Archive | January, 2020

Faith Doesn’t grow on Sunny Days

30 Jan

I heard a mediocre joke a few years ago. It starts with a man and woman getting married. After the wedding, days, weeks, and years went by where the man did not say, “I love you” to his wife. She finally complained and he says, “I told you on our wedding day that I love you and I’ll let you know if anything changes. So far, so good.”

It’s been 7 years and I haven’t had much to say because nothing changed. To be frank I struggled a bit with having my story completely out there, even as I was pleased to have shared it. I still struggle with it. It’s hard being a drama queen.

And so, here I am with news of change. I know I’m a wordy lady, so here’s your TL;DR- Amy is going to be okay.

Shortly after the school year started I noticed that I was feeling unusually fatigued. My GP diagnosed low iron and B12. I started supplements and felt some better, but still taking naps often. I had an easy to ignore nagging thought that I was relapsing. It was easy to ignore because I am the type who likes to ignore important and scary issues. Just me?

On Tuesday, January 13, I woke up and my right foot was numb, as though it had fallen asleep. I was able to walk on it and went to the kitchen for coffee, noticing that the numbness was not letting up. Over the past seven years, it has not been unusual to have a symptom pop up for a day or so, like if I had a fever or hadn’t had good sleep. Friends, I seriously had a thousand reason on file in my head for why this numbness was not what it looked like.

On Wednesday, it was still numb, and it had crept into my calf and covered my thigh by that evening. I acknowledged that it was probably what it looked like, but froze about what to do. My neurologist has retired and I retired with him. I was going to have to find a neurologist who wouldn’t take one look at me and roll their eyes because I chased a treatment I found on Google and then stopped seeing doctors when I convinced myself I felt better due to an amazing placebo effect.

On Thursday, the numbness was now in my left foot. What I had on my hands was a slow moving emergency. I call it slow moving like a hurricane -v-tornado. A hurricane gives you time to settle your matters and make arrangements before it destroys everything, while a tornado needs immediate attention. And so, I spent the next week getting all my ducks in a row, still hoping that it would clear up on its own.

On Monday, January 20, I called the neurologist that my neurologist gave my records to when he retired. I told them my story and was given an appointment of January 28. I called every day after that to see if I could get in sooner. I finally got scheduled for Monday, January 27.

On Sunday, I went to Yelp and read all the reviews about this doctor. “She’s terrible.” “Dismissive.” “I wish I could give none stars.” By this time the numbness was fully in my legs and up my waist like a corset. I felt out of steam, like I had lost every bit of fight in me. I looked at those Yelp reviews and just knew that I’d get a long sigh and an eye roll. Since I could technically walk, she might dismiss me altogether.

I dedicated the whole of Sunday night to meditating on every horrible thing that could happen. I was playing an endless game of “Choose Your Own Adventure” in my head and none of the choices saw me just going back to 2019 condition.

On Monday morning I woke up with a sick dread in my gut. As I laid in bed and cried a little, I said a prayer. My many hours of worry on a scale, and that tiny prayer had more weight and tipped the whole thing. I prayed for favor. I told God that I needed His same hand of favor that I saw in 2012, when everything rolled out effortlessly to get me to Russia, when my results were dramatic, when I was able to walk away from that struggle. Favor, God, give me favor.

We get to the neurologist’s office and I was able to brush off anxiety, knowing that I had turned it over to God. Whatever the result, I knew it would be in my favor and I was going to be fine. I waited in the waiting room for about ten minutes and was called back. The doctor was in the exam room with me ten minutes after that. She looked over my MRI records from 2012, Dr.Fedorenko’s notes about my HSCT procedure and results. The documents I was showing her said that in 2012 I was in a wheelchair, and then not.

She takes off her glasses, looks at me, and says, “You were in remission for 7 years? That’s incredible. I’ve heard of stem cells, but not much about HSCT.”

I almost cried.

She escorted me into another exam room where she did a full neuro exam. At the end she says, “It is very clear that you are relapsing and it looks like it’s moving quickly. I want to treat this like an emergency without the emergency room.” And then she makes phone calls to a different hospital, with a doctor she likes and tells me to go there and get admitted and they’ll do an MRI and start steroids.

I did cry.

Before I left we talked for a bit and I told her about my vague understanding of what possible choices I might have for post HSCT treatment. She says that she doesn’t know anything about it, but that it obviously worked, so she encouraged me to find a neurologist who might know more, even as she assured me she was going to educate herself and would be willing to try anything that was approved here in America.

Oh, you know I’m writing her a dandy of a Yelp review.

At the hospital I was quickly moved to the MRI for a full scale 2 hour 45 minute scan of my brain, upper spine, and lower spine. It was late when we wrapped up, so I had to wait until the next day for results.

Early the next morning a 16 year old boy came in my room and introduced himself as the on call neurologist, and also an MS specialist who almost exclusively treats MS. He had read my doctor’s note and had thoughts.

“7 years and 2 months of remission from a progressive state? That is amazing.”

The more he talked, the more I realized that he was not 16, but that I am old. He told me that I had three enhancing lesions on my brain and one large enhancing lesion right at the bottom of my upper spine. This would be the one causing my waist down numbness.

He told me that he did not want to discuss long term treatment until we got this under control. My steroids were started that day. After he left, I emailed Dr. Fedorenko to let him know and to get his thoughts. I had already told him that I was being seen and he told me he was withholding opinion until he got my MRI result.

The response took a minute to wrap my head around. His experience has told him that patients who relapse after a lengthy remission often respond very well to steroids and return to remission. My 2012 bone marrow transplant was still in play. His advice was to get the steroids and then have another MRI in 3 months, during which he expected the lesions would no longer enhance and all would calm down. If they were still enhancing, he said he would advise I start immunotherapy, and if that didn’t work, I could always do another round of HSCT. Though, he stressed that he did not feel it would be necessary.

Doogie Houser shows up the next morning and I tell him what Dr. Fedorenko said. “That makes sense. I can do that. Your insurance company might disagree, but I can just write them a letter.”

He ordered physical therapy for me and I was seen by a series of therapists over my stay who focused all their attention on getting me through this rough patch and over into the doctor’s predicted remission after a month or so. I told all who were treating me that I had two important speaking engagements next week and the whole team worked to educate me about how to rest during a flare. It took a team to convince me to rest.

One of my engagements is to share the book of James on Wednesday, Feb. 5 for chapel at ACU. The PTs walked me up and down the hall on a gait belt while I tried to recite James. It got better as they would lay¬† me down to do treatments on my movement and then walk me, do a treatment, then walk me, rest, repeat. Though it got some better all my PTs agreed I should use a cane. Neurologist’s opinion was that I should use a wheelchair for anything over a hundred yards, and a cane while standing for no more than a half hour or so. He advised me to sit for the workshop teaching portion.

I am home now from the hospital, buzzing from high dose steroids and information overload. The plan now is that I will be low key and focus solely on these next two speaking events. My church, my family, my One Day Academy co-workers, my team of doctors and therapists have me all lined up to be able to have such tunnel vision. This next week is not about getting better because I am not expected to get better. Both Dr. Fedorenko and my doctor here believe it will take some time, but that I should recover.

In three weeks I will return to the neurologist. He expects me to look much better. He told me yesterday morning with a shrug at discharge that he really didn’t expect he’d see me much after my three month MRI.

In summary, the best hematologist in Russia and the best possible neurologist in America are collaborating on my case and agree that it has a very likely good prognosis. I am in pretty rough shape right now, but my brain is swimming in James. I am counting it all joy when I face trials of various kinds because I know that the testing of my faith produces steadfastness and I must let steadfastness have its full effect that I may be perfect and complete, lacking nothing.

Thank you for reading this far and thank you for praying me through. I love you all. Mean it.