“So I just kept breathing, my friends,
Waiting for some god to choose.
Saying ‘This ain’t the day that it ends,
‘Cause there’s no white light, and I’m not through.'"–George Michael, White Light

That first transfusion in the emergency room was during the first week of February, 2024. January had already been a miserable month for my wife and me. Our beloved dog, Monkey, had passed away just three weeks earlier, and the heartache was still very fresh and very raw.

For the next several months, I went through countless tests and procedures as the doctors tried to pin down the cause of my anemia. Compounding the problem was that I had a severe vitamin B12 deficiency, which they initially believed was the culpret. I started treatment for that in early March, but by mid April, as the anemia worsened, it was clear that it was not the source of my issue. So, in the last week of April, I was scheduled for a bone marrow biopsy.

A bone marrow biopsy is terrible. If you’ve ever experienced a spinal tap, it’s a little like that. My sample was taken via my lower back, just to the left of my spine. They make a small incision, drill into your bone, then stick a needle inside to extract the marrow. It is very unpleasant and just as painful as it sounds. And all of it was done before I’d even had my morning coffee!

The results of the biopsy–along with my cancer diagnosis–finally came back in late May, nearly four months after the anemia had been discovered. Part of what took so long is that MDS is extraordinarily rare in someone my age. It typically appears in those over sixty-five. I was nearly twenty years younger than that. As my hematologist put it, “It’s hard to spot a zebra when you’re looking for horses.” As has been the case with so many things in my life, I was an outlier. (This would continue to haunt me over and over.)

While any kind of cancer diagnosis can feel like a devastating blow, there was some good news. A stem-cell transplant to replace my marrow would, if successful, essentially serve as a cure. Although the procedure would have its own set of risks, I was young and otherwise healthy, so my risks were comparatively minimal.

Great, I thought. Let’s do that.

As the summer of 2024 unfolded, though, it became increasingly clear that there was a catch. As a very rare case–just forty-six-years-old and diagnosed with MDS–I had fallen into a sort of no-man’s-land. The type of MDS I have can be assigned a “risk score”. This essentially boils down to a measure of how imminent it is that the MDS will worsen from primarily causing anemia, to causing an aggressive form of leukemia. That worsening is inevitable, but people can live for years with MDS before it happens. My risk level was, and continues to be, low. But the anemia is, in my case, quite severe. I wouldn’t be able to live a normal life until the transplant, and the risks of the transplant would be fewer the younger I was when I received it.

But therein was the problem. I am a rare enough case that insurance companies, on the whole, haven’t written rules for what they will cover, and they don’t want to cover a stem-cell transplant until the risk of leukemia becomes much higher. That is because, for older patients, living as long as possible with the condition is generally preferable than the risks of the transplant, which, for them, are much higher than mine. As of this writing, I haven’t had the transplant I need.

And, yes, the fact that the United States does not have single-payer healthcare is barbaric.

Time for a related but slight digression…

The music of George Michael has been a tremendous part of my life. His songs have given me strength through the darkest times and been the sound track of my happiest days. No matter what I was ever going through, there was always a song that spoke to my heart in a way no other song writer’s could.

In 2011, George Michael became quite ill while on tour with pneumonia and was in a coma for a couple of weeks. He survived and wrote the song White Light about the experience, which I quoted above. After his heartbreaking and untimely passing in 2016, I hadn’t been able to listen to that song anymore. After more than seven years, I’d more or less come to terms with the fact that I might never be able to listen to that song again.

But the summer after my diagnosis, my feelings changed. I listened to White Light over and over, taking comfort in its message of resilience.