Recovering and Moving On

December 2012 thru January 2014

A Card from My Unknown Genetic Twin

At the end of December, I received a card in the mail from my donor.

Because of hospital policy, I was not allowed to know who my donor was for one year. Her name had been blacked out before the card reached me. From the handwriting, I could tell she was female.

I read the card over and over.

I am incredibly thankful that she was a match for me and chose to donate her bone marrow stem cells to save my life.

I plan to send her a card next August when we are allowed to communicate. I hope someday I will get to meet or speak with her.

On the front of the card she wrote, “Fröhliche Weihnachten,” which means Merry Christmas in German. Inside, she wrote in English. So I still have no idea where she is from.

But somewhere out there is the woman whose cells are now keeping me alive.

New Year Resolutions No More

One of my New Year’s resolutions was simple: stay well and avoid getting sick.

That resolution did not last even a day.

Right after the New Year, I started feeling lousy. It got worse over the next few days. On January 4, I went back to Johns Hopkins Hospital.

A CT scan of my head and chest showed pneumonia.

What I did not know at the time was that I also had the flu.

I ended up staying in the hospital for a week, fighting pneumonia all over again.

Another round of hospital food.
Another set of needles.
Another stretch of interrupted sleep from nighttime vital checks.
Another week of driving back and forth for my wife.

She had already been doing that for months.

I was frustrated. After everything in 2012, I was tired of adding more diagnoses to my already long list. I was even more tired of adding more medications.

That was the moment I decided I would never make New Year’s resolutions again.

I would just live.

Make decisions when I need to.
Deal with what comes.
Keep moving forward.

6-Month Post-Transplant Biopsy

Biopsy number ten.

This time, I received sedation with Fentanyl and Midazolam. I felt some stinging from the numbing shots, but that was about it.

Dr. Amy Sidorski performed the procedure.

Hat off to her.

As usual, we waited about two weeks for the results.

Because my donor is female, it was easy for the doctors and pathologists to identify the new cells by the presence of two X chromosomes. They could not find any of my original cells.

Everything looked good.

I was still in remission.

Missed Medication Is a Bad, Bad Thing

About two weeks earlier, I had asked my doctor to refill my Valtrex by mail. It was much cheaper that way.

By the time I ran out, the refill had not arrived. I called the office. My doctor assured me it had already been ordered and should arrive soon.

So I waited.

A week passed.

On Friday, I decided that if it did not arrive by Monday, I would just drive to Johns Hopkins and pick it up in person.

Unfortunately, Saturday night changed those plans.

While looking in the mirror, I noticed small reddish blisters on my lower right torso.

“What is this?” I asked Jolynn.

I could not feel them yet.

I took a picture and sent it to my doctor the next day. By Sunday, it looked worse.

On Monday morning, he replied and told me to go to the hospital to have it checked.

It was shingles.

The pain came quickly. Sharp. Burning. Itchy. Lying on my right side or putting pressure on the area helped a little. It felt endless before the pain finally became manageable.

All because I missed my antiviral medication.

Lesson learned.

Workouts

I improved a little each day.

One afternoon, I was walking with Ando to a store across the street from our home. A car came toward us, and instinctively I tried to run.

My mind was ready.

My body was not.

My legs did not respond. I fell forward, face down.

Luckily, Ando was right beside me. He grabbed me and kept me from hitting the ground hard.

That was the moment I understood.

I could not run.

My coordination was off. My leg muscles were gone. There was no strength behind my movements. My brain and body were no longer in sync.

I had to start from square one.

So I did.

I began lifting light weights, rebuilding what I had lost. The first time I attempted a bench press, I could barely lift 45 pounds — just the bar, no plates.

That was humbling.

I weighed 147 pounds, my lowest since ninth grade.

It was already halfway through wrestling season. I decided I was well enough to go out.

With my doctor’s approval, I attended a quad meet at Massanutten Military Academy on January 19 to watch Ando coach the Model Secondary School for the Deaf wrestling team. He had taken over my position as head coach while I was sick.

I could not just sit there.

I got up and started helping.

From that day on, I showed up at practice almost every day. I demonstrated techniques through Ando and my friend Tairbek Tabolov so I would not have to physically wrestle with the kids and risk infection.

Being back in the wrestling room helped more than any medication.

I worked out alongside them as much as I could. Slowly, I gained strength. By the end of the season, I could bench 135 pounds and had gained weight back to 155.

Around the same time, I became involved with USA Deaf Wrestling again. In June, I learned I had been selected to coach at the 2013 Deaflympics in Sofia, Bulgaria.

Life was moving again.

Moving On with Life

By March, I felt well enough to return to work.

I chose Friday, March 15, for my first full day back. Why a Friday? So I would have the weekend to recover if I needed it.

It turned out to be a smooth start.

I was surprised how much I still remembered and how quickly I could pick up my responsibilities again. I had missed my work. I had missed my coworkers.

Some people thought I was crazy for returning to work, coaching wrestling, and later traveling overseas for the Deaflympics.

I did not see it that way.

My doctor had cleared me after my first round of vaccinations at the end of July. I could not imagine staying in bed and thinking of myself as sick forever.

I had to move forward.

I traveled to Sofia, Bulgaria, and coached two wrestlers at the 2013 Deaflympics — Adrian Martinez at 60 kg and Andrew Patterson at 66 kg. Andrew earned a bronze medal.

I was proud of them.

In Sofia, I saw many wrestlers and coaches from the 2009 Deaflympics in Taipei. Several of them were surprised at how thin I looked. Some said I looked healthier than before.

Earlier that summer, I applied for the assistant wrestling coach position at MSSD. I was offered my former head coaching position back.

I declined.

I had accomplished what I needed to as head coach. It was Ando’s turn. Tairbek and I were rehired as assistant coaches.

It felt right.

We were back together again.

More Pains

Both of my big toes started hurting.

I asked my doctor about it. As usual, he blamed chemotherapy and suggested I see a foot specialist.

On August 14, I went to see one. Within five minutes, he diagnosed ingrown toenails in both big toes. He gave me numbing shots in both toes and returned fifteen minutes later to remove pieces of the nails.

It was not pleasant.

Walking on both feet afterward was even less pleasant.

I remember thinking, how much more pain can I handle? I still had another bone marrow biopsy coming up.

One afternoon, while walking to the Metro after work, I ran into someone I had not seen in more than ten years. He was excited to see me and gave me a big hug.

He also stepped directly on my freshly treated toe.

Ouch.

I did not react. I just smiled through it.

Thankfully, I was wearing comfortable shoes.

12-Month Post-Transplant Biopsy

Biopsy number eleven.

September 5.

I hated this one.

Dr. Murphy, my second fellowship doctor after Dr. Schweizer, performed the procedure. I was given a heavy dose of Ativan, but it did not seem to help.

It was extremely painful.

About halfway through, I suddenly lost consciousness.

The next thing I remember, I was waking up at home in our car.

I looked around and said, “Whoa. Where am I? What’s happening?”

Jolynn told me I had been awake and talking the entire time. She said I was in pain during the biopsy, answering questions, and even interacting normally.

I do not remember any of it.

That part was unsettling.

Two weeks later, the results came back.

Everything was clear.

I was still in remission.

Less-and-Less Infections

Over time, the infections became less frequent.

I dealt with bacterial folliculitis, C. diff, stomach pains, runny nose, ear infections, and more. I was on many antibiotics.

Because of my constantly runny nose, I could barely smell anything. Food did not taste the same.

Still, it was nothing compared to what I went through the year before.

I could not complain too much.

My immune system was slowly rebuilding.

I am currently taking Valtrex 500 mg once a day. After the shingles episode in the spring, my doctor recommended I continue it for another year.

With my doctor’s approval, I began wrestling with the kids again in November. So far, I have not developed any skin infections or become seriously ill from it.

I gained more weight.

I gained more strength.

Recovery takes longer than I expected. I am not yet back to where I was before.

I recently ran a 5K in the “Run into the New Year 2014” race in Tulsa, Oklahoma. I finished 13th place. In 2011, I had finished 3rd.

This time, I was simply grateful to finish.

In other words, I was grateful to still be alive and able to run at all.

I keep telling myself that I will be stronger and better than ever very soon.

Iron Overload

My ferritin level had been high since April 2013.

Because of the many blood transfusions I received during treatment, excess iron had built up in my body.

Last fall, additional testing confirmed iron overload.

On November 14, my doctor recommended starting treatment with Exjade.

When we met again on December 6, he carefully explained the risks.

Without treatment, the excess iron could damage my liver over time.

With treatment, there were possible side effects affecting the kidneys and liver. If the medication did not agree with me, it could cause serious problems.

I thought about it for a while.

After everything I had already survived in 2012, this decision felt manageable.

I decided to move forward with the treatment.

If I started Exjade, I would need weekly blood tests to monitor my kidney and liver function and stop immediately if anything looked wrong.

I gave my doctor the green light.

But I never received the medication.

Insurance delays and special authorization forms slowed everything down. I was supposed to start in mid-December, yet nothing arrived.

Exjade Treatment Cancelled

Today is January 13, 2014.

It turns out the delay was a blessing.

My ferritin levels continued to drop on their own.

Last spring, they were over 2,000. A few days ago, they measured 1,300. The normal range is roughly 20 to 300, so I am not there yet, but the trend is heading in the right direction.

Because of that improvement, my doctor decided to cancel the Exjade treatment.

For now, we wait and continue monitoring.

After everything that happened in 2012, I have learned that sometimes the best plan is patience.