So, Now What?

7 Apr


I feel all kinds of small and ridiculous, making a health update while the world is on lock down and experiencing its own common trauma. Please know that my heart is with the people who are living in high anxiety of virus, financial ruin, or desperate loneliness. That said, I understand that my relapse after 7 years of remission from a progressive state and the road ahead for me is an important piece of information to add to our collective HSCT info gatherers and also for my friends who follow and pray. I thank God for all of you and I pray you are well.

Last week I met with my neurologist through a Zoom video chat. I cannot say enough how much I feel like God gifted me with this doctor. I was highly skeptical of a video chat being any kind of help, but he spent all the time I needed talking to me about my progress from this relapse and my choices for the future, as well as his preferred choices.

First, health-wise, I am continuing to improve. When my video chat started, I could only get video, not audio to work, so I held my phone and walk/ran from my bedroom, to Eric, who was working from home, so he could fix it for me. When I got settled back in my room at my desk, doctor says, “Well, I can see that your legs are working a whole lot better!” I still have minor numbness, but otherwise, my only big complaint is fatigue and muscle weakness. I can get up and go, but only for sprints. He felt like that should get better with time. I can’t disagree, because I really am improving everywhere else.

As far as what to do moving forward, I am going to agree with the doctors here, and in Russia, who think I will just go back into remission. In some ways it still feels like I am taking a leap of faith, but at least it feels like an educated leap of faith. I am going to go forward with no further treatment. Pending an MRI in July, I will move on like this was just a hiccup.

I talked at some length with both of my doctors, whom you know I highly regard, about moving forward with some sort of immunotherapy or even a repeat of HSCT. I can still feel the breeze from the bullet of this relapse I dodged and a part of me wants to strap on a Ocrevus bulletproof vest moving forward. I am not beyond further treatment, but it feels good to think I might could just carry on like normal.

And so, this will hopefully be my last bit of news until my MRI in July, and then after that, we can let this ol’ ninja blog go back to historical artifact for HSCT researchers. I love you all and I pray we are all seeing brighter days come July.


2 Responses to “So, Now What?”

  1. Ginger McBride April 7, 2020 at 2:56 pm #

    Great update! I still find myself at a loss for words through this journey. God was good yesterday, is good today, and will continue to be good tomorrow regardless, right? I love you, friend.

  2. carolyncounterman April 9, 2020 at 9:29 am #

    So glad the running still works. Amazed at what I learn from you about health & medicine. I would have never thought that you could have a hiccup with MS. It’s like a sleeping dragon woke up and your Dr told it “not today – go back to your corner”. Love it!

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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