With more than a million people in the United States being diagnosed each year, the global nature of the fight against cancer is much in our awareness as a nation. Yet the experiences of those whose lives are directly affected by the disease are highly personal—whether they are traveling the difficult path from diagnosis through treatment to recovery as patients, as the family members and friends who care for and accompany them, or as the medical professionals who advise and treat them.
The challenges can be considerable—from dealing with feelings of fear, anger, and loss of control while simultaneously making complex decisions about how to proceed, to coping with the sometimes brutal side effects posed by treatments. Finding ways to meet those challenges can call on individuals to stretch in new directions—perhaps becoming stronger, more accepting, more flexible, more reliant on others, and better able to focus on simple joys.
What else helps ease the way? “Having the support of family and friends is key,” says social work professor Maria T. Brown G’05, G’10, a two-time breast cancer survivor and online support group leader whose research interests include later-life experiences of survivors. “Even more than that, having other cancer survivors in your life is very important. Good doctors matter, too. But you could have the best medical treatment and still feel alone in the emotional reality of your cancer if you didn’t have the support of family and friends and other people who have been through it.”
Here, three members of the Syracuse University community share their stories of healing from cancer and the unique ways that journey changed their lives.
“You have cancer,” I heard the doctor say. Next I felt a barrage of emotional jolts: fear for the future, dread of a disease I could not comprehend and anger because something was growing inside of me that had no right to be there. Would it destroy me? All these feelings were followed by a very basic animal instinct: I was determined to survive, but how? I didn’t know where to begin. What kind of hurry was I in? How much time would it take to find a solution? Where could I find the necessary doctors? The questions seemed endless.
From Surviving Cancer: Our Voices and Choices, a collaboration compiled and edited by Marion Behr ’61, G’62
The day after Marion Ray Behr ’61, G’62 underwent breast cancer surgery in 2006, her husband Marc brought home sushi for the two of them and for their children and grandchildren who had come by the house to offer get-well wishes. Since Behr was recuperating, her family members gathered in her bedroom while enjoying their meal. She remembers her then 4-year-old grandson exclaiming, “Grammy, this is the best picnic I’ve ever been to!”—his happiness shining a healing perspective on the day. “The next morning it felt good to get back to work in the studio,” writes Behr, an accomplished painter, sculptor, and printmaker whose encounter with cancer inspired her to compile the book Surviving Cancer: Our Voices and Choices (WWH Press, 2014). “Survival, for me, is focusing beyond the cancer and living life to its fullest, every day.”
Behr sought out 70 contributors who share their experience, wisdom, and care with others touched by cancer in essays and articles. The book is illustrated with photographs of the sculptures she created out of radiation cradles. Its pages follow the path of an individual’s journey with the disease—from diagnosis through treatment and recovery—interweaving the personal narratives of survivors with the insights of medical professionals and cancer organization leaders. Offering a wealth of information on such topics as research, clinical trials, and financial assistance as well as a comprehensive glossary, it also serves as a guide advocating early detection.
Behr spoke about the book with Syracuse University Magazine associate editor Amy Speach from her home in New Jersey.
What inspired the creation of the radiation cradle sculptures that were the impetus for the book?
I was near the end of the whole process [of being treated for breast cancer] and I was having my radiation treatment. I looked up on the shelf and saw stacks of blue radiation cradles like the one I was anchored in at that moment. At other times, other individuals must have been lying in each of those cradles in similar positions to mine. I started to think about the cradles as the people who were in them—wondering what they were thinking and feeling. And then, I started seeing sculptures in my mind, imagining the plastic cradles taking on body-like forms and shapes.
When you have cancer, you often find yourself in waiting rooms with other patients—sitting in this gown, waiting for your turn. People really talk to each other then: about what they’re afraid of, what they’re feeling. So I listened carefully. Then I asked at the hospital if it was possible to take the cradles home. Once used, the cradles could not be recycled, so they were delighted to give them to me. I took them back to the studio and, between treatments, I worked on them. I reshaped the cradles to represent people and their emotions as they fought for a healthy life. And doing that work made the treatments go far away.
I think that has been true for me my whole life—that the artwork has made so many things right.
How did the sculptures lead to the book?
The cancer was discovered because my kids pushed me to get a mammogram. With busy schedules and a very full life, it’s so easy to skip a year or two and not realize how much time has gone by. Thank heaven for my kids! Waiting longer might have caused a considerable problem. Early mammograms can make a difference—it certainly did for me.
Naturally, I went through all the fears and reactions a person has when they learn they have cancer. But as a result of this experience, the sculptures were born. Four exhibits came to life, aimed at encouraging women to get mammograms. During the first show, there was an elderly man who sat in front of a sculpture, and I saw that he was really contemplating it—really, really looking. Then he turned around and told me his whole cancer story and a good part of his life story. It was fascinating. And my thought was that it would be great to compile stories like his.
At another show, held in October 2009, many of the people who came had had cancer. And as they looked at the sculptures, conversations started—an empathic, detailed sharing. The curator and two others who worked at the gallery decided to have a panel discussion that ended up being very inspiring. That was the book’s real beginning, and led to a collaborative process that took 10 hours a day for four years.
What advice can you offer others with cancer based on your experiences?
One thing I learned is how important it is for both the cancer patient and family members to ask questions. And it is important to have an advocate—a relative or friend—come along to your hospital and doctor visits to ask questions you might miss and to take notes on the answers. For example, my husband once questioned a technician who was taking my blood about the material of the gloves he was wearing. They were made of latex, which I am allergic to. Under the circumstances, I wouldn’t have thought to ask.
I also learned not to be afraid to get second opinions or to have reports double checked. For me, doing so prevented an additional surgery under my left arm. That was a huge relief, since I am left-handed and need my left arm to create art.
What is it about having cancer that so often ignites the sense of wanting to help others?
It can be terrifying to hear those words, “You have cancer.” But if you talk to somebody else who has had cancer—that can really make a difference. They’ve had rough experiences and still come through. And I think when that happens, there is a different value placed on life. You just don’t know what works for a person to relieve the pain of what they’ve been through. With cancer, it really does seem to be, in many cases, that the answer is people helping other people. You hear about people who are terrified, and you’ve been there, and so you think, yes, there is a way I can really make a difference. This book is the joint effort of all its contributors to do that.
To learn more about the book, visit wwhpress.com.
For additional cancer resources, visit:
By Renee Gearhart Levy
Rob Long ’12, G’14 doesn’t want your sympathy. Not for his brain tumor and cancer treatment. Not for the loss of his NFL dream. He considers himself a lucky man. “I’ve had so many amazing experiences I never would have had without cancer,” he says. “There have been times that have been hard, but I’ve come out a stronger, better version of myself.”
Long points to the large Rubbermaid bin in his bedroom in Downington, Pennsylvania, stuffed to the brim with cards and letters wishing him well. “The amount of support for me and my family from the entire Syracuse community has been nothing short of amazing,” he says.
It’s testimony to his character and his status as one of SU’s football greats. Long may be the best punter in Orange football history. Named to the Freshman All-America Team by Sporting News and College Sports Report, he was a three-time All-Big East punter and two-time Big East All-Academic Team selection. In Syracuse team history, Long is second in career average (43.3 yards per punt), and booted four punts of 70 yards or more, including a 73-yarder that has him tied for second place. During his senior season, he averaged 43.84 yards per punt and was considered one of the top college punters heading into the 2011 NFL Draft.
But in early December 2010, after battling headaches and nausea all season, Long had an MRI that revealed a tennis ball-sized tumor in his brain. The day after his 22nd birthday, he had surgery to remove the tumor, leaving him with a four-inch S–shaped scar on the back of his head and a titanium plate in his skull. A week later, Long and his family learned the true gravity of the situation: The tumor, believed to be benign, was actually a grade 3 anaplastic astrocytoma, an aggressive brain cancer.
A devastating diagnosis for anyone, it was particularly frightening given the history of cancer in Long’s family. His mother lost her father to a brain tumor when she was 7. Cancer later claimed her mother, older brother, and older sister. Earlier on the very day Long learned he had a brain tumor, his mother’s younger sister was diagnosed with breast cancer. “It was very scary because the track record was not good,” Long says.
From a football perspective, Long’s diagnosis couldn’t have come at a worse time. “Senior season had just ended,” he recalls. “I had exhausted all of my eligibility. I was supposed to be spending time in some warm- weather city preparing for the draft, kicking every day.” And SU was headed to its first bowl appearance in six years. Healing from surgery, the Orange co-captain was able to attend the Pinstripe Bowl—watching from the sidelines and serving as an inspiration to teammates. But instead of heading to Florida to prepare for NFL tryouts, he began a six-week regimen of daily chemo and radiation.
While cancer treatment would have sidelined many, Long simultaneously worked with a trainer, going to the gym every day and kicking several times a week. He says it’s important for anyone going through cancer to have a goal, a destination on the other side. For him, it was getting to the NFL. “It was something to look forward to every day, something to focus on other than being sick,” he says.
It was a nearly superhuman effort, says Dr. Irving Raphael, team physician for the Syracuse Orange at that time. “He was an inspiration to everyone who knew him. He was determined not to give up football unless it was on his own terms.”
In March 2011, Long had his first follow-up MRI and learned that all traces of cancer were gone. Two weeks later, he was back in Syracuse auditioning for pro scouts at Manley Field House. But when the draft came, only two kickers were selected, neither one a punter. Although he later learned the Arizona Cardinals had once planned to draft him with their seventh-round pick, when the time came, his health status seemed too risky. “Understandably so,” Long says. “When you hear ‘brain cancer,’ you’re not tickled with a good feeling.”
It was a recurring theme. Long spent that summer sending out hundreds of emails to coaches, general managers, anyone who might be in the position to give him a shot. Although he tried out for the Cleveland Browns, the team went in another direction. Instead, he finished up the six credits remaining to complete a bachelor’s degree in marketing and supply-chain management from the Martin J. Whitman School of Management, coached his high school football team in Downington, and completed a yearlong regimen of chemotherapy—on a five-day on, 21-day off cycle. And he kept working out—lifting weights and kicking—determined to overcome any handicap from his cancer diagnosis.
After the 2013 draft left him empty handed once again, Long returned to Syracuse to begin a master’s program in new media management at the Newhouse School, working as a graduate assistant in the athletic department. He worked out with the SU football team, focusing on the 2014 draft. “Last year was honestly the first time I was both mentally and physically ready,” Long says. “I finally felt like I was back to where I was before this all happened, but a better version of myself. I was able to go to the workouts and perform well because I had the confidence and condition at that level.”
Because of that, Long was, for the first time, OK that he was not drafted. “I finally came to accept that it’s not because I’m not good enough, it’s not even necessarily because of cancer, but because there are only 32 punting positions in the NFL and there are a lot of talented kickers out there,” says Long, who earned a master’s degree in August.
Over four seasons of tryouts, his quest had taken on an extra burden in his own mind. “It became more than fulfilling a childhood dream,” he says. “I wanted to be the kid who had cancer but made it to the NFL. I had to accept that I can share my story and help other people without punting a football.”
December marked the four-year anniversary of Long’s diagnosis and surgery. In March, he was four-years cancer free. His Aunt Chrissy is equally healthy. “We’re the first in the family to beat cancer,” he says.
Long has an MRI every three months. He relishes each milestone, looking forward to hitting the five-year mark. “There’s a huge drop in recurrence once you are five years out,” he says.
And he’s at peace with the road not taken: Instead of focusing on the 2015 draft, he began the new year with a new job. He’s a product specialist managing a new digital product that helps determine recommended driving speeds for curves and turns, traveling the country to work with engineering firms and state departments of transportation from his office in suburban Philadelphia.
“I’m ready for new challenges, enjoying every day and the new experiences along the way,” Long says. “I’m happy with what I was able to accomplish and the impact I made. There’s a lot to be said for looking back at what you have done and not what you haven’t.”
By R. David Lankes
The last month of chemo for my treatment of Hodgkins lymphoma in 2013 I had to teach a weeklong course. I could only teach the first half of the day, and had a fantastic doctoral student who covered the second half. I should take a moment here to acknowledge that if you ever have to get cancer, being a full professor at Syracuse University’s School of Information Studies is the place to work. The staff and faculty there were incredible. They supported me. They covered courses. I got not only a note of support from the Chancellor and provost, they sent a meal for 20. The entire university acted as a family. I am forever indebted to them.
As chemo progressed, I walked more slowly. I lost my breath faster. The two parking attendants at my parking lot would ask how I was. They worried about me. Then one night I had a very frank conversation with one of them. “I’m glad things are going well. I wonder if you could do as well if you weren’t faculty?” She was right. I had control of my hours. I could work from home. If my publications slipped off, I had tenure. I am proud that I was productive during my initial chemo, but there is no question that I was in a privileged position.
I also want to make sure I don’t mislead anyone. I may have been productive while I was sick, but I hardly “didn’t miss a day of work.” I taught all my classes, but I had to pull out of a number of speaking engagements. I sent Skype sessions and recordings in place of me. I had to pull out of positions in professional associations. I had to close down a research project I had started. I had to hand off doctoral advisees to my overloaded colleagues. And with each one of those, with each retreat in my responsibilities at home or at work, I fought.
I would sit in my chair as my wife watched me wince with Neulasta pain. “Take the pill David,” she would say, referring to my painkillers. We would walk and she would stop. “What?”
“Stop and breathe…you are doing too much.”
When something needed to come up from the basement, “Sit!” she would command. “Riley [our son] can get it.”
With every slip, with every slowed step, I felt like I was becoming less. Less able, less important, less helpful, less of a man.
Here is the hardest lesson I learned in chemotherapy. I was not battling cancer. The chemo was battling cancer. Battling is the wrong metaphor. I didn’t feel like I was on the front line of some war. No, I was the home front. Once the battle was endorsed, I was the one at home sacrificing to support the war effort: taking the rations and reductions as part of my duty in the fight. The chemo was storming the barricades.
The key, I came to see, in beating cancer through chemo is not fighting, but acceptance. You must accept the drugs, and you must accept that the drugs are going to progressively take from you as much, or so it seems, as the cancer. You must accept that your legs will ache and weaken; that your breathing will constrict; that your bowels will constipate; that you will lose energy. You must accept that for the drugs to do their work—the true battle—you must accept a lack of control.
At the beginning it felt like a fight. I felt like I was waging the war with cancer, and screamed, “Screw cancer.” But the answer does not come from cancer, it comes from the poisons that kill cancer cells, and hair cells, and stomach cells, and white blood cells, and the components of your every body part. It comes as an unrelenting slow darkness that crosses your red lines, and keeps coming, and will keep coming so long as you accept the toxins.
One day you realize—after your good weeks become good days become good hours—this is the price you must pay to live. It is not a moment of fighting, it is a moment of acquiescence. You must give yourself over to the drugs, and your loved ones, and God. And it is hard. It is, in fact, the hardest thing you have ever done. Your whole life you have succeeded through action; through your wits, and your muscle, and your determination, and your own capabilities. But not now. Now you must depend on Bleomycin that eats away your lungs, and Vinblastine that robs you of your taste buds and hair. You must rely on your wife to drive the kids. To win, you must surrender.
Surrender to the process, to the treatment, to the care. NEVER to the cancer. NEVER to the thoughts of death. NEVER to anything other than life and the future.
Then there is a final thought, a crucial insight that must accompany the surrender. If you accept the treatment, and the limitations, and the proxy battle, you can then focus on the other things in your life. You can focus on your son’s graduation. You can focus on your wife’s affection, and the love of friends. You can focus on your work, and your mission, and all the things that will be waiting for you after the poisons and the drugs, and the pain, and the limitations.
So after six months, the chemo came to an end. The next steps? Radiation if they still find cancer in one or two lymph nodes. Bone marrow transplantation if the lymphoma is still broadly distributed. But, hopefully, monitoring for recurrence and recovery—that’s plan A.
We had a party. My kids had worked all summer on earning their black belts in karate, and so we had a party for them. But as my wife said, “We have a lot to celebrate.” We invited both sets of parents. We had slushy machines, bouncy houses, and a tent. We took a lot of pictures and congratulated ourselves for seeing this nightmare through.
And we waited…«
R. David Lankes ’92, G’99 is a professor and Dean’s Scholar for the New Librarianship at the School of Information Studies, director of the Information Institute of Syracuse, and author of several books, including The Boring Patient (www.createspace.com, 2014), excerpted here.