RANDY AND I OFTEN WENT to an oncology appointment expecting to be in the cancer facility for three hours, only to find ourselves still there after four, five, or six hours. There were many different reasons for the delays. Sometimes, the nurse would have to infuse the chemotherapy drugs at a slower rate so as not to overload Randy’s system. Sometimes he might need a shot to boost his white blood cell count. And sometimes the infusion area was so full of patients that there wasn’t a chair for him. We had to wait our turn, kind of like waiting for a table at a restaurant, except Randy and the other patients were guaranteed to get sick from whatever they were served.
Most oncology departments recognize the fluid nature of chemotherapy appointments and keep a selection of drinks and snacks or vending machines available for their patients as they wait. There are also volunteers who come around the waiting rooms offering drinks and a sandwich to either the patient or caregiver. I can’t tell you how many times I had lunch courtesy of these kind souls. MD Anderson Center in Houston covers ten thousand acres and employs seventeen thousand people. When Randy was undergoing the clinical trial treatment there, we would often be very far from a cafeteria or vending machine. Luckily for us and the other twenty thousand patients receiving care there, volunteers go around to different departments and waiting rooms with the Jolly Trolley—a cart stocked with snacks and hot coffee, tea, or chocolate. I can still hear the sound of the trolley’s bell. That tinkling sound was welcomed by the hordes of us stuck in the bowels of the cancer center maze, where no sunlight penetrated and time was measured by the drips from the IV bag down the line. Cancer takes over more than just the body; it takes over one’s time, takes away control over one’s schedule, one’s day. The patient and caregiver are completely in cancer’s grip. The Jolly Trolley was more than a hot cup of coffee; it was a nice diversion from the reality of the moment served up with a friendly smile.
After spending long days that added up to weeks inside the cancer bureaucracy, I knew I wanted to help other people who were going through similarly trying times. When routine was restored within our household after Randy had passed, I wanted to use some of my free time while the children were in school and preschool to be a volunteer who handed out drinks and sandwiches to those now sitting in those same waiting rooms where I had been sitting just a short while ago. I knew from firsthand experience the difference such a simple act could make in someone’s day. Rather than wallowing in my own self-pity, I would benefit from helping others. There’s an immediate reward in doing for others—the instant gratification of interacting with the person you are helping. It’s a much more personal experience than merely writing a check and putting it in the mail.
I’m sure some folks would never want to step back into a cancer ward, to see the IV poles and chemo bags strung up like party balloons. Some party! The guests are definitely not having a good time. They’re not vomiting into the garbage can because they’ve had too much to drink. These reminders of darker days reopen wounds for those of us who have survived a cancer experience. I know the pain of patients and caregivers, and I understand why some people do not volunteer in some way. The experience is devastating for everyone. For my part, I needed to do something to help the people who were still sitting in those wards, all suffering silently in their own ways. After seeing the atrocities cancer can do to body and spirit, I felt great empathy for those walking in my shoes. I couldn’t shut out the images by closing my eyes; they would only reappear in my mind.
My volunteering plans took a turn, though, in the fall of 2008 when Julie Fleshman, president of the Pancreatic Cancer Action Network, called me and asked me to attend the organization’s annual fund-raiser. A year later, she asked me to join the organization’s board of directors. I hesitated because I wasn’t sure I had the time or experience to give to the organization at this level. Still, I didn’t say no right away but instead took a little time to talk it over with several close friends. My reservations included being newly widowed and dealing with a tsunami of grief, as well as learning to be a single parent. My lack of experience as a board member also gave me pause. The only experience I had was serving on the Pittsburgh Toy Lending Library’s board, which was no comparison in terms of scope or budget to the Pancreatic Cancer Action Network. Then there was the fact that my free time was limited because Chloe was in preschool for only four hours a day. Serving on the Pancreatic Cancer Action Network’s board would knock out my designs to serve as a refreshment volunteer. I couldn’t do both, so I had to choose.
In the end, I decided this offer was an opportunity I didn’t want to pass up. Maybe I wouldn’t be doing something as tangible as handing out food, but I would be playing a similar role on a larger scale. I liked becoming part of a team whose goals aligned with mine. It would give me opportunities to meet other people affected by pancreatic cancer who wanted to do something about the disease. Even though there is only a 10 percent chance of inheriting pancreatic cancer, I didn’t like to think about my children being afflicted with the disease that killed their father, especially when the survival rate hasn’t changed in forty years. What hope would medical science have to offer to my children at this pace of discovery? How would I feel if I hadn’t done all that I could to change the landscape of this disease?
As these ideas swirled around in my head, I thought about Randy. He never encouraged me to continue his crusade. His actions, though, spoke volumes. When he was in the hospital for congestive heart failure and kidney failure in March 2008, he told the doctors he needed to be released in time to go to Washington, D.C., to testify in front of Congress and advocate for greater funding for the National Cancer Institute and for pancreatic cancer. The doctors did release him, even though we were still trying to get his blood pressure down from 200/100. Randy was in a lot of discomfort, and he was very weak. Just watch the video of his testimony filmed by Geoff Martz of ABC News. You can see Randy grab his sides and grimace in pain. Nevertheless, he willed himself to get dressed and suffer the four-hour drive, resting in the back of the car.
Back in August 2007, Randy’s doctors told him he would most likely not be alive after six months—in other words in March 2008. He told Diane Sawyer during an interview for an hour-long 20/20 television special in April 2008 that he didn’t expect to be alive on Father’s Day in June. He knew he was living on borrowed time. His decision to take another day away from his children after just having spent five days in the hospital where he didn’t see them at all underscores how important it was to him to try to make a difference. Moreover, Randy knew that his efforts would not benefit himself in the least—it was too late for that. He went anyway, and I think he hoped not only to bring attention to pancreatic cancer, but to rally the public and our government to action—to get behind the medical researchers and give them the tools they need to find a cure. Short of this goal, he hoped to inspire others to pick up the baton and run the race that he couldn’t finish. In a public service announcement he made, Randy said, “In all likelihood, cancer is going to defeat my body, but it’s not going to defeat my soul because the human spirit is much more powerful than any biological disease.” In light of his actions and words, how could I not pick up the baton and carry on in that spirit?
I accepted the Pancreatic Cancer Action Network’s offer to join their board of directors. It is a decision I have not regretted. Because the organization has a comprehensive approach to attacking the disease, I have learned a lot—from the business of running a nonprofit to the art of marshaling volunteers. Being on the board doesn’t mean sitting around a conference table looking at a stack of reports. Board members are active at the grassroots level. I have participated in organized community walks, raising awareness about the disease among the general public as well as raising funding. I’ve tried to include my children at events or activities when it’s been appropriate, so we can be together as a family and learn through example and action what it means to give back to our community.
In addition to community events, I’ve done a lot of public speaking. These invitations have challenged me to develop a skill set that I didn’t have before joining the Pancreatic Cancer Action Network. Before the birth of the children, I’d been a webmaster; I never set foot on a stage or picked up a microphone. As a graduate student at the University of North Carolina, I was nervous when I had to present a paper to my classmates and professor—about fifteen people. Now I walk onto a stage and address two thousand people but don’t experience stage fright. My friends have asked me how I can stand in front of such a large group of people and keep my composure. It’s because I really believe in what I’m doing. I have complete conviction that we as a society need to do more to help scientists make headway against this difficult and deadly disease. What Randy and I experienced was horrendous to both of us and to our families in ways that were unprecedented for us all. Talking about it helps me move forward. I hope that sharing my experience will cause others to identify with us and not feel so isolated going through their own journeys, and that they will in turn help my cause. I feel that some good has to come from the painful experience of Randy’s battle with cancer and from our loss. This is the true silver lining—helping others while helping myself.
The more challenging aspect has been the business side of the nonprofit organization. As a board member, I am charged with ensuring the fiscal responsibility of the Pancreatic Cancer Action Network, which translates into making sure that any and all monies donated to the organization go toward its mission—curing pancreatic cancer. Luckily for me, the organization’s accounting is transparent and well documented, making my job so much easier. It’s been a real eye-opener to see how a well-managed nonprofit is always trying to keep costs down and use its funds to the best advantage toward its goals. The position has made me think in ways I’ve never had to do before.
As I have continued my involvement in the pancreatic cancer community, I’ve had the privilege of meeting some super people working tirelessly to bring about a cure. One in particular who stands out as a role model for me is Roger Magowitz. I met Roger at a Pancreatic Cancer Action Network gala fund-raiser in October 2008. He offered me his business card and told me to call him if I ever needed a mattress (which I did!). At the time, Roger owned twenty mattress stores in Arizona and fifteen in Virginia. He and his wife, Jeanne, live not far from me in Virginia Beach, and we’ve become friends. I didn’t know it at the time, but Roger had added me to his immense list of friends and contacts. Roger is a people maven, fitting Malcolm Gladwell’s definition to a T. He has a vast network of friends through which he meets others or can get to know someone outside his own network through various degrees of separation. Roger uses his talent to help bring about a cure for pancreatic cancer because the disease took his own mother eight years earlier. Instead of remaining bitter, Roger channeled his energies and emotions into a full frontal assault on the disease. First, he volunteered to help organize a golf tournament to raise funds for the Pancreatic Cancer Action Network, which netted $10,000. The following year, he suggested to the organizer that the tournament be named after his mother, Seena Magowitz. Through his efforts and networking, the tournament raised $50,000 that year! When the organizer wanted to change the tournament’s name each year to honor a different person, Roger knew his friends wouldn’t come out as they had before, so he decided to go off on his own and start his own golf fund-raiser in his mother’s honor. His network of friends and supporters followed him. The golf classic has grown both in the number of attendees (four hundred in 2010) and in dollars ($2.5 million in 2010). I am amazed at his success and determination, born of a desire to extinguish the disease that devastated his family when it took his mother’s life.
The golf tournament isn’t the only project Roger has undertaken in his quest to help conquer pancreatic cancer. He has galvanized his industry to implement some creative ideas. Roger initiated the novel idea of making teddy bears out of Tempur-Pedic’s space-age foam and donating the proceeds to the Pancreatic Cancer Action Network. He also committed to purchase a percentage of the bears for his stores in Virginia. Roger’s idea helped launch the “Hugs Back” campaign, in which Tempur-Pedic used those squeezable, huggable bears to raise awareness about pancreatic cancer through its marketing, advertising, and public relations. The company advertised the bears and the cause they represented in national and local magazines and newspaper print ads, along with television and radio spots, selling the bears for a modest amount at bedding stores across the country. By the end of December 2010, Tempur-Pedic’s campaign had generated $300,000 for pancreatic cancer research, all because Roger challenged the bedding industry to care, and these corporate giants rose to the challenge.
When I talked to him about how he was able to manage a company in two different states while still volunteering his time to pancreatic cancer projects, Roger explained that he had been in the business for more than twenty years with an excellent staff in place to help to keep his business running. He never lost sight of the fact that his mother had died without hope of treatment or cure, and he was willing to put in 110 percent every day. When his friends and colleagues saw what he gave of his time, money, and resources to this cause, they were more willing to get involved. When Roger decided to sell his company, he chose a buyer that agreed to make pancreatic cancer research funding its corporate charity. Mattress Firm not only bought Roger’s company; they also hired him to keep doing what he had already been doing all these years without compensation—fight pancreatic cancer. Moreover, Roger and his wife, Jeanne, pledged $1 million to the Translational Genomics Research Institute’s physician-in-chief, Dr. Daniel Von Hoff, to underwrite his clinical trials so that treatment options make it from the medical research lab to the patient much faster. They could have chosen to buy a retirement home in Florida and play golf every day, and felt they had done their part. Instead, they led by example and tangibly showed that ending pancreatic cancer and helping others was a priority in their lives.
Because of people like Roger and Jeanne, I’m beginning to make choices about what is important to me and my family. I’ve had to ask myself how I want to handle the experience I went through with Randy. Do I want to bury it deep inside me and let time slowly repair that wound, or do I want to embrace my tragedy and use it to make something positive? At the same time, I don’t want to be handcuffed to the past or defined by it. The next challenge I face is to learn how to take my experiences from the past and use them to make a difference in the world today without letting the past dictate my future. I don’t want to be “Randy’s widow,” but just Jai Pausch. Somehow I must find a way to take the broken pieces of my dreams from yesterday and use them to create something new and beautiful that fits who I am today.