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Faces of Blue: Vanessa Ghigliotty

By January 9, 2019Faces of Blue
Vanessa Ghigliotty get your rear in gear GYRIG
Vanessa Ghigliotty fight crc colorectal cancer

Vanessa flexing a Strong Arm Selfie at Fight Colorectal Cancer’s Call on Congress.

Vanessa Ghigliotty feels like she has had everything thrown her way. Being a single mother at a young age was compounded by a stage IV colon cancer diagnosis at just 28. She had to struggle with the many firsts that came at a time when there were so few under 50 with this disease. When she shares her story, she does it to inspire others who face that diagnosis, and as proof that you can fight with passion and purpose despite the hardships you have to go through. Sixteen years after her diagnosis, she is proof that you can survive this disease and use your experience to help others.

“I think it’s important to share my story because I started 16 years ago. Not only did the medical community refuse to acknowledge young adult colorectal cancer, but there was zero support for young adult colorectal cancer patients and young adult cancer patients in general. Zero!”

It took a second opinion for Vanessa to even get a proper diagnosis of stage IV colon cancer, and when she was told, no one explained what that meant or how cancer staging worked. “As a young mom I immediately thought about pregnancy, labor, and dilation on that scale of 1 to 10 centimeters. So 4 didn’t sound so bad. And I remember coming home and being so happy, until I did more research on the American Cancer Society website and discovered what stage IV colon cancer actually meant. I was devastated.”

Despite being told on multiple occasions that there was no way she could have an “old man’s disease,” she not only had it, she had the worst possible stage. And what little information she could find was

Vanessa Ghigliotty Stacy Hurt conference

Vanessa with fellow survivors Stacy Hurt and Allison Rosen.

grim. There was nothing about surviving, and only information about death. When you have a young child, that is heartbreaking news to read. As she struggled through on her own, Vanessa slowly connected with others who saw the same void and were eager to be pioneers in creating a community of survivorship.

“I had to navigate the whole system by myself and be my own support. I had figure out how to support myself, fight for myself, and become my own advocate. And I had to learn how to be a really strong voice because I had no one to back me up. There weren’t support groups. You weren’t referred to social workers as quickly and easily as you are now. It’s like I survived during the dark ages of colorectal cancer.”

The only resources Vanessa could find focused on senior citizens, and talked about nursing homes or care centers. Nothing addressed the unique needs of a 28-year-old who was trying to balance work, motherhood, and getting the bills paid on time. And a year into treatment when she finally did find a support group, she walked into the room only to find it was full of retirees who could not relate to anything she had to say.

Vanessa Ghigliotty parents

Vanessa and her parents.

Because Vanessa was a single mom and her son was only 11, she had to make vital, yet stressful decisions that would ensure her son was cared for during her treatment and beyond if it was needed. The day she sat him down with an attorney and a social worker was a day she regrettably knows his childhood was stolen. Vanessa had recently lost her maternal aunt to breast cancer, and knew the hardship that cancer puts on a family left to sort through their loved one’s affairs. As a girl from the Bronx, she knew that honesty and truth was what her son needed and what he was going to get. And as hard as it is for a parent to talk to their young child about cancer and the potential outcomes, she did what she knew was best for him.

“I had to sit down and tell him that I most likely wasn’t going to live, and I let him decide if he wanted to stay my parents or live with his dad in California. We had to go through our home and our belongings so he could let me know what he wanted to keep after I was gone. I wanted to make sure it was in my will.” It was that day and in those impossible moments that Vanessa feels like cancer forced her to steal her son’s innocence from him.

Vanessa faced many complications during and after her treatment, and was admitted to Memorial Sloan Kettering on numerous occasions. It was there she realized she had a knack for connecting with

Vanessa Ghigliotty Memoral Sloan Kettering MSK tattoo

On the 15th anniversary of her diagnosis, Vanessa got this tattooed tribute to the hospital that saved her life.

people diagnosed with any type of cancer. Her varied experiences as a patient and survivor gave her optimism and hope, and it also provided her a bridge to connect with others impacted by cancer. She could always find some way to relate, and that’s an import thing for a patient who can often feel so isolated by their disease.

“I didn’t handle things in my life well, but I handled my battle with cancer extremely well once I found my footing. And once I found my footing I also started to find joy again. People would be so lonely on the floors of the hospitals, doctors and nurses would be overworked and stressed, and I could always find the words that would lift their spirit. This hope and joy Vanessa had was infectious, and hospital staff would often stop by her room just to chat, take a moment to breathe, and find themselves restored and ready to continue on with their difficult job of caring for patients with cancer. Soon Vanessa would find herself passing hospital stays in the MSK patient lounge, where she would speak with everyone – often connecting and introducing patients and families that would not have met otherwise.

It was during one of these stays that Vanessa had a realization. She was alone in her room talking to her then boyfriend (and future husband) when she started to cry over some disappointing news she had gotten earlier. “I never cry in front of people, and I cried in front of him. I told him that I felt like everything I had been through with my cancer had happened for a reason. This is almost too much for one person to take on, and yet there I was finding the light in this darkness.”

Vanessa felt called to pay it forward – to take her gift of being able to connect and giving back to other patients. “I knew in that moment that the remainder of my life was not mine. The rest of my life was going to be dedicated to giving back until the day I die. And because I felt this passion and purpose forming in me, I knew I was going to live because I had work to do with other survivors.”

Vanessa Ghigliotty selfie conference

Vanessa is know in the CRC advocacy community as the “Selfie Queen.” It’s one ways she connects with other patients.

The connectivity and commonality she can find with everyone she meets can be witnessed by anyone that follows her around. “When I say this happened for a reason, it’s not cancer I’m talking about but all the complications I continued to have from cancer.” It was during those long stays in the hospital that Vanessa saw a gaping whole in the cancer community, and a need that wasn’t being met by traditional models of patient care. “I’m meant to give back. I’m meant to help others fight because I had to fight for myself, and I know first hand how impossible that can seem for a patient.”

“I love that feeling, knowing that my experiences with cancer and survivorship help me to help someone who feels so alone and helpless as they try to navigate the world of cancer and fight with what little strength they have. I love knowing that I can help them take their negative experiences with cancer and find the joy and connection in community.” Though we can’t change the diagnosis, pioneers in advocacy and survivorship like Vanessa are showing patients to look for the good, find the silver lining, and most important – find the connection so they can know that no one is alone in your fight.

VEE ON THE STREET RETURN TO FACES OF BLUE  LEARN MORE ABOUT YOUNG ADULT COLORECTAL CANCER

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