Life with myelofibrosis means heightened sensitivity to change

Living with myelofibrosis (MF) can have perpetual ups and downs. Even when well managed, it is a condition that is chronic, and typically changes over time. So what happens when we’re sailing along, doing well and — wham! — we experience a scare?

Welcome to my week. It might seem ridiculous how worked up I got. How a simple, ultimately unrelated issue had me spiraling into an OMG moment. Could my MF meds that have worked so well for six years no longer be enough to control my blood counts? Or could my disease be progressing?

While it might seem ridiculous, in fact it is not. I looked up my symptoms of unexplained fresh blood in my ears and sudden hearing loss — first two weeks ago in the left ear, then a few nights ago in the right ear.

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I went to two reliable sources. Both said bleeding in the ears could be the result of a scratch. But I didn’t remember scratching the inside of my ear, and it’s a bit coincidental for this to be true of both ears.

I also read that for people living with MF, it could be a sign of platelets not functioning properly or not clotting, not to mention the rare possible occurrence of a brain bleed, a precursor to a stroke. From someone who has lived through both life-threatening blood clots and hemorrhages, concern began to envelop me.

Both sources recommended going to the emergency department. I chose not to, knowing that early the next morning I was gratefully on my way to my regular appointment with my hematologist/oncologist, who is an expert in myeloproliferative neoplasms, including MF.

For someone who likes to talk (and write) about living without worrying about what might be next, I was worried. I was so sure that I would spend the entire day in the hospital having tests, maybe a brain scan to rule out bleeding, and maybe a bone marrow biopsy to be sure my MF hadn’t progressed.

I was so convinced that this would be my day (and maybe my evening) that I packed a backpack full of essentials. I even made sure a loved one could get into my home if I couldn’t get back right away and needed something. Now that is truly spiraling.

In the end, my platelet count is right where it usually is, fluctuating just below normal to low normal. My hemoglobin is just under 10, also in the range of “my normal.” There is no evidence at all that this condition is related to MF.

The truth is that it is naturally occurring accumulated hard wax, which as it moved must have scratched the inside of my ear (each ear at different times) and caused bleeding. There was never blood pouring out or even trickling out of my ear — just enough that touching it showed evidence of fresh blood.

So, just now, I began to write, “In retrospect my spiraling was a crazy overreaction.” Then I deleted it. Why? Because it is a simple reality check.

Yes, thankfully it was nothing, and the contrast between what I was thinking and the simple explanation of what was really happening was laughable. But in actuality, it is a very real example of how we live with the knowledge of our potentially changing MF journey, even if we keep it in a symbolic closed box, to be opened only when necessary.

That was yesterday. Today, I am back to myself, living as my best self. Tomorrow? Well, it will be what it will be, hopefully with no more drama for a while.

Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.