Triumph Begins With U

Her journey wasn’t an easy one. Every day that she opens her eyes to a new day she is thankful just to be alive.

She left home at 16 and had been on her own for five years. A lump in her neck wouldn’t go away, so she scheduled an appointment with the ENT specialist. That’s when her fight to live began.

“I thought I was getting a cold, but it wasn’t getting better,” Mona recalls. “My neck was so hard that the needle wouldn’t go in, they couldn’t get any fluid. Suddenly, they’re asking me if I'd had a blood test for HIV and telling me they would need to do that, and they’ll need to do surgery for a biopsy.”

“I was working a job with no insurance and so they told me they’d get me an appointment at Lincoln Hospital,” she remembers. “After a week, my doctor calls me and tells me he’s gotten me an appointment. I walk in and there are two doctors.” She didn’t know it at the time, but in the midst of horror, she’d just gotten her first blessing. “Lincoln Hospital wasn’t known for treating cancer patients. They were known for treating gunshot wounds.” Today she realizes how lucky she was to be in the care of those two doctors.

The results were back far too quickly. “We’ve got good news and bad news. The good news is that we know it’s a carcinoma. The bad news is that we don’t know where the primary site is,” her doctor told her. They called for a second opinion. That’s when her world changed. She was diagnosed with Stage 4 carcinoma of the pharynx.

At that moment her spirit was broken. For a fleeting moment, thoughts of suicide entered her mind. She could not believe at 21 years old her life had taken such a dramatic change. She felt like she had been given a death sentence and recalls her oncologist telling her to “go home and be surrounded by your family. We’ll figure out the treatment you need and you’ll be ok.”

That was easier said than done and those words did little to comfort Mona at that time. “Being on my own at 16, I didn’t have a close family.” Suddenly, the colleagues from her part time job at a flower shop became her lifeline, loving her, supporting her, attending chemo treatments, and going to doctor appointments with her.

“When I got home from my first chemo, one of my friends took me out dancing. My friends were there to encourage me and give me strength when I was weak. I realized it’s true that you never know what strangers will become your friends and family.” (One of those friends even walked her down the aisle at her wedding a few years ago!)

“I started finding my strength. When I walked in for radiation, I started to notice the other people in the waiting room who were worse off than me. I kept telling myself that at least I could walk,” Mona says gratefully. “From then on,

I think my positivity helped me keep moving. I remember when I was having radiation thinking that radiation was like PacMan, getting rid of all the bad cells. I used to play PacMan a lot and I kept that in my head.”

When treatment was over, like many young adult cancer survivors, she struggled to decide how much of her struggle she would disclose. At first, she opted for silence. “It was so hard to talk about. I didn’t tell boyfriends, thinking maybe they would run away. There was always that fear. When I met my future husband at my job, I didn’t tell him until after we were engaged. He’d lost his mom and his dad to cancer. I didn’t want to make him afraid to lose me as well.”

Today, she’s making a different choice. “Now, I’m proud to be part of this journey, to be a survivor. There’s nothing to be ashamed of. I share my story loud and proud. I want to be an inspiration, a glimmer of hope to those who are in the fight. I never want anyone to feel as alone as I did at times on my journey.”

She’s also found healing with her estranged family. “I started reading Bernie Siegel’s book Love, Medicine, and Miracles. “It taught me not to hold things in. I was disappointed about the way my family had reacted when I was going through treatment. I felt they were not there for me. For many years this painful thought made me keep them at arm’s length. I loved them but from a distance. Bernie’s book helped me realize that people aren’t going to react the way I want them to. I had to let that pain go. I started on the path of understanding and forgiveness. It took a long time to remove the hurts of the past but through prayer and reflection I am now able to enjoy a loving relationship with my family.”

That forgiveness allowed her to be helpful when her mother was diagnosed with cancer. “I went down to Florida when she was diagnosed. We weren’t always as close like I’d wanted to be, but I knew I had to be by her side. I thought I’d die young,” she says reflectively. “But I became very strong and know I could be strong for her and my family. Because I’d been there, I was able to tell my brother and family what the journey was going to be like for mom. We made peace before she passed away. Before she passed on, I was able to look at my mother with forgiveness, understanding, compassion, and love.”

Mona also connected with a CHN Support Volunteer. “When I would have blood work or a procedure, I’d call and it would put my mind at ease. I was so happy to talk with someone who’d been there.” She decided it was time for her to give back.

“I wanted to live my life in a positive way, to help people. After my scans were coming back clean, I did my CHN training.” She’s been giving back as a Support Volunteer since 1999, taking her responsibility seriously. “This doesn’t have to be a death sentence. I remember having my first call. Going back and talking about my journey was challenging. I tell matches to look at me now. I tell them that it will be them.”

More than two decades after her diagnosis, Mona's life is intentionally filled with peace and joy. “God gave me a second chance, and I took it, and I Live! I know it can be taken away in any moment so I live it boldly and fearlessly. Every day that I wake up, I realize I am so blessed every day, first because I have my health, and second, because I’m happily married to a man who loves all of me. I never thought I’d be married. I never thought I would see my forties, but here I am!"

“I felt like cancer was going to be a death sentence. But I’m still here, I’m still living.” Cancer made Mona want to travel the world, she booked a trip with Contiki Tour by herself, and went to Europe. “Cancer pushed me to do more, to get out of my comfort zone,” she says. “My victory has made me fearless. Everything I went through, I don’t regret. I lived to beat cancer. I live for my mother who never got to fully live her life. I am a cancer warrior.”

Mona loves mantras, wearing positive words as good reminders of what’s important. She loves instilling faith and hope in people. She’s even begun creating bracelets & T-shirt to shout out encouragement to the world. She believes “No matter what anyone says, it’s you at your core. You have to dig in. You have to do the work yourself. You have to believe you can survive. That’s when you become a warrior.” Mona’s message to the world is “triumph begins with U.”

Learn more about CHN’s survivor and caregiver Support Volunteers or request a match — cancerhopenetwork.org

Sarah Miretti Cassidy is the Director of External Affairs for Cancer Hope Network. She has spent more than 20 years in nonprofit work — as an ally and advocate, marshaling volunteers and resources for a better world. She has been a cancer caregiver and is trained as a hospice and Support Volunteer.