Getting to the present day is a bit of a long and winding road.
I had a yearly blood draw on March 7, 2015. Six days later, I was on a train heading into New York City for a job fair. I had been looking for work for a little over a year at that point. I got an email ,"your test results are in." I clicked on it expecting everything to be normal, maybe a medication level off requiring an adjustment.
Nope!
A sea of bold text greets me; something around 18 things were too high or too low, accompanied by a bunch of words that I had no idea what they meant.
My doctor called the next week to talk to me about it. He had me get blood drawn two weeks later at the hospital he works at, and the results came in: everything is still weird. My GP sent me to an oncologist who draws even more blood (you sure become a pincushion when you get cancer, don't you?), and he calls me a few days later, on April 10, 2015, and says, "So I am at the hospital with the pathologist, and I am seeing something that I have never seen before. It involves a type of cell called an LGL. You have a hematologic malignancy of some kind. You are going to need to get that bone marrow biopsy that we scheduled, and right after I hang up, the ladies at the front desk are going to call you to schedule an ultrasound."
He was right. They called immediately. They managed to schedule an ultrasound for two days later, a Sunday. That's how you know it is serious, when you get an outpatient scan on a Sunday.
So, bone marrow biopsy day comes, and after he is done drilling into my hip, he says, "So I think you have something called large granular lymphocyte leukemia (LGLL) . Here's some paperwork on it for you to read." It's full of medical jargon that I would later become intimately familiar with.
I go back two weeks later, and he is confused. The results came back showing a different type of LGLL. So he sends me to another oncologist who had treated and seen LGLL before. Another bone marrow biopsy and some blood draws later, that second oncologist walked in and said, "So, it's rarer than we thought! You have both subtypes of LGLL!"
After a numbing hour of medical terms and drawings, he hands me a booklet from Blood Cancer United (formerly LLS) on non-Hodgkin lymphoma (NHL). I read through it, and it has nothing on LGLL, but it lists resources in the back, including the amazing weekly online chats. I started going to those pretty much right away. I was the youngest person in those at the start, but I have always felt welcome.
If anyone wants an easy first step into getting support for your cancer, go to the weekly chats; it's text-based, so nothing technical to deal with. All you do is click a link, click on the chat you are looking for, and then start typing and meeting people. I've been going to the chats since 2015. They are great.
With my cancer, it's been a bit more of a journey. I've failed a few treatments, had some annoying side effects, but since 2021, I have been on a clinical trial that is working very well.
Cody
large granular lymphocyte leukemia (LGLL)
