TLDR: My current situation is TBD.

On the third day of 2023, I learned I have a mutation on my CALR gene. I told the doctor I didn’t understand what that meant because I never paid much attention to biology. This gene mutation occurred sometime in my 41 years of biological ignorance.

CALR mutation is associated with Myleoproliferative Neoplasms (MPNs), which are blood disorders classified as cancer. MPNs are fairly rare. Myelo means bone marrow.

My abdominal ultrasound shows my spleen is slightly enlarged. I have frequent infections and do experience occasional shortness of breath, dry cough, and night sweats. These can be symptoms of primary myelofibrosis. As a generally anxious person, I definitely suffered while waiting for my bone marrow biopsy/aspiration and the results.

As January came to the end, I learned good news that my bone marrow does not show fibrosis. The bad news is that it shows atypical megakaryocytes, which are a pre-cursor to fibrosis, if I understand correctly. Whether my CALR mutation is a deletion on the gene (Type 1) or insertion (Type 2) seems to matter for possible outcomes, but that has not been tested yet.

I’ve lived in several places around the U.S. in the past 20 years with no plan to end up in New York, but I’m grateful I’m here now. My current doctor (Ullah), a hematologist/oncologist at Brooklyn Cancer Center, has referred me to MPN specialists at Memorial Sloan Kettering (MSK). He doesn’t want to give an official diagnosis himself because there is an element of confusion in my symptoms. 

The perplexing part is that my CBCs (blood counts) have shown consistent, significant eosinophilia for at least 3.5 years. That doesn’t match the standard profile of early myelofibrosis, but the other symptoms I have do.

While Brooklyn Cancer Center always refers people to MSK, I am also trying to be seen by Weill-Cornell as they have an MPN Center in Manhattan and they also take my insurance. I have encountered a problem because both want the actual physical slides from my BMB. These are small glass slides that you’d put under a microscope with my blood/marrow. The slides right now are at the external lab who did my BMB analysis, my doctor doesn’t have them. I am not allowed to obtain the slides myself, as they only send them to medical providers. My patient portal shows that MSK is in the process of getting the slides. According to the administrator at Weill-Cornell they also need the slides so I can get an appointment and be seen. So I might need to wait on Weill-Cornell a bit and see what happens at MSK.

My current therapist is an ovarian cancer survivor and is open with that in her practice, which has become helpful. I’ve seen both her and my psychiatrist since Fall 2020 and they’ve seen me through the pandemic, work drama, dissertation, and complex pregnancy loss since then. I am seeing my therapist once a week and my psychiatrist every two weeks right now, so I am well supported there. I’m definitely meeting my insurance deductible this year.

Since I got the call about my BMB results being indicative of early myelofibrosis with some eosinophilia related confusion, I’ve genuinely felt better than when I was waiting for that information. I’ve had things to do to keep me occupied. While it is time consuming and tedious, I feel capable of dealing with medical paperwork, followups, and self-advocacy right now. I have a lot of useful experience with administration and organization in my education and career so that helps. Also, tolerating ambiguity is something I always talk about as a valuable skill in my work, though it is always challenging with anxiety. I think tolerating ambiguity will be a consistent theme, since a lot is unknown about MPNs in general.

One weird behavior of mine this week is that I heard the Bastille song “Hope for the Future” on my Google playlist soon after the BMB results came. After that I’ve listened to this song on repeat maybe a hundred times in the past week. The song reminds me of early Bon Iver and makes me cry. Somehow that all makes me feel comforted. 

I am concerned for Javi. He has been a wonderful partner in this process as always. I know this is challenging for him, dealing with me dealing with it, and dealing with it himself. I am trying to convince him to use the health insurance we now have together as domestic partners and give counseling a try. But I understand therapy is a weird concept for a lot of people. Javi has an extensive social network which can be a valuable support for him. Right now he generally wants to wait to share with his peeps until we know more (official diagnosis and prognosis).

I am currently sharing the extent of the situation with family, friends, and close co-workers on a case by case basis. It does feel good for me to share, but at the same time it is upsetting to upset other people, so I’m working through what the best approach is.

The purpose of this blog is to help me process what is happening and communicate to who are interested. I did a similar thing in 2011 I when I had major maxillofacial surgery. Much love to those who are reading and joining me on this chapter in my life.

Though I am a science-based agnostic bordering on atheist, I sincerely appreciate all the prayers, good vibes, and positivity sent from those around me, as it lifts me up to know others are caring. I want to enjoy the beauty in my journey to the best extent I can.