, possibly as high as 95%. Don’t quote me on that. And imbalances in gut flora can lead to mood imbalances. So, B vitamins, gut healing and veggies was the plan.
In the meantime, I would cry to Matt in the kitchen many mornings. He’d put his arms around me and just be there. And I would cry down the phone or over zoom to friends. Then, my friends, Pam and Rachel, suggested we book half an hour every day for a week with the sole purpose of them listening while I cried, accompanying me in my grief. We booked it. I think I used maybe 5 of the sessions.
I also began to meditate, building up to 30 minutes a day. Deep breath work, focused inward.
That did it. I cried and meditated myself out of depression. Pam and Rachel listened, reflected, heard and saw me. It was the accompaniment that was so potent, I think. After four months, I was free again, feeling sad when appropriate, but not depressed, and able to feel joy and lightness and beauty again.
At the beginning of the year I transferred my care up to Seattle Cancer Care Alliance/Fred Hutch full time. I didn’t like my new oncologists at my old haunt and I wanted a team who I felt saw me. The team at Fred Hutch met me with hugs, remembering me from my trial last year.
I was getting to the point where, mentally, I didn’t think I could take much more Lonsurf, and it also became clear that it was stopping working. The cancer blood markers were no longer going down and I guessed, from what happened when I was on FOLFOX, that they would soon start increasing.
I had decisions to make. After the Lonsurf, then what? There’s a drug called Regorafenib, but having talked to the doctors, I have little hope that it will be effective, and I’ve also heard stories of its toxicity. There’s an immunotherapy drug that no-one I have spoken to thinks would be effective because my cancer doesn’t have PD-1/PD-L1 mutations. If it did, it would probably work really well. There’s another one that was approved in November, the name of which escapes me. How well does that work? “Better than the placebo,” was the answer I got from my new oncologist. My biggest hope, this whole time, has been a new-to-human drug trial. This drug is identified by letters and numbers and targets the KRASG12D mutation that my cancer has. I’ve been waiting, hoping that it would be longer before the cancer mutated around the Lonsurf, and that there would be an opening on the trial when it did.
But if there was no opening on the trial, then what? What if I choose not to keep going with “treatment”? Am I giving up? Or am I making an active decision to feel as well as I can for a shorter amount of time vs being sicker, longer. Which decision will leave me more present for the children? What will be less traumatic for them?
At the end of January my two oldest childhood friends, Sula and Suz, flew into Seattle to be with me for five days. We took walks, took the kids swimming, made gallons of carrot juice, hoping that the falcarinol in the carrots might kill all my cancer and save my life, and we also made plans for my death. They gave me such a gift in opening the door for these conversations and being present and trusted participants in this process. Do I want a death doula? What about a funeral? Logistics of single parenting for Matt? What can we set up for the kids, now? We laughed over old photos and cried because, well, you know. Fifteen years ago, Suz had filled out the initial forms for my account to eHarmony, which led to me meeting Matt, and she was now filling out forms to have initial consultations with end of life doulas.
At the end, as we were pulling into the airport for them to fly home I got a call from Fred Hutch that a spot had opened up on the KRASG12D drug trial. The next day I signed the forms. I began the trial mid February.
Another childhood friend, Laura, visited in early March and brought some levity and banter and giggles to the house, as well as more raw but refreshing conversations.
I’m still on this drug trial. I just had my first set of scans which showed stability in spite of my cancer markers going up and some increased abdominal pain which had me convinced that I might not be around much longer. Inflammation? Cancer die off? We don’t know what caused the pain. But we’re believing the scans over the markers and “we’re not gonna look a gift horse in the mouth” said Jim, my new oncologist. “Whatever that means,” he added. I explained the meaning of the gift horse and took the opportunity to show him old pictures of my previous life as a cowgirl.
I took ibuprofen for a while and it helped with the abdominal pain. Now I’m back to not needing it.
I feel pretty darn good on this drug. I take it twice a day. It’s disgusting, like creamy plastic, and I get anticipatory nausea before I take it. But I can get the 6 pills down without vomiting and then I scarf three or four TUMS to stop the acid reflux. The following tiredness and nausea lift after about two hours.
I’ve started running again, and lifting weights, working on the garden and thinking about meaningful pursuits. My brain function is improving, seemingly daily, and I feel more engaged in life than I have in so long. I lie in bed with the kids at night and chat with them about their days, so different from when I was taking the Lonsurf - Aubrey would try to get me out of bed, or Joseph would sit on the bed next to me and read out loud while I slept, occasionally stirring me so I could tell him a word that he was stuck on.
When my abdominal pain showed up, we hastily planned a Spring Break trip to the redwoods in northern California, stopping on the Oregon Coast along the way. It’s been on our family bucket list, and it felt urgent and doable. We made sweet memories next to the powerful Pacific Ocean and walking, so small, amongst the giant trees.
Zephyr continues to be a dream, going with the flow of the house and being the perfect travel dog on our trip.
Matt is also a dream. He and I have struggled to have the difficult conversations around my end of life, but it’s becoming more accessible to us both. When I feel well, it’s so easy to fall into the trap of why worry about it now? But actually, it’s a load off my shoulders when we talk. The tears, as always, are helpful and the clarity gained leaves me wanting more.
A old friend from [high]school just lost his wife to colorectal cancer. He’s been writing his experience with poignancy, honesty and a lot fewer words than me. It’s a window into his world and a resource for other dads of young children whose partners have stage 4 cancer.
Of the other young mothers I knew who had stage 4 abdominal cancer, I am now the only one alive. It’s an odd feeling. Of course I’m grateful to still be here, but there’s also a pinch of envy. I am scared of what’s to come: the pain, the worry, the waiting, the sense of loss. It’s all still ahead of me, and there’s an instinctual urge to get it over with. Like volunteering to go first for a vaccine. Or being the first to jump into cold water. Get the hard stuff behind me. I want to get to the part where I am at peace and Matt doesn’t have to worry any more and he and the kids can begin rebuilding and moving forward and healing. But then, I still get to hug Joseph in the morning, peep at Aubrey dancing to no tune, snuggle with Matt as we fall asleep, offer empathy to a friend, work with Zeph to locate deer sheds, plant some sprouting walnuts and quietly sip coffee on the patio while the hummingbirds buzz around the cherry blossoms.
What’s next? I want to say I don’t know, but I do. At some point the cancer will mutate around this drug, and then I’ll be weighing my options, which includes no more treatment. But for now I get to feel joy and delight. If this drug keeps the cancer at bay long enough, Joseph and I may try to climb Mt. St. Helens at the end of the summer, as he had requested after the climb last year. I’m afraid to book the climb for fear of jinxing my health.
The children’s birthdays are at the end of this month, and a few days ago I came across some scheduled emails I had written to them when I anticipated I wouldn’t be here. I unscheduled them. I’ll be here to hug, kiss and tell them in person this year. I am beyond grateful.
Dear Sarah, Prayers…God Bless you. As I read Your words I could only keep praying 🙏 Your doctors are in my thoughts and prayers. Your loving husband 💕 Your precious children ❤️❤️Keep writing your story. Keep living as long as God will keep you here. 💝Love, Peggy S
Oh Sarah. All of life is here in these words. Thank you for sharing them with us all. Please keep writing. X