My cancer story begins at the end of December 2012 when I was back East at my best friend’s father’s house. Growing up I spent a lot of time in that house. I went to the bathroom and was reminiscing about when the little bathroom was put in, being nostalgic, thinking I was lucky to have such a long history with a friend and a house. I was shocked to look down and see that my urine was very dark. I was concerned, it was so dark I called my primary care doctor in California and left a message to get an appointment.
By the next morning I had an email with an appointment for the following day.
Midway through the exam, the doctor told me I had to see a gastroenterologist immediately and that I needed a CT-scan that was scheduled for the next day. I saw the gastroenterologist the Saturday before Christmas. He confirmed the diagnosis was pancreatic cancer. He recommended surgery and told me there was only one doctor to perform the surgery, Dr. Howard Reber at UCLA. I was so lucky that my tumor was resectable, that the tumor was blocking the bile duct, making a diagnosis easier. I had a Whipple procedure on January 4th 2013. I was lucky.
I started Chemo with Dr. Isacoff about 10 weeks later. I did 6 months of folfirinox and showed no evidence of disease (NED) for 3 or 4 months. Then my CA19-9 went up. Then I got Gem/Abraxane for 4 months and again got to NED. Six months went by and I had the port removed. Then the CA19-9 went up again. Another port was put in, back on chemo again.
Then I heard about a new procedure whereby they isolate circulating cancer cells in your blood and perform genetic testing. The procedure was so new that the doctor didn’t know how or if it would help. We got the test results. I remember the exact words he said, "we can work with this!" He immediately changed my chemo to Gleevec. I was heartened and excited until the pharmacy called and said the cost of the drug was more than $10,000 per month. I was plunged into uncertainty again, I didn’t know what would happen. Then I got a call from the pharmacy. They told me they found a Prescription Assistance Plan to cover my out of pocket costs. I started taking Gleevec and rapidly proceeded to show no evidence of disease (NED) and have been NED for 5 years. I was lucky.
It has taken awhile to get past all the chemo but I’ll cherish every drop, because it got me to the liquid biopsy and then to where I am now. For the last couple of years I have been lucky to be on the Patient Council of the Canopy Cancer Collective. The Canopy is a group of 14 hospitals that have a Multi-Discipline Center for Pancreatic Cancer. UCLA is a member as well as Johns Hopkins, Stanford, Mass General, UCSD, UCSF & UC Davis to name a few. With the other patients and caregivers in the Canopy Patient Council we have started a peer-to-peer support group that meets monthly to create a community for people fighting this disease. Our group, AnCan (Answer Cancer Foundation) is about people helping people through inclusive virtual peer support that allows for widespread participation, especially to those geographically, physically or socially disadvantaged.
Pancreatic Cancer Awareness month is a time for reflection for me. It is a time for me to show gratitude and thanks-giving for the many personal milestones I have been able to share with my family over these 9+ years. I have been so lucky to celebrate births, b’nai mitzvahs, graduations, theater productions, marriages, science fairs, birthdays, bike rides, I am so lucky to have time.
