Five Years Later

January 2014 thru August 2017

Five Years Later

It has been five years since my bone marrow stem cell transplant.

So far, there have been no issues with my blood.

I often think back to 2012 and 2013. Those years feel both distant and close at the same time.

People sometimes ask me if I would go through chemotherapy again.

The honest answer is this: I do not want to.

Chemotherapy was one of the hardest experiences of my life. The pain, the weakness, the uncertainty — I do not wish to repeat it.

There were moments when I told myself I would rather die than go through that again.

But that is only part of the truth.

If my life depended on it, if there were a real chance to keep living, I would fight again.

It would not be an easy decision. It would depend on what I was facing and how serious it was.

But I am not finished with my life.

If I am going to die someday, it will not be without a fight.

Last Visit at Johns Hopkins Hospital

I saw Dr. Meade for what would be my final scheduled visit.

For the past three years, he had monitored my recovery. This time, the conversation was different.

“No more checkups,” he told me. “Follow up with your primary care doctor. If anything serious happens, contact us.”

That was it.

It felt strange walking out of Johns Hopkins without another appointment on the calendar.

Healthy — yet aware that relapse is always a possibility.

I thought about my first doctors, Dr. Gore and Dr. Schweizer, back in 2012. I still remember when Jolynn asked if there was a cure.

Dr. Schweizer said there was no cure. They were doing everything possible to keep me alive.

Five years later, I am still here.

Relapse or Secondary Cancer

From the beginning, my doctors were honest with me.

Relapse is possible.
Secondary cancers are possible.

They explained that secondary cancers often appear years later, sometimes around ten years after treatment.

So even five years out, the clock is still ticking.

Some of the patients I met during my hospital stays were not there for the first time. Some never received a transplant and returned repeatedly for chemotherapy just to keep their disease under control. Some experienced transplant failure.

I remember meeting a young woman who told me she was facing her third transplant failure. She was preparing to go back on chemotherapy again.

Not everyone I met in those hospital halls is alive today.

We had the same diagnosis — leukemia — but we did not have the same outcome.

That reality stays with me.

I am saddened by what others endured.

And I am aware that my story could have been different.

Uncertain Life

Knowing that relapse or secondary cancer could still happen — maybe in a few months, maybe in ten years — changed how I think about time.

Before 2012, I assumed I had decades ahead of me. After leukemia, that assumption disappeared.

I began looking at my interests differently.

When I saw something new I wanted to learn, I no longer asked, “Can I do this?”

I asked, “How long will it take to become good at this?”

“How steep is the learning curve?”

“And do I want to spend that much time climbing it?”

That way of thinking was frustrating. I did not ask for it.

But uncertainty forces you to measure time differently.

I would look at boxes of electronics projects and realize it might take years of study to truly enjoy them. If I invested that time, I would have to give up something else.

So I started asking myself a harder question:

If my time is limited, what do I truly want to spend it on?

I decided I wanted to enjoy my life as much as possible — not spend years preparing to enjoy it someday.

Downsizing My Interests

Because of that uncertainty, I began simplifying my life.

I downsized my hobbies to the ones that brought me the most joy with the least delay.

I focused on art and model railroading.

Even within art, I simplified. I limited myself mostly to graphite drawing, watercolor, and acrylic painting. Occasionally woodworking or stained glass, but only if the learning curve was manageable and I could enjoy the process without months of study first.

Short learning curves were acceptable. Endless preparation was not.

I continued exercising daily. That stayed. An hour a day to move, to stay strong, to feel alive — that was non-negotiable.

I reduced the number of books and magazines I collected. I kept only what I could realistically read and enjoy without sacrificing time from other parts of life.

It was not about giving things up.

It was about choosing what mattered most.

Wrestling Head Coach

After the 2013–2014 season, my son Ando decided to move to Seattle to pursue new opportunities.

That left the head coach position open again.

I stepped back into the role for the 2014–2015 season and beyond.

The interview process was straightforward. I had a strong team record and multiple championships. More importantly, the system and culture I had built since 2003 had never really left Model Secondary School for the Deaf. Ando had continued the same program and training philosophy while I was recovering.

It felt natural to return.

This time, though, I approached it with a slightly different perspective.

Coaching was no longer about building a long-term dynasty.

It was about being present.

About investing in the student-athletes in front of me.

About enjoying each season as it came.

Be Grateful

I am grateful.

Grateful for the doctors and nurses who treated me.

Grateful for my donor, who gave me a second chance at life.

Grateful for my primary care doctor who recognized something was wrong in 2011 and acted on the abnormal blood work.

I am also grateful for my family and friends.

For those who visited me in the hospital.

For those who wore masks and gowns without complaint.

For those who tolerated me when medications made me hyper, irritable, or simply not myself.

I still remember some visits when I was on Voriconazole and felt unusually wired. A lady and I took a photo together. My eyes were wide open and I looked... different. The hallucinations were real during that time. I hope she understood.

To everyone who showed up, who stayed, who drove long distances, who sat quietly in a hospital room with me —

Thank you.

Jolynn

There is something that needs to be said clearly.

Throughout my entire journey, Jolynn was not only my wife. She was my caregiver, my advocate, and my protector.

She forced me to see my primary care doctor in 2011. I would not have gone on my own. I felt strong. I was active. Other than constant fatigue, I believed I was fine.

Absolutely fine.

That appointment flagged the abnormal blood work.

If she had not insisted, I likely would not have seen a doctor until it was too late.

When my counts continued to drop, she did not wait for referrals. She researched and contacted Johns Hopkins herself. She gathered my records and pushed until I was seen.

Later, I learned I had perhaps forty days left when my leukemia evolved.

If she had not acted when she did, I would not be here.

Inside the hospital, she acted as the “bad cop” when necessary. She protected my peace. She handled difficult conversations. She absorbed stress so I did not have to.

While I focused on surviving, she dealt with insurance, finances, paperwork, logistics, and the emotional weight of constant uncertainty.

There were also moments that were harder than most people realized.

While caring for me, she was navigating expectations and pressures from people very close to us who did not fully understand the medical reality or the emotional toll. She was given very little space to process what was happening.

She had spent years caring for others before and after my treatment. Yet when she needed support the most, it did not always come. What she carried was not always recognized or appreciated the way it should have been.

That experience still lingers with her.

Most people never saw what she carried quietly.

Without question, Jolynn saved my life.

My Donor

After the one-year anonymity period passed, we were allowed to connect.

She lives in Germany.

We began communicating by email. She writes in German, so we use translation software to understand each other. It may not be perfect, but it works.

We have exchanged photos. She sent me another card, which I still treasure.

She is kind.

I hope one day to meet her in person and thank her properly for what she did.

Her decision changed the course of my life.

Because of her, I am here.

Five years later, I live more simply.

I choose carefully how I spend my time.

I try not to postpone joy.

And I remain positive, not because everything is certain, but because I was given another chance to live it.