Chapter 124: My Journey

Photo by Shari Fleming Photography

Happy Holidays, lovely blog readers!

The past few months have been exhaustingly busy, as the holiday season tends to go. I last wrote to you all in September, but you’ve been on my mind every day since. That reads fairly cheesy, but it’s true. The community this blog built around my life as it crumbled to pieces held me up, supported my re-growth, and steadied me as I found a new type of self, one of a woman in her thirties “surviving” cancer.

The journey from diagnosis to treatment to survivorship is a windy path. I get lost on it frequently. Despite its uncertainty, especially for those of us living with the lovely incurable types of illness, the journey continues to be educational and mostly rewarding.

I recently read two cancer memoirs that I highly recommend:

“What Does it Feel Like?” by Sophie Kinsella, a favorite author of mine, struck almost too close to home as Sophie writes about her own journey with brain cancer. I found it both sad and hilarious that so many of her experiences were described the way I wrote of them. From thinking of radiation as a “spa day” to the feelings she has when she makes the mistake of Googling her prognosis. It’s a short, profound book and I relate to her journey.

“Between Two Kingdoms” by Suleika Jaouad is a longer, equally beautiful book I debated reading for the past year and finally did. Her journey with cancer is very different than my own, but the journey of moving from patient to survivor read eerily similar to the feelings of my own.

In essence, both women write about the ways in which cancer changed them. I used to think survivorship would mean finally being “pre-cancer Courtney” again, but this me is gone. Sometimes I miss her, but I’m growing to love the new version too. Perhaps that’s what survivorship is really about.

On my journey, I’ve started to focus back in on how my own story can be useful to my medical practice. As a patient, I’ve witnessed and experienced the challenge it is to access information, find education, make well-informed decisions, and advocate for yourself. It’s hard enough to do this when you’re feeling healthy, let alone during the times you’re sick!

Recently, I watched my dear cousin and friend go through her own health challenge and was reminded even more profoundly of the importance of patient advocacy and community in our care plans. Fortunately, R is a powerhouse and will undoubtably be a thriver in her journey. Plus, we get to be crazy brain ladies together :) R, fortunately, “I had brain surgery” is a great excuse when needed.

In my medical practice, I’ve been searching for ways to incorporate more patient advocacy efforts. Recently, this has led me to narrative medicine and medical humanities, where the art of storytelling is a key tool for improved patient satisfaction and, hopefully, outcomes. I’m grateful for a few recent speaking opportunities where I had the privilege of discussing these tools, in addition to the powerful tool of clinical research (education and access) in patient advocacy to groups of healthcare providers, scientists, and leaders in clinical trial development. I hope to keep sharing stories as long as I can so that patients stay front and center in the mission of healthcare.

As I’ve shifted my focus more towards the medical world, I’ve spent less time writing here, but more time writing in the medical space. Despite numerous rejections, as is the way of writing, I’m grateful to The American Journal of Medicine for accepting my latest essay for publication. An online version is available for those with access at https://www.amjmed.com/article/S0002-9343(24)00802-7/fulltext and I’ll share more here soon :)

Last but not least, my recent brain scan confirmed stability with “no evidence of disease” for which I am most grateful. As long as no wild changes happen in the next two months, I’m on track to reach a milestone of 5 years since diagnosis, with many more to come.

Thanks for ongoing health, happiness, and inspiration is owed to the amazing community around me- my family, friends, colleagues, medical team, readers, dogs, and all those who take a chance in asking me to speak, write, and share with your communities as well. We are stronger in this together.

For now, my journey continues with MRIs every 4 months, some medications to prevent seizures and combat the chronic post-radiation fatigue, an upcoming trip to help the elephants in Cambodia, and a never-ending goal of improving the lives of people who will face chronic illness long after I am gone. I hope you are all enjoying your journeys! Keep in touch.

Happy holidays to all!

Fondly,

Courtney

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