Health Update #21: Peak Foliage and Second Line Care
From the New York Times: "One of the great joys of the Jazz Fest is the odd parade that occasionally takes over the pedestrian paths, bursting through the center of the fairgrounds with an explosion of color, sun-brellas, horns, feathers, and fancy footwork. This apparently chaotic event is called a second line.
"The second line is a type of parade historically associated with jazz funerals; the term "second line" is often thought originally to have referred to the secondary group of participants in such a parade, behind the band and the family. "Second line" is also used to refer to the distinctive dance moves that can be glimpsed during New Orleans street parades of all sorts."
It’s clear that my treatment team is transitioning me from curative treatment to palliative care that attempts to arrest disease progression and provide a measure of comfort. I've reconnected with the palliative care team for pain management and to alleviate side effects from treatment. My doctors use a lower register voice with me now. Their focus is on balancing longevity and lucidity with comfort. I start radiation next week for five days to try to alleviate some of the discomfort from the metastatic fracture in my 6th rib — on the right side at the bottom of my scapula. It has become incredibly painful, as one might expect of a fractured rib. The Dilaudid/hydromorphone helps in the meantime.
We’ll probably start a 12 week regimen of chemotherapy in the next few weeks (once every three-to-four weeks), probably with docetaxel and ramucirumab. This regimen has been shown to have approximately 20% response (shrinkage of disease) and another 20% disease stability. Single-agent pemetrexed is another chemotherapy agent which could be used as the next line of therapy. Most likely we'll do most of this in Reed City, though it's possible we might relocate treatment at some point to somewhere more convenient, whether in Ludington or Chicago.
The consultation at the University of Michigan was not very promising. I met with Dr. K, the research assistant, to go over my medical history, and then with Dr. Q, the lead researcher, to discuss standard of care protocols and potential clinical trials I might join. There’s a Phase 1 trial that might be a fit where I try some experimental drugs that have only been used on non-human animals and other safety protocols and need to pass the FDA threshold to be declared safe for humans. There’s also a Phase 3 trial where I would be randomly assigned either to the control group and receive standard of care (second line chemotherapy with docetaxel/ramucirumab) or the experimental group being given an additional immunotherapy med. Neither study seems particularly compelling, and the time that it would require in Ann Arbor is a bit more than I’d like.
At the end of our appointment, Dr. Q and Dr. K said their goodbyes and left. Corrine and I looked at each other and said, "Are we done? Do we just leave?" Finally, the aide who led us back to the exam room stuck her head in the door, somewhat surprised to see us, and said, "Are you done?" We shrugged, and she pointed us in the direction of the exit.
We’re still trying to schedule a consultation at Northwestern in Chicago in their downtown cancer center. I don't know if my insurance would cover that, but Corrine plans to add me to her BCBS-Illinois policy starting January 1st.
There’s a pretty big difference between curative treatment, palliative care, and hospice care. Shifting from curative to palliative treatment doesn’t mean that they’re giving up, just that rather than hoping for remission, they are hoping for stabilizing the disease progression and focusing on longevity and quality of life. Hospice care will come once we’ve decided to stop treatment of the disease altogether and focus solely on quality of life, pain management, and end of life care. That could still be pretty far away. It’s possible I could have several years left.
Last weekend it was near perfect peak foliage, despite the rain, and a dozen or so colleagues and spouses and neighbors came in for our six month gathering. Cindy brought “Team Marshall” T-shirts to go around. It was bittersweet gathering with lots of food, and once the ladies swept in, Corrine didn't have to do a thing. We’re going to have to give away most of the leftover sweets to the infusion nurses so that I’m not tempted to spike my glucose levels. We have several pies and a pineapple upside down cake soaked in liquor and lots of chocolate chip cookie bars. And some chocolate treats from Polish Village in Hamtramck. For Saturday night we had pierogi that Cornelia and Jack made with kielbasa sausage, sauerkraut, and cabbage rolls stuffed with pork. It was a heartfelt Polish dinner.
We had brunch on Sunday with ham and fruit salad and sparkling wine before they all had to leave. They've all been very supportive through this process. It was a little sad to see everyone go, but we plan to do it again in 6 months.
In “Second Breakfast,” Kay Marie Porterfield describes finding a bakery that uses just the right combination of ingredients and process to recreate the apple fritters of her childhood -- a second breakfast after her father has finished the chores on the farm. She takes these fritters to her aging father who now resides in an Alzheimer's facility as the only connection between them that remains. She writes, “In silence we watch the green leaves outside turn bronze and crimson and finally brown . . . Outside a sudden gust of wind rips the last leaves from the branches. Soon snow will fall.” It’s a beautiful and painful metaphor, but somehow reassuring at the same time.
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