Why I Do What I Do

Jay Staff

In 2012 Abby Staible and I founded Epic Experience with the goal of offering hope to adult cancer survivors and their caregivers. It is now June of 2016. More than 250 campers have enjoyed a week at Epic Experience, and we have 35 signed up for the remaining three summer camps of 2016. We have offered 22 camps, including one in 2015 that was specifically for caregivers.

Caregivers are the backbone of a cancer survivor. They come in all forms. I was a caregiver to my son Michael. Others are family members, friends and neighbors, and the incredible oncology staff at cancer centers around the world. I believe life is meant to be shared and that includes a cancer diagnosis.

I know from personal experience and the experiences others have shared that the survivor and the caregiver are usually trying to protect each other from their true feelings and fears regarding the cancer diagnosis. As a caregiver I had a feeling of helplessness. I could not take the pain and fear away from Michael. I could hug him and tell him I loved him, but I could not take away any part of the experience. My goal was to make sure he knew I was there for him. Michael said to me once, “I can’t tell you what I am thinking. I don’t want to scare you.” I remember saying to him that I think about his cancer every day and that there is probably nothing he has thought that I have not already considered. But why don’t we want to share those feelings and thoughts? Is it the thought of admitting it out loud? Is it the thought of saying I don’t want you to be in pain, or I don’t want you to die so young, or I am sad for your loss of having your own children? Is it because today we expect everything will be OK?

I wish Michael was never diagnosed with a pituitary tumor and then testicular cancer in the same year. But as I have learned through Michael and other survivors who have joined us at camp, cancer can also be a blessing. This is such a weird concept—how can cancer be a blessing? How can something that takes the lives of some of the most incredible people I have ever met be a blessing? How can something that may not take someone’s life too soon, but take so many other aspects— pain in the joints, fatigue, depression, and so many other side effects—be a blessing? It is in the relationships.

I have seen people with deeper relationships since Michael was diagnosed that before he was. I have had people that I thought were my best friends, walk away and just say things change. Some people are afraid of the word “Cancer” as if they are going to catch it just be being around the person. Cancer is not contagious. Also, is life so superficial that when the going gets tough we just walk away? Seems for some that is the way to go. But the friends and family that stick around show their true colors of love and affection, that is the blessing.

Nancy Ferro
aka
Mama Lou