Monday, November 23, 2015

Day +112: Neuro, Nerves & Stubborn Clots


Since my last post I had a chance to meet with my Neurologist. I didn't inform him or even ask him his opinion of HSCT before I left, as most Neurologists are against it. The decision was mine and didn't want the bad blood with him. Well, he was amazingly supportive. In his own words "so effectively putting out the fire rather than splashing water on it once in a while?"

  • The good news: my sensory and strength scores on the left hand and foot had improved. A few scores on the right improved, but not all of them. He is supporting me however he can from this point on.
  • The less than good but not all bad news: the nerve damage in my right hand is severe. He said to prepare like it will never improve, with the hope that it will over time (we are talking years).
One thing he is helping with is weaning off the prednisone. After my last post I had a terribly rough week that landed me in the doctors office. Weaning off prednisone is a tricky task, and my latest dose reduction proved too large. Experienced a form of Adrenal Insufficiency. So, my neuro order low dose pills to help me wean slower to prevent that for happening again.

Some symptoms of Adrenal insufficiency (which can lead to Adrenal crisis): weakness, profound fatigue, dehydration, hypoglycemia, low blood pressure


Occupational therapy is a wonderful gift for me. I didn't realize pre-transplant how much nerve damage there was in my hand. It is significant. The simplest tasks are very hard for me. Therapist and I are working on preparing me for work (writing, typing, holding objects, fine motor skills). I have a bunch of new tools from what I have learned from him.

Pen foam, to thicken pens so I can hold them
Zipper and button tools
Soft Thumb splints - now that my joints have healed some
Hand made tools for pressing my car key fob buttons and unhooking the seat belt
Special devices to open bottle caps
(similar to the tools that osteo/rheumatoid arthritis patients need)

Those that have come to visit are surprised, as it doesn't look like I am struggling at all. Once they watched closely they saw how slowly I do things. 

Therapist has me playing texture games in bowls of rice, digging for random objects (dice, paperclip, walnut) so that I can retrain my brain to understand the broken messages it gets from my hand. I cannot feel 85% of what I touch, but I can teach my brain anew language. How cool is that? It too will take time.

As long as this damage stays stable and doesn't get worse, I am hopeful. It is very limiting.

Stubborn Clots

While visiting the doctor, we did a second ultrasound of my arm with the blood clot. It has been bothering me again, but in a different spot. My hope was that my body started to break it down and it moved. Nope. Original gangster is still there, hasn't decreased in size, and now he has a new friend, clot gangster #2.

Enter baby aspirin regimen, and doubling up on my GI meds to prevent more ER visits from GI issues. Oh for joy!

Since I was able to wean off one of my medications (gabapentin), used for nerve pain, I will take my baby aspirin with a smile.

Roller coaster continues
Days remain unpredictable. I will have several good days, followed by one or many rough days. Nerve pain, joint pain and stiffness, muscle spasms, fatigue (crippling level) all seem to come and go as they please. The hot flashes (chemo-induced temporary menopause) are not fun either. One second I'm freezing and the next I'm bright red and fanning myself.

Still have not needed IVIG since July 16. What a positive and wonderful improvement. Currently trying to coordinate with Chicago on my 6 month follow up in February or March, depending on their schedule.

I still have pity-party days, I just choose not to stay in that place for long. On one particularly long day, my pop took me to the grocery store and I bought myself flowers to cheer myself up. Its a matter of how you choose to cope.

Getting back to it
As of today I'm scheduled to return to work in January. So, in the next 8 weeks, I am hopeful that some issues will resolve or lessen by then. Until then I am sticking with my daily rituals of stretching and exercise.

Dyed one of my (much too blonde) wigs a nice brunette.

My new foot brace is helping me walk with more speed and better balance, as we try to wean me off the cane. It is comfortable because its outside the shoe. I am so thankful to Francois and his team:

Happy Thanksgiving
Be thankful this week. No matter what for. I know that I have a lot to be thankful for: Health, a roof over my head, a job, nice weather, amazing friends, my wonderful beau, kindness of a complete stranger today, my family...really been missing my brothers of late. 

So much goes on in the world that we can't control. Try to be thankful for the little things every day. I promise its good for the soul.

thankful for my fireplace when its 44F

Wednesday, November 4, 2015

Day +93: Follow the yellow brick 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!

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 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.


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!


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 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!

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! 

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.


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.


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