With the new year comes the anniversary of my diagnosis. At this time last year I was undergoing my first round of chemo, blissfuly unaware of the kidney failure that lied ahead, and of just how long this road would be. We did have a wonderful Christmas and New Years though… and then we got some bad news. My blast count is up between 18 and 19%. It’s hard to realize that after a year of treatment I’m worse off.
What’s the plan?
Right now I’m starting my second round of azacitidine chemo, and I’ll be taking venetoclax as well. The azacitidine is a series of 15 shots in the belly over the course of five days. It leaves my belly looking sunburned and it becomes very sensitive. The venetoclax is an oral chemo that’s supposed to boost the effects of the azacitidine. I should expect all my blood counts to drop with these and to be sustained with red blood cell and platelet transfusions. I’m a little nervous about being neutropenic (low white cells) again, since every time I have been has led to a hospital stay. Thank you so much to all of you who donate blood! If you’re A+, I’ve been using it all up.
What if this doesn’t bring the blasts down?
This is the main question I’m looking to answer at my appointment tomorrow. I’ll keep you posted. My guess? Stronger chemo.
What does success of the chemo look like?
Success would be for the blast % to come down under 5%. That’s the cutoff required to move on towards bone marrow and kidney transplant in Boston!
- The blast count will be under 5% at next check in about a month’s time.
- That I would avoid infection and sickness during my time being neutropenic.
- That I would have good relationships with family and friends despite not feeling well. I love interacting with family and friends- it’s the highlight of my life- and I miss it terribly when I’m nauseated or struggling with low blood pressures and joint pain. Especially if I end up going down hill and not recovering, I want to make sure my relationships have been the best they can be!
How am I holding up?
Christmas and New Years were a real treat. There’s nothing quite like giving your kids presents… the excitement and thrill is so fun! Dialysis, though I still despise it, has become easier. My line is working well, and I mostly try to sleep to make the time go by. My anxiety hasn’t been too bad either. It does however feel like I’m hanging from a cliff. It’s hard to relax or focus intently on anything. I feel like I’m holding on to a rocky edge, feet dangling, and wishing I could either fall to my death or be lifted onto the ledge. Some days I don’t mind hanging, and my arms feel strong. Other days I can barely hold on, and I feel desperate. I can’t stay like this forever… one way or another, I can’t wait for this to be over.