Battle Hymns of a Hot Mess Mom

I’m currently waiting for the oncologist Dr G to make the final decision. The conclusion is they don’t really know what this is. All but 1 of the test have yielded a negative result. It’s not bacterial, viral, or fungal….All the test but 1 say it’s negative. The last test is for cancer, the pathology on that take longer but the pulmonary and oncology doctors don’t believe this is 2nd cancer. 2nd CT showed no significant improvement (which was disappointing). Why am I sick then?

I don’t want to say “fallback” but it feels like a co-out answer. “GVHD” – it’s this mystery bag of illness I can just get randomly. B*tch please… Our medical science is only at “mysteriously developed due to GVHD” I don’t know I’m not an expert nor a doctor. But sometimes I just want a doctor to shoot it to me straight. I want them to tell me “i don’t know, I’ll ask around and research it.” That was Dr.C for me. He never ended up visiting me. I know he is busy and has his patients and rounds…but I would have like to have said “Thank you Dr. C. I missed you. Thank you for taking me into the darkness and teaching me how to see.” I could always send a card, which I can…but eh…the genuine human conversation is still meaningful to me. But it didn’t happen this time. C’est le vie.

I’m frustrated that there is no clear diagnosis – I want to be home. I barely get 3 hours of sleep. My heart rate monitor keeps beeping that I’m dead. It’s pretty exhausting.

Got woken up by the nurse searching for the telemetry machine in my blankets at 4:30am. Well I’m up now…in about 10 minutes I’ll get vitals so the point of “going back to sleep” is moot. Waiting for the ants to get up now and get their coffee and start their busy ant day.

I, on the other hand…not busy. I’ll “snooze” after I am able to choke down some food (oatmeal and avocado) pick at whatever else they surprise me with on my tray. Dinner last night was chicken, carrots and a baked potato. I had a bite of each before I lost my appetite. I did however drink my Ensure (half of it). Calories were had.

I see the headlights now, the ants are waking up to do their daily work. (Sidenote: I got these hand warmers and putting them on the nape of your neck, is a mood!) It’s giving French Patisserie and Croissant.The headlights are filling now. Busy busy people. I’m not busy. I’m not busy at all. Maybe I need to change that. Newton’s Law Body in motion stays in motion, body in rest stays at rest. I gotta get me more motion. I want to go back to my 20 mins of walking as soon as I can breathe. Then I want to declutter the house. Maybe I just “Marie Kando” the sh*t out of my space. “If it doesn’t spark me joy, toss it” – Start in my room and work my way around. Always finding something to toss, donate or keep in its rightful place. I won’t expect to be discharged until later in the afternoon early evening.

Of course now being that I am awake at 6:30 in the morning face washed and ready. Absolutely no one is coming in my room. No vitals no new antibiotics being hung. Nothing zero zilch. No the best times are when I’m exhausted, drooling then everyone rushes in the room. I’m not complaining about the peace just noticing the irony. Might as well do my Aerobika