From Nurse to Patient
When Susan was diagnosed with pancreatic cancer, cutting-edge drugs and a supportive medical team helped her go from patient to survivor. Now she raises funds for continued research through a Lustgarten Foundation Walk for Research.
I was absolutely shocked. It didn’t make sense. I was a healthy person. I kept my weight where it needed to be, I exercised, and I always took vitamin supplements.
When it happened, I was 66 and looking forward to retiring from my career as a nurse.
At the end of March 2014, I didn’t feel well. I had attended a banquet in Iowa City, and the next day I thought I must have eaten something that upset my stomach. When the feeling didn’t go away, I grew concerned. After consulting with my nurse practitioner, Jennifer, I knew I had to take this seriously.
During an ultrasound, doctors noticed a mass at the head of my pancreas. I was terrified. I didn’t know how to be brave. I truly thought I was going to die. Jennifer did her best to comfort me and give me hope. Her optimism and positive spirit allowed me to breathe.
Tests revealed my pancreatic duct was blocked, so I immediately underwent a procedure to have a stent placed to drain bile and to confirm the diagnosis: Stage II pancreatic cancer. My first oncologist believed I was too old to handle the strongest chemotherapy treatment and my chances for long-term survival were minimal.
I knew I deserved better.
The Right Medical Team in My Corner
I sought a second opinion from Dr. Daniel Berg, from the University of Iowa Hospitals & Clinics. He believed in me and was kind, positive and informative—truly everything we, those touched by pancreatic cancer, need in a doctor.
Because I was diagnosed at Stage II, Dr. Berg told me I fit in a small subgroup with a high probability for a cure using a powerful chemotherapy called FOLFIRINOX. My first treatment went well, although the final three were much more challenging. The treatment made me sensitive to cool temperatures—I’d wear a winter coat and gloves in the middle of spring! Food lost its taste and I started losing my hair and weight. It was certainly harsh and disheartening. But, with the support and reassurance of Dr. Berg, who allowed me one piece of cheesecake a day for the extra calories, and my dear friend and hair stylist, who helped me acquire a beautiful wig, I felt wonderful again.
Throughout treatment, people told me how brave and strong I was, though I didn’t always feel it and I didn’t want to let them down. My cancer nurse gave me the best suggestion: “You need to tell people you aren’t feeling particularly strong that day, and they’ll understand. They’ll want to help you.”
My advice: Take the help! If people offer to help you, whether it is a family member, a friend or a kind neighbor, don’t turn them away. The journey is long, and you cannot do it alone.
My older brother and my sister-in-law’s support never wavered. When I was too weak to walk my dog, Maggie, they walked her. When the pain became too much and I couldn’t eat well, they made me soup. They drove me to and from my biweekly chemotherapy appointments.
An Open-Minded Plan
I completed my FOLFIRINOX therapy in June 2014. A short time later, a CT scan revealed that while my cancer had not spread, the tumor had not shrunk as much as my oncologist had hoped.
So, we devised another treatment plan—radiation and more chemotherapy with a treatment called Gemcitabine. Since there was no downside to it, I also agreed to participate in a Phase One clinical trial at the University of Iowa using ascorbate (high-dose Vitamin C, administered intravenously). The plan was 28 days of radiation and ascorbate, Monday through Friday. Every Monday, I also received Gemcitabine before the radiation and ascorbate.
By August, my treatment was completed.
Luckily, treatment shrunk my tumor so I could undergo a Whipple surgery—a complicated procedure giving me the greatest chance for long-term survival. When I learned my original surgeon needed to take a medical leave of absence and wouldn’t perform my surgery, it broke my heart. He was battling his own cancer but remained as supportive as ever. He sat down, held my hand and talked to me about Dr. Clifford Cho of the University of Wisconsin—Madison, who had trained at Memorial Sloan Kettering Cancer Center and who agreed to do my surgery.
When you have the right doctors in your life, it makes your fight more bearable, energizes you to plan for the future and puts your mind at ease. Dr. Cho successfully performed my Whipple on October 6, 2014.
Walking for Research
Throughout my battle with pancreatic cancer, my family and friends gave me hope and strength and prayed for me. And I kept fighting for my life. Pancreatic cancer should not be a death sentence for anyone, and every day, I thank God I’m alive. I encourage people to find the best medical team possible for them and to consider clinical trials, because without them, we would never find solutions to cure cancer.
Up until recently, I had a scan every six months to check my cancer markers. They have all come back clean. I am incredibly grateful to be a six-year survivor!
One of the best things I did to connect with others impacted by pancreatic cancer was to get involved with the Lustgarten Foundation. I was amazed when I learned 100% of donations fund research.
When I discovered a Lustgarten Walk for Research in Marion, Iowa, about 25 miles from my home, I knew I had to join! People who attend the Foundation’s walks are very caring and friendly and are all committed to the same mission of fighting this devastating disease and one day, finding a cure.
I hope awareness about pancreatic cancer will eventually grow, thanks to organizations like the Lustgarten Foundation, and I am so thankful for everything the Lustgarten Foundation does to fund research, support patients and organize walks and other events to draw attention to this disease. I couldn’t ask for better people to be with me on my journey.