Today I learned a new medical term: supranormal. It means “better than expected” and that is my theme today.

I did a pulmonary function test today. Last go round with that in January I crashed physically and emotionally when I got home from it, I wrote about that prior. Today my result came back “Supranormal.”

It was a lovely google to find the definition. How nice to get a result that is better than expected and that my pulmonary situation is possibly improving or at minimum not getting worse. MAYBE last time when I was strugglebussing the test that might have made it worse, but this was also better than the test prior to that one too. So I will take this W as the kids would say.

I made a commitment after that last PFT breakdown to start prioritizing my well-being, via taking Ubers and charging them to my HSA, instead of completely draining myself. The public transit commute up to the Koch center every time just wasn’t working, it made things so much worse to be exhausted by that commute both ways. So this has been a game changer in terms of managing my existence with many appointments up there. The traffic was bad today and I forgot my phone so I couldn’t work on my laptop on my hotspot on the commute like I normally do. But I had my Kindle and a new book I tore into voraciously instead. And I came home calm and chilled out. Better than expected!

I also got extremely good cholesterol results recently, which were better than last year’s just okay. And I was randomly asked by a dermatologist if my metabolism was running better for any reason due to apparent skin improvement from since last visit. Is the interferon just flipping and revering my whole body maybe? That rich tech bro who is trying to reverse his aging better pay attention to me here, with my unsexy mepolizumab and peg-interferon-alfa2a interventions.

The other supranormal situation is that my side effects from the interferon are getting better. Over the summer, finally, on one injection I started to feel hopeful that I was feeling just a bit more improvement than prior. And then the next after that I was feeling too, it was getting better. So I think I’m getting over the hump of it all. I was very close to not being able to keep going, but now I am definitely feeling instead that yes I can. It’s still definitely making me more tired but it’s feeling more manageable to sustain. I’m still not officially in the normal zone when it comes to the platelets but they are very impressed by that fast “cellular response” I’ve had with immediate and relatively sustained reduction/reversal of the increasing platelets.

And I think my neuropathy, bone pain, tinnitus, dizziness, and itchiness are possibly better. It is easy to compare one thing with last summer that I was having bad burning pains in the backs of my hands and that is for sure better. Possibly my energy better too. It was bad there when I was extra fatigued for a whole week with the interferon so that might be harder to track but whatever. It feels that way and that is good. Maybe even clarity of mind/concentration? I am not sure about that. Still spacey, incredibly forgetful, and very easily worn out. But I also might be in perimenopause.

Because I’m now 44! That’s another great update, that 44 is a great age for me because as you would know by now, I love number patterns, and as you may or may not, my favorite number is 8. I also love that 4 is a bad number in some Asian culture because it means death and as you also may know, I’m into death-y topics and superstition. I’m going to do my best to enjoy this favorite year. The next best age will be 88 so that’s like, 44 years to go, and a bit dicey.

But! Here is another great related thing as well. This is a study that has recently really good early results on a new medicine to specifically target the CALR mutation (which i have) in cells. It gets rid of it or fixes it, I don’t totally understand that bit. This is a study that, Dr. Rampal, my doctor, is actually running too and I had inquired about when I switched to him as doctor. So I suppose I could ask him to clarify what it does to the CALR mutation bits. Regardless, this research progress with this new approach and these results are very hopeful for my disease treatment and prognosis for long term.

Targeting the CALR mutation itself in this new drug basically makes the problem go away without hitting any other parts of the cells. That’s how the Nucala/mepolizumab works, it just takes out the IL-5 which is the part producing eosinophils. No collateral damage, you just target the exact thing you want to. IL-5 you sort of need a teeny bit, so maybe there is a little downside I don’t make eosinophils much anymore when it comes to infection. But only targeting the mutant CALR parts of cells is only good.

Interferons interfere with basically a lot, it’s not targeted. I am optimistically attributing some in a good way with my above reports of improvements, but also a little bad. I am having some hairloss which is a common side effect of it. And skin and eye dryness, though that is getting better. And probably some other stuff internally I don’t know about. But, the very taxing side achy/body can’t move/mental exhausted effects are getting FAR more tolerable than last time I wrote. I’m so glad I can see myself keeping going with this because it is meant to be keeping going for the foreseeable future. Or until this new drug hits the phase it makes sense for me to go with that.

Now it’s been about six and a half months on the interferon. It was pretty grueling to tolerate every other week feeling destroyed and shitty there for a while. There wasn’t the light at the end of the tunnel for almost too long. I was surprised and disappointed that I had more severe side effects in comparison to many other older and/or unhealthier people in my forums. A lot of them can tolerate twice as much interferon as me dosage-wise, twice as often (weekly), just fine after one or two rounds of very slight symptoms.

I think I had an ego complex and a sort of cocky expectation about how interferon would or would not affect me. I have a high pain tolerance confirmed by several types of doctors and dentists in some intense situations I’ve gotten into in the past. And I don’t usually get side effects, get sick easily (other than infections) or complain a lot about being sick etc. If I’m totally honest, I see that as “wimpy.” It might be my staunch Mid-western German-Irish WASP I’m fine everything is fine culture, with some Christian Science religious refusal to be sick influence thrown in there too. So it hit me in a weird psychological way that I was so hit by the Pegasys too.

Here are myrandombloodmatters annoucements: The Leukemia and Lymphoma Society recently updated their name to “Blood Cancer United” to be more inclusive of versions like mine! And September which used to be leukemia and lymphona month is now blood cancer awareness month! And today is MPN awareness day! Bad day in U.S. context to really be focusing on that much, but hey. You have been made aware!

Lots of exclamation points! And positivity! In this post! Not manic I swear! Just happy to be here, and feeling pretty good. Despite the chaos that swirls around both in my job and in the U.S. political ether. Thank you for reading no matter what my vibe is and always appreciate you being interested in my story.