When I moved to NYC and came to Pratt in July 2019, I had not been to a regular doctor for a check-up in a few years. I got an email about a physical offered on-campus in August so I signed up. The physical included a complete blood count (CBC) which came back showing raised levels of something called eosinophils. That was the first time I heard that word.

The provider referred me to retest to confirm and then recommended I see a hematologist, who became Dr. Rafati. In late Fall I had my first bone marrow biopsy and aspiration (BMB) with her, which came back looking normal. My memory of that first BMB was that it was pretty uncomfortable, but not traumatic, and the recovery was not too bad. And that led to my OG diagnosis in January 2020, before the world shutdown.

In late 2022 I resolved to re-examine my eosinophilia and was referred by my current primary care physician, Dr. Chen, to Dr. Ullah at Brooklyn Cancer Center, which is affiliated with both Brooklyn Hospital and New York Cancer and Blood Specialists. During the referral, Dr. Chen’s receptionist assured, “Don’t worry it’s called Brooklyn Cancer Center – it doesn’t mean THAT for sure.”

After a blood test showed the CALR mutation, Dr. Ullah ordered my second BMB in mid-January. At that time I was on baby aspirin once a day per his orders, which is basically 1/4 of a regular aspirin. Based on what he advised me, starting five days before the procedure, I took a whole aspirin every day instead of the baby version. At that BMB, the performing doctor was not Dr. Ullah. She seemed perplexed about the whole aspirin I was taking, but she chalked up his request for that to my particular case and eosinophilia.

Things went poorly after that BMB. The nurse had to press on the wound non-stop for about 40 minutes post-procedure to stop the bleeding. The wound was badly bruised and still oozing blood like 3-4 days after, I couldn’t sit in a normal chair for a week, a couch for two weeks, and I was sore for even more. I was a broken record thinking and saying, “Wow, this recovery is way worse then I remembered.”

At some point I was reviewing my online chart/documentation from Brooklyn Cancer Center and I found Dr. Ullah’s notes.

Breakthrough: He said HOLD aspirin five days before, not WHOLE aspirin. 🙀

This clarified why I had such a difficult recovery. I even remember repeating back to him “OK, a whole aspirin starting five days before” and he repeating back to me “Yes, hold aspirin starting five days before.” I find this extra funny because Dr. Ullah is from Pakistan and has an accent and particular word choices based on where he’s from. I consider myself skilled in cross-cultural communication and in navigating accents and different word choices depending on what type of English one speaks. So, this was another recent professional-personal fail on my part, in addition to my passport expiration. 😹

Today, the BMB at MSK actually seemed more painful during the procedure than the other times. The part where they are pushing down into the bone had some really excruciating moments that caused me to flinch, which I usually don’t do. Also, the aspiration is the most unpleasant part overall and that seemed extended today. I don’t know if I was just being wimpy or if they were aspirating more, or what.

But the more important thing is it was relatively quick and there was no issue with excessive bleeding or other complications. I’m feeling much less sore afterwards as compared to my last experience. Probably because I stayed with the baby aspirin and held taking it this morning. I told Dr. Goldberg my HOLD vs. WHOLE anecdote and he cracked up and asked me if I bruised badly. I also told the providers who did my BMB today at MSK and they seemed low-key horrified lol.

I had the third BMB so soon after the second because Dr. Goldberg wants to double check some stuff in the marrow before making a more detailed diagnosis and starting me on a treatment plan. I guess results are best with a fresh biopsy rather than trying to use the old biopsy materials again. If you haven’t noticed, I deeply value information/data, so I agreed to the extra procedure readily. I’ll consider the pain worth the gain even if there’s even the slightest bit of new knowledge, confirmation, or confidence emerging from this round. We shall see!