One More Year Disease Free
Yes I have made it to another year with no disease activity but you may be wondering… “Was it worth it?” I can answer this by simply saying “yes” but that would be a short blog entry. So let’s visit where I am at today and my thoughts on my current state of health.
I see a lot of people on Facebook continue to ask the same questions but the most prominent question seems to be “how long does this treatment last?”. No one can really give you an exact timeline because everyone is different. I have been reading Dr Burt’s new book titled, Everyday Miracles and you will read stories of people that have been in remission for 10-20 years and you will read stories of people that relapsed around the 5 year mark. I personally would love to see some data that shows if people changed their lifestyles after HSCT. Did you go back to doing whatever with your body and not careful about physical activity and your eating habits/menu or did you make smart choices by trying to be physically active as much as possible and eating as clean as possible? I believe that how we treat our bodies will either benefit us later down the road or it will harm us.
There are two types of HSCT. Myeloablative and Non-Myeloablative. I had the BEAM protocol which is Myeloablative. I had little to no issues through the procedure. I had to have platelets infused a couple of times and I only felt nauseated to the point of calling a nurse in the middle of the night on day 3. On the day of rest which is the day prior to getting your stem cells back, I was taken back for a moment because I noticed that my brain fog was gone! That was really the only instantaneous thing that happened during treatment. As the weeks went on, I found that my balance issues started to fade and eventually did not use a cane for assistance. Those two things alone bring me gratitude.
Let’s talk about current struggles. I am two years post HSCT (Oct 29, 2020) but I am still hopeful that I will have more healing. Just prior to HSCT I started having problems with numbness and tingling in my hands and feet. 95% of the week, I no longer have numbness in my hands. There will be days where I can feel it. It is very faint or will be something odd like the tip of my right thumb will randomly be numb. This is a big improvement from all of the fingers on my right hand being numb and the occasional numbness I would experience on my left hand. I also experience numbness in my feet and lightly on my lower legs. After HSCT I had a lot of leg heaviness which caused more effort in my walking. The only good thing about this was that I no longer had to worry about balance issues and could focus specifically on moving my legs. This is probably my biggest complaint even though I try not to be negative. If I am dealing with stress and my legs are feeling extra heavy on that same day it can cause me to start on a negative downward spiral. If that happens I try to stop those thoughts and reach out to another HSCT Warrior for some encouragement. To date, I do have days when dealing with the numbness in my feet and the heaviness in my legs is very frustrating and I wonder if it will ever be better.
I try to do everything I can to give my body what it needs to heal. I have continued to try to eat as clean as possible. I am not perfect but, I consider everything I eat or drink because if I eat something “bad” I will pay for it a day or so later. Upon recommendations from people that have had this same procedure and some online research, I have been seeing a Chiropractor that has been helping me in ways I didn’t think was possible. But during my last appointment I told him that I feel like I am almost there but I can’t “get over the hump”. We reviewed some findings on a CAT Scan I had done last year, and made some changes to my treatment. I also starting seeing an acupuncturist. My first visit was this week and as soon as I got off the table, I immediately noticed a difference in the numbness. While waiting on the receptionist I kept walking in a circle in the office because I couldn’t get over how much relief I was experiencing. Unfortunately this only lasted 3 days but I have another appointment soon. She doesn’t expect a long term result after just one session and neither do I. This is years worth of damage that I don’t expect to be fixed in one hour. I also want to get a second opinion from an interventional radiologist in regards to the injury I had from my car accident back in 2018. Minor accident but it caused a lot of pain for several months. Sometimes at night, I still feel that same pain. This part of my journey will have to “be continued” until I do more investigating.
In December I decided to take a trip to Orlando, FL. I was surprised at how well I got around. On one day of my vacation I decided to go to Disney Springs. I was so happy to look at Google Maps and see that I walked almost a mile without resting or stopping for a short break. As the weather gets warmer I hope to have more days like this. To help, I have been using a standing desk at work. I have also been balancing on a FluidStance board. I think that has also helped with my walking endurance.
Looking back at the progress I have made, I am glad that the opportunity to have this procedure happened. Do I wish I had a much shorter timeframe of seeing bigger improvements in walking? Sure I do, who wouldn’t want that? But no matter how much more improvement I see, at the end of the day it is nice to know that each day is an opportunity for my body to heal because I no longer have disease activity. I try to focus on healing instead of thinking “what if my immune system goes haywire again?”. I wish I had more photos to share but I will leave you with these.
Until next time!
Rooftopprayer Warrior
