Good Journey [Josh de Lioncourt]

I recently read the novel Never Flinch by Stephen King. There’s a character who undergoes an extraction of a molar for more or less the same reason I’m about to. I found this both amusing but also oddly comforting. (Although, since the character in question was the serial killer the detective protagonist was trying to hunt down, it was maybe a little disconcerting, too.)

In the immediate aftermath of my MDS diagnosis, stress levels were very high for my wife and me. I’m sure nearly anyone who has had to process the shock of a catastrophic diagnosis has felt the same way. In my case, my brain decided that it would deal with this, in part, by clenching and grinding my teeth while I was sleeping. This is not a good thing to do.

I’ve been fortunate throughout my life to have good teeth. I had never had a cavity, hadn’t needed braces as a kid, and in general had never had any dental-related issues whatever. My luck, as with so many things over the last couple of years, ran out.

Long story short, I cracked one of my molars. I already had some pain from the clenching/grinding itself, so I didn’t realize I’d cracked it initially. By the time I did, my first-ever cavity had formed inside the crack and essentially hollowed out half of the tooth until one side broke off.

The tooth itself would need to be extracted, but since it wasn’t causing me any pain and I’d largely gotten a handle on the clenching/grinding issue, it wasn’t a high priority–and not an emergency in any case. I had bigger fish to fry (like dealing with my anemia).

Well, the time for dealing with it has arrived. With the transplant looming, I have to undergo several tests to check for potential areas where complications could arise. One of these is clearance from my dentist. The initial stage of the Stem Cell Transplant consists of intense chemo which, in essence, destroys my existing bone marrow to make room for the new marrow to supplant it. This will include wiping out my immune system. As a result, for at least a few months, I will have to work very hard to avoid any kinds of infection–a common source of which are dental issues. The upshot of all of that is that this tooth, though it still isn’t bothering me or causing me any problems right now, has got to go.

The appointment for my dental clearance a couple of weeks ago went well, but to complete it, I was referred to an oral surgeon to have the tooth extracted, which was entirely expected.

Yesterday, I met with the surgeon. He and his staff were fantastic, and his nurse just happened to have worked in oncology for fifteen years, so she was very familiar with what I was explaining about my situation. They all managed to go a long way toward making me feel much more comfortable with the surgery–the first dental work I have ever needed.

I have to admit, there’s a tiny part of me that’s a little sad to be losing a tooth after a lifetime of having all my teeth–even sans fillings! That’s ludicrous of course, considering everything else I’m currently dealing with. I’ve made peace with it though, and some time in a year or so, after the transplant is behind me, I hope to have the tooth replaced with an implant. For now, though, the focus is on next week, when the damned thing will finally be yanked out.

In the end, this is a small step in my SCT journey. I know it’ll be much less terrible than my brain keeps telling me it’ll be. Maybe if I tell myself “Never flinch”…

“Let me tell you a secret,
Put it in your heart and keep it,
Something that I want you to know.
Do something for me
Listen to my simple story,
And maybe we’ll have something to show."–George Michael, Heal the Pain

It’s been two years and two days since the saga of my MDS began. There have been a lot of ups and downs through that time. During my first hospitalization for anemia, I was just terrified–all the tests they were doing were looking for internal bleeding. (Not what you want to hear.) Then there was relief, when they thought my B12 deficiency was the cause. Next came a resurgence of anxiety when that turned out to not be the case, and the tests became both more invasive and scarier to contemplate.

Once the diagnosis came in, and I learned that a Stem Cell Transplant (SCT) would be the cure, things settled down for a few weeks. For a brief time, I felt like I could get through this; I’d have the transplant and be back to my old self again. (Spoiler: it wasn’t that easy.)

The first major blow came about six weeks after the diagnosis. I was a unicorn–MDS is a disease of the elderly, and so rarely impacts the young (or at least middle-aged), that insurance companies have largely not written rules for what to cover in a situation like mine. It turned out that my insurance wouldn’t cover the transplant until my risk factor for it imminently becoming leukemia was higher than it currently was. (In America, our insurance dictates your healthcare, not healthcare professionals. That’s something conservatives really hope you don’t figure out, and certainly will never address.) So all I could do was wait.

Waiting was hard and brought on its own set of anxieties. There was always the chance that it could turn into leukemia before they could do the transplant. For another, the older I got, the more potential risks and potential complications there would be when having the transplant. Added to all of that was a constant rollercoaster of ups and downs with the anemia. Some days, I might be feeling almost normal; others, I’d hardly be able to walk around the house.

Acute anemia is not fun. Given my sex, height, and weight, my hemoglobin should be around 15 g/dL. Where I actually have been over the last two years is in the 5-8 range most of the time, with occasional bumps into the 8-10 range. When your body only has half (or less) of the blood it needs, there are all kinds of adverse effects. Your heart rate and breathing tick upward, sometimes quite a lot if you exert yourself even the slightest; it feels like running on a treadmill all the time. You get muscle cramps. You suffer fatigue, headaches, and other symptoms. Living day-to-day involves constant management of your energy and activity. And, of course, all of that has its own mental and emotional toll.

When you’re in a situation like mine, you just look for ways to get through, and humor has often been one of those ways for me. Weird Al’s Living with a Hernia, a parody of James Brown’s Living in America, became Living with Anemia in my head. Countless transfusions, including one on Halloween, led me to joke with the nurses that I was the vampire Lestat or an overgrown mosquito. Whatever works!

Last year, through a combination of America’s unconscionable health insurance industry and the monstrous policies of the current administration, I lost my coverage. I scrambled to find something else, and although it’s nearly five times more expensive than what I had before, at least I have it now, thanks to the Affordable Care Act. (No thanks to the GOP who continue to try to destroy that lifesaving piece of legislation. It may not be perfect, but it is a damn sight better than what came before it.)

Despite the stress of losing my insurance and the mad scramble to get new coverage, it turned out to be a blessing in disguise.

Simaltaneous with losing my coverage, the treatment for my anemia changed. The initial treatment I’d been getting since May of 2024 was no longer working. The new treatment was both mind-bogglingly expensive and very hard on my system, particularly through the first two months or so. In an eight week span, I needed ten transfusions to keep me alive. Just as the first of the year arrived, I contracted CoVid, which not only laid me up in the hospital for several days, but also necessitated four more transfusions in a forty-eight hour period. After hearing about all the vulnerable people we needed to wear masks to protect during the darkest days of the pandemic, I was now one of those people. I had understood and consistently masked during those days; I now had an appreciation for it on a whole new level.

About a week after I was discharged, I had my scheduled appointment with the specialist in charge of case, and who would be overseeing my eventual transplant. With the change of insurance and the complications with my anemia treatments, he thought he could make a case to the insurance company. He didn’t seem particularly optimistic that they would approve me for the SCT, but he would try anyway.

Just over a week later, I received a call from his office. The insurance had approved the Stem Cell Transplant, far faster than I would have ever imagined. There was finally hope on the horizon–but I still had a long road ahead. There are many tests I have to pass before the SCT, and though it has only been two weeks since I got the call, those tests have already begun.

I had no idea when I started this blog that the transplant was so close. I thought it was probably still years away, not mere months. The ordeal of the SCT will be long, and the recovery longer still. But I’m finding that writing about it is starting to help. Thank you for reading, and for your support. There is much more to come.

“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.

“And like all good men who swim too well, it takes all that I have just to cry for help”–George Michael, To Be Forgiven

It’s hard to talk–or write for that matter–about my condition. In the beginning, I thought to keep its existence confined to a relatively small group of friends and family. In fact, I’ve maintained that up until recently, when the circle of those who are aware of what I’m going through has been slowly expanding.

There were many reasons for this; at first, it was that I needed time to process the diagnosis (and the implications of it) myself. I also didn’t want to worry more people than I absolutely had to. But then my feelings became more complicated as, within weeks of my diagnosis, a dear friend passed away from cancer quite suddenly, and he was nearly ten years younger than I was. That brought an excruciating new light to my situation. Within just a few months, another friend had also passed, and I hadn’t even known he’d been sick. It was all a lot to absorb.

The condition I have is called Myelodysplastic Syndrome (MDS). It’s a form of bone marrow cancer. In the simplest terms, my bone marrow is failing to produce enough blood, making me extremely anemic. In all likelihood, I had this condition for many years before it was finally caught when the symptoms of the anemia became pronounced enough to notice. Even then, they may have gone ignored longer; as the anemia had worsened, my body had worked very hard to adapt, and even when I had reached a critical state, I wasn’t feeling so bad that I realized anything was seriously wrong.

What probably saved my life was that I was at an appointment with my doctor to get the final approval for hearing aids. (More on that another time.) I mentioned, almost in passing, that I hadn’t had as much energy as usual the last few months and that my heart rate had been up a bit. She said I did look a little pale and that I should come back the next week for a blood test. The test showed that my hemoglobin was critically low, and they sent me immediately to the emergency room. I spent the rest of that day receiving the first of dozens of blood transfusions I would continue to get over the coming years.

Small steps. For now, I’ll leave this here.