Dang it HAS been a while since I have updated! Welp, let’s recap then shall we? In 2016 I could tell that my walking distance had shortened. I could walk about 3 miles for the first 3 years post HSCT pretty consistently before my right hip flexors would start to fatigue. Something was not right. As the year went on my MS hug feeling returned with a vengeance and my cog fog was returning. MRI confirmed new lesions and so began the e- mails back and forth to Dr. F. His suggestion for Rituxan infusions was the first line of treatment. Fighting with my Dr. and Insurance company delayed the infusions for 6 months and I finally got one 500 mg. infusion. The reaction was scary ( rigors, tanking blood pressure, rash) all controlled by Tylenol and Benadryl . I decided to go on a quest for a new Dr. I interviewed 2 , and settled on the one closest to my location. Keeping a back up “sounding board” in my corner also.
The new Dr. and I decided on a game plan, following Dr. F’s advice at this point as well. Thank God this new Dr. had no problem communicating with Dr. F!!! So in December of 2017 I had (2) 1,000 mg Rituxan infusions (2 weeks apart) and in June of 2018 I will have the 6 month dose of 500 mg. I will have MRI’s in August. Hoping for no new lesions.
In this year, my walking has now gone to about a half mile. Climbing stairs or any incline at all makes things much worse. I have changed my work load, it is a constant battle between my will and my body. Working gives me purpose and joy. I am looking at other things to incorporate my time.
A second HSCT in Moscow is still on the table. It is not an easy decision to do it again. What if it fails again? The recovery time is daunting. Would it be better to use the time doing worthwhile things while I still can? Whatever I decide, I know it will be done with the utmost respect for my family and my loved ones.
I have come to know that acceptance does not mean giving up. To me, it is facing the storm and saying, “I will not be broken by you.” I choose to remain who I am. Ever evolving and learning to love in spite of the situation.
Hugs to you all.