Blood Disease, What? Me?!?

August 2011 through May 2012

Something Was Not Right

Even before August 2011, people often asked if I was okay.
"You look pale."
"You look tired."

I was always tired.

I assumed I was just busy. I worked hard. I helped others before helping myself. I spent time hiking, trail racing, bicycling, wrestling, and lifting weights. I stayed active year round to maintain my health.

So yes, I thought I was fine.

Just tired.

The Complete Blood Count

On August 22, 2011, the day after my 44th birthday, I went in for my annual physical. A complete blood count test was part of the routine exam.

A week later, my doctor called. My red cells were low. My white cells were low. My platelets were low.

She asked me to come back for another test.

Mid September, same results. Still low across the board. She told me there was something wrong with my bone marrow.
"Perhaps a virus," she said.

A virus sounded manageable. Something temporary. Antibiotics and move on.

I felt strong. I was racing, wrestling, exercising, eating well. I did not feel sick.

I assumed it would pass.

The Biopsy

In October, I saw a hematologist in Washington, DC. Another blood test confirmed my counts were too low.

This was not my first bone marrow biopsy. Years earlier, I had donated bone marrow for research and went through one then. I remembered the procedure.

The hematologist suggested I come back in a few weeks for a biopsy.

Jolynn refused.

She did not want to wait weeks while my counts kept dropping. She pushed him to do it that day.

Despite a full waiting room, he gave up his lunch break and performed the biopsy immediately.

That was my second biopsy.

Bone marrow biopsies were not minor procedures for me. They were deeply painful. I dreaded the thought of going through another one.

Until then, I had never really thought about what bone marrow does. I finally read about it. It is the primary site of new blood cell production. Human marrow produces roughly 500 billion blood cells every day.

Five hundred billion per day?

So this had something to do with my blood.

Some kind of virus?

Myelodysplastic Syndrome

On November 22, the hematologist called Jolynn with the results. I was diagnosed with myelodysplastic syndrome, MDS.

He said there was nothing to worry about for a while. We had an appointment on December 1 to discuss more.

Jolynn told me at work during a Thanksgiving potluck. I remember scratching my head.

What is MDS?

At home, we researched.

I still did not think "cancer." My family doctor had said virus. I held on to that.

Cancer

Jolynn saw it differently.

She said she could see a neon sign on my chest flashing the word CANCER.

I resisted that word. MDS was described as "a form of cancer." I interpreted that as not really cancer. Maybe adjacent. Maybe technical.

She made a simple point.

"MDS patients go to cancer centers. Why is that?"

Blood cancer. Me?

Impossible.

Except it was not.

Plenty of Time

On December 1, we met the hematologist again. No interpreter was provided, so we communicated with pen and paper. It was frustrating and incomplete.

He could not answer some of our questions. He called the pathologist at George Washington University Hospital for clarification. Even then, answers were vague.

Jolynn asked about my future.

He showed us a card that read:

Prediction is very difficult,
especially about the future.

— Niels Bohr

He told us I likely would not need treatment for two or three years. Monthly blood work would monitor progression.

On January 5, 2012, I returned for labs.

My counts were lower.

Flashback

Between December and January, as Jolynn and I researched MDS, I began connecting dots.

The fatigue over the past few years.
The easy bruising.
The nosebleeds.
Bleeding gums.
Getting winded on hills.
Frequent infections.

White blood cells fight infection.
Red blood cells carry oxygen.
Platelets help blood clot.

Mine were all low.

Rechecked

We were not satisfied with our first hematologist, especially without interpreter access. On February 9, we returned with a friend who interpreted for us.

Again, my counts had dropped.

We left that appointment without real clarity and without confidence.

Jolynn was not comfortable with what we were hearing.

When we got home, she began researching on her own. She searched for specialists in myelodysplastic syndrome and found doctors at Johns Hopkins Hospital in Baltimore. Johns Hopkins is home to one of the largest leukemia programs worldwide.

No one referred us. No one suggested it.

She took the initiative. She gathered my medical records, pathology reports, and biopsy results and began sending everything to Johns Hopkins.

She was not waiting for permission.

That decision changed everything.

Silent

Through all of this, I kept living.

I completed Tough Mudder.
I lift weights.
I coached the Model Secondary School for the Deaf wrestling team.
We won the 2012 Deaf Prep Wrestling National Championship.
My wrestler was named Wrestler of the Year.
I was named Coach of the Year.

No one knew.

If treatment was years away, I saw no reason to alarm people. I believed I had time.

Second Opinion

Dr. Gore at The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins reviewed my records. We met him and Dr. Schweizer on April 16, with an interpreter provided.

They joked. I joked. They made me comfortable.

Dr. Schweizer explained what was happening. Over time, my cells had mutated. The bad cells were not dying when they should. They crowded out the healthy ones.

Dr. Gore confirmed I had MDS, and it was more aggressive than originally thought.

The only potential cure would be a bone marrow transplant, when the timing was right.

Jolynn asked why we could not do the transplant immediately.

Dr. Gore answered bluntly.

"The transplant can kill him. We do not want to kill him and give Johns Hopkins a bad name."

It was sobering. Transplant was both cure and risk.

Another biopsy was scheduled for April 26.

I was at a stained glass store, on April 21, looking for pieces for a project. I had already been to the doctors and knew something serious was wrong, but I still felt completely normal. I decided to keep going as usual and not let it pull me down. It was out of my hands, so I chose to stay positive and believe that I would be fine. I figured the treatment for MDS would be simple.

Another Biopsy

Dr. Schweizer performed this biopsy. He was careful and steady.

It was still painful.

Even knowing what to expect did not make it easier. I braced myself for it every time.

Evolving Leukemia

On May 11, we met again.

He asked how I felt.

Great, I said.

Any bleeding? No.
Fever? No.
Infections? No.

He looked at me and then told us the results.

The biopsy showed evolving acute myeloid leukemia from antecedent MDS.

I needed to be admitted immediately for induction chemotherapy.

"Now?" I asked.

"Yes. Today. Your counts are not good."

I sat quietly.

I remembered reading that AML developing from MDS can be difficult to treat. Prognosis was not encouraging.

But there was no other path.

"If I already have it," I said, "then let's fight it."

He smiled. He liked my attitude.

Weeks

After the appointment, Jolynn asked a research nurse what would happen without chemotherapy.

"Only weeks," she said.

Without treatment, I would die quickly. With treatment, there was a chance.

An easy choice, in theory.

What if I had skipped that annual physical? What if we had ignored the fatigue?

Please see your doctor. Even if you feel fine. Especially if you feel fine.

A Few Days

On May 11, I asked if I could go home first. Just a few days to prepare. To pack. To breathe.

They agreed. My counts were dangerously low, but they allowed me the weekend.

On the way home, I kept thinking I needed to do something big. Something important. I needed to prepare my family while I was gone. I had plans forming in my head. Lists. Conversations. Arrangements.

When we got home, I walked into our bedroom and sat down on the edge of the bed, trying to figure out where to start.

And then I could not start.

I could not think.

Prepare for what?
Pack for what?
What exactly was I supposed to do?

The truth hit quietly. There was not much I could prepare. There was not much I could control. All I knew was that I would return to Johns Hopkins on Monday for paperwork and pre-admission steps, go back home again, and then return on Tuesday to begin treatment.

So that weekend, instead of executing some grand preparation plan, I told brother, family, friends, and coworkers. It felt unreal. I never meant to shock people like that.

I returned to Johns Hopkins on May 14 to begin the formal admission process.

I went to the lake right after leaving the hospital. I stood there skipping rocks across the water while thinking deeply about what I needed to do before returning. My mind ran through many things I wanted to make sure were in place so Jolynn and Ando would be okay while I stayed at the hospital.

But most of those thoughts went out the window. I felt stuck and realized there was not much I could actually do.

On May 16, they placed a Hickman line in my chest.

On May 17, I began induction chemotherapy.

May 16 was also the anniversary of our second son's death.

There are dates that never leave me. That one now carried two meanings.