Well I’m back at the Oncology office waiting to get started. Today I have my Mommy here with me. I definitely slept better last night and feel pretty good—not as nervous, not as tired or achy. I’ll update this post after treatment today, but while I’ve got some time I’ll tell the story about how I got here—
For a while now I’ve been bruising easily—I can recall thinking this all the way back to 2020. It would seem to get worse if I was also fighting a cold or flu or virus. It started to get to a point where I was suspecting I had an autoimmune issue. Well in early March, Zev (my nine-month old son) pinched my arm and it left a 2 inch bruise on my bicep that stuck around for a while. Kelli had had enough at that point and made me an appointment with my general doctor to have some blood work done. My blood work showed I had very low platelets. For context, normal levels are 137-397 K/cumm but mine was 29 (and has been very gradually dropping since my first check, down to 23 yesterday). My other blood levels aren’t great either (white blood cells, red blood, hemoglobin) but they’re just below the healthy threshold.
My family doctor sent me to a hematologist/oncologist (blood and cancer specialist) to get to the bottom of my blood issues. I got into the office the next week and they sent many vials of blood to labs. One lab tech noticed hairy B cells in my blood and that’s how they discovered I have Hairy Cell Leukemia. It seems like I have what they call “classic HCL” which is good news. It’s very treatable. Nearly 100% remission rate. I’ll have to keep doing regular blood work even after being in remission because it could come back but it sounds like it’ll be easy to kick each time it comes back.
I’ve joined Facebook groups, an online community and a HCL patient registry. From what I’ve read online, remission lengths really vary from person to person. Some people relapse only after a couple years but most seem to make it 6-10 and one man has been in remission for 46 years and going strong! They don’t know what causes this disease. There is a genetic mutation involved but they don’t believe it’s hereditary which is good news for my boys.
The initial shock was a lot for me—was feeling scared, sad, guilty, overwhelmed. But it didn’t take long for me to become very relieved and grateful for this optimistic diagnosis and for all the love and support that I have. Thanks for the prayers, thoughts, good vibes and support! Here’s to hoping today is uneventful!
POST TREATMENT UPDATE:
Today was easy. No bad reactions to the drugs today. I woke up with a bit of a rash on my right foot and it (my foot) felt warm for the second half of my treatment today but the nurses seemed unconcerned and it’s not painful or itchy. Was done with treatment a little after 2:00pm and today was my last long day. I have chemo the next three days which should only take a couple hours in the mornings. And then Monday I’ll get my second immunotherapy dose. I’ll get 8 doses in total once a week. My immune system will likely take a blow from the chemo but I should bounce back quickly and get back to my daily life in no time!
