Inspirational Stories

I have this thing inside me called chronic myelomonocytic leukemia (CMML). It’s a rare form of leukemia that affects the blood and bone marrow. Only 1,100 cases are diagnosed a year in the U.S. Four out of a million. I do not want to be that special.

When I first found out about my diagnosis, I asked my attending physician about my prognosis. He did not want to provide any specific time frame, even though I told him from what I had read I had 20-30 months to live. “Don’t believe all that you read. Every person has a different outcome. As we get more data, we will discuss your options.”

CMML has features of two other types of blood cancers and lives in a world between more common diseases like chronic myelogenous leukemia and chronic lymphocytic leukemia. It has features of both myelodysplastic and myeloproliferative neoplasms.

I looked at the online ads for those other leukemias and saw the colorful options with older robust men and women riding their bikes and hiking in Arizona. A pill, a shot, an infusion, whatever, and you are back on the path. It was a mix of self-pity and unfounded disease comparison, a feeling that I knew right away would serve no useful ongoing function.

CMML starts when a stem cell in the bone marrow mutates and results in abnormal blood cell production. An overproduction of blasts and immature monocytes, types of white blood cells, occurs and other blood cells get crowded out. Given that these blasts never mature completely into normal monocytes, they can’t carry out their normal functions. Over time, the abnormal monocytes accumulate in the marrow and other organs and interfere with the normal production of other types of blood cells, including red blood cells (which carry oxygen to all the tissues of the body) and platelets (which form clots to help stop bleeding after an injury). The disease is more common in older adults and males.

So, what happens if you let the disease take its own highly deliberate course? The high number of white cells results in low numbers of red blood cells that can no longer supply an adequate amount of oxygen, resulting in anemia. The immune system has a diminished ability to guard against infection. At the time I am writing this, my platelet level has been normal, but if it lowers, bleeding and easy bruising can occur with no apparent cause, a condition called thrombocytopenia. High levels of monocytes in the blood can lead to abdominal pain and feeling full too soon while eating. CMML also raises the uric acid level in the blood, and I am already prone to gout. I have had three gout attacks in the last six weeks, including one later in the day after I helped lead a Saturday outing for the Sierra Club at Starkey Wilderness Park, a short distance from our home.

It's an odd situation. I don't know what to expect, never having been there before. One of my close friends offered a variation of, “Rob, you're in your 60s now. You’re gonna be tired at times.” I don’t think he can imagine me ever slowing down. And he can’t feel the drop in my energy that seeps through me at times when my usual grit and motivation have been exhausted. The medical providers I have seen tell me to watch out for severe fatigue, bad night sweats, and lots of weight loss.

I have more than four decades of being a medical provider. The patient role is not my strong point. I have always been an integrative medicine enthusiast. I edited a textbook on integrative dermatology. I have done meditation and exercise most of my life. And I started to watch my diet more carefully since the diagnosis. I had lost about 30 pounds in the past year, some of my own efforts.

My daughter Fionna had ordered a bag of dandelion tea and papaya drops. I used them right away, and it helped and provided hope. When I was finally offered a pill during my Moffit appointment for my high white blood cell count (WBC), 49,000 +, I agreed. It felt like a substantial item that I could hold and ingest, and it also provided hope, although I think a placebo might have sufficed. I was told to double the dose during my next visit when the WBC failed to come down adequately for my providers.

My therapist and I talked. He said, “Live your life and try to control expectations of yourself and others.” Good advice.

I have had more emotional changes in the first several weeks after getting my diagnosis than I ever recall feeling before, up and down like a busy Manhattan highrise building elevator. When I was given a name for my disease, I relived my life. It hasn’t been easy. Filled with a tough childhood, disappointments throughout life on innumerable levels, setbacks, and frustrations galore. Maybe it’s okay to shuffle off this mortal coil. Who needs to continue with all this often-unbearable craziness and now this random act of genetic deceit? But I am no Shakespearean character living inside Hamlet’s famous soliloquy, “To be or not to be.” If the coil is the body, I would gladly exchange it for a newer and less genetically flawed model right now. And if possible, having a body like the Rock would highly please my wife.

Perhaps there is a better life in the hereafter, and the soul shall continue after we are released from the often undeniably degrading vicissitudes that can occur in our bodies. But I usually assume there’s a reason for this life right now. My “kind voice” allows me to be gentle on myself as I revisit a highlight reel of the many great events and certain accomplishments in my life that fill me with gratitude and the zest to keep going.

My energy wavers. It's kind of like starting off every day with a certain battery charge, but I don't know how long it's going to last. I can start with 100 and be down to 15 by the end of the day and get charged back up to 50 before getting exhausted for the day. This past Monday, I was just tired, and it was just kind of a draggy day. I saw a lot of patients, but I was less durable, and it’s often hard to pin this enervation just on my cancer. It’s like being taken hostage by my illness ― a biological motor humming inside that seems to sabotage me along with the usual characteristics of being burned out from work and stress.

On Tuesday, I felt good. I saw 44 patients of all sizes, shapes, and maladies and finished the day with some reserved energy.

Right from the beginning, I knew I would face this disease straight on and early. I recognized this would be a burden on my wife Carol, my family, and close friends, and I have been tough on myself. I try to use my kind voice to allow myself to be gentle and know it’s not all my fault. Mostly a genetic bad draw of the cards. A cellular mutiny.

I thought by now, in my 60s, that I would be able to feel comfortable in my body, or at least have a reasonable game plan, like I had when I had a double laminectomy back surgery in 2022. But this is taking me for a body slam. It’s inside of me, and I want it out.

My CMML lives in a rare and protected world of cellular anarchy that I would like to find and help eradicate with as few side effects as possible. I want to address what's happening in my body and mind and health consciously. I am concerned about how busy I’ve kept myself, how much I’ve driven myself, at times to avoid the quiet times when sadness can creep in. Lately, I have felt the quiet and sadness and cried, and it was okay. I am a wounded healer.

I’m happy with the care so far at Florida Cancer Center and Moffitt, but I will go to MD Anderson next week with Carol for evaluation. It is among the best in the world; they have a whole division that focuses just on CMML. I need more answers, and I feel I am just at the beginning of my search.