• Whipple surgery leads to stage III ampullary pancreatic cancer diagnosis
• Chemotherapy with gemcitabine
• Difficulty with FOLFIRINOX leads to ending chemotherapy
• Radiation to reduce pain from tumor
• Choosing quality of life
Thinking back, in the previous couple of weeks I had lost several pounds without trying, was suffering from heartburn, and had some fatigue. When my urine turned dark, I went to my doctor, who diagnosed a urinary tract infection and put me on an antibiotic. Blood work showed high liver counts, which made my doctor think I had hepatitis, but I began to feel better, so the diagnosis was changed to just a virus.
My doctor ran more blood work and the liver numbers increased so I was sent to the ER for a CT scan; the scan showed a blockage in my bile duct. I then had two endoscopic ultrasounds, and an ERCP to place a stent to open the bile duct.
Making Treatment Choices
I was told that surgery was required, so I had a Whipple with Dr. Michael House at Indiana University Health, in Indianapolis, on March 11, 2017. The surgery was able to remove all of the tumor, with clear margins. But while I was originally thought to be stage I, after my Whipple surgery I was told I was stage III. Because of this Dr. Safi Shadha, my oncologist at the time, said that I needed six months of chemotherapy after surgery, which was the recommended protocol for my staging. I had a preventative course of gemcitabine (Gemzar) ending in October of 2017. I didn’t do too well with the treatment, with weight loss and nausea, but it was tolerable. It was a necessity to get me into remission, but by the end, I thought to myself I would never do this again.
I had genomic testing, which I had to pay for out of pocket at $5,000, because it was not covered by my insurance. I was looking to see if I had any mutations that would ensure I was taking the right medication to attack the cancer. But the test did not find anything.
I had follow-up scans and lab work every three months and in May 2018, I noticed in my results that my CA 19-9 tumor marker was starting to rise. But the numbers remained in normal range until November 2018, when my doctor agreed that I had a recurrence. It was time to consider treatment options again. My doctor always promoted quality of life, so we discussed enjoying family and travel through the holidays and getting started after the first of the year.
In February 2019 I started chemotherapy with FOLFIRINOX. It was horrible—I was sick the entire time. I despised the chemotherapy and everything it was doing to my body. After three rounds I decided that for me “quality of life” was more important than time. In March of 2019 I halted the treatment.
After that I tried healthy eating and juicing, eliminated sugar, and used lots of vitamins, including vitamin C infusions. I mostly felt great until October of 2019, when I started experiencing pain in my back from the tumor pushing on nerves. In January and February of 2020 I had high dose radiation to shrink the tumor. The radiation worked some because I was able to reduce my dose of narcotics for pain from every four hours to twice a day. But by May the tumor was growing again—my marker numbers increased, and the scans confirmed the growth.
Hospice to Help Me Live my Life
My current oncologist, Dr. Patrick Loehrer, recommended that I start hospice sooner than later to take advantage of all the services they have to offer, and after thinking about it, I agreed. I’m still mostly doing great. I know there is the stigma that comes with hospice—that it’s the end. For me the primary reason was my monthly fight to get my pain medicine. It’s been a trial and error seeing what dosage will work the best for me, so it changes from time to time. With each change comes an insurance approval and/or denial and last month it even had me missing a couple of days and chasing some of the pain. In all honesty, it’s a lot to process and take in. On most days I’m still in denial that cancer is really happening, but when I look in the mirror I can tell. My muscle mass has almost completely gone, and I’ve seen double digit weight loss which makes it more real.
As the COVID-19 restrictions eased in Indiana I have been able to eat out and visit with friends and family again, which has been the best. At the beginning of July my husband and I made a last-minute decision to complete our trips to all 50 states—we had two left, Delaware and Rhode Island. We ended our trip with the smallest state being the last—Newport, Rhode Island was an amazing place to finish.
On Saturday, July 19 we had a fundraising walk in my honor, with over 120 participants.
I was told I had one year, maybe two with treatment and about the same without it. I am now a three-plus year survivor and am enjoying life as best I can. I’ve got a lot of things left to check off on my list and I know at some point life will have its own plans but until then I’m planning every day on living life!!!