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Schrödinger’s Cancer

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I was recently diagnosed with a blood disorder called polycythemia. This was after years of trying to get doctors to take how I felt seriously and believe me, that could be another entire post by itself. If you’re a woman in the US you know exactly what I mean.

Short version: Polycythemia is a condition where my bone marrow is making too many red blood cells. There are a couple of types (broadly speaking): Primary and Secondary. Secondary is polycythemia caused as a result of other conditions, and is by far the more common type. Primary (Polycythemia Vera, or PV) is a type of blood cancer, and is more rare. In general, both are considered rare.

And so, until we determine which type I have, I’m existing in that strange space where it feels like I both do and don’t have cancer.

Schrödinger’s Pollywogs (of blessed memory)

Regardless of which type I have, it still has to be treated. Untreated, this condition can massively elevate your risk of stroke, heart attack, embolism, et al because the excess red blood cells (and consequently, elevated hemoglobin and hematocrit) thicken your blood and increase your chances of clots. The two types have slightly different (albeit somewhat overlapping) treatment protocols, aimed mainly at minimizing the effects. As blood cancers go PV is highly treatable, but it will kill you in about 1-3 years if untreated. It can cause conditions where your bone marrow becomes scarred and unable to create proper red blood cells at all, or in rare instances can progress to more serious forms of leukemia. Treatment is pretty accessible, at least, so regardless of which type I have treatment won’t be a problem.

I have an appointment with a hematologist oncologist in June (soonest I could get). In the meantime, though, I have to start taking steps to manage the condition. There’s medication (this condition elevates your uric acid levels) I’m now on, and there’s dietary changes (have to reduce foods high in purine, which are some of my favorite foods dammit). While I’m not QUITE in medical appointment hell yet I have had a metric fuckton of tests to rule other conditions out (which have all so far been ruled out). X-rays to see how much the acid levels have deteriorated my joints (Some, not drastically or severely). I can no longer have alcohol (not that I drank much anyway but still). I can no longer donate blood. Lots of little impacts that in the aggregate feel huge.

I have to start making changes now, even though I don’t have a final word yet on which type I have. I have to live my life as though I do have this cancer, but I’m not yet on the more aggressive treatments done if it’s cancer. There will be more bloodwork and some potentially painful diagnostic tests before we arrive at a conclusion. A bone marrow biopsy will be the proverbial “box” that, until we open it, we won’t know which is which.

I am not looking forward to this.

What gets me with this is I’ve had the high blood counts for 5 years already. At least, that is – the primary care doctor I had before switching to the office I go to now didn’t really do CBC type bloodwork on me, and dismissed it when I talked about pain and fatigue (like he dismissed everything else I tried to talk about with him – this is the same doctor who let me walk around on a fractured foot for six months because he kept insisting it was “just a sprain”). When he retired and I switched to the office I’m at now, my new PA caught that right away and flagged it to watch. She also seemed more interested in addressing the pain and fatigue and some steps were taken to address that (also not relevant here, but I mention it to highlight the difference).

Recently she left the practice to work closer to her home, so I was transferred to another provider at the same practice. This is the provider who decided to investigate the blood thing more aggressively, and the battery of tests she ran underscored that the high blood counts were cause for concern. I’m glad, and I appreciate her efforts but you know… we shouldn’t have to be grateful and relieved to be given basic fucking consideration in health care settings. The fact that my new PA did so and it’s rare enough to really stand out is a hell of an indictment of the US health care system. Again, fodder for another entire post.

In the meantime, I’m putting energy into self-care. I have a good emotional support system. I have snuggly cats, and friends who make me laugh. In the end that’s all any of us can really ask for.

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