Guess what today is! MPN Awareness Day!

Cool infographic right! I will reference this more later.

It’s been over six months since I posted. There were several things I’d wanted to update on over time that I missed, conceptual things, but also a few dates that mattered: most recently, 8.8.26, because it’s simply great, 8.28.26, because it was six months from my prior post, and my birthday, even.

The previous birthday, a year prior, was a good one for me number-wise. A little later I posted a year ago, in fact, marking same as today, for this same MPN Awareness Day occasion. Then, on September 24th, things went downhill with a fast infection. This year’s birthday, the number went flipped from the good number, away, and this whole bad year was gone, so fast but also very slow. A blur, and a slow burned out slideshow carosel that belongs to someone else and you are forced to watch with unclear end of that rotation. A bit low-key but excruciating.

I haven’t been having a lot of updates that are wildly interesting, and while that’s good, it comes with its own isolation. My work has been crazy, and my fatigue has also been bad, and I’ve been devoting all of my spoons to work, whether that’s great or not.

The most random significant but most mundane report is that I got a little cuticle tear when I trimmed my nails for graduation events in May. It went awry, an infection that ended up encompassing my entire fingertip. I had a hand surgeon and infectious disease intervention over months, took an intensive amount of antibiotics for it, twenty-five days, twenty of those on two types, two times a day each, extra-strength types, two courses. It eradicated all my good bacteria, so I got sores in my mouth I’m still recovering from.

My finger healing is still stagnating. But who wants to keep hearing about my finger well after the whole summer is over, orientation and the school year restarted, seriously. It’s boring, it looks normal now to a non-medical eye, but it hurts me all the time, every day. The soreness in the whole fingertip is exacerbated by use. It’s deep and profound and honestly scary. Right now, as I compose this with my voice, I’m trying to give it some rest, finger iced and wrapped. Lowkey, excruciating.

Dr. Vander Els retired earlier this year. He’s the MSK pulmonologist who our first consult in 2023, came in door, and by way of intro, said, “Looks like you are waiting for the other shoe to drop.” I remember clear at that time I had relied to taken albuterol inhaler halfway up some subway stairs to make it to the appointment and was wheezing. I was having full bed nightsweats regularly. I was a bit horrified and scared, but also validated. Something about that deadpan honesty really resonated and grew on me over time.

In 2024, when I came back again to MSK, under much more stable circumstances he had to do my prior auth again for the Nucala/mepolizumab. He had a tendency to call me himself directly, so I learned to save the number and pick up anytime MSK called. After a lot of hangups, phone or otherwise, I got the call from MSK, picked up, and he said it was approved, quite triumphantly for his nature. I shared, which was true, that I was speaking with him lying on the beach on vacation in [another country.] And hearing the good news on vaca was so fantastic for me to truly relax. He said, something like, “you are welcome, have a cocktail to celebrate, goodbye.”

This year, I needed another prior auth from him too. Here’s what he said when that one was approved:

Honestly, what a treasure. When I went in for another PFT in March, with a mild respiratory infection, the technician, I now know as PFT Dave, said something random unprompted, “I’m really gonna miss Dr. V.” I felt like Harold, when Maude said what she said. WHATTTTTT!!!! It was a gut punch, unexpectedly.

I was glad he said something even if maybe not a normal thing at all. I teared up and cried as I walked out of my appointment with Dr. V that day, after saying goodbye for the last time I would see him prior to his retirement. He didn’t see it, it’s his retirement, that is a good thing, and it was a different cry than the time of a previous PFT and getting home exhausted from public transport. For me, he was a small light spot I amongst a bunch of blah blah dark, and I hadn’t realize how much this meant until it would be no longer.

He had really shown up for me in terms of my health, walked with me on the back stairs at MSK last fall to check on me when my respiratory infection was so bad. He made some random Greek lit joke when I said I was on Pegasys that went over my head, and I was impressed by its randomness. His abrupt, direct nature and brusqueness were somehow very me too. He remembered, he called, he did actually care.

I left him a card when I was there for another visit shortly thereafter, for National Doctor Day. He called me once more for something, to sort out my Breo prescription, and thanked me for the card in his very terse way, and wished me well, prior to his last day in May. It was really a hard thing losing him, as someone to sort of look forward to or appreciate in all the uncool, in a way I don’t think people would really understand being like oh yea my pumolonologist retired, so sad for me

And then right after that, I have my new replacement doctor, who has no weird comments to add in weird places in patient care and, somehow needs me to do another PFT and a visit, for another prior auth. I don’t know if it had to do with the doctor change, but it coincided also exactly with when I got yet another respiratory infection, this time really bad again, in June. I still had to go to the office for the visit. I knew I was sick, but I still had to go, even though it’s MSK and everyone is like, deeply immunocompromised. They tested me, and I was positive, duh. They canceled the PFT.

I had to do that later, another trip, another delay to getting med approval, another fun PFT. I got my new friend PFT Dave again; we reminisced about mutually missing Dr. V. He told me Dr. V wasn’t supposed to take me into the actual stairs, when now I had to walk on the fake one. RIP the good old days, to us both, PFT Dave, see you next time though.

Prior auth denied again, and the peer to peer was too. The reason given on the letter in the mail is that my asthma isn’t severe enough, but that’s not actually the issue for why I need the med, because my eosinophils were high before the breathing symptoms ever started. That was back on my CBC when I moved here seven years ago that was another blog post date possible missed this past month: 8/14, the 2019 CBC that kicked my blood matters being a topic in my life, prior to this blog being any twinkle in my eye. My eosinophils were still high even when my breathing was controlled by Breo. And eosinophils damage lungs.

This is the same as the prior times. This is the same content as prior blogposts. I just took my final dose, as I had a few stockpiled. I watched those dwindle this summer, along with interest in side by side comparison photos of my middle fingers.

On to actual MPN-related things on this awareness day: as faithful readers know, my current hematologist, Dr. Rampal, is honestly a rockstar, listed as the number one MPN specialist in New York, maybe arguably the world best-known or visible, all over the clinical trials, very famous in the field, and deeply involved with the founding and medical advisory direction for MPN Research Foundation. That org recently put out honestly the best MPN awareness graphic I’ve ever seen, way better than the cheesier, more generic patient-centered ones. (See the top image and their IG post linked there!)

Having a doctor like Rampal means amazing access and understanding, especially for all the new developments, clearly most expert understanding, clinical trials, and a lot of prestige. But it also means he’s busier and not as available himself for like, random finger stories too. This is fine and parts of just a trade-off I’m still learning as I go. Another trade-off I’ve learned during the going, in terms of coming and going, is that switching doctors or systems costs you continuity, of explanation, of care, of your own data. Such as the eosinophils history from when I was over at Weill Cornell.

My platelets have generally still been trending upward on that same slope since 2023, when I stopped interferon, and I hit my record high on my last CBC. There’s been ups and downs, and there will still be, and this last one may be an outlier. According to the NP, we’ll see, and if it does stay elevated, maybe look at cytoreductive treatment again, ahead of a clinical trial or the ideal CALR+ targeting drug hitting the market.

I’d mentioned last post that maybe I was going to be able to access a clinical trial, having “failed” the interferon. The new trials and phases, though, up to now, seem still out of reach, hard to get access to now. While I don’t qualify for the trials right now, it’s actually a good thing I’m not qualifying, because they’re prioritizing higher-risk people. The trials have become so popular with the good results. And the future picture is indeed so promising here.

But even still, for myself, not being quite bad enough, but still being bad for me, isn’t great.

I see the hand surgeon, infectious disease, and PCP wondering, seeing my hand healing and the infections, whether maybe I shouldn’t be on Nucala because it might affect my immune system. Dr. Rampal, up to now, says to take it. I’ll see where the prior auth ends up next month, and ask for very regular CBCs if I go off it. It’s just stressful not to have continuity with your medicine, having to keep trying to prove records that should exist, and worrying that your condition could actually get worse without it.

I’m going to have to send a lot of emails, going to have to help them see the data points in the files from my other doctors. This is boring, repeating a prior post, I’ve said this same idea before. It hasn’t changed, and it’s also still stressful. It’s stuff I’ve already updated on, it’s just still there. It’s not really an update. It’s just still there. Me too? Me, the only one with the weird eosinophilia-plus-MPN combo? I don’t think about it every day, but I still feel alone with it on the interwebs.

That being said…. let us transition to fresher content. I would really like to give a big, amazing, less-alone-feeling thank you to Maryam Moshiri, journalist at the BBC: Guardian article and BBC video.

A couple days ago I was dusting off some sad little draft of this post I’ve had sitting for a while, in prep trying to get it in order for today, a couple days ago. And while doing saw also this headline at the same time, from the day before. That BBC video is Ms. Moshiri actually talking about her own experience with a similar condition. She came out with her diagnosis for Blood Cancer Awareness Month. PV is under the same umbrella, myeloproliferative neoplasm, which is what MPN Awareness Day is about. WHATTTTT (in a good way)

Her job and some details of her subtype are different, and she switched to Pegasys, which has been helpful for her, not so for me. Everything she says about why she wanted to say something is why I’m open about mine, and also, at the same time, why I stay quiet about it recently. Some of her quotes are literally the same ideas I had in my stagnating draft that I could not get finished. Go Maryam, she beat me to it, with a tad higher readership too, this could just be a link to that and end of it.

My update is really boring, but the reason I could not update is the same. The ideas in the draft I couldn’t finish, being stuck that way, is in fact the update in a way too. Things are boring and also extremely tiring and debilitating. This blog isn’t that important, honestly, it could be way simpler too. For people in my life, I wonder if you wonder if I’m not updating the blog, maybe I don’t want to provide any updates at all. But I also don’t have a lot of energy, I haven’t been reaching out, I don’t even know what my answer can be to “How are you” that is not like, just…..ughhhhhhh same thing and I don’t have any other update of note. I worry about sustaining and agreeing to more socially, even getting into electronic convos I cannot keep up, and I also want it so bad, at the same time.

Overthinking a lot of this is part of my non-update. I don’t want chronic health to be my identity, or for it to be annoying to others. How it kind of becomes your whole narrative of life. Like, I’m suffering, but dude, aren’t we all? It’s a bit of a suffering Olympics, and it’s kind of insufferable to only talk about your own suffering. But like, it also kind of is my identity. IDK.

I had more to say about this identity crisis, chronic health communities online, and my sort of issues with it all, and being attracted and repelled. I had some ideas also in my little post draft over time, and then some recent articles came out on sick-influencing. That is much more complex, so I’m not going to try to rush it to hit publish on MPN Awareness Day and risk some kind of hot take I’m not actually meaning. Maybe next time. Maybe not at all, lol.

But hey, I’m still here. It’s still going on, even if it’s not so interesting anymore. That is so good, it is also bad. There’s not a lot of ups and downs. It’s just going, chronically. Same thing. Different post.

-FILED, by self-imposed deadline no editor asked for, by this unreliable yet somehow still faithful correspondent, to my loyal 13+* strong readership base. You will remain ad-free until next MPN Awareness Day.

PSA: GET YOUR CBC OCCASIONALLY (COMPLETE BLOOD COUNT)

*Thank you to you all and especially to my mom for being 4 of those 😹🩶