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


  1. Yeah you!!! I am so happy for all the little successes!! I am laughing at the sensory bowls! I am so hoping theywill help you. I used to make the therapist laugh about having lunch waiting for me!

    Don't rush going back to work although you want to just for something to do!! I used to do my therapy exercises in the stairwell on the second floor outside Mark Allen's office (after I had to give up my office ya know...). But I love that its a goal in site! The wig looks great btw! I would love to see your new toys to see if any would work for me, I know how selfish of me! lol.....but its an excuse to come see you too. ready for another pho run? How about early December? Have a wonderful Trhanksgiving my darling friend! I am and have always been extremely thankful to have you in my life. Love you lots!

  2. Lovely post. I appreciate the updates. By the are one hot brunette. Keep up the good fight. You are worth the extra effort. I know it isn't easy. I am sorry for that. Just know you are loved.

  3. Lovely post. I appreciate the updates. By the are one hot brunette. Keep up the good fight. You are worth the extra effort. I know it isn't easy. I am sorry for that. Just know you are loved.