What Happens When You’re Diagnosed with Leukemia

Driving back from the doctor’s appointment, I was sobbing. It felt like agony. I was banging my fist on the steering wheel and literally shouting out loud, “why me?”

Medical Diagnosis Fear

I’d wanted to be a firefighter. Not always like from the age of 4 but more like ten years. Something about it seemed noble and purposeful. After 9/11 I even tried to volunteer for the army thinking it was my duty to do something in the wake of that horrific trauma inflicted upon us all.

I was finally in a position to volunteer in our new town in Connecticut. It felt fitting to do this because of my longer interest in the work and as some small way of honoring the 343 firemen who died that day.

The first stage of becoming a firefighter was to get an extensive physical. This first part was great. The doctor said I was in terrific shape for a 41-year old man.

The second stage was a kind of nightmare.

After picking up several frantic sounding voicemails, I reached the doctor’s office only to hear the grave sounding voice at the other end of the line state: “we believe you have Lyme disease and a form of leukemia called chronic lymphocytic leukemia or CLL.

I honestly thought this must be a terrible mistake. Like the denial stage of the 12 steps of dealing with death.

Retesting only confirmed the initial diagnosis. I spoke with the doctor who now felt like my lifeline and he referred me to a specialist. I felt like I didn’t want to let go. He felt safe to me. I could tell he was trying to dislodge himself from my emotional grasp. In desperation I asked him how long he thought I had to live. The last thing he said to me was ten years.

I was referred to a hematologist / oncologist who also confirmed the diagnosis then proceeded to tell me they don’t know what causes this condition and they don’t know how to cure it. Sitting there in a state of fear, she breezily told me not be worried. I was still worried. Telling someone “not to worry” doesn’t work. I noticed pictures behind her of two small children. I had three small children at home and knew instantly that she would never have the time to figure out my situation. I knew she has only a few minutes for each patient and with two little ones, a full life at home.

I left her office feeling desperate. In the car on the way home I shouted, “why me?” and banged my balled fist on my steering wheel. This seems in retrospect like the anger phase of the stages of dealing with death.

I wanted more than anything to find another human being who’d successfully walked this path before me and found light at the end of their dark tunnel. I searched and searched for this person and for shreds and shards of information that would unlock this puzzle and allow me to live to old age to see my children grow and have families of their own.

I joined the fire department to save the lives of others. It’s ironic that in becoming a firefighter the process may have saved me as otherwise I may not have known about the leukemia or Lyme until much later.

In the wake of 9/11 with all the grief and fear in the population, it was hard not to have this horror present in one’s daily life. At the time I worked on Wall Street less than 2 blocks from ground zero. I had pulverized and congealed dust from the explosions and collapse caked upon my office window. The acrid smell of the smoke and dust hung in the air for well over a month after the attacks.

9 11 Ground Zero

During this time, I heard an expert on terror explain how best to deal with fear. He said three things were necessary to regain your center:

  1. Research and understand your enemy

  2. Change your life to deal with the threat

  3. Take action

It occurred to me that people diagnosed with cancer and other potentially life-threatening diseases are suffering from a form of terrorism. Just the word “cancer” most often invokes feelings of fear, powerlessness, hopelessness and death. This is precisely what terrorism is designed to accomplish.

The three steps the expert outlined made perfect sense to me and I endeavored to follow them assiduously.

I decided to look deeply and closely into the face of leukemia and understand it better than the oncologist I’d visited twice. I began exhaustively researching this word and the condition it represents daily.

I began seeing a wonderful psychologist as I sensed it was vital to fire on all cylinders to meet this crisis with every tool at my disposal. My diet began to shift and I investigated supplements.

One session the therapist asked me a question that shook me and changed my life. I’d just said to her that I felt as though a dark cloud was following me everywhere. I feel it and almost see it hanging there above me like the evil cloud of smoke that hung for so long over lower Manhattan. When I said this to her it was absolutely true in my mind. Her response to me was: “what if the dark cloud is actually a mirror?”