That philosophy would be tested when Ed was diagnosed with tongue cancer. “The weekend after Mother’s Day, I noticed a lump in my neck. I watched it for a little over a week, and it wasn’t going away, so I went to the doctor. I knew something was wrong when the tech did the test, turned off the machine, ran out of the room and came back with the head honcho.”

That test led to two months of scans, tests and seeing specialists. It ended in a Morristown Medical Center office, where Ed remembers “Dr. Cohen kept saying ‘I’m sorry.’ And I kept asking what stage it was. They gave me eight weeks of radiation, which is the maximum they can do. I asked about surgery and the answer I got was that the tumor is not in a good place. They gave me chemo as cleanup. The worry was there – if the worst comes to worst, you’re going to lose your tongue. You can’t talk. You can’t eat.”
It saved his life, but radiation took a toll and challenged his “I don’t have to worry” outlook. “Radiation has a lot of side effects, primarily a lack of saliva and no taste for food. Everything tasted like cardboard or dirt. It was a pain to eat. Before radiation, they make you drink 72 ounces of water. Drinking 72 ounces of water with radiation sores is hell on earth.” Fitted with a feeding tube, he found relief. “With the tube, you’re fed, you’re hydrated.”

A diligent, committed provider who’d worked since he was 16, treatment brought lots of changes for Ed. His treatment-induced exhaustion was bone deep. “You’re really super tired,” he recalls. “You have no energy. Everything is a chore. I stopped working and decided to retreat to fight another day. I concentrated full time on getting better.” He stopped work for three months and tried hard to let his wife and others help. Their help remains meaningful to this day. “My brother in law offered to drive me to treatments.”
Married since 1976, Ed’s wife Consuelo was a rock through the entire process. “I remember when we walked out of the doctor’s office after diagnosis, we said ‘we’re going to do this together. We’re going to beat this,” he recalls. “It sounds cliché, but it brought us a lot closer. You cherish the moments together.”
“My wife was extremely supportive. At times, I saw her reaching out and trying to do things for me. I had to make a conscious choice,” Ed remembers. “I’m going to let her help me. I think it’s helpful to her that she’s helping me. There was a lot of guilt associated with my cancer. I felt guilty that I had cancer and that it was impacting my wife.”

His granddaughter was also a source of strength. “She was a year old when I was diagnosed. I lost my own grandfather to cancer a few years before I was born. I was very concerned with not being there for her, with not getting to know her or her not knowing me.”

His fondest wish was simple, “I wanted to have a conversation with the child.” That wish has come true in spades. “Now, I have conversations with her. She comes to the office. She adores baseball and watch it together. ‘Who’s that, PopPop?’ is the sweetest sound in the world.”

Ed now gives back as a Support Volunteer, inspiring hope and reminding fellow patients that there is light and life in their futures. “There’s comfort in knowledge,” he says. “That one of the worst things when you’re facing cancer, the unknown. People go to the internet. There’s some terrible stuff on the internet, especially about oral cancer. It can be very disturbing. But when you’re talking with someone who’s gone through it, there’s comfort. I’ve gone through this. You’re sitting here, talking to me.”

He works hard to keep the worry at bay, to find that perspective he learned so many years ago on the playground. “What am I going to do? Sit here and cry? I’ve always been a goofball, a clown. Nothing’s that serious! It’s a short ride. We should enjoy it.”

The post Talking hope with tongue cancer survivor Ed appeared first on Cancer Hope Network.

Those words, spoken by so many, take on new meaning when Support Volunteer John, a tongue cancer survivor says them.

John remembers the time after his tongue cancer treatment ended well. “Following treatment, I was in the hospital for a month in a step-down unit. When I got home, I got a call from a volunteer. I wasn’t feeling much like talking, was hardly speaking at all in fact, so they filled my family in on what was going on.”

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Treatment was difficult – including learning to talk with a portion of his tongue gone. When he returned home, it was difficult acclimating to his new normal. “My family and friends were hiding from me when they ate. Smelling food and not being able to have it was torture,” he remembers. “I had to fight through depression.”

Finding Hope: from 9-11 to a degree in social work

A young, healthy non-smoker and non-drinker, John spent his career in New York law enforcement and suspects his diagnosis is related to his service after 9/11. But rather than focus on that, he has channeled all of his energy into helping others. He has recently completed his degree in Social Work and is now working as a champion for elderly clients. It’s a lightning pace, but for him, it’s worth it. “My diagnosis gave me the desire to help. I would probably have been a good social worker before, but this gives me a little extra empathy.”

“I’m so grateful to have had the support system that I did,” John recalls. “My father took a year of FMLA leave to take me back and forth to appointments. My mother would work all day, stay up with me all night and go back to work the next day.”

John’s advice: ask for help

He encourages patients and caregivers to connect with a Support Volunteer. “There are people out there who went through it. They’re the best informal support that you’re gonna find. I was lucky. I know there are people out there who don’t have that support. That’s why I volunteer.”

Cancer Hope Network provides free one-on-one emotional support to adult cancer patients and their loved ones by matching them with trained Support Volunteers. Each of CHN’s 400+ volunteers is at least one year post-treatment or successfully undergoing maintenance therapies. CHN serves cancer patients in the United States and Canada. To speak with a volunteer, call 877.467.3638 or click below.

The post Lessons from a tongue cancer survivor. appeared first on Cancer Hope Network.