Hi Everyone,
Things are still moving in the right direction! My bloodwork is looking better, so much so that I get a two week break which my arms are very excited about:). My lymphocytes are very low but more in line with where they should be at this stage. I haven’t had any infusions of any type of blood product for over a month and no longer need Neupogen to boost my white blood cell production. The increased levels have occurred without any help which demonstrates my bone marrow is beginning to recover!
The fatigue I experience is subsiding as my platelets are increasing. I have found there is a clear connection between these things. I have been able to manage a typical day of kids activities etc. which is very encouraging. I do need to remind myself at times that I’m only 8 months out of an 18 month recovery and to take breaks when my body needs them. There are days where it’s pretty obvious that I’ve pushed a little too hard.
I’ve been back to working out 5 days a week and am slowly regaining muscle and my weight is in the normal range for me now as I’m gaining muscle (and ice cream;). I admit getting back in shape was one of the harder aspects of getting back to normal. The chemo and all the drugs took a significant toll on my physical strength. I’m getting there!
I had my appointment last week at UCSF. I did not notify them initially I had HSCT in Chicago because I wanted the appointment to be unbiased. It was pretty remarkable because my disability score was reduced from a 2.5/3 to a big fat zero!! A score of 5 is when u need a walking aid and 6 is relying on a wheelchair. MS is a progressive disease and I have an aggressive form of it. It’s rare and close to impossible to reverse disability in this situation. Not only have my physical issues rectified, but my cognitive functioning is now better than a person of my education level WITHOUT neurological disease. So basically all testing signs are showing this procedure has been successful up to this point. The neuro did have concerns about secondary malignancy and advance nervous system aging due to the intense protocol given to me, BUT conceded I just may have saved my life while risking it. She said that while she would not recommend due to the fatality risk she now understands better why I chose this route rather than living my life with altered mobility, vision impairment and cognitive decline.
It was recommended that I involve myself in another clinical trial at UCSF that has a possibility of remylating and reversing cord damage etc. This would involve extremely high doses of Biotin that I would take indefinitely. The data in lab animals has shown it to be extremely promising. I have to get this from a specialized pharmacy and it is costly but if it keeps me in a state of remission it may be worth it. I’m still researching this.
Overall I’m a pretty happy camper! The things I need to focus on now are coming to terms with the unknown. The biggest fear for all of us that go through this insane process is relapse. It happens in patients like myself about 15 percent of the time so the odds are certainly in my favor. I have had a few unexpected things happen over the last 2 years in short succession. I think it will take time and effort to feel calm about the future. The death of my father was very unexpected, being diagnosed with aggressive MS at the prime of my life was very unexpected, the medication not being successful, also unexpected.
I remind myself though, that there were other unexpected things I gained through all of this. I received an overwhelming amount of love and an outpouring of support from my community, my absolutely amazing group of friends, and my caring family. UNEXPECTED.
Jennie's MS Journey 