This summer, I’ve been rescuing kittens in our backyard and recovering from the drama of earlier this year. The kittens were wild but everything is much chiller and calm on the health front.

My eosinophilia is practically not a thing anymore, going from 33% of my blood (very high) to almost normal levels in the past six months. I am interested to experiment with my Breo medication for the pulmonary symptoms. I want to check if I go off or reduce, whether my eosinophilia goes back up. That would give a more definitive proof of causation. Corticosteriods are not the worst medications in the world for you but have their drawbacks. Testing the theory would confirm I do need to be on Breo at full dose for good to prevent organ damage from the eosinophilia.

Since I last wrote, I’ve punted the decision of which doctor to choose officially and have seen both. So far my insurance hasn’t cancelled me yet. In our last meeting, Dr. Bar-Natan from Weill-Cornell understood why I’d like to test the Breo usage and indicated openness to this experimentation. On the other hand, Dr. Goldberg from MSK very nicely shut down my idea and said he doesn’t see a reason I should mess with the Breo at all in the future. I feel bad to leave Dr. Goldberg and MSK because they are responsible for getting me to the point I am now of stability. I am so thankful to MSK for that, their kickass online portal, and deluxe waiting room with views, but the break-up may be the direction I am headed.

To recap, both doctors have diagnosed me with MPN and they use different terms to describe that it is most likely ET right now (the better one!). I don’t have symptoms of note at the moment besides fatigue, but who doesn’t have fatigue. Very occasional night sweats but they don’t bother me. I get infections easily and my face is kind of flushed/reddish a lot but those are not dealbreakers. My platelets are just slightly high, and I only got the grade 1 fibrosis score on one of the BMB analyses. As Dr. Bar-Natan said, time will tell in terms of how the MPN may manifest itself.

Both doctors also agree based on the currently stable “low-risk” situation, I only need blood tests and doctor appointments every three months. So my medical frenzy/freakout is over for now. The first period of this year had such dramatic swings in what the results and doctors indicated, with total lack of clarity of what was happening. Each test and appointment had a huge deal of anticipation of what might be discovered. It is a welcome pivot to now have the appointments on my calendar as something boring, just taking up my time as a routine thing where there are no bombshells dropped. At some point things may change again, and as both doctors said, they’ll follow my symptoms and the bloodwork to determine when more intervention is needed.

These days I feel more present in the now, and while that rings cheesy to me, it’s true. I feel more clear headed and at peace about the inherently limited time to enjoy this thing called life, while my body is working well. You may know I’ve always been a worrier, for example, losing sleep over looming math quizzes as a kid. But I’ve noticed my attitude tending recently to be more, “Why not?” and “Really not worth stressing over,” which is a great by-product of the situation.

I’ve had a little rumination surrounding how I have gone about sharing my situation in some cases. It’s something I’m learning about and working through. The first people I told in the worst possible time (peak scary news) in the worst possible way (blurting it out). As a close and wise colleague told me at the time, I can hear how you are thinking about it by how you say it. Basically when Dr. Ullah called me and told me the results said early primary myelofibrosis, I turned right around and was like, “hello, I am in the process of dying,” to a few innocent bystanders in my life. That is pretty embarrassing in retrospect since it’s looking way better for the near future. I’ve tried to correct the record with those particular poor souls with the very positive updates since then. Still cringing internally about the dramatic (and traumatic) communication approach I took at that stressful time, but glad to be living and learning.

I recently committed a related party foul. I was talking to a stranger casually, we were having what I thought was a good conversation/connection. As someone with pretty intense social anxiety with neuro-spicy flair, sometimes I don’t read the room that well and this must have been one of those times. I brought up my diagnosis and the learning process I’ve gone through this year. The stranger did not react well to me sharing that and responded very directly that this was way too much information and way too heavy for a party conversation. Social anxiety worst nightmare scenario.

I took that interaction quite hard at first. But after processing, it actually opened my eyes further that sharing my story may be helpful to me, but harmful to someone else. The C word can be be triggering based on one’s own personal experiences with it. Also clearly life and death, mortality topics are still pretty taboo to frankly discuss in our social culture. Based on what happened, I’ll try to be more sensitive/careful to avoid running my mouth on my condition randomly without some semblance of trust built.

But, I promise I’ll still be TMI-KO, because I’m proud at this point in life to be authentically me. I wasted much emotional energy being ashamed of parts of who I am in the past and definitely don’t want to be ashamed of my fresh new identity living with chronic, progressive disease. It’s just not helpful to me to exist by myself in some sort of secret cancer closet. If someone judges me personally or professionally for my candor about my health, insert my “I really don’t care that much” attitude here. Stigma sucks.

Am happy to have the blog as a place to process and share, and do plan to continue to update when there is something good, bad, or ugly to report. I am also really delighted to discuss 1:1 anything related to these themes. Having people with me on my journey, which can certainly be a lonely road, means a lot. Thank you for being onboard.