Taking it Easy, Whether I Like It or Not

17 Jul

In early July, the numbness returned to my feet. I ignored it for a day. After a few days had passed, I found my left hand was numb and the spasms in my ribs were picking back up. On top of all of it, I was covered in fatigue so heavy that I didn’t feel like I was conquering my days so much as sputtering through.

The MRI was scheduled for July 14. My neurologist called me to discuss how I was feeling, leading up to the MRI. I told him about how my symptoms were quickly returning. He decided that he wanted to see me in the office after MRI, because it seemed likely that I was progressing.

I did the only thing I knew to do, outside of prayer, I Googled “HSCT, MS, USA”. If you’re a long time reader of this blog, you know that it was something similar that landed me in Russia as the first American HSCT patient in that facility. I have a deeply conflicted love for Google.

My quick search led me to a page for a blood cancer hospital in Denver, CO that is conducting FDA trials for HSCT. I easily found an e-mail address, wrote out my history, and sent it out like a shot in the dark.

“My name is Amy Peterson. I had HSCT for SPMS in Moscow, RU in 2012. I was a 5.5 on the EDSS when I got to Russia and became about a 1-2 after that for 8 years. In January 2020 I relapsed with evidence of enhancing lesions on brain and spine. I had 8 years of remission with HSCT. It is the only treatment offered that I believe will benefit me. Are you accepting patients for study who have already done HSCT?”

This led to a very fast back and forth. Yes, they would take a look at my case. They do take former HSCT patients. My neurologist was totally on board. This was the plan: I get the July MRI, get proof of further enhancing lesions, and then make plans for Denver.

But then, I did the MRI. The results? No enhancing lesions. The three on my brain were gone, with evidence of sclerosis in its place. The lesion on my spine was greatly reduced, though still slightly in play. I’ve never taken such good news so hard.

My feet are numb. My left arm is weak. I don’t have the energy it takes to carry on a full day. My cognitive thinking is exhausted. How can I have no enhancing lesions?

The answer was that I had not taken rest seriously enough. My brain and spine are working to heal, and I am use every bit of any advance in healing I get. I had a good talk with my neurologist, who you should know by now I love madly, and it was agreed that I needed to take rest more seriously and also that I needed to get back to my Scripture memory work.

Resting is no joke. In the months after I was released from the hospital, and up until early July, my resting philosophy was that I would work until I was exhausted and then rest for an hour or so until I was only kind of exhausted, and then I would work for another couple hours before I finally ended the day exhausted. But, I would always say, not dead.

The physical therapist who treated me in the hospital told me something very valuable that I packed away and forgot. She told me to never work until I am tired, but to rest BEFORE I get tired. As an example, she would walk me on the belt for ten minutes, and then have me sit for five minutes, then walk for ten, then stop. The rest breaks seemed silly, but, I realize now that I would have collapsed if she made me walk for 20 minutes with no break, but instead, she had me walk for 20 minutes in 30 minutes, and it was just enough.

She told me that neglecting rest was going to make my recovery take longer. Oh, hindsight.

So, long story short: I am still hanging on to my HSCT remission from 2012. My diagnosis of MS is stable with no enhancing lesions. My recent surge in symptoms from January relapse was my own fault. I don’t regret the way I hit the ground running because, honestly, I had a lot of fun and got a lot done, HOWEVER, I am taking the lesson and will be aggressively resting for the foreseeable future. My numb feet are my barometer. I find that when I work to take it easy, the numbness lets up. Perhaps many weeks of babying myself and I’ll get passed this little hiccup.

I’ll leave this update here, with the hope that it’s all quiet between now and January, when I go for another MRI. While I’d rather not relive the anxiety I felt over the past couple of weeks, I have to say that I was greatly encouraged to see how quick and easy it was for me to find HSCT being done right here. We’ve come a long way.

 

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.

 

On Being Brave

25 Mar

I continue to improve from my recent relapse episode, with no new significant news. Since my last update, everything got flipped on its head for every one of us. If you will humor me, I would like to talk about what makes me brave when things go flipside.

I believe in angels. I believe that God has spiritual beings with powers beyond our imagining that he assigns to watch over me. I also believe that there is an enemy who hates me and wants to trip me up at each step.

The battleground: my mind.

My thoughts are in constant churning mode. What’s for dinner? Are we out of milk? Why did she say it that way? I really should give the dog a bath. I really should give myself a bath. I was a real jerk to that one kid in the second grade. I should look him up on facebook and see if he’s okay. I wonder if the MS is going to come back and everyone is going to think that God is just a big joke and I am fool to think I’d ever be healed. What if that was a healing and now I am just on to the next thing? Seriously, though, what is for dinner?

My trick to being brave is that I am not. I am painfully insecure, terrified of change, and no friend to danger. I am not brave. God is brave.

I memorize Scripture as a serious spiritual discipline. I am not devoted like you’d imagine a monk to be, but when I sit down to work on it I am every time reminded of the sacredness of God’s Holy Spirit inspired Word. Meditating on God’s Word through memorizing has been world changing for me.

I often trip, but my walk is steadied with the constant reminder of God’s character. God is good. God is sovereign. God knows what he is doing. God is always right. You don’t get that assurance anywhere else except in His Word.

I know you didn’t come here for a lecture, but, I happen to know you probably don’t have a lot going on. I just memorize Luke 12:22-34. Read it out loud so you can hear it, and then, try to memorize it. It’s good for all of us.

Dramatically Recovering

11 Mar

Shortly after my last post I came down with a bad cold. The fatigue from relapse doubled and I went back to bed for most days. It didn’t send me into a helpless depressing tailspin, but it did feel like, “What!? A cold? A bad cold? Haven’t I already suffered, LORD? Why do you test me like this? Or, is this not a test and just life? Is life a test? LORD? Are you there?” Also, there was a fainting couch. (Not really, but I want a fainting couch.)

It took took 2 weeks and I have recovered. While I was busy blowing my nose, sneezing, and coughing, my body was busy quietly recovering from relapse. Today is Wednesday, March 11 and I feel better than I have in few months. Still easily tired from activity, but pleased to report these improvements:

  1. I can wear my cute red slip on shoes. I wore them all day today with zero fears that they’d fly off my feet, with no constant effort to keep them on, and I was able to walk normally.
  2. I don’t need the cane anymore for balance at all. I don’t even really need it for fatigue, as long as I am able to sit down immediately when I need to. I will likely still bring it when I go to church or similar. It helps me and all those around me to be mindful that I am not 100%, no matter how great my hair looks.
  3. The numbness in my legs and feet is almost completely gone. It flares a little if I get tired, but, again, I try to immediately sit and rest.
  4. The pain from spasms has lessened a good deal and is easily managed with rest, stretching, and position changing.

Early this morning I was showing off my shoes to a good friend and I did a little sashaying dance. This is something I could not do 2 weeks ago and I was a little surprised, so I did it again. My legs felt springy and sure. I continued do little dances all day. As the work day closed, I attempted a little dance to show my shoes off to a new audience. My legs felt more jelly than springy and more cautious than sure. This reminded me that I am not done yet. But, really, so much better.

I see my neurologist March 31. I had an appointment on March 6, but had to cancel when the car I was in suddenly lost all coolant and had to be stopped on the side of a toll road on the way there. Also, I had a cold that day, so you know I was praying dramatically on that roadside. “Oh, LORD, a relapse, a cold bug, and now this!? How am I supposed to go on like this? I just can’t, LORD. I can not.” But then we had Chick-fil-A for lunch and I got a new wind in my sails. Hope all y’all are keeping on keeping on, too. I love you all. Totally mean it.

(LORD willing, I will be sharing the book of James for 11am chapel at ACU on March 18. It’s been a long time coming, ACU.)

Because Everybody Loves a Top Ten List

25 Feb

I have been assured that my case is not urgent or critical, though I am leaning towards accepting immunotherapy to better support remission. This will not be discussed clinically until late May, so this is all I know right now.

Let’s talk about what it looks like when things are “not urgent”. If MS is a body of water, I am ankle deep right now, though I stepped off a ledge for a moment and had a scare, I appear to be getting my bearings back.

I would say that things certainly looked and felt urgent on January 27 when I first saw a neurologist. I am still not back to all better, but much improved. This week I am going to give you a Top Ten list of things I couldn’t do, or had difficulty with, on January 27, that has now improved.

10. I can walk across a dark room with ease. I could not feel my feet, so stumbled over every little thing.

9. I can drive. Lacking feeling in my right foot meant that I had no idea how much or how little pressure to apply to brakes and gas. I took myself off the road when I found myself driving 78 in a 55.

8. I can put my pants on standing up, one leg at a time. Do you have any idea what a skill that is? I remember the morning in mid January when I realized I would have to sit down, because I did not have the balance to raise one leg long enough to put my leg through a pants leg. It was a gut punch morning.

7. I can tuck my chin to my chest without a sudden electrical shock going throughout my body. If you’ve never experienced this sensation, I can’t explain it. It’s not painful, but it is annoying enough that I would avoid movement to bring it about. Today, I like to tuck my chin just to check. Yep. Still gone.

6. I can wear my cute flats. The numbness in my feet is still there, but so vague as to be more a hint of numbness. It takes a lot of work to keep shoes on your feet. Did you know this? At my recent worst I could only wear shoes that tied on, strapped on, zipped on, or was otherwise welded to my feet. I cannot describe the extreme discomfort I felt, trying to walk and hold on a shoe, something I tested in my closet every few days. On this past Saturday, I tried on my favorite red leather driving flats and found I could walk with ease in them. Though I think I am still weeks away from being able to wear them all day.

5. Sitting down is no longer a trust fall. My poor balance, together with numbness that persisted through my legs and up my waist, made sitting down a thing to think about. I had to see the chair, make note of its exact area, turn with my back to the chair, find something to brace myself with, look back at the chair, then slowly lower myself until I stopped lowering, trusting that it is the chair beneath me, because I could not feel it.

4. I can turn my head and look at a different place than where I am walking, still walk in my desired direction, and not tangle my feet.

3. I can walk up and down stairs without looking at my feet. I still do to be sure and avoid stairs if I can, but have tested it and can do it.

2. I can step up and over the side of my tub/shower without having a whole long moment of getting a lay of the land, finding my feet, deciding which foot gets to try first, finding a place to put my hand, wondering if I should get rails installed… totally over that.

1. My walking gait without a cane is just as good as with. On February 5, when I shared James, I used a cane because that was the only way to walk without thudding steps like a toddler. Now, I use the cane because I am still so¬† very easily tired and it’s nice to lean on like a walking stick.

 

So, there’s my update for the week. I don’t know much more than last week about what my next steps are, but I at least know that I can step. Thank you all for keeping up with me.