Health Update #35: Brass Tacks

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Physical Exam (08/30/2024)

Constitutional: 

• General: He is not in acute distress.
• Appearance: Normal appearance. He is not ill-appearing. 

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Let us get down to brass tacks. The origin of that phrase is unclear, but most likely can be traced back to the turn-of-the-19th-Century in the American South. Some argue that it was coined by British military during World War I. But usage in a local Texas newspaper article in 1904 dispels that idea. Others claim it alludes to tacks hammered into a sales counter to signify the trueness of the cut of fabric, or maybe even the brass tacks associated with fine furniture to mean finishing touch.  In a tangentially related article on lexicography, Anatoly Liberman uses the idiom "copasetic" as an example of idioms of unknown origin: "the earliest citation of copasetic in the Oxford English Dictionary goes back to 1919, and it first appeared in a dictionary in 1934 (Webster). Both spellings (with -s- and with -c-) are acceptable. The rest is guesswork, ranging from absurd to thought provoking." Absurd to thought-provoking. It's an existential dilemma of origins. According to one blogger,  brass tacks refers to the finishing touches put on a coffin, the implication being that when a person gets down to brass tacks, they "accept conditions as they are." Perhaps the origin doesn't matter, so long as we agree on what it means.

Two weeks ago, Corrine and I met with my oncologist Dr. H at Corewell Health in Reed City to discuss my latest CT scan. Brass tacks. We sat in a small, windowless room for the nurse to take my vitals and for Dr. H to show up on the large computer screen in front of us. He's always very pleasant but not overly chipper.  He skipped over the pleasantries and said that the CT scan revealed further disease progression while on Gemcitabine, just as I had progressed on platinum-based chemo, Taxol, bevacizumab and Atezolizumab last summer in Reed City, and as I had progressed on Docetaxel/Ramucirumab last winter at University of Michigan, and as I had progressed last spring on single agent Pemetrexed at Northwestern. That's it for standard of care treatments for NSCLC adenocarcinoma that might slow the disease or even halt it temporarily. 

What does disease progression look like? My right lung is riddled with spots of disease, though much of the tumor is dead. There are two new spots in the lymph nodules on the upper lobes of both lungs. The tumors on my kidney are still growing. I have a new lime-sized mass in my right latissimus dorsi which could either be cancer or infected fluid. I have malignant spots on my shoulders and back and ribs that are quite painful. It hurts in my upper right lung when I take deep breaths. For the most part, all of my other organs are clear. No brain mets, even.

Dr. H says that the Marshall that appears on paper is much more sickly than the Marshall that appears in person. He and everyone else seem to think that it's the in-person experience that counts.

There are a few limited avenues at this point. We discussed possible checkpoint inhibitor therapy and single agent Abraxane, as well as best supportive care and hospice services.  I asked about Keytruda and he shrugged and said, "oh, yeah, anything you want to try, I'm willing to throw things at the wall."  There's the possibility for a phase 1 trial in Chicago, but the side effects from those (as well as from the other drugs) sound grueling and involve hospital stays and limitations on travel and minimal chance of extension of life. Or maybe no life extension at all while suffering from treatment and other limitations. We left the cancer center feeling pretty resigned and not sure which direction to take. 

Physically, I've been feeling pretty rough. 

I have my bad days and less bad days. But no consistent terrible days yet. The iron infusions have helped with the anemia, but the shortness of breath is pretty consistent now, which limits my mobility to a couple blocks with the use of a cane. The fatigue from the cancer and the opiates keep me in bed for at least 12 hours a day. The pinky finger that I broke during my last big fall healed wonky, and now every time I try to type an "a," I hit the caps lock key instead. I didn't realize how often I need to type an "a."

But the morphine keeps the wolves at bay and the Ritalin helps me stay awake at least some of the time. I'm starting to have a little trouble with occasional double vision and other visual anomalies, especially when I'm dozing, but I think that's from my eyes crossing while I'm drifting in and out of sleep. The pain pump helps with the cancer pain, but I find myself having to take extra doses throughout the day and night. It does help, but I could use a higher dose.

Dr. H. assured me that as long as I wanted to continue with trial and error treatment, they would keep coming at me with chemo cocktails. At that appointment two weeks ago, Dr. H suggested that he wanted to do a biopsy of the latissimus dorsi to determine if it's cancer or an infection. He also laid out several treatment options for me. I could keep trying different cocktails that are not standard of care treatments, such as Abraxane or other drugs. All of those have serious side effects. Another option would be to go back to Northwestern for a phase 1 trial, which would involve a hospital stay. And the final option is to discontinue treatment and focus on palliative care for comfort -- to focus on living my best life as long as possible with support from palliative care, physical therapy and, eventually, in-home hospice care. Whichever path I take is likely to have a similar outcome, give or take a couple months. 

When we met with Dr. H last Friday (8/30), he immediately asked what my decision was. "No more chemo," I told him. He seemed relieved. We talked through transitioning back to Northwestern and the kinds of comfort care I might look into while in Chicago. I'm working with HR to time my retirement so that I'm insured in Michigan through the end of September and then insured in Illinois starting in October. Dr. H said that I'm a long way off from needing in-home hospice care. Still, I'm working on having in place Advanced Directive documents:  a Living Will, a Power of Attorney, and a POLST (Practitioner Orders For Life-Sustaining Treatment/DNR order). I'll need a physician's signature on my POLST for that to be in place, which pretty much affirms all of the others. All of my accounts have beneficiaries listed. 

Those are the brass tacks. In consultation with my oncologist in Reed City and a second opinion in Chicago, I am halting chemotherapy, immunotherapy, and radiation therapy (unless necessary for comfort care), while moving my treatment back to Northwestern in Chicago for palliative care, physical therapy, nutritional therapy, and other comfort care measures. I plan to live my most joyful life under the circumstances for as long as I can. I'm glad to be able to spend more time with the people I love.

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A not-quite-moveable feast at Hemmingway's [sic] Bistro.