Month +10 through +12 following HSCT/Bone Marrow Transplant

My first year of recovery from Hematopoietic Stem Cell Transplant (HSCT) has come to a close and my summation is I am different, but not better, which is good.  Let me explain.  I can still walk, but not as far as I did after chemo in Mexico (Clinica Ruiz) nor my first four months being home from Mexico.  Based on information I have read, I have another year of recovery, so things could still change for better or worse.  It's also very important to remember HSCT's sole purpose is to halt MS in in it's tracks.  Symptom reversal is a lucky benefit some recipients of the treatment experience. I did get an MRI this month (October 2019) just to get one and I have had no changes as far as more lesions  (in my brain and all over my spine) in four years.  I wish that meant something, but the way Primary Progressive MS works for me is that my disability got worse while my disease did not change.

The following are the items that changed for the better a year ago and have remained better post HSCT*:

*Note: After posting this blog post, I found out I did not respond to HSCT, so the benefits listed below are likely a result of something else I did to try to beat MS

• My knees do not snap to a rigid straight leg like they used to when I walked, which caused constant pain in the back of the knees.  

• Another "gone after HSCT" item is that my knees bend when I walk down the stairs.  It is not easy for me to walk down stairs, but it is much better to have my knees bend.

• Bladder frequency went and has not returned.

• Bladder urgency is sporadic and seems to be due in part to sitting with a tilt (I've done some very scientific testing 😉).

Housekeeping Items

• Something very insignificant, but interesting (to me at least) is that my eyelashes are still not on a regular growth pattern due to chemo, so every three months the older lashes fall out, the new ones are already there, and it takes about three weeks for them to grow back out.

• The physical rehab I did in Jacksonville, FL at Brooks Rehabilitation with HAL from July to mid August 2019 had a good lasting effect on my walking gait and I do not fall as much or as often as I did prior to rehab.  I used to fall about two times a week and now I fall about two times a month!

• I still work out six days a week, which I believe is how I have been able to keep going. It's like having a non-stop rehabilitation program.  I am working out with a trainer/doing the trainer designed workouts to target my hip flexors (my one area of weakness)  as well as overall body strength at the same gym I have been going to for years.

• I am waiting to start Ampyra/find out if I can.  My Blue Cross Blue Shield of Texas insurance does not want to cover it and it's not affordable otherwise.  Click here to learn about Ampyra.

• I love my Segway Ninebot S with handlebar!!! It's a game changer for me.  Click here to go to Segway's website.
  

I manage to keep my thoughts pretty good by constantly reminding myself of everything I do have and how much I'm still able to do even if it's considerably limited compared to who I was 2016 and prior.  2016 was my last "good" physical year meaning I could still kind of get around on foot most of the time without any help).  I have also instituted a new mantra, "I am in control of my body".😂  You see, I always have hope and surprisingly, an abundance of patience.  

Hair at 10 Months Post HSCT

Hair at 11 Months Post HSCT - Dried Curly with a Blow Dryer

Hair at 12 Months Post HSCT - Naturally Dried VS. Blow Dried with a Straightening Product and a Round Brush

A Tattoo with Meaning

For my one year post HSCT birthday and as a tribute to my amazing mother who passed away on June 7, 2019 from a long battle with stage 4 non-smoker lung cancer, I got my first tattoo!  My mother was a Pisces, loved, fish and the ocean, so I had an ocean scene tattooed on back between my shoulder blades. The tattoo is a perfect circle, but appears not so in this pic and it's good size (go big or go home 😁).  My dad asked which animal he is and which my mom is. I said the turtle is him and my mom is the fish.  Then I looked up the meaning of both of these sea creatures for tattoos and what I found was perfect!  Turtle tattoos are considered the symbol of calm, patience, wisdom, and firmness.  They are the sign of longevity. The fish symbolizes strength, determination and adversity.