Battle Hymns of a Hot Mess Mom

Today is 100 days since transplant. It was a day when I started out of transplant as SUCH a monumental day because it was 100 days. I would feel better. I would this and I would that. I soon realized that it really was just a marker….some medications could be done at 100 days like my prevemis that is $8100 a month.

The last few days has been especially rough. GVHD has increased my nausea as I have been off of the anti rejection meds for almost two weeks. The mouth sores have increased along with the itchy skin. I know it’s all worth it. The DLI (T cell transplant) without anti rejection meds increases the GVHD you’re uncomfortable but it’s not life threatening. I’m trying to hold down food but it’s been a real challenge. Every thing looks amazing until I’m actually eating. Even at my current weight – my weight/height ratio considers me Obese Category I and joke that cancer will bring me to my goal weight of “normal” – I have to laugh at something.

My chest and stomach hurt from the nonstop coughing, the cough drops make me nauseated and make me cough more quite frankly until the point of vomit. I drink hot water to help my throat hurt less and try to sit up as much as I can so I don’t gag on my mucus. (Lovely visual, I know.)

I’ll have an appointment this Tuesday 2/6 to see the doctor about this as the phlegm that I’m coughing up is no longer clear, but I came Neg for Covid. Maybe start anti-biotic? But how will that affect the new medicine maybe next week? This is where it feels like two steps forward, two steps back. I used to get super frustrated with it, as sometimes I still do…but it’s part of the process. It’s unfortunate, but healing is not a straight line…life is not a straight line…it comes with the ups and downs. Those “dips” may be the biggest recovery points because sometimes those “dips” really sling shot you back up. Am I doing the “positivity” thing? Barf. Not really. I know the process comes with the ups and downs…I’m not an idiot. But sometimes when you are in the downs…Baba Yaga makes you believe there will no longer be an “up” afterwards. And in your downs she tells you “this is it” and sometimes she’s very convincing. Especially when you have been throwing up for most of the night, you haven’t sept because you have been coughing and vomiting. Your whole body is spasming in pain. You’re exhausted and you don’t think you have more to keep doing this tonight. You’re dizzy when you stand up and you’re barely able to hold yourself still seated on the toilet. Your legs are so heavy that you don’t think you can stand up after the toilet and need to use the toilet seat to push you up. In those moments, she is so f*cking loud in your head. She is screaming her own version of Miley Cyrus’s song in your head.

I get asked often where is J? He’s sleeping, or he’s tending to the kids. Why don’t you call him up to help you? What is he going to do? Like really? Hold my hair back? I don’t have any. Wipe my mouth? Maybe? Rub my back? Sure. Does that actually make me feel better? Ish? But really I feel like I got hit by a truck…so not really.

I’m just going to hold on until 11:00pm and take my sleeping pill.