January 14, 2002
How Pancreatic Cancer Changed My Life
Mary L. Zapor
He was the oldest. I was the youngest.
Before I was born, he told my mother that this baby would be his "iddy biddy buddy". After finding his home invaded by three little sisters, he was predicting that I would be the little brother he'd always wanted. If someone had given him a choice of having another sister or having to deal with open wounds for five years, he would have checked out the price of bandages and signed up for a second paper route.
Well, as little brothers go, I came up a wee bit short. He may have held it against me in the early years of my life, and he probably questioned the relative merit of little sisters (4) versus little brothers (0) on several occasions. However, as I began my college years and after he was married, moved away and became a father, we found each other again. During a stressful family situation, we really talked, just the two of us. We talked for hours about what we admired about each other and so many other things that were important to us. We forged a bond that night that has never been broken.
Through the intervening years, our lives had their ups and downs, but through it all, we were there for each other. When I needed guidance or a cool head to bounce ideas off of, he was my rock. I knew he respected my insights and creativity, and he knew I would always give him an honest answer if he asked my opinion. He knew absolutely that I loved him.
When he was diagnosed with a pancreatic tumor on his 54th birthday, he called his little sister. I was in shock. I cried all night.
He called me again the next morning, before the surgery that would confirm his diagnosis and forever change his future, and we cried together. I tried to help any way I could, finding information to ease his mind before surgery, doing things I did normally for other people, but this time I was doing it for someone I loved deeply. A heavy weight hung over my heart.
Every instinct in my being told me that he was going to die, and I was powerless to stop it. I didn't know how, but I just had to try to save this man. I HAD to try.
Is it a coincidence that exactly one month before my brother's diagnosis, my family got an internet connection? I don't think so. The internet quickly became my research tool. Evenings and weekends became consumed in a desperate attempt to find all of the information available on pancreatic cancer. Piles of printouts accumulated on the floor. I copied everything remotely relevant and mailed it off to my brother and his wife. Basic information. Drugs. New treatments. Experimental protocols. Ways to ease symptoms. I found information, but I didn't always understand it. I needed help and I wasn't sure where to turn.
One of my lifelines and a great source of support, encouragement, and honest information came from the arms of a cyber-family who were either engaged in their own battles with the cancer Beast, or who had already gone down the road before me. Through an e-mail and online support group, I found comfort from those who truly understood how cancer wreaks havoc in your lives and in your families. I came to understand how a little information here, or a helpful hint there, can have a tremendous impact on someone's life. I know that it changed mine.
As my brother's medical condition worsened and a crisis arose, I called on my cyber-family for support, and they were there. They shared moments of joy with our family. They helped us celebrate my brother's 55th birthday. They gave us encouragement as he tried to live long enough to see his youngest daughter marry. As it became obvious that my brother's fight with pancreatic cancer was going to be lost and he would not live to see his beautiful daughter in her wedding dress, I felt their comfort. I didn't have to see them, but I knew they were there, concerned for him and for me. Waiting to hear. Waiting to show me they cared. Waiting to send me condolences when that long-predicted, awful diagnosis became a reality.
I feel very blessed to be able to remain active with pancreatic cancer organizations. I hope that by volunteering in this way, I can help give back some of the concern, and care and support that others--my cyber-family--strangers except through my computer screen--gave me along the way. Even though it wasn't in the cards for my brother to survive his battle with the Beast, maybe, just maybe, some other "iddy biddy buddy" will reap the benefit of our cumulative experience, and help blaze the trail to a cure.
Fourteen days before my brother died, the Association of Cancer Online Resources (ACOR) created a special e-mail support group. I have been privileged to help manage that group since the fall of 1997 with Don Sterner, the author of The Pancreatic Duct, http://www.acor.org/pancreas/ In addition, I participate as a Co-Coordinator of TEAM HOPE National Capital Area for the Pancreatic Cancer Action Network (PanCAN). Further information and resources for pancreatic cancer can be found at The Pancreatic Duct and the PanCAN website, http://www.pancan.org.