Thriving After HNC

“The healing power of hope has no bounds. Once you choose hope, anything’s possible.” —Christopher Reeves

This quote exemplifies how my fabulous friend, tongue cancer survivor, model, actor, singer, and our HNC Fund board member, Elly Brown is living her best life today.  She epitomizes the term “thriving”!

She courageously documented her HNC journey and showcases her powerhouse vocals with her recent song “Confident” [ ] and terrific acting talent in “The Rise of Catwoman ” displaying her powerhouse vocals

Sometimes when you are personally involved in a situation it is hard to imagine what life could otherwise be. Therefore, Elly and I thought it would be beneficial for others to learn about her story of survivorship and now thriver-ship!

What was your diagnosis and treatment plan? How many years have you been cancer free? 

Elly shared, “My journey with cancer began nearly twenty years ago called, oral lichen planus. It appeared during my high school years and worsened as a young adult. Every time I’d go get checkups at the oral surgeon, they’d say it was the worst lichen planus they’d ever seen—but there was never a solid directive, except to avoid alcohol and spicy food. Finally, in 2017, my oral surgeon was doing a routine checkup and said, “Hmm…I don’t like the look of this.

It’s never what you want to hear from your doctor, but we got it biopsied and I was diagnosed with cancer very quickly. They surgically removed my stage one tumor, leaving me with a very slight speech impediment, and decided to “keep an eye on things”.  Then months later, I had a terrible earache. But when I went back to my ENT, they ordered a scan, got the results, and told me that whatever pain I was feeling wasn’t cancer. They prescribed pain relievers and sent me on my way.

When the pain became nearly unbearable I demanded a second opinion, confirming that cancer had indeed returned. I knew I wasn’t crazy! Trust your gut!  This time around, I would need much more aggressive treatment since the tumor grew to stage three. So instead of putting my life in the hands of the doctors in Las Vegas, I went straight to Elliot Abemayer at UCLA. He saw that the tumor was pressing against my jawbone, so he suggested a hemiglossectomy with a mandibulectomy. Essentially, they removed tissue and bone from my right leg and replaced half of my tongue, as well as a bit of my jaw bone, in order to increase the likelihood of beating cancer.

He worked with a remarkable plastic surgeon, Dr. Irene Kim, to remove the tumor and restore my face. Two months later, we did six weeks of radiation, five days per week, along with two rounds of Cisplatin chemotherapy. I had a feeding tube for about five months, and a tracheostomy while I was in the hospital. After the surgery I was in a wheelchair for about a month or two, slowly building up my strength again.

I’m so grateful to say I’ll be oral cancer free for five years at the end of May 2023. And five years breast cancer free in August of 2024! Yes, a year after my oral cancer treatment I had stage 1 DCIS breast cancer, but I had a lumpectomy and remained NED ever since.”

 How did hope play a role in your journey during treatment and now as a survivor?

Elly said, “When I got cancer, I was 39 years old, and I had my life-changing surgery and treatment at 40. For a young woman who made her career on the stage and screen, it was a lot to take in. But I leaned hard on my faith, and hope was everywhere.

For example, when I met my doctors I was so impressed by the way they spoke to me. They gave me options and fortified me with hope. Dr. Abemayer told me to point blank, “We eradicate cancer here”. He was confident and steady. When I met Dr. Irene Kim, my plastic surgeon, I realized immediately that she was a naturally compassionate young woman, who was determined to retain as much of my natural look as possible. I thank God every day for Dr. Abemayer and Dr. Kim. They saved my life, and they did an amazing job of preserving my beauty. I know beauty is not the most important thing, but I was a young woman then, newly engaged, and the rest of my life was just beginning.

The way they treated me gave me hope overflowing! And my family and friends saw it, and it made them hopeful, too. Having a good support system and surrounding yourself with people who make you feel loved and important is a huge part of getting well. The inner monologue, or mantra, can bring you a lot of comfort and positivity. Even on bad days, we can lean into the expectation of faith, health, and happiness.

That doesn’t mean there are no sad days or days when we despair or have to punch a pillow or scream into a closet, haha! We absolutely will have those days, and it’s super important to feel your feelings. But after an appropriate amount of time goes by, we can rest our hearts and say, “What do I need right now?”. We must treat ourselves gently, as the special, beautiful people deserving of tenderness and love that we are. We have to be our own best friends, first and foremost.”

What tips do you have for others trying to create their “new normal” after HNC? 

Elly suggested, “When something like cancer happens, our egos and our minds want to run amok, but our only jobs now are to practice stillness so we can heal. Go easy on yourself. You don’t have to be Superman or Superwoman. Let yourself rest. Let yourself cope. Let yourself recuperate. All too often we get into this mental trap of hustling, even hustling to get well after a major illness or surgery. Don’t do that. Prescribe yourself rest. Have an attitude of allowing. Allow yourself to rest, read, journal, and just sit and meditate, look at the birds, and clear your thoughts.

Try practicing gentle exercise like yoga that puts you in a place of love and gratitude for your amazing body. If people offer help, please accept it. Taking care of yourself, inside and out, is your number one job. Talk to a therapist or a clergyperson and get all of those fears and mental blocks out in the light.

Nutrition goes with this idea hand-in-hand. Even with a feeding tube, or when we are having trouble swallowing, there are ways to get nutritious food inside your body. There are plant-based shake formulas like Huel Black that can help you get nutrition without relying on the hospital-issued formulas that are loaded with corn syrup. Yvonne McClaren from Australia has collected lots of resources for head and neck cancer patients to rediscover nutrition. (IG @Yvonnemclaren).”

How long did it take you to feel like you were no longer surviving, but thriving? 

Elly said, “I’d be lying if I told you it happened quickly—for me, I felt very much in purgatory for about nine months minimum. But during those nine months, so many small miracles happened. It gave me enormous hope for the future. I recall coming out of surgery and realizing that my swallow reflex still “worked”. I remember my first words to my boyfriend, and he understood me. I remember my first steps out of the wheelchair. I remember taking my first glorious sip of cold coffee and actually swallowing it. I remember the day they *POP* pulled my feeding tube out of my tummy!

So many baby steps for us HNC patients, but every single one can be celebrated. And as the days, weeks, and months go by, little by little you come back into yourself and realize it was always you, the whole time. It’s always been you, you are glorious, and it will always be you. “You” can be steady and constant for yourself, and be the friend you need to yourself.

Before my surgery, I was a singer, actor, model, and on-camera host. After my surgery, I began working from home on my fiance’s business, Network Media. He created a company for social media entertainers, and I helped him recruit and teach people how to make viral videos. It was a marvelous career transition, one that I never would have chosen—and it turned out to give my life much meaning and fulfillment. I quickly realized I still enjoyed being on camera, so I began creating videos for Facebook and YouTube. Specifically, for people who were dealing with similar challenges as we face in the HNC community. In addition, I also leaned into comedy and drama videos for Facebook.

Rick and I are so proud to say that we employed a lot of performers during the pandemic, all while keeping the world entertained during one of the hardest times in recent history. Across our pages, we have earned billions of views! Today, our company has grown so much that I am working mostly on the executive side, creating less content now personally, and helping other entertainers make content instead. I still love being on camera, stepping into Reels and videos from time to time.”

What are your hopes and dreams today? 

Elly concluded, “I feel like I’m living my dreams right now. I’m not someone who has a five-year plan, because life has shown me it has its OWN plans for me. I want to do the best I can for the people all around me and be an example of faith and peace whenever possible.  For me, life isn’t about who can hustle the hardest. It’s about learning how to relax, let go, heal, take time with loved ones, and watch it unfold as it always beautifully does. I want to enjoy all of the people, the food, our pets, and the views all around me. Bad weather rolls in and rolls out again. It always will. But beyond the canopy of the sky is the unchanging, unfailing truth of God’s love. I hope and I dream that I’ll always stay tethered to that.”

Elly showcases the leading role hope played, and continues to play, throughout her HNC journey. She shines a spotlight on how life can unexpectedly transform each of us and how anyone can still achieve their dreams. Again, the ongoing message in all of the blogs I share, never lose hope. Your life can evolve and you too can reach your individual hopes and dreams in life. 

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