Today is one week since I’ve been home from Northwestern!
It’s good to be home but I’m definitely tired, which, I was warned I would be for a good month or two. I started taking naps for the first time in my life this week! The last two nights I seem to be back to a somewhat regular schedule. I’ve been very good with energy conservation- doing small loads of laundry and dishes, balancing time standing and sitting, etc.
It’s an adjustment being home, the first few mornings I woke up looking to see if I was connected to the IV pole before getting up to go to the bathroom….it wasn’t until a few days ago that I started waking up realizing I’m in my own bed.
I’m enjoying relaxing, having short visits here with friends and family. My good friend Beth brought me these orange roses, (the MS color!) and a treat!
Physically I’m walking independently, haven’t used the walker or cane since before mobilization last month. My gait is improving, and I don’t have nausea anymore. Day +11 I had a zap in my foot, an “MS hug” and left knee spasm. Day +12 my left thigh was having a lot of spasms but the second dose of baclofen helped, Day +13 my left big toe zapped, light spasticity in thighs, and maybe once or twice a day I see a circle of light with half of it flashing. I know to expect some of my symptoms to linger for awhile but they are much better than they were. Bladder issues are still resolved and have been since before mobilization but while I was in the hospital I was using products to prevent an accident because I was peeing so much! My skin was very sensitive to the touch until the last day or so and I’m starting to have minor spasticity return. Also in the hospital through the first part of this week I couldn’t feel my calves which made walking weird. I could feel my thighs and feet but not my calves. Today my legs feel more normal but still a little weird. I’m careful in the shower using my stick-on grab bar on the glass shower door to hold on to as I open the door. I don’t have much appetite so I’m drinking Premier Protein drinks to replace one to two meals a day. My right arm hurts at the PICC site and the right side of my upper body does too from my neck through armpit. Putting on deodorant is actually a little painful. A few days ago I noticed I have a couple of sores on the side of my tongue- it made brushing my teeth painful, especially when trying to spit. I looked it up and it’s a side effect of chemo. So talking and eating and drinking have been painful but I started using the biotene my parents brought me in the hospital and it helped, but the Rx Dr. Burt’s NP Michelle called in is even better as it has lidocaine in it so it numbs my mouth. I feel another sore now inside my lip on the right side of my mouth but I’m hopeful they will heal soon. I’m also still having some bone pain but it’s minor and intermittent and I can just take tylenol if it bothers me. I think of it as my stem cells unpacking and getting settled!
On Monday, Day +14, in the morning I went to see my stem-cell sister Daniela get her stem cells back! It was really cool to watch her have this done in my old room! 1676. 6 is my lucky number and my transplant was on 6/6/16 in room 1676. I never really believed in luck before but I’m feeling pretty lucky now and am so glad she has my room as I believe it has good energy in it! She has been a huge support to me since I met her at our evaluations in November. I got to meet her kids and mother-in-law and see her husband again. I got my labs done and he drove me home. I told them next time they go to visit her to bring their swimsuits and they can swim here in our condo association’s pool. While I was waiting for her family to meet me to take me home I stopped in the gift shop and picked up one more item for my “inspirational tray” on my coffee table. It’s a pebble that says “success” because I believe my HSCT will prove to be a success!
My lab results came back quickly on mychart and almost everything was in range, my hemoglobin and hematocrit were a little low but Michelle the NP called to review the results and said that’s normal and my numbers are climbing back up and I’m on track!
Today I wandered down to the fitness room and walked on the treadmill for half an hour at 2.2 MPH just to get some steps in….and then used the leg press which felt good. Since my right arm is sore I decided to wait on the arm machines. I can see Rush Hospital from the leg press machine where I was last June for that big MS attack that changed everything.
I’ve been spending my time outside when the weather cooperates on my patio. I have a bag my friend Marilyn made me that I call my “patio bag” where I bring my music speaker, ipad, magazines, suntan lotion, chapstick, etc. outside and then back inside with me. Very peaceful place to heal.
Thank you everyone for your continued support!