I had a bone marrow aspirate and lumbar puncture yesterday, and this afternoon, I found out that the initial flow cytometry results show no minimum residual disease in both the marrow and cerebral spinal fluid. We're still waiting to get the results back to see if any NPM1 mutations were detected, but so far, things are going fairly smoothly.
I had a chest CT a little over a week ago that revealed 4 small nodules of fungal pneumonia in my lungs, possibly stemming from my previous pneumonia during my last round of chemo in Missoula. Anyone out there ever taken Voriconazole? While the side effects aren't as noticeable after being on it a week, the first few days were quite the experience. I don't generally experience any side effects from medications, so this was something new to me. Either way, the goal is to keep those nodules the same size or smaller as I prepare for the transplant. This has pushed my transplant date to 9/25 from 9/22. I'll go into the hospital on 9/18 to get started with a week of chemo and radiation.
I feel like in the past couple of months, I've been in what I'll call a "conserving energy" mode. I have a lot of thoughts and emotions on my upcoming transplant, some of which I know how I feel, and others of which I choose not to think about because they're just things that are really hard. I guess it's a survival mode of sorts. I've been busy trying to build back up some strength and health, enjoy what consistent time I have left with my family, and prepare all of life's things for what is hopefully the biggest health event I'll need to endure. After I completed those things, plus making it to a ton of appointments over the past 3 weeks, I just don't have it in me to put down on paper any thoughts that I find significant or very personal.
After treatment was over last July, I had a solid 11 months of feeling healthier than I had in years, and although I had times of doubt, I generally felt like the chemo was going to work for me-that I was going to be able to carry on with life as usual without further treatment. There were so many days that I didn't once think about AML, the chemo, and what I had gone through in the months prior. I was too occupied, living life again, and that felt really good.
I had a positive NPM1 mutation detection in March followed by a positive for minimum residual disease bone marrow in June, meaning relapse was occurring. While I knew going into the June bone marrow that there would be a high chance it was positive, I just didn't want it to be me. I had only just "come up for air" a few months ago and up high was where I wanted to stay.
I guess what I'm saying is that I'm ready to come up for air again. I want to be healthy and live a long, fulfilling life, loving those around me. My last hospital stay took a lot out of me, and I anticipate that the chemo and radiation I'll be going into will do the same. I guess I need to take it one day at a time, remind myself that I'm stronger than I know, and keep my eyes towards the prize of going home in late December.
Do any of you 2000 THN volleyball players still have your tie dye "Pain is weakness leaving the body" shirts? I think about that shirt sometimes. I thought it was cheesy then but sort of made us look tough and feel better about all the running we did. Well, after a year of all these needles, other sources of pain, and many more to come....I feel like either there was a lot of weakness in me, or maybe now I have strength that I never knew I could have...who knows. Maybe literally, the quote was just a bunch of crap.
Anyways, I hope to post more frequent updates soon as I go into the hospital to keep people in the loop and to document the whole process. It's almost Friday and that means it's almost time to see the rest of the Krutzpack. 💜
