Reflecting Back & Looking Forward

Today marks my six-month anniversary. I am six months post transplant. THIS IS A BIG DEAL. I stop taking antivirals twice a day (hooray!) and I begin my childhood/baby vaccines. I’m discharged from the cancer center and a full time neuro patient. My hair is growing in fast and furious (and curly!). My immune system is six months old and has all its parts and they aren’t going rogue. Something I didn’t even know was possible last year.

The past six months

A year ago I had no idea this would be such a transformative year. I had no idea that I would get a bone marrow transplant to halt progression of my MS, or that I would find the courage to get divorced. I certainly didn’t anticipate both disruptions at the same time. I didn’t know that I would be celebrating the new year and a new immune system and rediscovering me in a profound way. I didn’t realize all I had lost in the pandemic and all I was working to recover.

If I compile a list of memories they would include the following:

  • When my neurologist first mentioned bone marrow transplant and HSCT
  • When I got a tri-valve catheter surgically inserted into my chest
  • When I had chemotherapy for the first time
  • When I was paralyzed and rode in an ambulance with the lights on
  • When I decided my marriage was over
  • When my dear friends shaved my head
  • When I hoped for 4 million but got 14 million stem cells at harvest
  • When I spent a month of my life in the hospital — there are days missing, but I have photos and friends to remind me of that time
  • When my sister’s neighbor delivered my stem cells for transplant (small world right?)
  • When I was in recovery, perpetually, like quick sand, learning to rest, learning to heal
  • I battled comparison to others and comparison to my former self
  • How I continuously reflect on the love and support that surrounds me but am always surprised when someone shows up for me in a new way
  • I learned what generosity means – in time, energy, gas money, presents and assistance and will pay it forward in any way I can
  • Friends can be family; neighbors are family
  • The first time I drove again may have been more exciting than getting my license at 16
  • When I returned to work full time, tired but mentally present and grateful for the support of my team and company
  • The first time I combed hair on my head again
  • The first time I cooked dinner again for guests
  • Every time I have a day without pain or fatigue, I’m left awestruck at science and research
  • Every time I do something a new way, with a mobility device, but still get it done (my most recent accomplishment is taking the garbage out and putting the bins back in the garage)

A reflective moment

In one of my early blog posts I wrote the following about hope:

“I don’t use the word hope lightly. Since my diagnosis nearly nine years ago I have waited to get worse and I’ve seen that come to fruition rapidly in the last three years. I know this is going to be hard but I am hopeful. I’m thinking about travel, hiking and a life outside of my limited mobility right now for the first time in years. Who knows if that will happen but thinking it might and it could work to improve my quality of life and function, is one hell of a gift. Hope is a beautiful thing.”

I still use mobility aids – canes, walking crutches, rollators and wheel chairs at appointments. But I’ve learned that one metric — using a mobility aid or not — is not a determinate of health. I have more energy. I’m happier. I sleep better. My limbs are no longer frigid because circulation now occurs in my hands and feet (most of the time). I have boundaries with my energy and time. I’m able to release a bad day knowing that a good day is coming.

Hope truly has been the greatest gift in all this. It’s been hard, brutal in fact. My body has persevered and recovered and there is still more healing to do. The physical suffering is manageable and worth it because I can’t even begin to describe the absence of worry and doom. A mental load has been erased. I’m not hiking yet, but I’m thinking about it. I’m not living in fear and isolation, I’m doing things scared, messing up and trying again. I’m surrounded by a community of love and support.

HSCT changed my life and altered my health/illness journey. I am a different person.

A new year

I look into 2023 full of hope and possibility and firsts. My eyes are wide open and I’ve learned that I can’t plan. So rather than resolutions, I’m focusing my energy and attention on a few key factors.

  • Health and Boundaries: I have clear boundaries. My nervous system provides real time feedback in ways I can’t ignore. It’s up to me to protect my health, set clear boundaries and listen to the feedback I receive. I cherish this body — quirks and all.
  • Writing and Creativity: This blog opened up my creative heart and soul again. I’m freelancing, I’m writing, I’m sharing and I’m connecting. Do what makes you feel good and alive.
  • Walking and Movement: I have to continue to try and honor where I’m at. This means physical therapy, functional exercises, stretching and snackable movement all day long. Movement in all forms should be celebrated and never taken for granted.
  • Exploration and Travel: Travel is my love language. I look forward to going places I’ve never been and seeing friends I haven’t been able to in years. I’m ready to be on the move.
  • Success and Financial Freedom: I want professional advancement and additional opportunities, I’m manifesting and doing my homework, I’m ready.
  • Rest: This will always be hard in our world that prioritizes more. But I respect my body and its limitations but will do everything in my power to push forward but only AFTER I rest.

Thank you for reading

I appreciate you for reading, commenting and sharing feedback. Thank you for caring about me, being curious about my health and for submitting questions. I want to share my story and help others. I want to raise awareness on this amazing procedure and the teams that make it possible.

Not to be preachy, but no matter your current health status, take a moment to thank your beautiful, wonderous, amazing, incredible and unique body.

Wishing everyone a happy and healthy new year.

2 responses to “Reflecting Back & Looking Forward”

  1. I’m always emotional when I read your blog entries. They are so transparent that I want to run to you and hug you.
    My sister is Sharon Cormiea – following you gives me insight and hope.
    Thank you for the brutal facts and honest sharing.
    I’m so grateful for your words Carolyn.
    Sally

    Like

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