Day +93: Follow the yellow brick road....to wellness

Days home: 82

Appointments Galore
The next several weeks are riddled with doctors appointments: PT, OT, Nuero, Chirop., Hematology, Plumonary, Primary. The day's fill up quickly. PT and OT at 2x per week.


Medical & Basic Math
My Neuro doesn't know I did this. So that appt. will either go really well, or really poorly. Best case is to get his support by showing up in remission. Considering the ($) thousands he loses when a patient is no longer being medicated and treated with $22k infusions, it depends on his priorities.

** Here's some math for the day: My transplant has paid for itself.  In 4 months.
I haven't had infusions since July 16. Every two weeks at $22k per infusion, cost savings = $176k
Cost of my transplant (~$165k). This is how we lower the cost of health care.

How I would LOVE to sit in a room with the executives of every major health coverage company (that has denied this treatment) to discuss simple math. Thank you Anthem BCBS of Ohio for "getting" it and being so wonderful to me!

Oops
Last week I had another visit to the ER for the same severe and sudden stomach issues I had back in August. This time the ER doc suggested that perhaps this isn't a virus at all, but upper GI spasms. Referral to GI doctor was recommended. Could be from chemo, antibiotics, no good flora in belly....so many things. For the last week, I've  been taking digestive enzymes to help break down food and eating yogurt to keep my stomach less stressed.

Therapy

PT and OT are going well, albeit challenging. OT is teaching me how to do things without thumbs (while we wait for joints to heal from continuous sprains). They made me joint splints to make sure they aren't moving. It's comical to watch me, surely. PT is teaching me to walk sans cane, for long distance, around objects/obstacles which terrifies me. The goal is to teach me to trust my balance and strength now that I am building strength back up.

Using mugs w/out thumbs

Thumb splints

Fatigue is still a huge issue for me. As is right foot strength and both basic and fine motor use of my right hand. There are signs that the nerves in my hand are improving, it's just a very slow process. If a tortoise married molasses....their baby would be the healing process. :)

 

In the morning, there is 20-30 minutes of stretching my right leg, hip, arm and hand.This is just to be able to walk, hold things, lift an arm, reach, bend etc.

My OT explained that when nerve damage is present in an appendage or limb, the bodies reaction is to flex it. It takes less energy to flex than to extend them straight against resistance. The tension on the right side (leg and hand) is indicative of nerve damage and a sign that it is much worse on that side.

This is my hand at rest. Ring and pinky fingers are always in flexion. Most damage and weakness is in those two. When I got home, this hand would flex tightly into a fist and I would have to peel my fingers back and stretch them to stay straight. So this is progress!

Exercise

My laps around the block are helping me with cardio, foot drop practice, but I max out at 3 laps at a time (1.1 mi). I would like to work up to doing that 2x a day, but won't walk alone without the cane. I usually wait for Tracey or Chad to walk with me after work. I have the bike at home, but it doesn't work the balance and foot drop muscles.

My FitBit keeps me on point (except when i forget to wear it) and the Fitstar app, which offers body resistance training that I can modify at home...no equipment needed

Eyelashes are critical to my pysche

Hair, eyelashes.....all moving back in. Hooray!

Sept. 28

Oct. 31

Happy Halloween!
Halloween is one of my favorite holidays. I had help to decorate the porch.
I missed Halloween last year due to illness following my infusion, but didn't want to miss it again this year. It came out pretty nice! Hope you all had a happy, fun and safe one as well.

motion sensor ghouls & skeletons, fog machine, lightening/thunder lights

I was a minion!

Work 

I will discuss return to work with my hematologist and primary this week. I was in such bad shape when I got home, I thought it might be spring. January is looking more promising. (I do have to take off a week in February to go back to Chicago for my 6 month follow up). 

Interested to hear hematologists opinion, as she has overseen hundreds of transplants in her career. She was clear that she doesn't send anyone back until they can give very close to the effort they gave pre-transplant. Her logic is that if you go back too early, you end up back on leave and it sets back the healing process. My biggest concerns for a work scenario (as of today) are fatigue, driving in 40 min of traffic (response times), writing and typing. But in two more months, who knows! 

Gratitude  

The change from day 30 to day 60 to day 90 is noticeable, promising, uplifting and wonderful. Having just come out of a 10 day "rut" I am conscience of, and grateful for, the good days.

I still struggle to do simple things:

• put on/tie shoes
• open a ziploc bag
• take a utensil out of the drawer
• buttons/zippers
• hold a mug
• taking out the trash
• folding laundry
• type
• make the bed

Anything that involves the thumbs has to be modified for me. Pay attention to how often you use your thumbs. Give your thumbs a good massage and a kiss tonight and thank them for being healthy.

Improvements In Progress:

• Learning to walk around obstacles without a cane
• My footdrop muscles are getting stronger
• My labs look to be normalizing the last 4 wks (Immune system in safe ranges)
• Consistently walked over 5k steps a day for three weeks. 
• New goal is 7.5k (includes stationary bike)
• getting physical tools to help with zipper, writing, etc from OT

My friends and family keep me laughing and joyful and grateful.

Visits 

Skype is the best invention ever. 

I'm grateful for the cards, rides, visits, Skype session, texts and calls. My friends are solid. Thanks for making me laugh on the bad days! 

My father has been the world's best Uber driver! I have been trying to give him a break so he can actually live and enjoy his retired life! Thanks Ola for filling in!

Visitation is something I am comfortable with now as long as you or your spouse/child have not been ill recently (10 days). My last three visitors had 1-2 hr travel times, (each way!) -its humbling.

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For now following the yellow brick road to wellness: rest, exercise, therapy, stretches, nutrition, gratitude & patience. 

(I'm not doing well at all with that last one, but those of you who know me well shouldn't be surprised!)

Have a great week!

P.S. Happy Birthday to my beautiful niece Alexis who turns 10 today! Our funny, smart, performer (dances and sings). She won a Halloween dance contest this year......xoxoxo