Battle Hymns of a Hot Mess Mom

I took some days to myself away from posting, and just being with the family. We’re giving homesteading a try. It seems more and more processed. Foods are so prevalent that we forget to cook real food for ourselves. I love me some bacon but when you look at the ingredients there’s about a half a dozen of the ingredients I can’t even pronounce. I’m no expert but that’s concerning. But maybe that’s how bacon really is made I don’t know however, over winter break we decided to make bacon ourselves. It’s currently curing in the refrigerator so we shall see how it turns out.

Winter Break is officially over for the children as the spin of their alarm going off at 6:30am mark their return to school. It has been nice having them home during break with zero agenda. I have never woken my children for school, not even daycare. If you’re still sleeping, I’ll wait. I hated being woken up as a kid. I was and still am not a morning person. I hate getting up for COH appointments. Anything requiring me to get up before 8:30pm is always incredibly painful. But when the children were younger, I would literally just wait and let us be late. I always valued their sleep above anything else and for the most part still honor that. If we’re going camping – you’re getting woken up. Fishing trip? Catching a plane? All exceptions. School? Eh, you can take a tardy. These aren’t the battle hymns of the Tiger mom. These are the battle hymns of the hot mass mom. Let’s not get it twisted.

Because of the insurance drama last week all of my appointments got shifted. I’ve got labs and infusion today, regularly scheduled appointment for labs and dressing change on Wednesday with a special appointment to meet the study nurse. I got approved to be part of a study, I don’t have very many details on it, but it’s supposedly medicine that will help block out cancer cells. I truly don’t know much so we’ll find out on Wednesday what this is all about. I don’t have the low risk leukemia. I had the medium to high risk one which required a transplant and more monitoring. Thursday is my booster transplant.

I was supposed to get my follow up biopsy this week, but instead Dr. P called for a T cell transplant. It makes me nervous. I know the leukemia that I have is higher risk so I wonder why the T cell transplant instead of another biopsy unless he thinks the MRD was positive. Of course this is me spiraling as usual. I was supposed to have the secondary biopsy but instead Dr P scheduled me for T cell transplant. What happened? What changed? Is this a bad thing? Is this because my leukemia was higher risk? Does he not think the transplant worked? Omg. I have to shit my brain off.

I’m going to hit 100 days in a few weeks. But I don’t feel like I’m getting better fast enough. I have even less hair then before. My skin is flaking off. It’s gross. I don’t have the stamina I did when I was on chemo. I don’t understand. I’m asked “How are you doing?” I genuinely don’t know how to answer that. So so? Two days good. Two days bad? I feel like it’s a stand still sometimes. I don’t get it.