I want to thank the many, many people who have sent through comments to me on my blog posts. I received somewhere between 200-250 messages (not including the direct notes/messages) over the course of my treatment. I have barely been able to send any thoughts or thanks you’s back to anyone. Apologies….
I want you to know it made me so happy to read them. Some brought tears to my eyes, they were so moving, touching and heartfelt.
I LOVED every single one.
Thank you to everyone who has my back. You know who you are ♥️
A lot of people are asking me, ‘do you feel better?’. The answer is two fold.
The short answer is YES, I am recovering very well from the immediate treatment HSCT. In fact, I’m feeling immensely better this last week. In two more weeks, the last drug I was administered will be 100% out of my body. Then, I will take inventory of my body’s state as a new baseline for the future. Last week I listed a bunch of symptoms that resolved, then two days later, one came back again (bummer I know). So there will be up’s and down’s. (See first picture below). My milestones will be: one month post HSCT, three months post, six months, one year, etc.
The deeper answer to this question is, no, I don’t know if HSCT has worked, YET. Have a peek at the second graph below and while it’s difficult for me to digest, it’s a reality check on this treatment. The immune system needs 3-6 months at least to recover. I’m anemic and if my current napping and sleeping is any indication of internal healing, then I’m well on my way ;-). The amazing part is, I am not experiencing the extreme level of illness I had last year. This is why I’m hesitant to say that HSCT has done this, yet I feel it has. Let me be patient and see how it unfolds before confirming.
They have told me the expectation of my treatment is halting of the disease. Improvement would be a miracle. Obviously, I want both (who wouldn’t?!). What I have read of other people’s improvements, they seem to happen one year post HSCT. Even 1.5-2 years post HSCT.
Here’s the skinny on my state. I have a heavy burden of lesions in my C-spine so the messaging from the brain out to the body (and the reverse) is highly disrupted and thus, causes functionality/endurance failure, proprioception problems, bodily dysfunction and pain. All of these together leave me with a high level of various disabilities from the neck down, which I’ve had for years.
I never wake up and feel ‘great’ or ‘well’. That’s why when you ask me how I am, I always say ‘I’m OK or fine’. How can I tell you the truth?
The lack of neurological endurance is my biggest mobility challenge and why I may or may not be able to walk even a few steps. I’m doing amazing right now, and am able to walk 20 steps sometimes before it starts to fall apart. Increasing endurance is the focus of my rehab and what I hope I will benefit most from HSCT (along with kicking all relapses to the curb!).
Tomorrow it will be the one month anniversary since my stem cell transplant. I’m going to eat some GF, DF chocolate cake as a gift to myself to celebrate (Jbug loves her treats, haha!).
I’ll post a walking video to see how it’s looking 🌸
Immediate recovery expectations
Future recovery expectations