Jana Freiberger

May 2016

In May of 2015 I noticed a recurrent feeling of unease in my lower abdomen. I had recently begun drinking milk again and wondered if lactose intolerance was the problem. I played with diet for a while, cutting out milk and cheese, without effect.

By June I noticed some bloating along with the vague unease. Since I had just lost a few pounds in preparation for my 40th high school reunion, I scheduled a doctor visit before my husband, Denny, and I left for a river raft trip in Idaho and my reunion in Wyoming. My primary care doctor, a gynecologist, didn’t have an opening until September (!), so I made an appointment with a nurse practitioner for the next week.

By now, I was looking down and thinking, “This isn’t my belly.” Hearing my symptoms, the nurse practitioner ventured a guess that I was suffering from a lingering virus in my bowels. Remembering an article I read years ago in a health newsletter which talked about vague ovarian cancer symptoms, I asked about this possibility. She asked several questions about family history (no known OvCa), use of birth control pills (yes), hormone replacement therapy (no) and assured me I was at low risk for OvCa. But, bless her heart, she said, “If you are going to worry about this, I could schedule a vaginal ultrasound.”

The earliest available ultrasound appointment was during our upcoming vacation. I scheduled it for just after our return since I wasn’t going to cancel vacation for some vague symptoms that will probably turn out fine. We had a splendid vacation even though symptoms continued to increase (more bloating, pangs of pain here and there, weird urination patterns). By now I knew something was wrong in my belly.

On a Monday in mid-July, I had the vaginal ultrasound, resulting in a phone call on Tuesday saying, “There is a mass that we want to get a better look at. Please call and schedule a CT scan.” Oh $!@#, oh $!@#. At the time, I was driving my 89-year old mom to a doctor’s appointment, listening over the speakers, trying desperately to keep driving safely and to then calmly explain the call to her.

With the CT scan scheduled on Thursday, I made an appointment with the prescribing nurse practitioner for 8:00 am Friday morning. I wanted an in-person, immediate explanation of the findings.

On Friday, Denny and I showed up for my appointment. I was surprised and alarmed to be told that my primary care doctor had come in on her day off and that she would be meeting with me rather than the nurse practitioner. Oh $!@#, oh $!@#. Holding hands, we listened as she kindly explained that the scan and a high CA125 result showed probable ovarian cancer. She described a likely path of hysterectomy and chemo, assured us that great advances had been made in anti-nausea meds and immediately referred me to a nearby gynecological oncologist. We went home, talked to our 25-year old daughter and together went to Mom’s assisted living facility to include her in the news.

The following Thursday I met my new gyn-onc, who I thought of as the general on the western medicine front. He scheduled a complete hysterectomy for the following morning (his day off!). On our way home, Denny and I stopped to buy a couple of gowns (the boxers I normally wore to bed wouldn’t do) and a motorized recliner to be delivered just before coming home from the hospital.

Somehow I knew that the one additional thing I must do before going to bed that night was to compose a letter to family and good, deep friends about the challenge I was facing. This act began a series of updates every 3-4 weeks throughout surgery and frontline chemo that enabled others both near and far to be with me on this dark journey. These people ended up being companions and support on my emotional front-line.

I had surgery on July 31, 2015. Numerous tumors were found in my abdomen, my cancer was staged at 3C, liters of fluid were drained, and my gyn-onc was confident that I was optimally debulked (what a very ugly phrase to describe a hoped-for surgical outcome). My pathology report described an epithelial metastatic serious carcinoma.

I began 6 three-week cycles of cisplatin and Taxol intraperitoneal (IP) Infusions along with Intravenous (IV) Taxol in September. The morning of my first infusion; I wrote “Endurance, Tenacity and Connection” in my journal. That was very accurate advice for what I needed. I finished chemo, without interruption, the last week of 2015. It was a long, hard journey. What carried me through?

• Physically, my body was healthy going in. I pushed myself throughout to do at least a little bit of walking every day. My husband, Denny, was a wonderful support in many ways, but his willingness to prepare any foods that might appeal to me was critical. We paid a lot of attention to high-protein, high-calorie and iron-rich foods.
• Emotionally, many friends and family showed up in caring, creative and meaningful ways. I think of myself as a strong and independent person. I was surprised how helpful it was to lean on others’ strength and positive thoughts when I didn’t have much of my own. Each time I reached out with an email update, people would respond with cards, calls, songs, gifts and prayers that sustained me.
• Spiritually, I have always thought of myself as a warrior. Mental models of different kinds of warriors were (and are) crucial for me to find the steadiness, the courage, the strength to keep living fully under the shadow of ovarian cancer. I used guided meditations (some on-line, some on CD’s) often to calm and center me. Walking outside, rain or shine, reminded me of the amazing natural world to which I belong.
• Medically, the whole oncology team was caring, communicative, encouraging, honest and present when I needed them. I was confident in the care they provided.

When I finished my third cycle, I expected to feel relieved. Halfway done! Downhill from here! What I learned was the entire chemo journey was uphill. Beginning each cycle got harder because I knew what was coming. It was like giving myself the flu 6 times. While anti-nausea meds did keep me from throwing up, I was vaguely (or not so vaguely) queasy about half the time. My brain would be fuzzy for days following cisplatin infusions.

And there was much beauty in my life each day, too. I realized early that I wanted to live my life as fully as possible even while going through the alternate universe of cancer, oncology clinics and infusion centers. While cancer, surgery and chemo took center stage for 5 months; I got out and lived my life when I could.

I had my first quarterly check-up a few weeks ago (CA125 & physical exam). I have felt good and strong physically since soon after finishing chemo. I had no reason to suspect a recurrence, yet I was so scared walking into the office. Would lab results have me walking out on a new, active cancer path? No, they did not. All is well at this time.

I am learning to live with the shadow of OvCa in my life. Sometimes the shadow is all the way in another room, out of sight, out of mind. Sometimes it hovers back in the corner. And sometimes it looms over my head, darkening my world.

I know that we all live with no guarantees and life can change at any moment. But now I know death’s likely face, its name, and its predicted path. I also know that someone gets to be the far, outside point on the curve, the one that says survival for 30 or 40 years after diagnosis. I hope for that while I strive to live today fully and with joy.

Editor’s Note: Jana Freiberger, 58, lives in Longview, Washington. She is a retired chemical engineer, organization development consultant and manufacturing manager. Jana is also a mother, grandmother, traveler, nature lover, journaler, bedside singer, ESL tutor, walker and hiker.