March 28, 2023
We had a mostly pleasant night once KK finished all the check-in routine for her new room. This morning her pain level is about a 4. She may have dreamed of her "disgusting green drink" for breakfast, but the only thing to materialize was a disgusting brown drink flushed into her feeding tube. She did some standing with the team from PT and should graduate to walking this afternoon. Time for a rest.
NOTE TO ALL: KK's room is the size of a Barbie Ashram. Do not send flowers or gifts to her--at least until she is back in her Moroccan Riyadh with Athena.
March 28, 2023 10:45 p.m.
Today has been slow going…but always in forward motion. KK met with Occupational Therapy this morning and managed to take a few steps. She met with them again in the afternoon at which time AA decided she might need some therapy with Mr. C. (His sleeves actually don’t make it over the full width of his biceps.) However, and this was the best part…his power of positive thinking was fantastic. Before taking KK for a stroll, he walked her through the impending moment of seeing herself in the mirror for the first time since her surgery. Ladies and gentlemen…drumroll for the moment of the day. KK looked in the mirror, asked for her whiteboard and wrote this:
That’s my sister!
She spent the rest of the afternoon in the chair enjoying an afternoon toddy of Nestle Impact 1.5 for feeding tube and fresh bag of sodium chloride injection usp. Our evening has been spent reliving the memories of high school and KK’s fierce development of asthma. (Oh the midnight rides to Cornerstone.) Breathing treatments and guided meditations are attempting to calm the respirations. Looks to be a long night.
It may not always be fun, but sure beats the alternative!
Goodnight from Pod B.
March 29, 2023
KK, DCF, and AA can relate to the early days of high school when KK was navigating asthma in mold spore infested Clutch City. Well...Captain Asthma reared its ugly head last night, but was chill enough by noon today for KK to prance around the nursing pod with Mr. C (and his biceps). And good news to those inhabiting the pod, KK gets her first shower this weekend! Progress! By all estimates, tomorrow should be the last day of major inflammation of the surgical sites. The amazing Dr. V stopped by to see KK today and loves her progress! <--insert confetti drop here--> Let's hope tonight is better than last night, but includes more prancing tomorrow with Mr. Biceps!
March 30, 2023
What a difference a day makes. KK and CL tripped the light fantastic around the nurses pod several times today. KK even pulled out her phone and iPad long enough to manage a bit of reading and texting. When I texted her today and asked how her night was, she responded with: "Albuterol is my friend." Nothing like a little oxygen and deep breaths to make one feel better. (And perhaps an indictment, but I'll hold my tongue on that front.) One of my bff's said she has 2 states praying for KK. I say, "bring it on!" If you're reading this, I don't have to tell you what an amazing sister I have. Whether it be prayers, white light, blankets, gongs, chants, or even albuterol--she is accepting of all methods of healing. Ever the giver, she is learning to receive. She is reminded daily of the gifts that having cancer can bring: amazing scientists and technicians as well as compassionate and thoughtful medical staff from the doctors and nurses all the way down to Mr. Biceps and the MDA campus crossing guard--not to mention friends and family sending love and warmth from across the globe. The knowledge from both of our parents on how to travel this cancer journey with grace and gratitude is deeply imbedded in us and we look to the pelicans and butterflies in the sky with genuine thanksgiving. I may be directing a play called LIFE SUCKS, but really...life is a journey that is pretty dang awesome--exhausting sometimes, but awesome nonetheless!
March 31, 2023
She's talking!!!!!!!!!!!