I injected my first dose of interferon at noon today. It was supposed to be 10am. I did some waiting, waiting, and finally checked-in at the front, being like did you forget me? I think they did. Here’s me with my little Michigan cherries cooler, part of a bday gift from my mom, with the Pegasys (interferon) vial inside, and wearing a hoodie to match the t-shirt I wore on my first MSK visit.

I’m also wearing a necklace from my mom, a necklace from Javi’s mom, special rings, a meaningful t-shirt, favorite socks, my crocs with my carefully curated jibbits, and new cozy sweatpants, with my two good luck rocks and San Fermin penny in the pockets. This all indicates it was a very important day for me, as I’ve been researching and considering about interferon for two years now. It indicates as well that I’m a big weirdo.

Two years ago at this time, I was on the same floor getting a bunch of tests and they were figuring out how to diagnose me. My full diagnosis is now CALR and TP63 mutant Myeloproliferative Neoplasm most probably (or most consistent with) Essential Thrombocythemia, with concurrent Hypereosinophilia. It’s a mouthful. I also have obstructive airways disease, with asthma-like symptoms, due to my high eosinophils (for at least four years until I started taking Nucala) causing permanent damage to my lungs.

Sometimes people cannot keep track of it, don’t understand it, and/or think whatever I have is not a big deal because I still look and act normal. (Big weirdo normal anyway.) I understand why this is, but it sometimes makes me feel really isolated. If you’re reading my blog though, the most important thing is you know where I am with dealing with it, not exactly what everything means. And I thank you for caring about me this way. It’s also hard for me that I haven’t found any other person, in the many international MPN forums I’m in, who also has combo MPN plus hypereosinophilia situation.

In the summer of 2023 I contacted Weill-Cornell Silver MPN Center for a second opinion. The new doctor’s bedside manner was really up my alley, so I went over there for care for about a year. At some point I realized she wasn’t part of Silver, and I didn’t have access to their team’s specialized care, which had been my goal. Meanwhile Dr. Rampal was running a clinical trial that looked promising to me. Ultimately I was not eligible for it, because I had not tried interferon yet. But last Fall I transferred back to MSK under his care, and he’s top of the top MPN specialists.

And now today I’m starting interferon. While I was waiting waiting to get called back for the injection, I got a voicemail and email from my insurance company Cigna. They denied Dr. VanderEls’ prior authorization request for Nucala. Le sigh. I do still have a refill coming from Weill-Cornell for next month. But it’s really annoying. Do they want my lungs or other organs to get more damage from my eosinophilia when I stop taking it? I sure don’t.

I found out a couple days ago something cool and memorable about today, and also a nice image slideshow feature about wordpress:

MPNs are rare disease (also rare cancer) and the holiday for rare diseases falls on Feb 29 or on Feb 28 if the 29th is not available. 🙂 Same as my first interferon day.

My disease profile seems extra rare with the eosinophilia and TP63 mutation, as neither of those are normally found. Nobody’s taking Pegasys and Nucala together that I’ve found. In a recent post I talked about my love of dates. So this means a lot to me I began treatment to fight back on my MPN today, in the best way the current research knows how.

Today I saw in a forum that 23&me is doing a rare diseases study including ET, and there’s a lot else going on research wise. As long as the presidential administration doesn’t destroy everything, which is actually a real concern (articles on collapse of NIH and NSF). In terms of equity, I’m at the top of the top of accessing the best care and access treatment. I’m very aware of that while it’s also still a challenge sometimes.

When I watched The Substance last weekend I had a lot of flash thoughts about my upcoming interferon adventure. Injecting the Pegasys with the syringe vs the Nucala pen was actually less painful because I think the needle is thinner. A little more complicated of course to draw the med into the from the tiny vial. Not rocket science, just need a steady hand.

Four hours post-injection I’m feeling a little weird, first kind of woozy, now transitioning to woozy and tired. It’s not particularly pleasant but it’s not terrible. I am trying to hydrate a lot as directed, just ate some Thai from our goto spot, and I’m going to rest more now. Side effects may get worse in the next couple days so I’ll update later.