It’s been more than two months! I am ashamed. It’s all down to the fact that I really don’t want to regret what I write. I’ve actually been working on this post for at least a month, trying really hard to make it continuous and fluid and a thing of beauty and a joy forever, but that’s clearly not happening, so I gave up and posted this instead.
On My Health
A lot has been happening, and at the same I haven’t had much to report. I went to my regular doctor, who helpfully told me that she didn’t think my diagnosis was right and that there wasn’t really anything wrong with me. We had this frustrating conversation where she repeated everything I said back to me as a question, like so:
Her: So your migraines are better, right?
Me: “No, they’re actually getting worse.”
Her: “They’re getting worse?”
Me: “Yes. I’m having them basically every day.”
Her: “You’re having them every day?”
Me: “Yes. And the medicine isn’t helping.”
Her: “The medicine isn’t helping?”
When I convinced her it wasn’t, she gave me some new medicines. And then she gave me this gem of life advice: “It can be really debilitating to have migraines every day.”
You don’t say! I mean, I’ve been having these headaches since I was in kindergarten, and I knew there was something about them I just couldn’t put my finger on…that must be it.
This could explain so many things: why I have to wear big sunglasses indoors, why I sometimes can’t see out of my left eye, why seeing the second “Hobbit” movie was such a terrible experience (Oh, wait. That one’s all down to the movie. The level 9 migraine I had was a pleasant distraction from the wholesale butchering of a beloved story).
Still, having the doctor explain that my migraines are debilitating has cleared up a lot of confusion in my life. Alas, the new medication isn’t helping, so I’m still having the migraines. At work we had a “beach party” meal for the students recently, so that was nice because I could wear my sunglasses for most of my shift and everyone just said, “ooh, beach day, nice shades!” while I tried to avoid the fluorescent lights like Gollum avoids the Yellow Face.
Anyway, the doctor’s “it’s not ET, there’s nothing really wrong with you” kind of threw me for a while, and I was mildly panicking because I appreciated having an answer to my health problems, I didn’t want to get something even worse, and also I felt that it would be very awkward to write a blog post that basically rescinded everything I’ve said thus far about my health. But as my dear friend pointed out to me, no one would be angry at me for NOT having blood cancer. At the same time, though, it was nice to hope that they were wrong and I wouldn’t have to deal with this for the rest of my life.
As it turns out, I do have ET.
I went to my normal cancer clinic to see my cancer doctor, who passed along the message that the hematopathologist who reviewed my case at the research hospital confirmed his diagnosis of Essential Thrombocythemia. So that’s the triple diagnosis of my regular oncologist/hematologist, the Mayo Clinic, and this fellow from the research hospital versus my regular doctor. I’m going with the specialists on this one, folks. I know, I’m a risk-taker.
So nothing much has changed. I’m at around 1,100,000 platelets per microliter of blood. When I get to 1,500,000 I will talk treatment options with my cancer doctor and start chemo. I have roughly 0% of an idea of how that will go. I wish I did, but everything is really uncertain in my life right now, except for the fact that I do indeed have ET. That is pretty firmly established.
Fun fact: my cancer doctor told me that the hematopathologist who looked at my slides is the guy who “literally wrote the textbooks” on the topic, and is one of the best in the country, apparently. That’s oddly exciting. This is my life now; I get super pumped when cool doctors with titles like “hematopathologist” are even briefly connected to my bizarre health situation. It’s weird to think that there are several people who are intimately familiar with a sample of my bone marrow but who would pass by me on the street without having any idea that I belonged to those samples on a slide.
As my friend at church so aptly pointed out, I picked a really great season in which to get my license (sarcasm). But I think that summer will be a breeze comparatively, so there’s that. But if you would like to, feel free to close your eyes for a minute–figuratively speaking, as you will not be able to continue reading if you take this literally–then picture me in my poor little car on the highway. It’s kind of like a looped replay of that scene in Robin Hood where Prince John is running ahead of the hippo and rhino guards, and then they overtake him and trample him in the mud.
I drive as exactly at 55 mph as possible, because nearly all of the things I can think of that are more frightening than getting pulled over by the police are sci-fi things that will never happen to me, like getting stranded in a parallel universe or being taken over by Asuran nanites. Everyone gets super annoyed and honks at me a bunch, then they pass me and speed into the sunset. But I haven’t gotten a ticket yet, so all in all it’s working out pretty well so far.
What did happen is that my car died on me, which just proves my belief that we should all go back to horses, which are cooler, nicer, and don’t have to be hooked to another horse to get started in the morning. Happily, I have friends who are willing to drive long distances to jump said car, as well as a wonderful boss who is willing to go way out of her way to give me a lift to work. Sadly, the car incident coincided with the weekend preceding Overthrow of Sauron Day, so I couldn’t get to a real store for the supplies to make the Mount Doom cake I was planning. This turned out to be okay because shockingly not everyone else in the world is as committed to celebrating Middle-earth holidays in the middle of the work week. Amateurs.
Despite zero tickets, a firm diagnosis, and the downfall of Sauron, I’ve been having a difficult time the past few weeks. Thank you so much for your prayers and encouragement.
I am having to come to terms with the fact that I do absolutely have to make space for this massive thing that I don’t want to deal with but will have to deal with for the rest of my life. I can’t imagine how people do it when they have more intense chronic illnesses than I do, because even with this relatively mild diagnosis I feel like I’m going to lose it. I do know from experience that it will become easier, less intrusive, over time. Still, I’m not quite sure how to handle life right now.
Some part of me was hoping the research hospital would say it was all a mistake, and that part is obviously gone. I feel overwhelmed and exhausted by wondering and waiting and hoping. And I think that to some extent I’m grieving for a future that is going to be significantly different than I hoped it would be.
Please keep praying for me.