MY FIRST FOLLOW-UP SCANS
It’s been 9 months since the initial diagnosis, 7 months since the confirmation, and 6 months since I started my first treatments.
In the last 9 months, we have moved 3,000 miles, both started new jobs, found a new home, got a new MS care-team, and settled into the new normal as best we can. Layer in 2 step-parents battling cancer, Social/Civil Unrest, COVID, + the usual family/personal stressors.… 2020 has been quite the year.
I think I assumed the weeks and months leading up to my 30th birthday would be smooth sailing compared to the weeks and months following my 29th birthday. I am not sure if it was a superiority complex or an invisibility cloak… or just an untarnished trust, hope, peace, and grace for what I hoped & prayed for everyday. Perhaps I had assumed that the immense amount of immediate instability would lead to a more peaceful and stable “next phase". I really got my hopes up for getting good news on these scans. Not like “miracle cure” hopes, but “good job no progress, no new lesions” kind of hope. I want(ed) so desperately for my body to finally accept all I do for it. That perhaps all of the good I try to go for myself, would be ENOUGH. Vegan, Gluten Free, 10k Steps per day, workout 6x per week, essential oils, lowered stress, starting therapy, no fast/processed food, ….. NOT ENOUGH.
I get MRI’s every 6-9 months for the first few years as we stabilize treatments and benchmark the initial changes. So, last week were my first follow up brain scans. It is my first post-diagnosis benchmark moment. It’s a big milestone for me. It’s what we use to mark progress on, estimate risk, and plot a way forward. My “MS firsts” aren’t as magical or as peaceful as a baby walking for the first time, or losing your first tooth. Mine are more like… my first MS fall, my first loss of feeling in my legs, my first time with double vision…
And…. this was the first time I got my hopes up. The first time I had deep, whole, passionate, faith filled, life-giving HOPE that my MS would have stalled and made no measurable progress, but this time the results didn't match my expectations. I held my breath and prayed for the news to be everything my inner project-process manager self needed.
(***REPEATEDLY SCREAMS EXPLATIVES***)
The results weren’t great. Weren’t terrible either I suppose. But, weren’t as clean or positive as I had hoped. My new Dr. was steady and fact based. Not cold, not harsh. Just honest, and direct. “Not what we had hoped for, but could have been a lot worse.”, she said. In that moment, as the dr’s explained to me the new changes, she gave me all that she could - honesty and transparency. She provided what little physical/emotional support she could via a video conference dr. visit.
My current brain lesions are on my motor / auditory functional areas of my left brain. Hence why my right side is slightly weaker and my left ear rings. Since my initial MRI’s I have developed 2 more lesions in a new area of my brain. So while I felt like I had done everything in my power & beyond to control/stall/halt any progress… it wasn’t enough. “NOT ENOUGH,” rang louder in my ears than the tinnitus.
PS… “IT COULD BE WORSE” really is NOT what I want to hear. I am not asking for a measuring stick of how bad it could have been to minimize how the impactful these results are/were on me. The idea that, “well at least it wasn’t 10 lesions” really is NOT a valid argument. As if I should not be disappointed or saddened by the actual outcome.
“Well at least you only lost the world championship by 2 points… It could have been by 100 points, …”
Imagine you break your leg right before your wedding day… except someone says, well, at least it’s not your arm… or your neck… or your left hand, your dress will cover the cast!…. GEEEEEEE THANKS…. so glad that my current pain is “okay” as long as it was not on a level you imagined would be worse.
I can choose to be positive that it wasn’t 4 or 50 new lesions…. it was only 2, and it could be worse. I can choose to accept that this is just my first benchmark. However, I can also proudly, strongly, and angrily admit that the results still hurt. The results still took the wind out of my #MSedUpJourney’s sails. AND I can admit that the fact that it wasn’t ZERO progress broke my soul on a whole new level.
With these updated scans I found myself RE-LIVING the grieving process of the diagnosis. I had made peace with my legs being a potential casualty to this disease in the (distant) future. I had accepted that my motor functions were likely going to deteriorate at a faster pace than anyone would hope. However… the new lesions are on my memory and emotional pre-frontal cortex. (Inserts expletives). So while I had mourned the loss of my motor functions and accepted a potential future with wheels, the new potential impact to my memories and emotions suddenly has me rethinking my acceptance.
As I sat on the floor sobbing with my parents at new of the new lesions I cried, “It couldn’t just take my legs… It has to take my memories too!?!?”… YES OF COURSE THAT IS A DRAMATIC RESPONSE, but it is real and raw. It is my grief overflowing and my future hopes & dreams shifting again. Sure, no one knows if those lesions will grow or show any real tangible impact. My disease is largely invincible to everyone…. Except that it is 100% real to me, my life, my future.
I want to inspire myself & others to push beyond, to wipe away the tears, to not search for the “why”. However, I can also admit that in the moments and days following the recent re-scans.… I often wished I had a “vice” to drown my anger in. Something to just dull the pain and sadness… take the edge off. I gave up alcohol over 2 years ago, and never tried smoking or drugs, so that leaves ice cream or Taco Bell but I am vegan so those are out too.
Now I have a greater understanding for the WHY behind the vices (food, drugs, alcohol). I considered just having 1 glass of wine or a margarita to calm my pain, but knew deep down, if I had “just 1” I wouldn’t stop there. It would become a vice or a habit or a routine. Either way it would become something I’d depend on to mask the pain I am in rather than confronting it.
I am angry. I am frustrated. I am crushed. But I also know full well that this is just the beginning. I realize the this is just year 1 of what I hope will be 50 more years of “living with MS”. I am in for more set backs, let downs, and more anger. I am not so naive to think that this is it, this is as bad as the results get. I am also hopeful that the future holds more mental strength, acceptance, medical advancements, and personal growth. There are 2 sides to this ugly disease. The side of disappointment, loss, anger, anxiety, and questions. And the side of acceptance, trust, peace, rest, and faith. The extreme pendulum of either is just humanity. The balance of the two is faith in Gods grace, truth and blessings.
A friend recently joked with me that for a woman (me) who loves planning, process, control, and situational expertise so much that she mad ea career of it…. God couldn’t have given me a worse disease. A disease that is so uniquely unpredictable, that it cannot be mapped, charted, controlled, understood, project frame-worked, or process flowed. She was right. There are worse diseases, others more terminal or rapid. But me having one that is the ultimate disease antithesis of what I hate most: uncontrollable chaos, unknowns, untamed future progress…. now that is sickening.
So as it is the absolute opposite of how I operate, I suppose all I should ask “WHY GOD”. Not in a cruel way, but in a way of asking, “what are you trying to teach me then?’”
I will not accept this and take it without putting up a fight. I intend to do whatever I can to be authentically, fully, genuinely ME for my lifetime. But perhaps, I have to put the Why behind the uncontrollable circumstances.
Charlotte Raejole