Chapter 125: 5th Craniversary Community

February 5, 2025 marked my 5th “craniversary” or anniversary of brain surgery. 5 years after a diagnosis of "incurable” malignant brain cancer, anaplastic astrocytoma, I feel as healthy and alive as ever!

Five years ago, I was on a medical evacuation flight out of Southeast Asia, from Thailand straight to Minneapolis-St. Paul to undergo surgery. Ever February since, I’ve celebrated another trip around the sun with a big solo adventure to take me way outside of my comfort zone. Although, usually elephants are involved.

I find that travel can be a powerful medicine. An experience to look forward to, plan for, and save for is a motivating tool I use to keep a hopeful mindset. If I can’t cancel the nonrefundable trip, I will be healthy. I must be.

This February, I set off on a trip to Cambodia. I toured Angkor Wat, spent time volunteering with rescued elephants, dogs, cats and monkeys at Cambodia Wildlife Sanctuary, and found some peace at a wellness and meditation retreat.

It was a magical trip. The food was incredible. The elephants were like large puppy-dinosaurs. The dogs didn’t bite me. I avoided the monkeys.

I returned with endless photos, memories, mosquito bites, and dirty clothes. I loved every moment, but I also missed home (and more shockingly, my job!) very much while I was away.

Since returning, I’ve been busying myself away with my latest goal- promotion within the academic world. It turns out that making the leap from assistant to associate professor is no small feat. I am not a researcher in the traditional academic sense. I am a clinician, a teacher, and a patient advocate with a niche in medical humanities and patient-centric care. Personally, I am incredibly proud of this niche, but it is a unique one to develop an academic career around.

From what I can tell, this is largely because academic credibility has much to do with the number of important peer-reviewed papers you publish.

I write constantly (as you all know…if you’re still here reading chapter 100 something of a never-ending blog project), but very little of my writing is reviewed in large academic journals. I prefer to share it here- for free, for fun, with YOU- the people like me who are patients, caregivers, healthcare providers, or friends of the above - to make a less-measurable, but hopefully more direct impact to the communities I advocate for.

My professional identity overlaps with my personal one in inseparable ways. I am a provider. I am a patient. I am an advocate for patient-centered care. I am trying my damndest to raise awareness for brain tumors, brain cancer, chronic illness, and invisible illness. I want STORIES to matter in patient care. I passionately believe who you are, where you come from, what you believe in, and what resources you have make a very, very real difference in your healthcare outcomes.

It’s easy for a provider to do your exam and write your prescription. It’s harder for a provider to ask “what are you known for outside of your illness? Are you a parent, a pet owner, a chef? Do you make a mean omelet? Do you like classic music or are you more of a rock fanatic?” These questions take time and don’t seem “relevant” unless we tip the scales and show just how relevant they are.

I can sense I’m on a bit of a rant here, but as I’ve been chipping away at my application for professorship advancement, I’ve had to get creative. To show that the work I am doing matters, I have been reading through and finding anonymous quotes from the messages you all have sent me on this blog over the past five years.

Let me tell you this- I am now bawling. I have been sitting at my computer all day reading and re-reading the messages of gratitude, shared stories of unforeseen illness, inspiration from fellow brain tumor thrivers and I am in AWE of this community.

I personally read every single message you send me. I ship every book you buy on this website. I respond to speaking-event requests myself. This is grassroots and personal on purpose.

All of you reading and commenting on this blog have helped me create a community of advocates. You may feel like I’m advocating for you (which, hopefully, I am!) but in truth, you’re doing so much more for me. Your interest in my story and your words in response fuel me with an almost indescribable motivation to keep going. This blog gave me a purpose in my darkest times and has continued to ever since.

I am lucky to continue in my “no evidence of disease” era. Even though science does not yet have a great way to study the impact of hope, support, and community on prognostic outcomes, I am absolutely sure the impact is significant. I tell this to my patients. I tell this to myself. I tell this to you.

Incurable? For now. Chronic? Coming soon. Curable? On the way.

Thank you all for keeping me healthy these past five years. I hope my work has had some of the same impact on you.

xoxo, Fondly,

Courtney

©️ CB2024 

PS if you want to send me any anonymous quotes about how my writing or speaking has impacted your health journey, your clinical practice, or your clinical trial techniques, I won’t say no.. :)

It’s all fuel, my friends. Fuel to keep the patient advocacy fire burning as long as I am here, sharing in the ups and downs with this community.