Health Update #20: Being and Nonbeing

An existentialist gazes into the abyss; the abyss gazes back. 

Existential Comics: The Elflord and the Mayfly

In "Hour of the Mayfly: Life and Death the Existentialist Way," Tim Raynor writes, "The Existentialist philosophers . . . were so impressed with the transformative power of death that they made confronting death central to their philosophical way of living. Death, Existentialists argue, brings life and its possibilities into focus. In the process, it reveals what we are ultimately capable of being. Heidegger argues that confronting death brings to light ‘the totality of our potentiality-for-Being.’ In a moment of vision, we grasp our full sphere of potential – a realm of potential that is ours and ours alone, that we may or may not take advantage of. We catch a glimpse of our whole person, our total capacity to exist. "    

“There is no Stage 5.”  John "Johnny Sack" Sacrimoni, The Sopranos, Season 6, Episode 14.  

I talked to Dr. H, my oncologist, at 7 am yesterday morning by phone to go back over the results of the PET scan. Based on the PET scan results, the cancer did not respond to immunotherapy.  Instead, as I mentioned in my last post, it metastasized further to a 6 mm spot above my left first rib, a metastatic fracture in my right sixth rib, and a fast-growing 19x24 mm mass on my right kidney. They’ve ruled out immunotherapy as a viable treatment for me. My biomarkers were a 30% match for immunotherapy, so that's not really surprising. I have a consultation for a 2nd opinion at the University of Michigan’s Rogel Cancer Center in Ann Arbor on Tuesday, as well as a 3rd opinion at the Lurie Cancer Center of Northwestern University in Chicago in the near future. Dr. H is queuing up the referral to Northwestern now. We expect to transfer treatment services to Northwestern as the most capable of addressing late stage cancer, as well as the most geographically convenient. That will involve a lot of paperwork. Otherwise, we have a radiation consultation at Reed City in a couple weeks. I'm also scheduling a CT scan to make sure that there's no brain metastasis. My thinking is a little cloudy, and my writing, you may have noticed, has recently suffered more and more from gaps and confused homonyms (too/two; there/their). But that may be more about how my brain just works now. Or maybe it's from the narcotics. 

Only recently have they subdivided Stage 4 cancer into 4a and 4b, I guess to give those with 4a staging like myself a little hope. In terms of staging and prognosis, when pressed, Dr. H admitted that I’m now officially late stage (4b) non-small cell lung cancer. Stage 4b is terminal. It’s just a matter of time. At this stage, short of a miracle, the cancer is incurable. 

I still have a tissue sample sitting in a lab in Grand Rapids that will be sent off to a company called FoundationOne for Next-generation Sequencing testing (NGS), looking for over 300 genetic mutations that might be addressed through targeted therapy in pill form. The results should be available within a couple weeks, and will become part of a national database available to researchers looking for subjects. 

Because the first line treatment failed (radiation, chemotherapy with carboplatin, and immunotherapy with atezolizumab), we'll probably shift to a second line treatment of paclitaxel and/or docetaxel, unless there are Phase 1 clinical trials that might involve targeted therapy. If there is a Phase 2 clinical trial that I qualify for, I would either be assigned to the experimental group with targeted therapy such as alectinib, entrectinib, or pralsetinib, or I would be assigned to the control group given standard care of durvalumab.

It’s possible that there could be a targeted treatment that could make a difference of a few months and/or increased quality of life for a period of time. Dr. H said that among his patients, the average life expectancy is 18 months. The online calculator for cancer survival rates says that the best case scenario for someone with my markers (57-year-old male with stage 4 non-small cell lung cancer with poorly differentiated cancer cells diagnosed 6 months prior) is 2 years (only 6% of patients survive for 5 years or more); the typical scenario is 3 to 16 months. In the worst case scenario, 10% of patients die within 1 month. 

So what we’re looking at right now is how to balance a manageable quality of life and life expectancy with the toxicity of treatment. There will come a point when the treatment will become more toxic than my system can handle and preserving quality of life will outweigh any benefits that might come from chemo or targeted therapy. 

As my PET scan shows, my bones have already started to fracture. First my right humerus. Then my sacrum from a fall. Then my 6th rib from metastasis. Possibly, my1st rib may also eventually deteriorate, though we're trying to prevent any more fractures. Other bones, of course, are at risk. The sacrum and rib most likely will never completely heal. They are somewhat painful, but not excruciating. On a scale of 1 to 10, I’m currently at about a 4 on most days, 8 on days when I have physical therapy. On those days, I typically need a couple Dilaudid and a nap. 

To address bone density, Dr. H expects I'll get infusions of Zometa. If the side effects from that are too much, they'll probably switch me to Xgeva, which is more expensive and more difficult to get approval from insurance. One side effect of both drugs is osteonecrosis of the jawbone, so that's something we'll have to watch out for. There's obviously a risks/benefits equation with the bone density drugs. 

On the World Health Organization's Performance Status (similar to the ECOG and Karnofsky scales), I score a 1 on a scale of 0 to 5, with 0 being totally healthy and 5 being dead. A score of 1 means that I can’t do heavy work or stand and walk for long distances, but I’m out of bed for more than 50% of the time. I am able to walk short distances and manage self-care, do light housework and office work. My score downgrades to a 2 once I’m no longer able to do housework or office work, but I’m able to get out of bed more than 50% of the time. Once I’m confined to a chair or bed for more than 50% of the time, the score changes to 3. At a 4 I’m in late stages of wasting, bedridden for nearly 100% of the time, and most likely barely conscious and unable to care for myself. And as I said, at 5, I’ll be dead. I won’t necessarily go through all of the stages but I do expect a gradual decline. Or maybe it's gradual at first, and then a quick decline. 

Most people with Stage 4 lung cancer die of cancer-related cachexia, or wasting disease, when the muscles atrophy, with or without the loss of fat. It’s from the Greek terms “kakis” meaning poor and “hexes” meaning physical state. Very creative. Cancer-related cachexia is similar to anorexia. Essentially, nutritional support stops working. The body grows weak and frail from limited appetite, reduced caloric processing, and abnormally high metabolism. In the latter stages, the patient loses lucidity and eventually loses consciousness. The organs shut down. The ultimate cause of death is respiratory failure. It’s not clear how long all of that takes, but my presumption is that there will be a gradual decline with time to prepare. 

Nietzsche, Heidegger, Sartre, and Camus all wrote about the importance of nonbeing for making sense of the absurdities and the pleasures of being. I’m planning 6 months at a time, and living day by day. The way I feel now and at my current weight, I should easily be able to make it at least 6 months, hopefully with another trip to Louisiana, and then reconsider whether or not I'm still healthy enough to make it another six months at that time, until there are no more months left. I plan a small party at each 6 month milestone.