Mucosal Melanoma – Voice of a Caregiver

We respect the privacy of each shared personal stories.

For this  piece, we have removed the individuals name and have identified her as Lilly. 

Meet Lilly:

“Anyone who has cancer is the incredible person,” says Lilly.

Lilly is a full-time mom, who often spends more than a dozen hours in a week supporting her mother who was diagnosed with mucosal melanoma in May of 2015. “I never heard of Mucosal Melanoma until May 15 and want others to know that name.”

Mucosal Melanoma

According to the Melanoma Research Foundation, Mucosal Melanoma is a rare form of melanoma, making up only 1% of reported melanoma cases.  The location of the disease can affect any mucosal surface of the body.

EricaBlogPost“This is not the cancer that will run away – I want people to know the name.” Throughout Lilly’s adult life, she too has battled a series of health issues and recognizes the importance of developing a coping mechanism to support herself and her family. “Life is about fighting, about survival, not taking anything for granted. If you have gone through something traumatic… you fight.”

When Lilly first started learning about Mucosal Melanoma, she was devastated to learn about the disease’s trajectory, but she now says “you remind yourself about all the good instead of bad.” When she started digging, she found hope: “I started finding survivors, blogs, and the good things, the drugs showing improvements.”

The strength to prevail as a caregiver emerges through the love of Lilly’s mother. “This isn’t me.. I am not the one with cancer.”

Lilly discusses the importance of a caregiver’s cancer education. She says you do not want to hear “you just have to fight.” You must “make sure you are educating yourself on the disease itself to be a good caregiver.”

Lilly’s two children – a  7-year-old son and 9-year-old daughter – also share their compassion and desire to make a difference for Mucosal Melanoma. Both children help raise money and awareness by selling stickers and creating lemonade stands in their local community. The money raised by Lilly’s children has been used to buy cookies and sweets for families and friends in the patient waiting room.

In a very personal moment, Lilly shares her sister’s conversation with their mother: “What are you looking at?” Her mother responded “I wonder if I will ever see snow on that tree again.”

 Clinical Trials

Her mother’s words remind Lilly of the importance of research and opening yourself up to all opportunities. “When you deal with such a rare type of cancer, you have a 50-50 shot, and doing clinical trials, it will either work or it won’t.” She says, “If you have a chance at a shot in the dark, you have got to take it. especially with the prognosis.”  Clinical trials are the pathway to uncovering our connection to a cure.

We are in This Together

Lilly shares two important messages for all caregivers:

  • “Make sure you are being your own advocate and find support for yourself.
  • “Do not educate yourself so much that you are afraid to live.”

We are in this together. It is important to remember we all have a voice – we all have a story. Lilly could not have said it better:

Visual Graphic

“I want the world to fight with me. I don’t want to be alone. If we talk about it, we can fight together.”