Out of respect for those who have told me that they only come here to follow my cancer journey, not to listen to my foolish ramblings, I feel that it is time I do an update. This will be comprehensive, so I will not do another one for a year unless something changes. It has been many months since I last did one, and even now, I am hesitant.

I am reluctant because 1) my cancer has been relatively stable for almost four years, and 2) I have friends and family who are in far worse shape from cancer or other diseases than I am. We just lost a dear friend, whom we met living in Egypt 30 years ago, who died from pancreatic cancer. She was an incredible person, but cancer is blind to personal merits that deserve a long, healthy life. It seems that the best people suffer the most. And there are many others, including close friends and family, who are in or have been in difficulties that keep them in my heart day and night.

I was diagnosed with Multiple Myeloma with associated renal failure in January 2019. While I could tell something was seriously wrong with me for months, the diagnosis was abrupt, and I went from a busy career and training for a trek across Greenland to being seriously ill for the next two and a half years. I was on renal dialysis every other day for six hours and on a plethora of nasty chemotherapies, none of which helped. I did a bone marrow transplant, which is brutal in its own right, but it was made more brutal because me being very ill and continuing renal dialysis. It, too, failed, and my future looked grim. I had said goodbye to my family and wrote out my memorial in preparation for my end. Another couple of chemotherapies were tried with little benefit.

I had been following research in Multiple Myeloma, and it is an incurable cancer, but with new things always coming. I tried to enter a trial (CAR-T), but the risks due to my renal failure caused my specialist not to recommend it. The first of a whole new approach (monoclonal antibodies) was approved in 2015 but was in limited use. In June of 2022, I started one, daratumumab. Within two weeks, all my cancer markers disappeared and have been absent since. I have continued this “miracle” treatment until now, plus a very toxic, old-school chemo (lenalidomide) because there is not enough evidence yet that the monoclonal antibody can work as a single treatment. The daratumumab is an infusion into my belly once per month and the toxic old-school lenalidomide is a daily capsule.

No, I am not cured. There is no known cure for multiple myeloma. Multiple myeloma is a complex family of bone marrow cancers (thus the word “multiple”). Many older people have had no symptoms, and a routine blood test discovers it. They often live productive, symptom-free lives, dying from something unrelated. Then, I’ve known those who became seriously ill and died a few weeks after the diagnosis. A third start like me with the total destruction of the kidneys.

How Am I Now?

I am doing remarkably well. I believe in candidness. Sometimes, I have to “pull teeth” to get people to share with me the details about their illnesses. I want to know because I sincerely care. In our culture (we who worked long careers in medicine are the exception), it is considered rude or an exercise in self-pity to mention physical ailments. So, bear with my transparency.

While I am in deep remission and am thrilled about that, I am not normal. My kidney function (I don’t mean peeing but the unfiltered toxins in my blood like BUN and creatinine) is less than half of normal. Yet I am over the moon that I’m off dialysis. It was horrible for me. I did write two books from the dialysis chair, but it made me feel like death warmed over.

My body suffered a lot of other damage during those first 2 1/2 years. I have a lot of neurological injuries from those days, some of which are painful. The toxic chemo I am on also causes a lot of side effects; the top two warnings are “extreme fatigue and diarrhea.” I can attest that their labeling is most correct.

My fatigue is far beyond my age. I force myself to get out and work on my cottage, but 2-3 hours per day is my limit. I am up to a five-mile hike with friends on some Mondays. This is far better than when I was on a higher dose of this toxic old-school chemo, when it could only wash the dishes and then lay on the couch for the rest of the day.

Yes, I’ve struggled with the second side effect, having daily diarrhea for over two years, each morning lasting several hours. I couldn’t make any plans for the first half of the day. I think those with irritable bowel or Crohn’s disease can relate. Fortunately, we have added a new medication ( colesevelam ) to control those side effects, and it is helpful.

My greatest side effect from the cancer, the bone marrow transplant, and the chemo is a severely damaged immune system. I’ve had three month-long bouts of bronchitis-pneumonia this winter. I have to be very careful where I go. I used to like coffee time at Church, where I could connect with friends, but now, it is like walking into a rifle range . . . on the target end. One sneeze from someone could get me in serious trouble. The leading cause of death in multiple myeloma is pneumonia. We are trying a new approach of doing monthly infusions of IVIG (human antibodies) to boost my immune system, and it seems to be helpful. But those are very expensive, and there is a delay in getting them while waiting on insurance approvals.

From a mental health perspective, these are the best years of my life. I am extremely happy. Being so near death with so much suffering for two years gives you a profoundly new perspective. It is like being born again. I am immensely thankful for every breath I draw. I now hear the song of every bird, the buzz of each bee, the touch of every small breeze across my face, and the shade of all the tall trees. I love my wonderful family and the few friends I’m been able to keep during my years of isolation.

The first year of my disease, I prayed and cried day and night (too much suffering to sleep more than a few minutes at a time), begging God to save me from that nightmare. The second year, when it seemed hopeless, I prayed day and night, begging God to end my life as the suffering was more than I could bear. But the intimacy with God then and since has been beyond belief. I cannot begin to put it into words. That’s why it is so painful when religious people tell me that I am a very bad man, and as one from my own church recently told me, “Mike, you are a God-hater.” Just because I don’t conform to their ideas of religious norms. Like seeing human reason as one of God’s greatest gifts. They have no idea what they are talking about. Religion is a very competitive sport, a game I no longer wish to play.

I love living on a lake in the lap of a steep mountain, in one of the most beautiful areas of the world. We are so lucky! Building the cottage has been a real life saver. It takes a great deal of discipline to get moving in the morning but the cottage calls me. I would have given up on a gym a long time ago. I am living in the Renaissance of my life, studying hours per day of things I want to discover. I am working on three books, one almost finished with a working title, Women in Agony. It is a novel about abortion. I am as curious about everything as a little child. I wake up at two in the morning, not from suffering now, but to listen to yet another lecture on quantum entanglements, or the crisis in cosmology, because I feel I’m on the verge of understanding them for the first time. I love this cosmos, which a loving God has given us, and learning about the creator’s gift is what I consider the highest form of worship.

That is the “State of Mike.” Thanks for your interest.