Good Morning!! Since all my days are morphing into one giant groundhog day, I think we skipped a day. Speaking of groundhogs….still bloated and still bald. Being bald has nothing to do with a groundhog but just noting;)
Let’s see….. what’s new and exciting in my little isolation room (which thanks to everyone, looks pretty cute I must say with all the pics and decorations). I won some contentious games of Teenage Ninja Mutant Ninja Turtle Uno. I accomplished the lofty goal of showering again and using my favorite antimicrobial soap. I think it is named hibiscus, which is humorous because it smells more the “chemical burn” scent. I didn’t need to pull the platelets are too low to make it out of the shower save me string. My cool nurse Ahmad has educated me on Spotify and we all sang the humpy dance together while watching the Grammy’s. I can actually can do the entire humpty dance (it’s up there with my animal pipe cleaner making talents) but in my current state probably would have sent me to the ER so I only did the arm movements. My cell count numbers are too low to medically quantify now so we are in lock down mode and my body is fatigued very very quickly. I literally left the light on for hours because it required me to bend my arm back a few feet.
Today platelets are still dropping, i will likely need platelets or blood in the next day or two. They worry about fall risk now because going from laying to sitting or sitting to standing kind of throws off the equilibrium. All I do now is just wait until i start to engraft. It typically happens all of a sudden between day 9-12 and then its fast and you can go home and continue recovery there, missing the kids, my friends, mom and Tiger so I hope I’m on the early side. I started the shots but bone pain hasn’t started yet (knock on wood) and starting to wean off the steroids which will allow me to sleep better I hope.
Dr. Burt told me a cool story about one of his earlier trial patients. He was in the military captaining or heading his own ship (i think that is a prestigious role to have) but was on the verge of getting medically decommissioned due to the devastating effects of Scleradoma. It’s a sad disease too which rips away your ability to function. He went through the transplant. 10 years later, still commissioning that ship and is heavily decorated. Nothing that man prides himself more on than being that Captain and honoring our country. Anyway, just another example of this procedure handing your life back. So no boo-hooing here. A few months from now, I’ll be commissioning my own little family of six.
One last note which is very exciting. I have been having trouble with my vision. A LOT. As my body was getting tired throughout the day due to the MS my vision would begin getting blurry usually starting in the afternoon and by nighttime my ability to drive was on some days a no go. I ubered MK to a soccer party one night or had to get them rides home obviously. I would never drive without clear vision for the kids. I also admit to hitting the median on el camino coming back from an appointment right before coming here. I knew it was getting worse a few days when it was starting in the morning. Anyway….the chemotherapy I guess in the first round of this halted something. My vision has been 20/20 with no blurriness at all. I don’t wear glasses or contacts, it’s just my body that shuts down. Anyway, total clarity. Not one episode since around the first dose of Cytoxan which was about a month ago. So cool. Hope it lasts and most patients regain vision loss so this is somewhat expected but until you actually see it you never really know it will work.
Ok so ready to start day 5! Hope everyone has a great start to the week.
Jennie's MS Journey 