Category Young Adult Cancer, Journey, Survivorship,

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Dream Come True in Boston: Stories from the Stage

Warrior Megsie 4 Comments

Ever since I was eight years old, I have dreamed of being on stage, behind a microphone, on TV, and with my name in lights. Little me experienced a dream come true earlier this week in Boston. Only this time, I’m hella grown in a much bigger body, but I felt that anxious confidence washing over me. I never imagined my face would be on a digital billboard. It was like I had finally arrived at my long-awaited purpose.

Thanks to the nonprofit research initiative Count Me In, I was selected to participate in a night of storytelling in collaboration with Stellar Story Company and World Channel for Stories from the Stage, recorded in front of a live audience at GBH studios on February 15th.  There were seven other cancer patients/survivors with me as we told an element of our cancer stories. More importantly, this event was a way to spotlight the health disparities we faced from diagnosis to post-treatment as either Black, Hispanic, and/or Asian.

I have been working with a story coach, the Executive Producer of Stellar Story Company on World Channel. I instantly connected with Cheryl from the first Zoom meeting and knew I was in excellent hands.

Morphing into a storyteller was thrilling, challenging, emotional, and impactful. My first draft went from sounding like a blog to a final compelling story. Breathing life into the words by memorizing was difficult due to working long hours in my 9-5 job, doctor appointments, residual chemo brain, and unpredictable chronic pain sucking my energy and brainpower. Crafting a compelling story within seven minutes was excellent preparation for eventually writing my one-woman show.

When I walked into the GBH studio in my beautiful dress and stood on stage for a mic and wardrobe check, I nearly burst out of my skin from nerves and excitement! Not only was this happening, but I realized it was a full-circle moment because my story was about losing my fertility and now performing on the sixth anniversary of my hysterectomy and bilateral oophorectomy.

I had a lovely time bonding with the other fabulous cancer storytellers and hearing about their struggles, resilience, and hope. Colleen and Tania from Count Me In were super supportive, organized, and ensured we knew what was happening.

None of us had to center whiteness. It was a relief not to overanalyze and worry if I sounded too bold, cocky, or angry. I didn’t have to activate my cloak of resilience and control and could be unapologetically me.

The last image in this video surprised me because I actually looked as beautiful and confident as I felt at that moment. I made this montage with some Lizzo playing leading up to performance night. This GA girl even had friends show up – thank you, Danielle, her parents, and Noel! Knowing they were in the audience added to this magical night. I’m humbled that some of the audience spoke to me afterward.

Photo credits: Patricia Alvarado Nunez of all storytellers & GBH for the billboard

We also received a private tour of the Broad Institute of MIT and Harvard and its beautifully curated museum. In true Megsie fashion, I made another video to capture the second half of my Boston trip. Oh, the fire alarm went off at the hotel, and we were evacuated for 15 minutes. Once we walked back into the hotel, my fellow cancer survivor and storyteller friend Erinn B. noticed that Shawn from Boyz II Men was in the courtyard. They had a Boston show. A fantastic end to a fabulous and impactful trip.

Final day in Boston at Count Me In, Broad Institute, & hotel

Now I am back home with Baby Natey on my lap as I type this wishing I could make performing like this financially sustainable. I never thought my cancer experience would lead to fulfilling a MAJOR dream of mine. I’ve been able to be creative in unique ways that I could’ve never foreseen.

The episodes will air on PBS and World Channel in June for National Cancer Survivors Day, leading up to Juneteenth. I will keep y’all posted. Fingers crossed, I make the final cut!

Until next time,

Warrior Megsie

This event is sponsored by Count Me In, a nonprofit research initiative that hopes to make every patient’s experience count in the fight to overcome cancer. Founded in 2018 by the Emerson Collective, Broad Institute of MIT and Harvard, and the Dana-Farber Cancer Institute, Count Me In empowers patients to accelerate cancer research by sharing their experiences, clinical information, and even samples. To learn more, visit JoinCountMeIn.org. 

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World Cancer Day and Black History Month 2023

Warrior Megsie 2 Comments

Yesterday was World Cancer Day. I get emotional when I think about my cancer story and how doctors have consistently dismissed my pain and concerns. The thoughts running through my head about cancer and Black History month always make me want to scream in frustration.

We need providers, researchers, employers, friends, and family to

 SEE us

 HEAR us

 BELIEVE us

 RESPECT us

Going through cancer takes a HUGE toll on every aspect of our lives. Having to constantly push through barriers, deal with microaggressions from doctors, financial toxicity, career changes, infertility, and so much more is only part of MY story. I know I’m not alone in this.

Becoming an advocate was born out of my experiences and the urgent need to spotlight the issues of access to care and support. Whether you want to hear it or not, RACE, age, and how you sexually identify play an ugly role in trying to be heard and believed. I feel for the Black community, communities of color, the young adult community, and the LGBTQIA community.

Something else I want to spotlight is how I’ve become intolerant of cancer spaces where I am the ONLY Black person in attendance. I used to go to a weekly virtual happy hour that was born during the pandemic in the AYA community. It was something I looked forward to each week. There would be new people of color who joined once but then never came back. 

After the murders of Ahmad Arbery, Breonna Taylor, George Floyd, and the insurrection, I found it more challenging to be in spaces where I am the only Black person. I couldn’t continue going to virtual happy hours or journaling sessions and chitchatting about Disney characters, food, kids, etc. I felt like this country was on fire, and I had no community to honestly talk about the stress of being Black and how my nervous system was constantly in flight or fight mode, which exacerbated my pain from toxic cancer treatments.

I now understand why there are certain Black-only breast cancer groups. I have yet to find a general cancer Black-only group that’s a mix of men, women, and those whose pronouns are they/them. When I would bring this up in the other groups where I am the only Black person, inevitably, a white person felt the need to recommend “another strong Black person” to me. I shake my head because 1) I don’t need white people to suggest Black people to reach out to, and 2) The Black cancer space is extremely small, and we already know each other or of each other.

I’m tired of having to center whiteness.

I’m tired of not feeling safe to express myself fully.

I’m tired of being the only Black person in the room or on Zoom.

I’m tired of white people sending private messages saying I’m an inspiration but won’t state it publicly.

I always notice the Black people some white organizations ask to take part in specific panels, programs, or be guest speakers are the ones who don’t fully talk about how racism and microaggressions have shaped their cancer experiences. They often give diluted versions of their experiences. I’ve also noticed that I am rarely asked to participate in certain cancer activities when race is on the agenda because I refuse to make the white community comfortable anymore.

The more I learn about Black culture, the more I have begun to stop trying to filter the Black out of myself. I used to pride myself on being the ONLY one in the room. Now, it enrages me. As a Black woman, I don’t have the luxury of talking about trivial things when I see murders of Black people on TV or shot in grocery stores or killed for simply existing.

While I am thankful for the many genuine friends I have in cancerland, I am acutely aware that the majority are white. Being Black has shaped my access to care, access to pain management, and access to community support. It’s like what James Baldwin said in the quote I posted, the more I read, the more I understand.

Until next time,

Warrior Megsie

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My Back Pain Saga: Insurance Hoops, Advocacy & Victory

Warrior Megsie 1 Comment

This video is longer than usual because I’m trying to cram in five years of what it has been like living with intolerable back pain and all the insanity that came with it — the insurance hoops and having my pain dismissed over and over and over again truly crushed my spirit.

So, to celebrate my victory, I’m wearing this fabulously HUGE fascinator that is a gift from a friend. Watch my video for the cliff note version of my back pain saga.

I’m pleased to say my pain level is at a steady three, which is a bloody miracle! I haven’t had pain level this low in 5 years! I got extremely emotional last weekend and earlier this week just thinking about ALL I have endured because sooo many specialists dismissed my pain and fat-shamed me. The amount of advocacy I had to do to get to this moment is unacceptable for anyone!

All I want to do is sleep. My body is trying to catch up on five years of horrific sleep. Painsomnia is real and squashes quality of life. I honestly don’t know how I’ve been able to maintain everything professionally and personally with severe sleep deprivation. This nightmare has definitely aged me internally and externally.

Aside from getting the nerve ablation, one of the best things to happen is sleeping deep enough to dream and wake up without crying. People have told me that I don’t look like I’m in pain. Well, that’s why it’s called an invisible illness. Now that I finally have real back pain relief that will hopefully last for at least a year, I can now focus on my fibromyalgia and neuropathy pain.

Living with chronic pain can turn one into a shell of themselves. Plus, I’m single and have to do many things alone, which adds to my pain and stress. I honestly don’t know where this natural resilience stems from, but it somehow keeps me pushing forward. The smile on my face today is genuine and feels AH-MAZING!

Until next time,

Warrior Megsie