Finding My People

I attended a couple of cancer events recently. First was the Leukemia and Lymphoma Society’s Light the Night. The second was a cancer storytelling performance called Cancer Chronicles put on by Curtain Up Cancer Foundation. Both events filled me with a sense of belonging. I realized I truly have a cancer “family.”

Finding my people didn’t come easy, though.

The diagnosis

In 2016, I received diagnoses for not just one but two types of cancer. My primary care doctor observed elevated levels in all my blood counts, so he referred me to a hematologist.

The hematologist did further tests. She determined I had this rare blood cancer called polycythemia vera or PV. PV is classified as myeloproliferative neoplasm (MPN). As I found out, my bone marrow makes too many red blood cells. This makes my blood thick and increases my risk of heart attack, stroke, or blood clots.

I was supposed to follow up in a couple of months. However, by then, I had a second cancer diagnosis, invasive ductal carcinoma, or breast cancer.

Feeling alone

It was a scary time. Although I had lots of support from family, friends, and co-workers, I still felt very alone. I quickly realized unless someone walks in your metaphorical shoes, it’s hard for them to relate.

Support groups

I started looking for support groups, particularly for the PV. However, because it was so rare, I came up empty-handed. I joined a few Facebook groups, but it was not the same as meeting in person with someone. Also, although there was a lot of good information available, with some challenges that we shared, it was a bit terrifying. Was I going to wind up having the same problems? After a few months, I stepped back and only checked the groups if I had something I had a question about.

In 2018, I attended a storytelling workshop by Curtain Up Cancer Foundation. Being around others with cancer, even if it wasn't the same type, brought me comfort.

Conferences

The MPN Advocacy and Education International conferences were an excellent opportunity to learn about PV and to meet with others who have PV. Unfortunately, COVID happened, and these conferences came to a screeching halt for a few years.

I also became involved in the Leukemia and Lymphoma Society’s Patty Robinson Kaufmann First Connection Program. I had heard about this program at one of the LLS blood cancer conferences I attended before COVID-19. The idea behind this program was to connect those with the same cancer, in my case, PV, to others who had it. I thought, what a great idea! This was what I had been looking for from my initial diagnosis. I immediately joined as a mentor. It’s been several years, and I’ve connected with well over twenty who have the same diagnosis as me. Not only does it help newly diagnosed PV patients (at least I hope it does), but I find it therapeutic for me as well.

Cancer can be lonely, so I’m so glad I found my family!