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  • Writer's pictureSusan Koehler

The Journey Beyond Breast Cancer

Updated: Mar 15, 2019

The journey began on March 14, 2018. My mind was in a continuous loop: It’s got to be nothing. Breast cancer doesn’t run in my family. I don’t have the risk factors. And yet, it was there, discovered during mammogram, studied through ultrasound, and confirmed by biopsy. “Mrs. Koehler, your results came back, and unfortunately, you tested positive for invasive ductal carcinoma.”

I told my husband first. I leaned into him and cried. Next, I called my daughters, and then my sisters, and then a few close friends. Before each call, I gathered my emotions, but when I spoke the words, tears came. So much was unknown, and the unknown is scary.

In succeeding days, I consulted with a few breast cancer survivors. I began to learn that once you become a part of the breast cancer community, you’re in a club. Nobody would ever ask to join it, but it’s the warmest, most supportive group you’ll ever find.

I talked to my pastor. I sat on his porch, overlooking a tranquil lake that reflects the surrounding hardwoods and Spanish moss. He listened, we prayed, and he directed me to the sign on his wall that echoed Psalm 46:10. Be still. Those words became my mantra.

I headed into surgery the day after Easter with an army of supporters praying, sending cards, and sharing love. Dr. Shelby Blank, my surgeon, was her calm, confident, compassionate self. A nurse named Amanda rubbed my back and eased my apprehension. Someone told me to count backwards from 100... and that’s the last thing I remember.

The surgery went smoothly and I was back at home in my own bed that night. Tissue was sent off for an Oncotype DX test, and although there was no evidence of cancer in the sentinel lymph nodes removed during surgery, a closer examination would provide confirmation. By Friday, I received a beautiful phone call: clear margins and no lymph node involvement. I floated through the weekend and went back to work on Monday.

After a few weeks I met my oncologist, Dr. Karen Russell, for the first time. I anticipated a smooth visit learning about radiation, medication, and some follow-up visits.

Instead, I was presented with the news that my Oncotype DX score was 25, considered mid-range, and the standard of care involved chemotherapy prior to radiation.

To say I was stunned is an understatement. I cried. Ugly-cried. Brilliant, compassionate Dr. Russell hugged me, and then she proceeded to draw diagrams, explaining the situation in a way my non-medical mind could comprehend. The rest of the afternoon was spent meeting my nurse navigator, filling out paperwork, learning about the steps that lay ahead, scheduling my consultation with the chemo educator, and marking May 22 on the calendar as the date of my first chemotherapy treatment.

During the weeks leading up to that first treatment, I read, talked to friends who had been through it, and attended my formal information session. My husband and two of my daughters attended the appointment with me. Ali Kelly, the chemo educator, was already a family friend. During chemo, she became a ray of angelic sunshine. She calmed my fears, checked on me frequently, and answered all my questions with patience and love.

On May 21, I met my friend Darlene at a local coffee shop. She had recently walked the same path, and she was a fount of information. I took notes, asked questions, and sat in awe of the wonderful gift she was giving me by opening up about every detail of her treatment. Her husband, David, passed a book along to my husband. Written by Marc Silver, it’s called Breast Cancer Husband, and it proved to be so helpful.

And then the day came. My husband, sister, and two adult daughters were all there, and since only one person could stay with me at a time, they established a rotation and made sure I was never alone. They took notes, asked questions, and generally spread good will. Best of all, they kept me smiling.

Throughout the infusion area, there were always people dedicated to brightening a dark situation. A guitar-playing music therapist wandered through taking requests. Therapy dogs visited, and the cookie lady rolled her cart to each patient, offering comforting treats. The nurses were genuinely kind and concerned, and one special nurse named Bethany probably doesn't even know the lasting impact she made by her presence and connection.

After that first treatment, I learned how my body reacted, and that helped me build proactive strategies going into subsequent treatments. I also heeded the words of the nutritionist who said, “Know the difference between being fatigued and being lazy. If you’re fatigued, rest. If you’re lazy, get up and move.”

Because exercise and community are two mighty weapons in battling fatigue and strengthening the immune system, I committed myself to attending daily Jazzercise classes at Killearn Lakes TaeKwonDo. The gracious community of friends and healthy dose of daily aerobic activity helped me find joy and energy throughout my treatment.

Early in June, I lost my hair. I had already gotten it cut short to minimize the impact, but there’s no way to be emotionless when large chunks of hair are coming out. I got it all cut off, which was mildly traumatic, but then the transition was over. And I learned that hair is not really all that important.

I counted my blessings. As a teacher, I was so fortunate that most of my chemotherapy treatments were scheduled during the summer when I had greater flexibility in my schedule. Capital Health Plan, our HMO, was easy to work with throughout diagnosis and treatment. And of course, my wonderful family and loving community reached out to surround and sustain me.

By July, I was determined that chemo was not going to keep me from enjoying a moment of life. We hosted our annual 4th of July party and planned our summer vacation. I stuck to a schedule of rest and exercise, and I was extremely careful with anything I consumed. That was a little more difficult when traveling, but it was certainly doable.

We visited family in Maryland, spent a day in Washington, D.C., attended a Baltimore Orioles game, and relaxed at a quiet cabin in Maggie Valley, North Carolina. We returned home just in time for my final chemo treatment on July 24. Although groggy from medication, I rang the bell and celebrated with my loving family by my side.

School started in August, just as that last cycle of chemo was working its way out of my body. I was back in the classroom, matching hats and scarves to every outfit and resting a little each afternoon. I still maintained daily exercise as I waited for the next phase to begin.

Toward the end of the month, my radiation set-up was underway. I received tiny tattoos and large stickers, each emblazoned with a blue, permanent-marker X. A mold was formed for my head, and I learned breathing techniques while lying perfectly still. There was a simulation appointment, and then I was ready to begin.

Radiation is kind of like a part-time job. You go every day, Monday through Friday, and follow your routine. Check in, change into your hospital gown, wait to be called, and then lie still in a dark room while a big machine moves back and forth over you. At first, it was a little daunting. But it didn’t take long to adjust.

My radiation techs – Kate, Katie, and Sandi – were some of the smartest, most positive people I’ve ever met, and just seeing them brightened each day. Music played during treatment, and that was nice. And every day, lying perfectly still and ultimately vulnerable in a darkened room, I found the opportunity to pray.

My radiation treatments ran from just after Labor Day to just before Halloween. Over the course of those weeks, I found my prayers transformed from the displacement of fear into an expression of overflowing gratitude. Throughout the treatment process, I had met so many wonderful people, and I was thankful for each one of them.

Dr. Russell always greeted me with a smile and a hug. She exuded joy. My radiologist, Dr. Philip Sharp, spoke in only positive language, and he never failed to ask about something I was looking forward to. The nurses, nutritionists, receptionists, and techs were both skilled and compassionate. And so I was thankful, not for cancer of course, but for the beautiful souls who surrounded and sustained me with love and positive energy.

On October 26, surrounded by family (all wearing matching t-shirts) and some of my new medical-community friends, I rang another bell. Completing radiation signified the end of the active treatment phase. From that point forward, I would be on medication for five years, would visit the surgeon, oncologist, and radiologist with regularity, and would gradually regain energy.

About a month after ringing that bell, I had a new grandchild, a thin covering of gray hair, and a renewed passion for life. My family came from far and near to celebrate Thanksgiving at my home, an annual tradition that fills my heart. And I was so thankful. My large, loving, laughing family supported me in so many ways – gifts, calls, cards, texts... all kinds of reminders of their love flowed in every day.

My church community held me in prayer and supported me with meals, cards, hugs, and exuberant energy. My neighbors checked on me and prayed for me. During my process of healing, I also maintained regular adjustments at Smith Family Chiropractic. It’s another office where I’m surrounded with positive energy, and the adjustments kept my body feeling good and functioning well in so many ways.

Perhaps my greatest eye-opening experience is how fortunate I am to live where I do. Tallahassee should be so proud of the fabulous TMH Cancer Center that exists right here in our midst, at One Healing Place. I cannot imagine better treatment – in both tangible and intangible ways – than the treatment I received right here at home.

Through the winter months, I continued to regain my energy and grow some crazy new hair. But above all else, I kept moving forward with joy. I was committed to finding gratitude in all circumstances, seeing the best in others, and looking toward the future with hopeful expectation. I continued to exercise daily, connect with others, eat delicious, healthy foods, and prioritize rest.

Then came March, and I was hit with a sudden, unexpected blast of darkness. I didn’t understand my mood. I didn’t like it, either. It was dark and despondent and everything I had fought to avoid. However, it took only a short time to realize it was an “anniversary” mood. March: one year since the journey began.

And so, I wrote about it, and while putting it into words, my focus shifted. Instead of thinking about the diagnosis of disease, I marveled at the process of healing. The love and care poured into me was as powerful as any medication. Every smile, every gentle touch, every card, every connection, every encouraging word conspired to defeat the darkness.

As this one-year anniversary rolls around, I choose to celebrate old and new friends, joyous events, the love of family, the beauty that surrounds me, the grace of God, and the indescribable bliss of living my passion and following my dreams. Life is a beautiful gift for which I am so thankful.

A year in pictures...March 2018 - February 2019

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