Kelly Shafer

November 2017

It was April 2016. I was 56 and life was good. My husband of 18 years had just retired in January and I was already retired. We had just welcomed our fourth grandchild into the world in February. We were looking forward to a river cruise in Europe and a hut-to-hut hike in Yosemite. That month we were headed to Las Vegas.

I was in great shape doing yoga, Jazzercise and hiking. I was eating healthy, so when my weight dropped I thought it was due to my healthy lifestyle. Two days before we left for Las Vegas, I became constipated and bloated. All of my life I had had issues with both of these, so I wrote it off to the corn dish I had made the day before.

In Las Vegas, the painful bloating and constipation continued. And, I couldn’t finish my meals, which is NOT like me! When I got home, I was still constipated. I made an appointment with the nurse practitioner in the office of my PCP (primary care physician), and she confirmed by X-ray that I was constipated and prescribed Milk of Magnesia. That emptied me out, but again another week went by with no bowel movement.

And now I was so tired. I took two naps a day, which again is NOT me. When I look at the picture I took in the mirror of my abdomen at that time, I can’t believe I didn’t think that something was terribly wrong. I had a regular physical already scheduled with my PCP so I took some more Milk of Magnesia and waited until my appointment on May 10.

I remember that day clearly. My doctor walked in and asked me how I was, and I broke down crying. I told her that something just wasn’t right. She did a pelvic exam and her face said everything. She never said the word “cancer.” She said she felt a mass. I’m thinking, “my Mom had a benign mass removed from her abdomen; that’s what it is.”

My doctor immediately scheduled me for an abdominal and transvaginal ultrasound, and I am forever grateful to her for her actions that day. I had a CT scan the following day.

The news was not good. I had a large football-sized mass which was tangled up in my colon, ovaries, bladder and fallopian tubes. I was numb and my doctor was teary. This happens to other people. I take care of myself. Why me? I had just hiked eight miles the previous week with my husband! There was still a chance it could be benign but it didn’t look good.

My husband and I had plans to go to the coast the following week, but before we left, my doctor referred me to a gynecologic oncologist for a consult. The Gyn Onc was pretty sure it was ovarian cancer that had spread to the lymph nodes in my lower back.

We left for the beach in shock. The car ride was painful. My fast-growing tumor made it hard to sit and every little bump on the ride was excruciating. We cut our trip short to go back to Portland for a biopsy of my lymph node on Thursday and a consult with the Gyn Onc on Friday. My kids, my husband and I sat in her office as she told us that I had stage IIIC ovarian cancer. My CA125 was 22,000.

The Gyn Onc told me not to look on the internet. She said, “everyone’s chances are different and you need to focus on you.” It was the best advice I got! Later in the process, I happened to read the mortality statistics for ovarian cancer. I was grateful I hadn’t framed the start of my journey with those survival stats in my head.

I started chemotherapy the next Wednesday, May 25. Just 15 days after my PCP had felt that mass. My tumor was fast growing, which turned out to be a good thing in the end. It responded very well to the chemo which included Carboplatin and Taxol every three weeks. I lost my hair. My daughter cut it when it started to fall out. And finally, my son ceremoniously shaved it off and then shaved his own hair off, too. The plan was to do three neoadjuvant chemo treatments to shrink the tumor and then have the debulking surgery.

In July, the tumor was shrinking quickly, but as it did it tore away from my bladder and colon creating holes. To repair these holes, I had surgery and was left with a temporary colostomy. This was one of my darkest periods. I knew nothing about caring for this new appendage and spent a miserable 4th of July weekend feeling sorry for myself while mourning the loss of my old life. Throughout treatment I was able to remain pretty positive especially with outpouring of support from family and friends. But that weekend no amount of support worked.

My husband Mark called Diane O’Connor with the Ovarian Cancer Alliance. She had called me the night before my first chemo to offer support. After Mark reached out to her, Diane called me with two names of survivors in Portland who had ostomies. I called Judy and for the first time since May felt like someone truly understood what I was going through. I shed a lot of tears that day. She was and still remains my angel, sent when I needed her the most. Judy visited me at my next chemo treatment and even brought me ostomy supplies.

I had my 3rd and 4th treatments followed by my big debulking surgery in August, four days after my 57th birthday. After eight hours of surgery, my Gyn Onc told my family she thought she had gotten all of the cancer. I had a total hysterectomy, including the removal of my appendix, omentum, ovaries, fallopian tubes and parts of my colon. They closed the colostomy and gave me a temporary ileostomy while the colon healed.

The next few months were hard. My incision didn’t close all the way so I had home-health wound care every other day. I was dealing with the care and new diet for the ileostomy; trying to gain weight; and I had three separate intestinal blockages that put me in the ER and hospital for 40 days in September and October. I was losing weight, couldn’t eat and not able to do chemo which frightened me.

After the third blockage and many painful tests, we decided to do exploratory surgery which meant reopening that incision that still had not healed completely. They unkinked my intestines, removed the adhesions and took down my ileostomy. I had three more chemo treatments. My last one was December 30, 2016. I was ready to start 2017 and get back to life.

Nine months later I’m NED (No Evidence of Disease), my CA125 is 8 and I’m living life. We traveled to Hawaii in February and did our rescheduled European River Cruise in September. I walked a half marathon in April. I’m hiking again. I’m spending time with the grandchildren and children that I promised myself I would live for. I’m grateful to my caretaker, husband and best friend Mark. I’m learning to plan ahead without wondering if I will be well enough or even alive. And, I’m grateful to the Ovarian Cancer Alliance, Diane and Judy for their part in helping me to not just survive, but thrive.