Why would a 68 year old man, a man with incurable cancer on an aggressive chemo program, who has lost his job with no regular income, a man with very limited construction knowledge or experience, decide to build a house from scratch? I will tell you why and how this cottage has become my good medicine.
The Downward Spiral
In 2018 I was in excellent health, enjoying my 38th year as a PA, working in headache medicine, and training for a trek across Greenland the following summer. By Thanksgiving, my general optimistic feeling about my future was interrupted when I started to develop neurological symptoms of muscle fasciculations (twitches). It started with one muscle in my shoulder, but soon spread to my opposite shoulder, my biceps, legs, abdomen. Soon, virtually every muscle in my body was twitching 24-7. Having worked in neurology for most of my career, I knew that the only serious disease that this could be associated with was ALS. I told Denise before Christmas that I had the feeling that this would be my last.
I didn’t hurry in to see one of my old colleagues in neurology because I was so busy around the holidays and I knew that there was nothing they could do for me. Soon after Christmas I suddenly developed a cervical radiculopathy (numbness down my arm) and did see my primary care physician. He ordered a CT scan of my neck the following week (which was the first week of January 2019).
On the day of my CT scan, I had been out on a 5 mile training hike with my dog. I was pushing myself hard as I seemed to be out of shape. When I arrived at radiology, they in turn, sent me to the lab because everyone over the age of 60 must have renal labs to make sure it is safe to use dye. When I returned from the lab, I could tell the radiology tech was alarmed. He said, “Uh, I’m doing your CT but I can use dye. I also called your doctor and she said you must report to the ER immediately after that.” For those who understand labs, my eGFR was 4 (dialysis is needed at anything below 18) and my blood potassium was >8.7, a potentially lethal level. To make a long story short, I was transferred to ICU in a larger hospital on the mainland as I watched my entire life unraveling and spiralling downward. It took several days to get my potassium down and the doctors had several “end-of-life” conversations with me. I had met with my pastor while in the ER and all my kids were summoned home to possibly say their goodbyes.
It also took several days, after copious lab tests and bone marrow and kidney biopsies, to have a diagnosis, IgG Lambda Multiple Myeloma (MM) with associated renal failure. Studies showed that the mean survival survival period for someone in my precise situation was 9 months. I was immediately started on an aggressive chemo program, started renal dialysis for 5 hours every other day, and began induction therapy for a bone marrow transplant in Seattle.
It was a difficult spring with so many days spent in the dialysis chair. I developed significant back and neck pain related to the cancer but fortunately not from the typical fractures that MM patients can have. The worst part were the fasciculations which were non-stop, making impossible to sleep more than a few minutes at a time. If you have ever had one muscle twitch that lasted for days, imagine have hundreds that lasted for years. The twitching baffled my MM doctors as this certainly was not a typical symptom of MM. Eventually I did have a work up for ALS (no one could be that unlucky to have MM, renal failure, and ALS or could they?). Those tests fortunately came back negative.
We did try some treatments per the advice of an ALS doctor at U of Washington. But he warned–and he was right–that few treatments work to stop fasciculations. We concluded that I must have been in renal failure for months and the renal toxins (which we know are neurotoxic) must have caused the fasciculation syndrome and maybe the neck and back pain. There is a group of fasciculation syndromes lumped under the title, “Benign Fasciculation Syndrome.” The word “benign” indicates that it is not from ALS or other deadly disease. Yet, one study showed that those patients who had suffered from it for more than two years, over 50% had suicidal ideation because of the syndrome. It is hard to explain why this persistent symptom is so emotionally distressing but it overrode the fear of death from the cancer. My hope was that dialysis to remove the toxins would help, but it only made the syndrome worse.
I continued to work part time until the time for my bone marrow transplant. I will not get into the specifics of that year as not to sound like a whiner or embellisher, but it was brutal. I call the summer of the transplant as “my summer camp at Auschwitz.” I then had complications from the procedure and developed a “Pseudo-host Vs graft disorder” which prolonged the misery for the following year. Then, when I got my 90-day post bone marrow transplant labs, I learned that the million dollar torturous procedure had failed. It was the most depressing moment of my entire life as I had had hope of a complete remission. The only good came from that summer was my renal function had improved enough to get off dialysis. Thank God.
As planned with the previous CEO of the hospital where I worked, I returned to work in December. To my surprise, the new CEO of the hospital wanted to meet with me before my first day of work. To my shock, he informed me that in my new present state of cancer, “Mike, you no longer bring value to our organization.” So, he fired me for having cancer. My 38-year career ended suddenly and without fanfare. I never saw my patients or my workplace friends again. It was quite a juxtaposition, having worked as a headache specialist at Mayo Clinic, Rochester, the number one department of neurology in the world and there being told time and time again by my colleagues that I was one of the most valuable members of the 60-provider team, and now being told by a tiny island hospital that I no longer brought any value to their organization. Quite depressing. Cancer had taken my life in every way but literally.
My physician colleague at our local hospital (who was also laid off since I was the primary provider in the headache clinic) began to working on starting a new headache practice in Bellingham. It looked promising until we began to hear the chatter in the public health world about a coming pandemic. Once COVID was established in the US, I was warned by my transplant team that I could have no contact with the public; it was the death nail to my career, and social life. An early study from Asia showed that patients who had MM, renal failure, and had had a bone marrow transplant, when they contracted COVID, 47% of them died. My world, which had been shrinking rapidly, suddenly make me a recluse. A hermit. The Hermit of Loch Eyre (I live on Washington’s Lake Erie). My wife, who was an hospital administrator, suddenly had to start working 12-hour days because of the pandemic, often going in seven days per week. When she did get home late at night, she was so tired she would eat and go to bed–all talked out at work.
So, I found myself completely alone, save my Saint Bernard Greta, for most of the day. I could not leave the premises. This situation, combined with my constant, almost disabling symptoms, and the poor prognosis having failed a bone marrow transplant, I became very depressed. I felt my family growing more distant. It seemed to me it was their way of coping with losing me, but was more painful from my end. I was extraneous to the world. The perfect storm. For two years, the first year of my diagnosis and the next year, the first year of my quarantine, I would spend much of my night (the twitching making a good sleep impossible) prone on the floor, in tears, conversing with God to save me from this dark place, or to end my life. I was never mad at God or argued, “why me?” This was because I had already worked through a tremendous disappointment in the 1990s. I had peace with God since. However, at the worst part, I began to plot my own demise, just to escape the never-ending suffering. It is easy for people to judge those who end their lives from a distance, but unless you have lived in the midst of the physical and emotional suffering, you have no right to do so.
There is more intimacy on the wrestlers mat than the lovers’ bed.
There is something incredible about wrestling with God on such an intense level. Just ask Jacob or Job in the Bible. I now say that there is more intimacy on the wrestlers mat than the lovers’ bed. Since then I feel that I’ve entered a type of “holy of holies” in my relationship with God and I find it perplexing when other good people, who have never had an experience like this, tell me that I’m not spiritual because I do not practice the techniques of spirituality, speak the correct spiritual jargon that they ascribe to or conform to their particular Christian subculture or follow their guru. I feel like I’m a stingray and am being told my mortal humans that I must go to the YMCA to learn the proper techniques of swimming. But it is what it is.
It was during these darkest hours, when I came close to taking my own life just to escape the pain, that I made a decision that I had to be proactive to escape the event horizon of this black hole.
Retirement Dreams Gone Bust
It had been my dream in retirement to buy an old stone house ruin somewhere around the Mediterranean or Scotland and spend my winters restoring it. I had taken trips to Italy, Malta, Morocco, and Scotland to scout out such opportunities. It was my passion. But my cancer ended those dreams. My chemo program is such of an intensity that living abroad, even for a few months, would have been impossible. Additionally, the financial cost were no longer feasible with my illness and employment ending.
I had also been an writing hobbyists, writing five previous books. In my retirement I had wanted to take my writing to the next level and often envisioned me in my restored stone cottage, writing good fiction. I did write a quick book while I was undergoing my stem cell transplant, Christiana Athena; the Girl with the Headaches, as a goodbye gift to my patients. However, with my illness was so overwhelming that I never marketed that book and I’m sure most of my patients never heard of it.
It was at this juncture, to save my soul from despair, I decided to write an epic novel that would demand years of research and editing. I also wanted to make the protagonist a PA (physician associate) as my goodbye gift to my profession. I would also build my old stone cottage from scratch, here next to our house on our beautiful lake. The next two years my writing of The Stones of Yemen consumed me and sustained my physical life. By the time my novel was published (February, 2023) my permits for my cottage were approved, breaking ground in April.
Since starting this building project, it has been tremendously challenging. I have limited building experience and my physical strength–under the influence of heavy chemo–is limited. I’ve had many sleepless nights (speaking of which, the twitching has slowed down considerably over the past two years) but this time, the sleeplessness is from trying to solve building problems, trying to find ways to do things that would normally take several men.
One of the greatest challenges was getting three 30-foot beams 20 feet into the air and then 14-400 lb roofing panels on top of them. Last week, my son Tyler and two of his carpenter friends were able to finish the task, for which I am deeply grateful. However, their opening for helping me came up quickly and I had to spend most of August working long hard days to get ready for them. Now, I’m under a lot of stress as the raw roof should not be rained on and I’m having a bit of trouble finding a finish roofer.
The cottage has served its purpose well. Before I had to discipline myself to exercise each morning for an hour. Now, I work hard 4-6 hour days, and fall in bed exhausted. I also never think about my cancer except for once a month when I must go in for labs and get my chemo infusion. I have a reason to get up in the morning. All four corners of my brain are filled with planning and hoping again. But my body hurts and I’m bone tired . . . in a good way.
Mike
J. Michael Jones 