Surprise! You Have Leukemia.
Last updated: September 2023
In October 2019 I started writing down symptoms that I had been feeling off and on for a few years. All of a sudden it seemed like they were happening all at once: really tired, headaches, weight loss, vision problems, pain in the left abdomen, abnormal bruising, night sweats, being out of breath all the time, hives, and skin problems. Went in for a physical and I think the doctor knew something was up...Twenty minutes after my bloodwork my doctor called me back to let me know that he thought I had chronic myeloid leukemia (CML) due to my abnormally high white blood cell count.
No cure for CML
After a few appointments at the cancer treatment center and a bone marrow biopsy and aspiration (get put to sleep for one of these if you ever have to have one, please trust me) CML was confirmed in the chronic phase. I have been in treatment since December 2019 and my oncologist says I will take the targeted therapy medication (TKI) daily for the rest of my life as there is no cure for CML.
Additionally, I developed another condition called trigeminal neuralgia (TN) and I'm currently on my 3rd medication for that (the others didn't work or made me so out of it that it was hard to function). The new medication for TN counteracts my TKI. Once I give the ok to the neurologist we'll look into this further (already had an MRI to rule out MS and brain tumors). What does this mean? A more targeted MRI and if he does or doesn't find the issue then potentially brain surgery. All the while I am dealing with side effects of cancer, the TKI, and the TN medication: cancer/chemo fatigue, chemo brain, headaches, weight loss, skin issues, nausea, dry mouth, GI issues, hair loss...
So much rides on the numbers
For the CML, I have bloodwork every 3 months. I have become an expert at reading the bloodwork results, most of the results are the same day although the BCR/ABL (tests how much cancer is detectable in my blood) results usually take a week or so. Try to put that out of my head as best as I can though so much rides on those numbers. I think I make my husband and kids crazy during this wait. I am so lucky that they are so supportive even when I am down or having a bad day.
Heads held high
Things were going as expected with treatment until the point that the new TN medication was added (March 2021), levels are not getting better or worse. Next steps? Maybe a switch to another TKI that has its own set of side effects. What if that TKI doesn't work? Well, we'll cross that bridge when we get to it. And you know what? Things could be so much worse. We are managing this and other things that life has thrown at us with our heads held high.
How do you feel about your support system?