Writing has helped me heal.

And so has sharing my story.

Photo by Austin Chan on Unsplash

I’ve been working on something for a while now. It’s been sitting in a word file waiting for me to be ready. Sometimes I share bits of what I’ve written, but not the whole story.

I’m a peer mentor for others diagnosed with Myelodysplastic Syndrome (MDS) who are facing a stem cell transplant. Patients are referred to me through BMT Infonet.org. I also lead a monthly support group for AA/MDS.org. This is for people who have either had a transplant or are getting ready for one. Sometimes we have visitors who are curious about stem cell transplant and are trying to make up their mind about having one.

As a peer mentor, I meet with transplant patients one-to-one. I like to do this over Zoom because I think it helps me create a deeper connection with the person. During these meetings I offer my story to help them understand more about the procedure and the after effects. But I remind them that there are no guarantees that things will be the same for every person because the disease and treatments are very nuanced. I regularly text these people and we meet as often as they need to. Sometimes my husband sits in on these calls when their spouses want to hear his point of view. The caregiver plays an essential role in the recovery of a patient and it can feel daunting. Joe encourages them to take it one day at a time and to make sure to take care of themselves.

As a support group facilitator, I’ve met some amazingly brave people. Some are just learning of their diagnosis and others are dealing with a wide variety of issues both pre and post transplant. Different types of Graft vs. Host Disease (GVHD) are the common issues because most patients experience some form or another. Acute GVHD usually happens within the first 100 days after transplant, primarily affecting the skin, GI tract or liver. Chronic GVHD can pop up anytime, and can affect many organ systems. Each patient is unique.

MDS is confusing and scary because it’s a disease that most people have never heard about. Stem cell transplant is the only known possible “cure” that’s both extreme and overwhelming. It’s hard to make sense of it all, especially early in the diagnosis. In my case, I thought I was suffering from depression and was shocked when I learned I had a rare form of cancer.

Many people mentioned I didn’t look sick before my transplant even though my skin was pale as a sun bleached oyster shell. My skin was also covered with multiple bruises and the black circles under my eyes couldn’t be hidden by makeup. Chronic exhaustion had me falling asleep everywhere I went. I even conked out in an auditorium filled with people during the climax to Hamilton.

After my stem cell transplant, I looked like a cancer patient, with my hairless body and slow gait. My face was frozen in an expression of surprise. You never realize how important eyebrows are until you don’t have any.

High doses of prednisone didn’t help my appearance. One day I walked down the stairs, with my bald head shining and my cheeks fat from steroids, wearing a white shirt and gold hoop earrings. “It’s Mr. Clean!” my husband shouted. Thankfully, humor is like medicine for me.

You can’t watch bone marrow heal. It’s not like checking the progress on a surgical incision as it mends itself together. Instead, you have constant blood tests to assess all kinds of levels and counts. Then multiple bone marrow biopsies (BMB) must be performed. Those are the only way to determine the success, or failure, of the transplant. To date I’ve had thirteen BMBs.

During my long recovery, I returned to working on a novel I’d begun a few years ago. It’s a fiction, so it gave me the opportunity to think about something other than my disease and transplant. I finished it around the time of my first “re-birthday.” While it’s not published yet, I still felt a sense of accomplishment. Then I immediately started on my next book.

At first, I thought this novel would be a fiction, using my own experience as a guideline. I imagined the main character from my first book being diagnosed with MDS and the story following her journey through transplant. As I wrote, I started to feel this approach was wrong. So I changed direction and began re-writing it as a memoir, never believing I’d publish it.

A few months after my transplant, someone suggested the book, Between Two Kingdoms by Suleika Jaouad. In this memoir she shares her experience about being diagnosed with MDS that was already transitioning into Acute Myeloid Leukemia (AML). It chronicles her first stem cell transplant and recovery when she was in her twenties. Reading this book made me feel less alone. I still follow her through her Substack called The Isolation Journals. Her continuing journey includes a second transplant and another beautiful book called The Book of Alchemy. Sadly, she’s now facing another transplant as her disease keeps resurfacing. I’m in awe of her strength and perseverance.

About a year after my transplant, I joined a writing workshop sponsored by BMT Infonet called Writing is Healing. This was lead by the author Heather Harpham whose memoir is called Happiness: The Crooked Little Road to Semi-Ever After. In the book, she chronicles her experience having a child with a rare blood disorder that required a stem cell transplant. Participating in the workshop helped me find new ways to express the same kind of experience from my own perspective. I’ll be forever grateful to her for all the wisdom and guidance she shared.

In the fall of 2023, I discovered Substack and started to share my thoughts with the world. More like the 100+ followers I have. Here’s a link to that first post:

The Don’t Want Tos

I still suffer from the same malady of the Don’t Want Tos. Some days are good, others, not so much. But I’ve survived and live my life one day at a time. I’m often asked to repeat my story. I’ve done it so many times that I’ve distilled it to almost an elevator speech:

I was diagnosed June 8^th of 2021 after my primary care doctor referred me to a hematologist when routine bloodwork didn’t look good. My diagnosis was Myelodysplastic Syndrome, EB-2, moderate-high risk. My blast count was 13% so my doctor referred me to the transplant team at VCU. On March 31^st, 2022 I had an allogenic stem cell transplant. My son was my half-match donor. While it’s been a rollercoaster ride, I’m now in full remission, 100% donor cells and living a great life.

Sounds easy, huh?

Not too bad, right?

Well, it wasn’t easy or great. It was living day by day. I couldn’t focus on a distant goal. I could only pay attention to the challenge in front of me in each moment.

It was intense and scary. It was also boring and lonely. It was more isolating than Covid. Everyone else was out in the world, but my husband Joe and I were still on lock down.

I’m glad I kept journals. When I read them I’m amazed about how far I’ve come. They also help me remember the important things I need to share with others going through this grueling experience. The pages are filled with my vulnerable thoughts and feelings. They help me because my memory is still fuzzy. Chemo Brain is real.

My volunteer work as a peer mentor and support group facilitator has been more rewarding than I could have imagined. Each time I meet a new person going through this experience I share my story with the intention of giving them hope and tangible solutions. We talk about everything from hair loss to food choices. I offer suggestions about things to pack for the month long hospital stay. I encourage journaling and any creative outlet as a way to combat loneliness and boredom. I’m often told our conversations have made a difference in their feelings. Many of these people have become my close friends. I’m sure we’ll be in contact for the rest of our lives.

A few months ago I came across a writer on Substack named Jessy Easton who was sharing chapters from her memoir. While her story is very different from mine, her work inspires me to share more about the hard things I’ve experienced.

I’ve decided to follow her lead and share the memoir I’m working on. I don’t desire accolades or sympathy. Instead, I encourage you to simply accept my work as an honest account of how this terrifying life event has changed me.

Starting this week, I’ll be trickling out the first four chapters. These are free for everyone. All I ask is for your feedback, especially if you find the content relatable. I’d also like to hear your “elevator speech” if you too are going through a difficult time. It doesn’t have to be the same diagnosis or treatment. There’s no competition in cancer or other hard life experiences.

The remainder of the memoir will be available to paid subscribers, so if you like what you read in the first chapters, please feel free to join - BTW - I’m offering a 50% off discount until the end of June.

I’m still not sure of the title, so for now I’ll call it:

Memoir of a Cancer Created Introvert.

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