• bridget snell

Non linear. Thanks.

While you are staring studying my new Mr. Magoo/academic Dr. Evil image, you'll quickly notice that the remaining small patch of hair on the back of my head closely resembles the shape of Australia. My first thought is that it's a shout out de mes cheveux to my dear friend Jess who leads my cheer section down under in New South Wales. My second thought is that it has to go.


This seems to be a theme right now. And I'm not talking side effects like hair loss. Yes, I'm still dealing with a few, but that's a boring read, I'll be fine. I'm talking about what else is starting to go.


Let me just rewind for a minute. 


On the way back from Logan airport at 1 a.m. 10 days ago, we are flying down Rt. 3 during construction hours. That is to say, we're dodging cars who wait until last second to merge out of lane closures, navigating lane shifts, squinting at lights coming at us, blocking the construction lamps and getting dizzy from the blue lights reminding us of those orange signs lining the construction zone.


A month ago, I would have gripped the "oh shit" handle above the window and held on until Matt got us through that visual chaos. My mind could just not navigate all the different lights, lanes and cars. 


But on that morning, even after a long day of air travel and anticipation of getting home, I didn't have any of that awful muddle.  I didn't really notice it at first. It was a rearview thought and a quick mention to Matt a few miles later. It took me a minute to realize that I didn't just hold my breath through all of that.


I heard so many HSCT patients talk of the cog fog lift immediately after treatment. Is this the beginning? Am I one of the lucky few with symptom reversal? 


Will I suddenly figure out the Birch and Swinnerton-Dyer conjecture?


I just I don't know yet. 


In the meantime, I'm able to get up with the girls and get them ready for school with the help of my mother-in-law. After they board the bus, I spend the rest of the day fighting with myself about what I can do vs. what I shouldn't do. I'm just 10 days home and 12 days out of severe neutropenia. I need to take it easy.

The doctors call this part of recovery the "rollercoaster". I will spend the next 18 months feeling  better than ever some days, but could also feel worse than before on other days. So here are a few things to keep in mind:

  • For the next three months, I can't go to your daughter's birthday party with the girls, I'm so sorry. I can drop them off or send them with Matt, but crowds are out. This also means no classroom volunteering, no grocery runs, no being stage mom at the dance recital, no hanging out at the dojo, no watching the tennis match, no breakfast dates, no girls night. 

  • No gardening, no fresh flowers, no live plants, no dogs, no visits to the zoo, no mowing the lawn, no swimming in the ocean, lake or pool. 

  • If I see you, I will tell you I can't touch you or hug you. It will be creepy because all you'll see is a bald woman wearing a surgical mask and rubbing her arms and hands with Purell over and over. 

  • No eating out, no wine. 

I know, right? I want my old cells back too, but I keep reminding myself of Matt's mantra "one summer lost for 30 summers gained." Dr. Elias told me to go home and live, and that I did this treatment so I can enjoy my life. But until about July, I will take it easy. Then, I'm at baaaaack!


What I have been doing is sitting on the rocker on the front porch while the girls put on dance shows, ride their bikes around, hit tennis balls off the side of the house, practice their golf swings and run up to me every so often to hug me and tell me they're glad I'm home. I take walks up the road and sit in another rocker on my bestie's front porch. Walk home. Repeat. 


As for the rollercoaster, I'm ready. And the first thing I'm going to do is stop using the word rollercoaster. In my community of HSCT warriors, the word is used so often I cringe when I hear it. Even my doctors in Mexico laughed whenever they used it because they know how much I hate that analogy. 


My stemmie sister, Christene, knows me well enough to not use it. She calls it "non-linear healing." 


I like it. It sounds so scientific-y. 

Note: This is my personal story with information about my own experience with HSCT for MS. 

The information on this site is not intended to replace advice from your doctors. I do not give medical advice.