I’ve had two doctor appointments at MSK recently and not posted about them. I’m no longer in the transformative phase of this, I’m in the tired of it phase.

First appointment that went unreported was with Dr. Goldberg who was not ready to move forward on a treatment plan. We basically just reviewed my situation which was the same as we last discussed.

The new thing from Dr. Goldberg: the working group that reviews cases together decided that I should be seen by an allergist/immunologist. I have seen an allergist/immunologist already in 2020 during the first go round and got tested for any and all allergies. At the time the allergy tests were unable to account for the level of eosinophilia I was experiencing.

Second unreported appointment was with pulmonologist, Dr. VanderEls. It’s been found on my breathing test that I have mild obstructive airways disease, which is asthma on my diagnosis. It does possibly count as end organ involvement because it’s grown markedly worse since I was evaluated in three years ago. I now am using a steroid-based breathing device once daily called Breo and it’s working. I’m also gaining weight as a side effect. Dr. VanderEls is satisfied with my progress so I don’t need to see him for a while:

I will see the MSK specialist on next Wednesday via telehealth which is welcomed, because I’ve been suffering the commute. It’s great that MSK has this team of doctors that are coordinated, at minimum with each other. I am not dissatisfied with my care at MSK but I have slipped through the cracks a few time and waited many hours beyond my appointment times thus far. More importantly, I feel more confused about my situation rather than clear as time progresses with my MSK experience.

I asked Dr. Goldberg last visit about life expectancy and he gave what rang to me as a saccharine softball answer. I guess he isn’t able to provide realistic responses to my questions in the way that I’d like. This is probably both because of his bedside manner and also since my case is objectively unclear. I’m feeling though it may be time to seek the second opinion of Weill-Cornell Silver MPN center. Next week I will find out from them what they need to see me and where I should request sending of my BMB slides. Bring on more appointments and tests.

Things have been busy at work this month and I’ve been leaning in, cringe. I also went to visit my family in Michigan for Easter which was really pleasant. The springtime weather is automatically happy-making and we are preparing our patio for summer. As David Lynch said, the hole is there and it’s dark and deep, but for now I’m focused on the donut.