The Cost of a Cure: No Refunds (Part 1)

Written By J.T. Oden

There are some purchases in life that come with a return policy.

If something doesn't work the way you expected, you take it back.

If it breaks, you exchange it.

If you regret the purchase, you ask for a refund.

Bone marrow transplants don't work that way.

Whatever happens afterward becomes part of the deal.

For most of my life, sickle cell dictated what I could do, how I felt, and how much uncertainty surrounded my future. When the opportunity came to undergo a bone marrow transplant, it wasn't simply another treatment. It was a chance to change the course of my life. Looking back now, I realize the transplant wasn't the end of my story.

It was the beginning of another one.

Chemotherapy.

My skin reacted first, progressing quickly into scabbing and peeling across much of my body. I went from looking like I had severe road rash to a toastier version of an unmasked Deadpool.

A small price to pay.

So far.

Next came radiation.

Within a couple of hours, my resting heart rate climbed from its usual 70 beats per minute to over 100, sometimes reaching over 130 while I was doing nothing but lying in bed watching TV. Blood pressure, which had never been much of a concern before, suddenly demanded everyone's attention.

Heart rhythm meds entered the chat.

Thankfully, they did their job, and everything eventually settled back down.

They were temporary.

Still worth it.

Just as recovery seemed to be moving forward, everything changed.

Stroke

About two to three months into the transplant, as I began to engraft, complications involving my central line allowed air to pass through a previously unknown hole in my heart. That caused a seizure, which ultimately resulted in a stroke.

When I fully woke a day or two later, I discovered the left side of my body was no longer moving.

Before then, I'd always assumed paralysis meant the complete absence of feeling.

It doesn't.

As I was transferred from my ICU bed, the nurses lifting me triggered a deep, crushing pain in my hip. A lot like a bone infarction I had suffered years before on the other side.

Learning to walk again had just become part of my recovery.

My family hates that I find this next part funny, so... sorry in advance.

Physical therapists have technical names for the way I walked.

I called them my "splash steps."

If you've ever watched a toddler splashing bathwater, picture their little arm as my left leg and you've got the general idea. Every step ended with my foot slapping the floor with all the grace and precision of a two-year-old discovering cause and effect.

Over time, I regained the ability to walk and use my left arm and hand. Neither has returned exactly as they were. Reduced coordination, numbness, and spasticity remain constant reminders of what happened.

The left hip is still a source of chronic, spontaneous pain, though I still don't have an official explanation for why. Whether it's related to radiation, previous damage, or something else entirely, it's another reminder that not every question receives an answer.

Post Stroke Brain

Some of the longest-lasting effects weren't physical.

The stroke changed something much harder to describe.

Over the years, my motivation quietly disappeared.

Hobbies I once loved sat untouched.

Leaving the house felt like more effort than it was worth.

Writing was something I'd wanted to do for years, but wanting and doing became two very different things.

I spent a long time believing I could simply push through it if I tried hard enough.

Eventually, I had to admit that determination wasn't the missing ingredient.

The stroke changed more than the way I moved.

It changed how I thought about myself and the world around me.

That's a much bigger story than this entry has room for, but it shaped the years that followed every bit as much as the physical recovery did.

Only recently did I become open to medication.

Neurological medication to improve my walking.

Antidepressants.

Still a trial-and-error thing.

I still have times when my leg wants to do its own thing.

And my mindset is still not where I know it should be.

But there’s enough progress that this blog finally exists.

Ironically, The Resilient Weasel is here because of that decision.

Final Thoughts

People often imagine medical success stories as clean endings.

The procedure works.

The patient recovers.

Life returns to normal, or better.

Real life has been more complicated than that.

The transplant stopped the disease from continuing down the path it had followed since I was born.

That doesn't erase everything that came before.

It doesn't undo years of damage.

And it certainly doesn't erase everything that happened afterward.

Sometimes I joke that the transplant cost me an arm and a leg.

There's more truth in that joke than I'd like.

Still, I don't spend much time wondering what life would have looked like if I'd chosen differently.

There isn't a refund department.

There isn't another version of my life waiting on the shelf.

There's only this one.

Seven years later, I'm still learning what to do with it.

If life came with receipts, mine would have one line printed clearly at the bottom.

No refunds.