We debate what to share and how to share it and whether we should share anything at all. We rock between it's none of your business (because it's not) and why not reach out to our community for support and connection? Our family and few close friends already know I'm sick. They know I don't go out at night because I'm sleeping, that if anyone has a cold they're to stay away from me, that big or small trips are often beyond my physical capabilities, and that while I love them, I don't have a lot of time to reach out like I once could.
Not so long ago I kept a more public record of my health problems, recording doctor's appointments, tests, procedures, and struggles. Since getting off what Gabe and I have come to call the Diagnosis Treadmill at the end of 2016, we've been focusing on how we can live well within the boundaries set down by my illness. At that point it looked like Endometriosis was the only diagnosis I could definitively have, and my primary care provider added "Chronic Fatigue Syndrome" to my medical records as my temporary catchall.
It took us five years, but we've come to a place where my illness doesn't entirely stop us from pursuing our passions and living a full and satisfying life. It's exhausting to be sick all the time without ever knowing why. It wreaks malicious havoc on any plans or dreams you may desire.
And my symptoms are insane. All-over-the-place insane: chronic fatigue, unrefreshing sleep, messed up blood counts, legs so itchy I literally tear my skin apart, ocular migraines without a discernible trigger, leg weakness and full on loss of feeling, frequent colds and infections, severe food intolerances, GI distress, dizziness, unexplained nausea, occasional slurred speech, constantly enlarged spleen, joint and bone pain without swelling, fevers, canker sores the size of dimes down the back of my throat, easy bruising, slurring words, and anemia.
Gods, writing all that makes me feel like I should be doing quite poorly, but these past five years we've changed our lives so dramatically that we now manage each and every symptom on that list as best as we can. We're real life superheroes like that.
Which is why I know we can handle my real diagnosis. Because we finally have one.
It turns out that I have a rare orphan blood cancer, a Myeloproliferative Neoplasm (MPN), that usually strikes people 65 years and older. Gabe doesn't call me his unicorn for nothing.
Within the MPN classification their are three blood cancers: Polycythemia Vera, Essential Thrombocythemia, and Myelofibrosis. The first two do not generally shorten a person's lifespan and while they are not curable, they can be treated with chemotherapy drugs so the symptoms (you saw that list above, right?) can be handled. The third is a decade-long (if you're young and lucky) death sentence whose only cure is a bone marrow transplant with a less than 30% success rate at the top transplant hospital in the world.
I'm now a patient at Seattle Cancer Care Alliance where I see one of the few Myeloproliferative Neoplasms (MPNs) specialists in the world. We believe I have Essential Thrombocythemia (ET), and today I had a bone marrow biopsy to confirm this diagnosis and rule out Myelofibrosis (MF).
Essential Thrombocythemia (ET) has a treatment, a chemotherapy drug called Pegasys (how hard we laughed to hear it's name), which may relieve all of my symptoms. ALL of my symptoms. Except my food intolerances, as those autoimmune-related.
My test results come back next Thursday, so we'll have our specific diagnosis then. But already knowing I have a blood cancer has made our outlook a lot more positive. It was incredibly hard on us for me to have been sick for so long without any answers. Now I not only have answers, but a treatment plan.
I'll have to be on chemotherapy for the rest of my life to control the proliferation, but I'll most likely live out the rest of my expected lifespan if it's ET. That's pretty amazing. And because men are affected by this blood cancer, too, there's a ton of funding and research being done into MPNs -- unlike Endometriosis, which I also have. (I just concluded a six-month course of chemo to get my most recent bout of Endometriosis into remission this past July. In January of 2016 I had to have an unexpected surgery to remove a lemon-sized Endometrial cyst that had grown from nothing in the course of three months).
If I end up with a diagnosis of MF, we have options there, too, but that diagnosis is incredibly unlikely.
So here's a link to learn more about ET, if you are so inclined.
After you read that you'll want to know that I am positive for the JAK2 mutation, which leads to poorer prognoses but can still be managed. The biggest threat to my health is thrombotic episodes (stroke or blood clot, specifically), and I'm on baby Aspirin to help reduce my risk. The chances of my cancer evolving into another MPN or leukemia is low, but does increase with age (as do all risks of illness, genetic mutations, etc.) -- and think geriatric age.
If I have ET, Gabe and I will learn how to give me the chemo injections (Pegasys!) this coming Thursday. I'll need to give myself injections every week for the rest of my life until there's a cure. While I'm definitely not looking forward to it and have to discard my fear of needles, I'm more than willing to learn. I'm so excited about the prospect of regaining even part of my health, because no matter how well we've handled my five-year illness, it's been hell to deal with all of it. And now we have a chance at better. Finally.