The Waiting Game & Disappointment

I wrote about my intense emotions a few weeks ago in this post. If I could go back in time and tell my former self it gets even more confusing, I would. Since early February, I have been on one hell of an emotional roller coaster.

Waiting is just making me mad

Last week, I mentioned that my inpatient admission date was pushed back for the foreseeable future and as I approach what would have been the kick-off to part two, I’m just mad. The hard part for me is that there is nobody to be mad at. I want to direct my anger, sadness and frustration at someone or something, but there is nobody to blame. My sweet transplant nurse wrote to me in an email that she feels awful. She even stated, “you can be mad at me!” But in reality, I can’t… I wouldn’t. She and her team are doing so much for me and making life-saving decisions all day, every day. I would never shoot the messenger.

I had this date in my brain as a goal to work towards. I was prepared to have chemotherapy on my birthday (I do have a history of medical birthdays after all). I was prepared for my new stem cell birthday. I was prepared — as best I could — for the agony, misery, hard times, lower body paralysis and other body break downs. But most of all, I was excited to get on with the business of healing and recovering. While I can’t plan visits with friends, trips on airplanes or vacations, I was thinking about six months out and one year out — from my planned admission date — and imagining when I would be able to plan normal life things again. Even this minimal fantasy looking forward is gone.

Waiting for MS to strike

That is precisely what is so devastating, my loss of control and my inability to put hope to a specific date. Because without that date, I feel like a ticking time bomb. As most MS’ers will know, there’s a sense that anything can set off your immune system at any time, causing a misfire, reaping further damage to the central nervous system. Anyone diagnosed knows you are forced to simply wait and see. Wait for your next scan to confirm or deny additional damage. Wait for a relapse to show the new damage in your body. Wait to see if the damage is mobility, speech, cognition, fatigue, bladder control — there are so many fun options (note sarcasm)!

My partner in crime

The other thing that brings me profound sadness is that I won’t be in the hospital with my friend, Erin. Erin is #9 at Cleveland Clinic to my #10. We met in a serendipitous fashion and she’s become inextricably linked to my HSCT journey. There is a wonderful nonprofit in the United Kingdom called Shift.MS and each weekend they have different individuals with MS takeover the Instagram account to share their story and connect with others around the world. I first did a takeover back in August of 2021 and thoroughly enjoyed the experience. When I happened to log on to Instagram one morning in early May, I saw that Shift.MS needed someone to step in for the weekend takeover last minute. I agreed and began to share my preparation and experience with HSCT at Cleveland Clinic.

Erin was told about Shift.MS by a friend, randomly logged on to Instagram, clicked on a blog post I shared and messaged me through this blog stating that she was a few weeks ahead of me in the process here in Cleveland. Sometimes social media and the internet can truly be amazing! This initial contact happened on Saturday and by Monday morning, we met in person in the lobby of the cancer center. She was there for her stem cell harvest, I was there for my labs and appointments before getting my central line catheter placed. I waved across the lobby, we hugged, it was magic.

We compared calendars and realized we would be inpatient together with some overlap. She would be there for my in hospital birthday AND my stem cell transplant. We have matching t-shirts. We would get through this together.

Erin is a physician, a mother, a beautiful soul and a gifted writer. She is sharing her story on a blog as well as detailing her experience on Instagram. We text each other daily. I learn, in detail, what I can expect from the process. Despite knowing each other a little more than one month, there is no such thing as too much information.

I can’t undersell the importance of having a buddy, a friend, a confidante who knows exactly what you are going through. I don’t have to explain fatigue, tingles or loss of sensation. I can say something, see her smile and nod, and know I am understood. Or without being face-to-face, know through her texts that she just gets it.

Living with disappointment

Being in a hospital for three to six weeks is hard to wrap my brain around. My fear and uncertainly were eased with the idea of having a friend down the hallway. And now that security blanket is gone. I won’t be by her side through the worst of it and she won’t be physically with me on my transplant date. But, she’s already been there for me and will continue to be, whether it be via text or phone. She’s the person who told me it was ok to be mad. I didn’t have to “get over it.” She also reaffirmed that I can both understand why the postponement happened and be sad or angry for as long as I needed to feel that way.

Future planning

Erin and I are already planning and scheming ways to be there for others who follow in our footsteps at Cleveland Clinic. We have discussed the need for MS-focused patient information and a program similar to Taussig’s 4th Angel mentoring program. We hope our experience, and those amazing trail blazers #1 through #8, will help everyone after us. Anyone want to fund our endeavors? Only slightly kidding.

Watching the calendar

I try to take it one day at a time and to feel all the feelings. I am focusing on eating all the foods I enjoy, working with my physical therapist and being ok with absolute limbo. My life is 100% up in the air. My future includes zero engagements.

For any other children of the 80’s, I feel a bit like Beetlejuice in the waiting room of the afterlife. He’s holding the number 9,998,383,750,000 and the “Now Serving” sign says 3.

One response to “The Waiting Game & Disappointment”

  1. Dear Carolyn,

    Sometimes it’s the loss of what’s not happened yet that is hardest to grieve, and hardest for others to understand. I, too, so wanted to be there for you birthdayS, to visit your room having emerged from the other side, to bolster your faith that you, too would get to the same place. I wanted in-hospital selfie shots in our matching t-shirts.
    Being plunged back into uncertainty after having this sparkling timeline to hold onto is a massive. Feel it. Feel everything. It sucks.
    And we are still taking our girls retreat. And our serendipitous relationship is unchanged.


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