Battle Hymns of a Hot Mess Mom

For the most part today came and went quietly. I didn’t sleep well last night again, apparently the prednisone counteracts the sleeping pill (even thought I take it in the morning only). I’m barely getting by on 4 hours of sleep. As I taper from it, the sleep should get better as well. But unfortunately it’s going to be a minute. Dr B said to catnap when I can. I was up until close to 3:30am trying to sleep and ultimately getting up to make something to eat. I fell asleep around 4:00am with the cantaloupe on my lap. While the prednisone is supposed to increased my appetite the mouth sores and nausea do just the opposite. I’m hovering around 125lbs now…and my husband said that my profile is that of Gru’s (chicken legs and no butt). Thanks love.

I know it was a joke, and he did ask if he could say something really kinda mean. But it still hurt my feelings. I am not blind, I know what my reflection is in the mirror. I realize that being yellow and severely jaundiced as well as purple for the GVHD rash, adult diapers, mouthful of thrush and sores and yes overall just flabby skin and bones doesn’t scream attractive. No woman wants to actually hear that from their husband.

Maybe today was just a sad day for me to hear that joke, and I could have taken it better another day. Today is my anniversary? Ugh as if it’s something to celebrate. No…I’m going to change that. I’ll think of a better description for today – I don’t want it to be my “anniversary” because it was just horrible. I’m not going to call it “horrible day” either because through this year I have become a stronger person and in many ways different. I’ve been using the word “Pivot” a lot but that just makes me think of the couch scene from Friends…which makes me laugh. Maybe that’s not such a bad thing. “Pivot Day”

My pivot day started with J waking me up at 6:15am to get ready for City of Hope. I was exhausted, asked him to please bring my stuff downstairs and changed into outside clothing. I grabbed a blanket and slept the entire car ride. I thought I was gangster and decided to walk from the parking lot to labs. Yea, I was not a G and hitched a ride on a golf cart. After I got my labs drawn I needed TLC from Nurse J. She will know how to fix my dressing. I opened up with “They hurt me hahaha” and she inspected the dressing and my skin. She was not pleased. She is what we, the patients, call a “dressing goddess” because she fixes what people break. First thing she saw were the blister and sores… “Oooohh they used Tegaderm on you!” She was not pleased! She peeped my wounds with PolyMem Silver and “resupplied” me so that if they get “cute” I would be able to advocate for myself and tell them they are not to use XYZ on me. After I was bandaged up she said “It’ll get fixed up and healed by next week. Don’t you let anyone touch your dressing!” No ma’am. I will be a full “No Thank you!” If someone comes near me!

Off to see Dr. P – my bilirubin has increased to 12.4 – I am super yellow. Minion yellow! He adjusts my medication, puts me on two new ones and says…you’re going to be yellow for a while. Great. He was pleased however which confused me. He said, the donor cells are working…we want this. The donor is attacking your body…not ideal, we will provide medication to support that. But the donor is also attacking the cancer! The donor is doing its job! So this is good, we want pneumonia and jaundice…not to horrible degrees…but it means the transplant is working. The cells are searching my body for potential defects and is doing its job. So, Hello Yellow! According to the color wheel my color correction for yellow is BLUE!. I guess I’ll be wearing a lot of blue for a while. On top of that, I happen to like the color blue, so this works. He does have to see me next week because we’re doing medication adjustments but then after we get that squared away he’s good with going back to every other week appointments. (I’ll remember to bring my neck pillow).

I got a kink in my neck from sleeping on the car ride home, picked up another drug dealer’s bag of meds and picked up another Walmart cart (I misjudged how much ground beef I needed for the Japanese Curry I’m making tomorrow.) I plopped myself on the couch and I morphed into my 80 year old father.

That’s right…I folded plastic bags into little triangles between episodes of FBI Most Wanted and doing laundry. It happened…I went to 80 so quick. I don’t know how I feel about myself because proud isn’t the word choice here. Pathetic? Questioning life choices? Thinking I need to interact with other humans more? Wondering if I’m okay, cause I think I’m not! All of the above! I’m sure this adds to my sex appeal…

Children got out of school and wanted to hang out with their friends, and I cleaned up around the kitchen and continued to pack for camping. Dinner was In-N-Out – J has a colleague that donates blood once a month earmarked for me at COH and they give him a $10 gift card to In-N-Out that he gives to J because it’s S’s favorite place to eat. Thank you M for your blood donation to me and thank you for the gift cards for my little to grub on!

I choked down my protein style burger but couldn’t drink the chocolate shake it hurt my mouth too much. S finished her chores while L was at practice. He returned and ate his burger that I had warming in the toaster over and finished his chores as well. It was a quiet night.

I washed the parts to the air fryer and other odd dish-wares. It was uneventful. I think I needed uneventful. Last year was too eventful. Last year was so very very eventful. Last year was full of action, IV poles, chemo bags, hydration bags, antibiotics, premeds…last year was too much. Today was better. Besides a little kinked neck on the way home…today didn’t hurt my heart the way last year did. My heart hurt as the children waved at me from the car as J dropped them off at F’s house. The fear on L’s face, the confusion on S’s face. No Thank you! I don’t want to relive that at all. Quiet is good.