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Pardon me for the dramatic pause

18 Mar

I’m feeling a whole world better today, but it took me all year to get here. There are still bits that I am untangling and I kept waiting for a big wrap up to write an update. Making my personal health journey as public as I have is rarely easy. I’d rather only tell tales on the other side, not in the foggy middle. That said, so many of you have been key supporters in prayer and finance to get me here. I really do love you and I want you to know how I am doing.

Last summer I was still feeling the effects of my early 2020 relapse. I was scared and in regular talks with doctors about when to pull the trigger for further treatment; up to and including a repeat of HSCT. My symptoms (fatigue, cognitive fog, numb legs, unsteady gait) persisted and my neurologist ordered an MRI in June. To my stunned shock, it showed that all was calm. The MS appeared to be silent.

I was ordered to give proper rest a try. I should add here that I also had bloodwork done and other possibilities checked at this time and all looked good, with the exception of low iron. From June until November I took my iron supplements and militantly rested throughout every day; I sat instead of standing, I bought only quick fix meals, I let laundry go, I took my dog to groomers, I released the reigns on worrying about my adult (what!?) children, and I committed myself to working on Scripture memory work. I saw good results in some areas, though the fatigue and general feeling of unwell remained very heavy.

During the first weeks of December I was in e-mail communication with my neurologist, whose opinion and insight has proven most valuable. He is a champion for HSCT in my case and remained hopeful that the appearance of exacerbation could be narrowed down to something else. We talked about sleep, anxiety, stress, my kids, migraines – anything that could possibly cause my body to send out MS symptoms smoke signals in some sort of confusion. I was at a loss.

(Here’s the dramatic plot twist you are here for.)

An MRI was scheduled for Monday, December 14. On the Saturday before that, I felt especially bad. I spent most of the day in bed, only coming out of my room to do the occasional load of laundry or give marching orders. I made dinner, but halfway through had to turn the work over to Mackenzie and I went back to bed. I had a stomachache, but it wasn’t something I’d ever felt before; it was a deep and gnawing pain just below my breastbone and went through to my back. I wrestled with it all night.

On Sunday morning, December 13, my family went to church and I stayed home. I was in tremendous pain and had started to vomit. My brain went through all the files I have on hand of friends who had similar tales. Every last one of them went something like, “If I hadn’t gone to the ER, I could have died.” When Eric got home from church, I told him it was time to take me to a higher authority than Google and my imagination.

At the ER, things moved very quickly. IVs went in and a CT scan was conducted. After just a half hour, I was medicated and feeling so much better that I was certain I was going to be told that my agony was in the same category as my misguided MS smoke signals. I laid in that exam room, heavily medicated, and fully expecting to be sent home with orders to maybe try resting.

“Mrs. Peterson? I’ve got some good news: your kidneys, colon, and gallbladder all look great.”

Oh boy. Here it comes. I’m perfectly fine, go home, take your iron, blah, blah…

“But your appendix has GOT to go. It looks like it’s been angry for a while.”

I was immediately hysterical. What? Surgery? Me? Didn’t he know that my drama script did not include appendicitis? And, who ever heard of “chronic appendicitis”?

Not to be overly dramatic, but if I had not gone to the ER, I could have died.

I rescheduled my Monday MRI to have surgery instead and sent my neurologist an email to tell him to add chronic appendicitis to our list of possible culprits.

Surgery recovery went well and I was up and spending more time out of bed than in it after a few weeks. In late December I had the MRI of brain and spine done. MS was still stable.

Over the next months I continued to improve. Today, I am finally feeling about as well as I did before my 2020 drama started and I am incredibly thankful that God sent me a neurologist who would so wisely encourage me to hold off on calling an end to my HSCT remission that started in 2012.

It’s a tidy ending, in a lot of ways, but having this all happen in tandem with the COVID storyline and all the ways it has changed simple doctor’s visits and common stranger interactions, has forced me to come to terms with medical and other traumas I thought I had long ago tampered down and dealt with. As my body has been healing beautifully, my mental health space became a space of dark webs and fog. I don’t want to go into this a whole lot further, but I couldn’t make this update without giving it its due credit for my time away. I have heard from many other trauma victims that this time has been surprisingly triggering in ways that blindsided them. If that’s you, then, know that I see you.

I feel like I am getting better in every way, though I now suspect I’ll spend a lifetime before I see the true end of it all. I hope to write more and I thank you for popping in to see if I have. I really do love you. Mean it.

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.)