When I heard that I had cancer, my wife and I called up a good friend of ours. She had been diagnosed with breast cancer, and had gone through chemotherapy and surgery. We went to her house to talk. She told us the difference The Cancer Resource Center made in her life. I thought, “Oh yeah, yeah.”
Suddenly, Ginenthal’s face lit up as he warmly greeted his ‘buddy from a while back’. The two of them embraced and updated each other on what was going on in their lives. He told his friend,
“I’m a grandpa now. A little boy, Oliver, he’s 11 months old.”
Throughout the interview, he saw other friends and former students he knew. Nothing in the world could have stopped him from calling out a warm greeting to each of them. In an interview where I wanted to capture his energy, these encounters definitely showed me the real essence of Lee Ginenthal.
Returning to the conversation, Ginenthal told me he kept telling himself he could deal with the cancer on his own. But he went into work the Monday following his diagnosis and recalled having trouble focusing.
Halfway through Monday, he told his coworkers he needed to leave. “I just said, ‘I’m out of here. I can’t do this today.” Ginenthal worked as a special ed teacher and was also part of the training staff. Now, he is a full time staff trainer for the school district. “I have to be on my feet and aware all the time,” he added.
Ginenthal then told me about his experience at The Cancer Resource Center. “Monday, I left mid-day, and just walked into The Cancer Resource Center. No appointment, no nothing. Bob Riter came to the door, introduced himself, and I said, ‘I’m Lee Ginenthal. I was just diagnosed with prostate cancer.’ And he said, ‘Would you like a cup a coffee? Do you drink coffee? Let’s sit down and talk.’ We went into the library. He closed the door. He made me a cup of coffee. He knew the questions to ask for me to tell the story of the whole diagnosis process. He knew which questions to ask in terms of figuring out what it was that I needed at that point, and then he gave me an information packet for the Cancer Resource Center with information about websites that would be good sources of information about prostate cancer. He lent me several books, and said, ‘You know, we have a monthly group of men who have had prostate cancer and their partners that meet. Why don’t you consider coming?’ And that was the turning point.”
Ginenthal’s journey with cancer was extremely difficult. That was not the only battle he was fighting at the time. He told me, “What made it hard for me at that time is three days before I was diagnosed I found out my father’s stomach cancer had returned and metastasized.”
He was told his father had less than six months to live. “This was in the first week in May,” he said. “I ended up by the second week in May taking off from school because my father was deteriorating rapidly and I needed to help my mom take care of him.”
His father died June 26th. To add to the stress of the situation, his wife had hip replacement surgery three days later. The two of them scheduled their surgeries so that one would always be healthy enough to take care of the other.
Ginenthal then told me about his decision making process in regards to having surgery or doing active surveillance. Another term for active surveillance is watchful waiting. He explained, “With watchful waiting, they monitor you and every six months, they do blood tests and biopsies. I didn’t fit the profile. If I was four or five years older, I would have fit the research recommended protocol for watchful waiting.”
Through all the back and forth with doctors, however, Ginenthal continued to go to the local prostate cancer support group. Around the same time was the beginning of the Men’s Breakfast Group through CRC. Returning to his brighter self, he told me warmly, “And when I joined that group, there were six to eight of us sitting in a little round table in the corner of the restaurant. I was there this morning. We take up four tables and there are probably sixteen guys that meet there on a regular basis.”
The men vary in age from their thirties to their eighties, with a range of cancers. Each man has his own story. “We meet once a week for breakfast,” he said. “And most of the time we don’t even talk about cancer.”
Ginenthal then explained to me exactly how the Breakfast Club was run. “If there’s a new person who shows up at the group, we do what Bob calls our ‘organ recital.’ We introduce ourselves, who we are, what kind of cancer we have, and how things are going in our lives. This circle of friends has become a part of my life. I call this Friday group my weekly attitude adjustment. It puts it all in perspective. You look around the table, and there are guys who are going through much worse things than I’m going through. And they’re probably looking at somebody else thinking the same thing. ”
While attending the Men’s Breakfast Group, Ginenthal continues to attend the prostate group. “A lot of times it’s just the guys with prostate cancer in attendance. We’ve become a brotherhood. There’s stuff that can happen as a result of prostate cancer surgery or radiation, issues of impotence and incontinence. That’s not the kind of thing that you sit and talk with just anybody about. So we sit and talk and share. And you say, ‘This is what I’m trying.’
This unofficial network was something I had not considered before. When thinking about Ginenthal’s experience going back and forth with doctors, it was comforting to find out that this kind of intimate and honest support could be found. “There’s so much new information coming down the pike that you can’t always get that information from the doctors.” Ginenthal’s advice was to find out from people going through what you’re going through. This network seemed to be extremely valuable outlet for these men trying to figure out the mess of decisions that needed to be made. In times of tragedy and distress, humans are always hungry for the truth. The truth was found in those meetings.
Ginenthal described his transformation from being someone who needed help to a person who was the source of support for others. “Initially I started as somebody in need. As time went on, once I got through the surgery I got my life back on track. Now, when a new guy shows up at the breakfast group, newly diagnosed with prostate cancer, Bob says, ‘Why don’t you talk to Lee?’ And I talk to them briefly over breakfast I say, ‘You wanna come over to my house? We can get a pizza. Bring your wife. We can talk.’ And guys have come over newly diagnosed just like I was, deer in the headlights, and you sit and you talk and I share the information that I have and my experience. Some folks are not comfortable talking in a group setting initially.”
Ginenthal continued on by saying, “Once you make a decision, you can’t go back, you can’t second guess yourself, but sharing the confusion, the concern – we end up becoming good buddies, folks who we might not have been best friends with, folks from all walks of life.”
I then asked Ginenthal what his advice would be for someone who was recently diagnosed. His response was, “Don’t rush into making any decisions. Take the time to get information. That’s something that the Cancer Resource Center is good at- helping navigate through the volume of information. We’re buried alive with information online. We don’t know what’s legit or what’s not. Go to the CRC and talk to staff, volunteers, or survivors about accurate information- talk to folks about what it’s like. The motto of Cancer Resource Center is ‘so no one has to face cancer alone’. Don’t try and do it alone. At least initially get the information, make some connections. Know there are folks to talk to.”
Ginenthal ended his advice with something I still carry with me every day. “When you make the decision, try not to second guess yourself. Go on with your life.”
At this time, Ginenthal is cancer free. He is going for blood work every 6 months for the first five years, and then he graduates to once a year. “At the Survivors Day Celebration or the Annual Walkathon, I bump into people I know, who also are cancer survivors, teachers in the school district or neighbors or friends, and all of a sudden we have a very different relationship.”
I asked how the relationships are different. He smiled and told me, “Closer. Much closer. It’s a club that nobody chooses to join. I’ve heard Bob use that expression.”
I started to compliment Ginenthal and tell him what an amazing person I thought he was. Ginethal said with a kind smile, “It’s more about CRC than me. This is an amazing resource. There are few places in the country or the world that have this as a resource, and whatever money comes into this place is used locally. It’s right here for this community.”
Donating money to large organizations can be somewhat nerve-wracking because it’s unknown if the money is going toward administrative or advertising costs or if it’s going directly toward the cause. The Cancer Resource Center uses all their money toward the thing they’re fighting for. Ginenthal added, “What they do is amazing with the sized staff they have.”
Before we said goodbye, he recommended a book to me that he thought I would love. Clearly, this man is a teacher. In the two hours I spent with him, he taught me so much about what it means to be a survivor. He explained to me how to change a bad situation into a meaningful, positive experience. He showed me that superheroes still exist inside the hearts of beautiful people. It was a blessing to have had the opportunity to meet him, and I hope our paths do cross again in the future.
Written by Siona Stone
