I didn’t know what to think about Day + 13; no 13th seat in some airplanes, no 13th floor in some building, and isn’t 13 considered “unlucky”. Well, I decided to look at this as a good day and the proof came in the form of my blood counts:
And then something weird happened. I went to go use the bathroom, hoping that the laxative would kick in – remember, constipation is NOT my friend and I’ve got a few mini hemerrhoids. So I sat down and did some deep breathing and started to gently push. My stomach did sort of a flopping, and I couldn’t help but think that I was forcing a clot out of my bladder. Except it wasn’t a clot, it was a tampon. And I’ll leave it at that because the last thing you want is further description.
I paged my nurse immediately. This seemed too important to pretend it didn’t happen. Extremely embarrassing too. Unfortunately, it did. And then Bart started beeping, sympathetic distress calls of SOS or something like that and two more nurses entered my room. Junga and Elaine saw the look on my face and just asked what was wrong. And then my nurse Jenna and Erin from my Team came in
Long story short, it’s likely the tampon aggravated the fast growing cells in my body and while I have a BK infection, the amount of blood that I was reporting did not correlate to what they were receiving into my pee samples. Already now, I’m using only a panty liner and I feel more comfortable. And better yet, my Team doesn’t seem overly concerned. I’m not brave enough to ask them if they’ve experienced THIS yet.
For the rest of the day, my big challenge was to continue eating and drinking. Its becoming more difficult to do both. I would never wish Mucositis on anyone and just now as I type, the On Call Doctor came to see me and report that my recent fever is because my new cells are beginning to engraft with my body – HUGE! But I still feel pretty rough.
And finally, I had my 3rd Platelet transfusion and 5th blood transfusion in the morning and evening respectively. As with blood products, I tend to get chilled (as they tend to come from the freezer). At one point I curled up on my bed and just made myself comfortable. Sometimes, that’s all that you can do, number 13 and all.
So nice to see Dr. Hickstein! Last time I saw him, we were at the beginning and now, we’re in the thick of it. Every day you get closer to a functioning immune system and a life not dominated by disease. Wonderful!
Hang in there Marit! We’re cheering for you here in the LLI group in Weaverville.
Day by day, moment by moment. You are a Superstar! Love, hugs and prayers are with you. Hang in there my friend – you got this!
I’m glad day +13 is behind you, and you are on to another (less ominous) date. It sounds as if the engraftment process has started, and that is something to cheer about. I will do just that today as you continue to move onward and upward during day +14
When I said your life had been “dominated” by disease, I was wrong. WRONG. You never let GATA2 or any health challenge dictate how you lived – triathlons, iron man(s), 500 mile Colorado Trail, 30+ minute plank and I could go on. You are the bravest person I know ❤️ It is YOU, who dominates.