On August 19, 2018, I experienced two life milestones. I celebrated my six month stem cell birthday and spend the last night ever in my childhood home. (More on that part later!) It was a day of nostalgia and reflection unlike any other.
For those of you reading this who don’t know what HSCT is, it stands for Hematopoietic Stem Cell Transplant. Unless your a medical professional, you probably still don’t know what the heck that is. Right?!?! Well you can spend hours Googling it, or you can continue to follow my blog in the coming weeks and I’m going to give you all the gritty details – the good, the bad, and the ugly. Putting it in the most basic of terms, HSCT is a process by which your stem cells are removed from your body via your blood, chemotherapy is pumped throughout the body to destroy your bad/unhealthy immune system, and then your stem cells are re-introduced into your bloodstream where they “reboot” or “grow a new immune system” for you; one without the memory of multiple sclerosis. The overall goal and intended purpose is to halt the progression of the patient’s MS; some patients are extremely fortunate and even see improvement of their existing damage and/or symptoms. I am one of those extremely lucky patients. Yup, my MS luck has FINALLY turned around!
Six months post HSCT I am beyond grateful to report that physically I am feeling amazing! My body hasn’t felt this strong in years. While I do still have lesions throughout my brain and along my spinal cord, they are no longer actively progressing and attacking my body. For the past three years my immune system has been in a constant war with my body and although some days I might have won the battle, I always knew that on the inside MS was winning the war. Not anymore! For the time being (and fingers crossed for a long time to come) my MS has waved the white flag. Surrender! Victory is mine! It has FINALLY stopped fighting back thanks to Dr. Burt. I still have symptoms caused by the old damage that remains but the improvements in my overall quality of life have been better than I ever expected.
People always ask me, what (if any) of my symptoms have improved since transplant. Better question, I tell them, what HASN’T improved?!?!? Answer – NOTHING! Yep, that’s right. ALL of my symptoms have shown improvement! Not 100%, but I can say with confidence that some have recovered 95%! For example – things I can ACTUALLY DO NOW that I couldn’t do one year ago:
- Ride a bike.
- Walk a block in heat without my legs going numb.
- Wear high heels.
- Spend an entire day watching my niece and nephew.
- Walk my dog around the block without pain in my legs.
- Work a full day AND have enough energy leftover to make dinner evening.
- Shower without having to lay down afterward.
- Emerge from a hot shower with clear vision.
- Drive distances greater than 10-20 minutes.
- Go to bed with confidence that I would be able to get out of it the next morning…
Let number ten sink in a little. That is some scary shit! The lists goes on but I think you get the idea. This treatment was life changing for me. Some days I even feel like I don’t have MS anymore; I feel like the old me! But in fact, it’s better this time, because I have a new appreciation for it all. Despite everything I have been through, I consider myself one of the luckiest people in the world. I’m going through life with my eyes wide open now and I didn’t even realize they were half closed to begin with. Until I got optic neuritis and ACTUALLY went half blind that is.
In a recent post I talked about how I’ve been a little off the grid lately trying to figure out what my next steps are. I’ve conquered my MS diagnosis, dominated HSCT, and now….what? I told myself that if I was given this second chance I absolutely would not waste it. I can’t waste it!
A few months after being diagnosed I found myself alone in a world surrounded by people who, although they had the best of intentions, could not understand what I was going through. With MS you really don’t “get it unless you get it”. And I didn’t know anyone else that had it. I went in search of a local MS support group but I found nothing. I looked in neighboring areas and still found nothing. Where were all the people that showed up for the MS Walks?!?! I was so lost. Thankfully, in this age of technology I found an amazing MS family on Facebook whose support, encouragement, and love changed my life. These people saved my life long before HSCT did. These people are not just online friends, they are my family. Many of whom I have traveled great distances to meet in person.
MS can be a lonely disease no matter how incredible a support system a person has. You can never have too many people in your corner.. I’m always looking to add people to my corner and I love being able to be the loudest one cheering in someone else’s. Everyone who is diagnosed with MS should be able to find support if they have the courage to reach out. It’s time to get that local support group together! You’ve heard the saying…”if you build it they will come” right? Well I’ve been talking about forming a support group for over a year now and who knows how long it’s been needed in my area! It’s time to start answering the…”NOW WHAT?” question that I’ve been asking myself for months. Before I started HSCT I created my Bucket List. For every item I cross off I try to add something new. Today I’m crossing off Item Number 6 – Start a support group for people with MS. Starting this group is really the accomplishment of several goals – paying forward the support I’ve received, following through on a goal, and adding another experience to my life resume.
Now, what to add to the Bucket List in exchange for checking off this box? Besides the obvious – find people to actually COME to this super awesome group of course! (Feel free to spread the word!) As my advocacy for MS and HSCT continues there are going to be many more life adventures coming my way. HSCT has given me a new hope for my future and I look forward to sharing it with you!