Oilpressure

By Susan Phillips

I can’t believe I made it! Almost eleven months ago, I was definitely facing an uncertain future–and here I am at The Indianapolis Motor Speedway. Making future plans when you have pancreatic cancer is like making a bet that you will be here. I reserved our golf carts at Road America in February—You have to bet on yourself and your will to survive. That sounds dramatic, but that is probably what the drivers face when they get in a race car. They have the heart and the will to get in their cars and rely on their skill to get them safely to the end of the race—and victory.

I was diagnosed on July 7th, two days before we were scheduled to go to Road America. I chose to go, so that we could have some fun at one of our favorite places before starting chemo. Although our heads were still spinning from my diagnosis, it did us good to get away for a few days to a place we love.

It’s been a long, hard road to get to this point—12 rounds of chemo that lasted from July to January—50 hours every two weeks, if you count the portable bag I was sent home with. The chemo was appropriately named 5FU, because I would say FU every time I rolled over in bed.  I proudly held up the appropriate amount of fingers for a photo on the way to each session. Here are photos for the first and last sessions.

The chemo was the hardest thing I’ve been through in my life. There were times when I thought I was going to die from the poison being pumped into my body. I did keep the other patients entertained with my infusion pole dancing when I felt good.

I lost my hair and invested in a wig. I took copious amounts of medications to counteract the side effects. I learned that my best friend from elementary school on was also diagnosed with cancer and was about to undergo chemo. She is doing fine now.

We went to the best pancreatic surgeon in the country at the Mayo Clinic in Rochester, Minnesota where we later found that my tumor was unresectable (inoperable) by traditional surgery—surgery is the only cure for this cancer. We decided to go to another treatment that would give me more quality time—the commercial name for it is the Nanoknife, but the surgical term is IRE (Irreversible Electroporation), which uses electricity to kill tumors. We would later find out from my surgeon that the chemo had effectively killed the tumor, so the chemo was worth it. The main residual effects I have are numbness in my hands and feet—which made it difficult to keep my job. My company was great, but it became evident that it is difficult to train cake decorators with numb hands.

I had a rest between chemo and surgery. I spent most of that time recovering from a broken tibia. I tripped over a roll of Christmas wrapping paper and face-planted on the carpet. It’s so bizarre—I didn’t even put my hands out to catch my fall, but the brunt of the fall was to my knee and face. I looked for fun things to put on my head for the holidays—trying to keep everyone’s spirits up. I got the best Christmas gift of all, acceptance by Dr. Robert Martin of the University of Louisville—who is one of the best IRE surgeons in the country. We then waited for some of the chemo toxins to leave my body before surgery.

I had IRE surgery on February 4th and it was really not that bad. I stayed in the hospital for four days and everything was fine—except I was on a liquid diet. I have never been so hungry in my life. We left the hospital and stayed at an AirBnb in Louisville, as Dr. Martin wanted us to stay in town for a few days post-surgery.

I ate copious amounts of ice cream. It had been since July of 2020 that I had ice or anything cold. That explains my affinity for ice in everything. We went home with a feeding tube with an IV pole. I still have the feeding tube, though I have maintained my weight for a few months, my blood counts are too low to remove it. I had a really easy recovery from surgery.

Next step was radiation and oral chemo—there was a delay with consulting my surgeon and my oncologist, then add the insurance company to the mix and we spent a few weeks waiting to find out the protocol. I had to go in for a preliminary visit, so the radiologist could make a mold of my upper body to ensure that I would stay in the same position for each of my twenty-eight treatments. I have really had no ill effects from the radiation/oral chemo combo and have four treatments left. The main residual side effect is incredible fatigue. This month has worn me out. I used to walk about 10-15 miles a day (according to my FitBit) and now I get winded just walking DOWN the stairs.

I can see the finish line—I will ring the bell on Friday to signify I am done with all treatments—hopefully for good. I want to be one of the eight percent that survives this beastly cancer for over five years.

I want to thank all of you for sending me prayers and keeping me in your thoughts. I also want to thank everyone who has sent me flowers, cards, and gifts—it really means a lot to me. It has been a long road, but we have almost made it to the end. I want to thank George for his devotion to make sure I had everything I needed to recover. On Friday, which is also my birthday—it will be a great day to win a race!

This entry was posted on May 30, 2021 at 8:26 am and is filed under Indianapolis 500. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.