Rare and Resilient

I am taking a powerful chemo drug for a rare and chronic medical disease that nobody has ever heard of. I feel like talking about this now because February is Rare Disease Month. Who knew?!?

In my case the condition is Myeloproliferative Neoplasm or MPN. Specifically, it is JAK-2 thrombocythemia. I refer to this as a “small c” cancer of the blood. My bone marrow is producing way too many platelets putting me at risk for heart attacks, strokes and other more serious conditions.

This condition is quite rare. There are only about 20,000 people in the US diagnosed annually and not more than 250,000 with this nationally.

Prior to diagnosis I was experiencing things like fatigue, itchy skin, night sweats, headaches and difficulty eating. None of these seemed related or of particular concern. Now I know that these are all symptoms of MPN’s.

What led to a diagnosis was a doctor who noticed increasingly high platelet counts that showed up on a standard CBC blood test. This resulted in a referral to a hematologist/oncologist, a bone marrow biopsy and finally a diagnosis. I will be grateful to Dr. Oyer forever for paying attention to the blood test data.

The bone marrow biopsy revealed a JAK-2 mutation. Honestly, I am not sure what this means other than to say that it pushes my bone marrow into overdrive. The research does not yet have an answer to why this happens. There isn’t a cure either.

Now I meet with a hematologist/oncologist regularly. I said to him that I had never given my blood any thought at all. I have a genetic connection to breast cancer and I pay attention to the regulars like cholesterol and blood pressure but never gave my blood a second thought. He has assured me that I will not die from this disease, rather I will die with it.

Now I know a number of people with this condition and others who are living through far more serious blood diseases like Multiple Myeloma and Lymphoma which are Big C Cancers. 

So, I take a chemo drug called Hydroxy Urea which I will probably take for the rest of my life. After three months I really don’t feel any negative effects other than thinning hair. I can live with that. I am grateful for all of it. Grateful for a diagnosis, for good care from my treatment team and kind support from family and friends.

Resilience for me is not being overly focused on this disease. It is not my identity. Resilience means managing the symptoms, doing what I am advised to do and remaining hopeful that things will remain ok. And for today, they really are ok.