Edited excerpt from E.A.T An Unconventional Decade In The Life Of A Cancer Patient by Kathy Bero

Revelation

October 27, 200

I looked at myself in the mirror and gingerly touched the red spot on top of a 25-year-old scar where a benign cyst had been removed. I felt a small something, but not really anything. The area was warm, but then again, I had just gotten out of the shower. A flash of electricity ran through my body. Even though I couldn’t feel anything defined, it was there. The soft, elusive mass seemed to dissipate under my touch. I was overwhelmed by a tsunami of fear before wave after wave of clarity rolled over my mind, leaving me with no doubt as to what it was. What else could it be? I had been poked, prodded, and examined for everything else. My head was on fire, my body flushed with panic and I felt anchored by lead as my heartbeat clobbered at my temples. I was overwhelmed with the adrenaline of dread, as a chorus of every cell in my body screamed the unthinkable, “YOU HAVE CANCER!”

Standing alone in the bathroom with everyone else asleep, I took a deep breath in and stared at myself in the mirror. The black and white subway tiles on the walls faded from view, and all I could see was that red spot reflected at me through the steam. My body knew what was growing inside and had been sending me messages all along, but I had been too busy to hear the alarm bells signaling cancer.

As my brain re-engaged, the adrenaline dissipated. I thought about waking Ron and telling him I had cancer, but I knew he would just dismiss me with, “You’re fine. There’s no way you could have cancer. What would the odds of that be?” I didn’t know what the odds were then, but I do now. One in eight women would be diagnosed with breast cancer that year, and those weren’t very good odds for me. Instead, I phoned Suzannah, Ron’s sister and a physician’s assistant (PA) at Memorial Sloan-Kettering. After I described what I had found, the dismay in her silent pause was palpable.

Oh, Kath,” she blurted out.
Then, as if a switch had been thrown, she became compassionately professional and described the possibilities. It was clear from Suzannah’s voice that it was not good, but I had no idea just how “not good” it really was. She asked me to get paper and pen to write down the very specific instructions she was about to give me. At the top of the list for the next morning was to go directly to my OBGYN and not leave until I had undergone each test she named. Suzannah, my own personal PA, presented me with the dialogue that would unfold and gave me the words I had to use to get where I needed to go.

“Those symptoms are typical of an infection,” she said in a deep deadpan tone. “That’s most likely what it is, but don’t leave until you’ve had a physical exam, a mammogram and an ultrasound. Have them fax all the results to me right away. If anything shows up, I’ll have you schedule the appropriate biopsy.”

Suzannah knew they would want to give me antibiotics and send me home, assuming I had mastitis, an infection in my mammary ducts. She was certain this was not the case and sternly instructed me to stay until I had completed all the tests she listed. Not generally a pessimist, I assumed she thought I “only” had the regular curable breast cancer. I had no idea there were 30 different types, and without naming it out loud, Suzannah had diagnosed me with the rare and difficult to diagnose, inflammatory breast cancer. I hung up the phone and began rifling through my memory bank trying to find what I had recently read or heard about localized breast cancer and its rates of survival. I thought it was 98% of all localized breast cancers were curable. After all my grandmother had been diagnosed with breast cancer when she was in her early 70’s. She had a successful mastectomy with no other treatment and died 20 years later happy and fulfilled. I took her memory to bed with me and lay in the darkness persuading myself I would be fine too.
The minutes ticked by, but sleep was elusive. Controlling my destiny was my preferred state of being, but a diagnosis of cancer left me completely out of control. There would be no plucking the tumor from my chest, tossing it in the trash and going along my merry way. In the darkness, my thoughts turned to Suzannah and how dependent I had just become on my little sister.

Friday, October 28, 2005

When morning finally broke, I woke Ron and filled his groggy head with the previous night’s events. In a mild state of shock, he drove the girls to school as he normally did. I called my OBGYN, Dr. Tousignant, who first took me in as a patient when I was surprised, elated and then scared witless by my first pregnancy. Two weeks early, Emma Grace arrived on Dr. Tousignant’s day off, but staying true to her promise to deliver my baby, she came racing in on her Harley-Davidson. She swooped into my birthing room dressed in her riding clothes and caught my crowing baby just in the nick of time.
On the phone with Dr. Tousignant’s office and armed with Suzannah’s list of tests, I froze when they told me she was not in. I was blasted with a chill that ran down my spine, spreading throughout my entire body before sending the same deep freeze through the telephone wires. The assistant clearly felt it and quickly added that the PA would be happy to see me as soon as I could get there. I hung up, looked out the kitchen window and saw that Ron had just pulled into the driveway. I grabbed my instructions from Suzannah and ran out to the car.
On the way to the doctor’s, I rehearsed what I needed to say. I was so grateful for Suzannah’s coaching, which allowed me to push back at the paralyzing fear welling up from the depths. That first lesson in self-advocacy was the biggest gift she could’ve given me. Without her words, I would’ve ended up like so many women who were put on hold and told to “come back in six months unless something changes.” For the cancer growing in my body, six months longer would’ve put me six feet under.

Exploration

June 2008

“A vision without a task is but a dream, a task without a vision is drudgery, a vision and a task is the hope of the world.” – Anonymous 

Cancer amplified the adage that “you have to take the good with the bad,” and in an effort to keep perspective on where my good vs. bad ratio sat, each morning I listed in my journal what was good about the previous day. It was easy to get caught up in the drama of “bad” events, but if I stayed focused on the “good,” I could handle the “bad” a little easier. For example, a new bone scan gave inconclusive results about two spots on my ribs. The spots were either fractures caused by radiation treatment or metastatic cancer. While Dr. Harper explained the divergent opinions on my results, I knew that when they rescanned me in three months, the results would clearly show that the spots were “just” fractures.  It was an untenable position, but while the doctors couldn’t do anything in that moment, I could. I was moving on from managing cancer conventionally to managing cancer through my gardens, my cooking, my visualizations, meditative healings and reiki. I was most definitely using a self-prescribed integrative approach, and it seemed to be working. However, it was hard for my doctors to come along for the ride because the medical culture was one of reductionism, having evolved away from looking at the whole person by reducing our needs into specialties

To that end, my doctors were always searching for trouble. Dr. Harper decided I might have contracted lupus; a chronic autoimmune disease causing the immune system to attack the body and he wanted me tested. As I disengaged from conventional medicine, Lupus didn’t even register as a possibility for me. I grew weary of the hunt-and-peck approach to my health care, which operated on the belief that I “should” be sicker than I was and that just “didn’t seem right.” I delved even deeper into reiki, meditation and visualization practices and reluctantly exercised to pump oxygen into my blood stream, creating a more aerobic state that would be less appealing to cancer. Since I didn’t want to waste my energy eating foods with claims based in pseudo-science, I confirmed that my list of foods had the science to back it up. While it was logical to surmise that other produce could fight cancer as well, I was laser focused on maximizing my benefits and only wanted the foods with proof.

More and more, I was asked by other patients why I was doing as well as I was, and after sharing the details of what I was doing, each one of those people took my strategy to their doctors who responded only with ego; “Well, there’s no data to back up her claims. Just stay the course.” Had their doctors investigated the research, they would’ve found that there was a strong argument being made to use food as medicine against cancer. Perhaps that little extra effort could’ve saved the lives of some of those patients.

“People don’t resist change; they resist being changed.” – Anonymous

October 2013

The wonderfully cool fall days lit a new source of energy inside me with mindfulness at its core. I loved to practice, taking in as many details as I could from wherever I was and whatever was happening around or inside me. It was the brightest silver lining of the many bestowed upon me during my cancer battle and awakened me to who I was and what I was meant to do.  Mindfulness also helped me recognize that cancer was not as evil as it had first appeared. During my battle, I learned to stop and listen, open fully to the peace in my faith and embrace the release of anger, fear and worry. Cancer gave me a framework by which to make better choices in my life and balance my energy in a way that I could serve myself and others. Through it all, I garnered an understanding of the power I had within and how to tap my God-given ability to self-heal. Finally, cancer helped me to understand that even with so much loss, there would always be peace. I’m not saying it was a wonderful experience to have cancer. I’m simply saying since I had it, I had to make the best of it, and I think I did.

I tested my recovering strength and evolved mindset on a trip to Arizona. Ron and I were staying in Flagstaff where we decided to hike Humphrey’s Peak, the tallest mountain in the area. While in treatment, I would’ve been terrified to attempt such a hike, but those feelings were long gone. I embraced what I thought would be a peaceful day hike in the wilderness but found it to be anything but. When we arrived in the parking lot at the base of the mountain, it was full of cars, and outdoor enthusiasts overran the trail. We joined the procession, and step by step, I deliberately navigated the rugged trail as Ron dawdled with his hands cupped behind his back in boredom. He walked that way for almost five miles, and while I felt a twinge of guilt for holding him up, I brushed it off, knowing that he was fully aware of my limitations. I stayed focused on each step, pausing to breathe whenever I felt dizzy, and while I couldn’t be fast, I was steadily moving towards the peak rising 12,637 feet above sea level. I found myself questioning whether I would make it before realizing that the more important question was did I really care.

At a little over four miles, Ron gingerly suggested that I might not be able to make it to the peak, and even though I thought he might be right, I was still hurt by his desire to quit on me.  I forced myself to mindfully take a reading of my body. My legs were shaking, and I grew dizzier the higher we got. I lost my balance more often and was creating a bottle neck for the crowds of people trying to move past me as they trudged their way to the summit.

I began a dialogue with myself; “I don’t need to summit. I’m not enjoying the hike as I might’ve if the trail had been primarily empty. Maybe Ron’s right.  Maybe I shouldn’t push myself to the point where I get hurt.”

When we reached the turn to traverse the last 600 feet of trail, I studied the path leading to the peak. It was covered in shale rock, and our fellow hikers looked like a line of ants marching to the queen. I envisioned tripping on people or rocks as I slowly maneuvered my way up. It wasn’t the type of wilderness I enjoyed. Instead, I preferred solitude, and I wasn’t as goal focused as the rest of our group. My hike that day was about challenging myself and I had done that. So, at 12,037 feet, I stopped. I knew Ron would continue to walk up with me if I wanted to, but I didn’t want to. I stepped off the trail and waved him on to complete his goal. After I peeled off, I watched him ironically take one sluggish step, wait, take another, and wait. It was clear that he wouldn’t be down for some time. He was locked into the line of tightly packed vacationers traipsing their way up the rocky single-track trail to Humphrey’s Peak. Grateful for the day, I found a sunny spot in view of the trail and rested. I chatted with people as they waited to move one more stride, feeling a slight desire to jump in step. It was the shadow of my old self popping up, and as quickly as she appeared, she disappeared like vapor. I wasn’t that person anymore, and an older gentleman I had never met stopped, faced me, and smiled.

He stepped out of line and asked, “Are you enjoying the sunshine?”

With a wide grin, I answered, “Yes, I am.”

Then, out of nowhere, he asked, “Did you have cancer?”

“Yes. Why do you ask?” I questioned him.

“My sister did too. I’m a retired doctor. Why aren’t you going to the summit?” he asked, continuing his inquiry.

“I don’t need to. I’m happy with my hike today. Maybe I will another time,” I said with a shrug.

“That’s exactly what my sister would say. Enjoy your time and don’t let anyone push you to do something you don’t want to do. It was so very nice to meet you,” he said with deep sincerity as he stepped back onto the trail.

That little exchange was the happiest moment of the entire trip. Instead of waiting for Ron to walk me back down and still grinning from my exchange with the retired doctor, I nudged my way against the crowd and moved back down the mountain. I knew Ron would catch up with me sometime later, and when he did, he gushed about the spectacular views but lamented the crowds. Since he had done what he had gone there to do, his demeanor was much more relaxed.

March 25, 2015

My 51st birthday arrived, wrapping me in deep gratitude. It was an old practice among women to joke, lie, or even refuse to answer the question of age all together. I, on the other hand, embraced my age, and as part of my

transformation, decided to really “know me.” Several years earlier, during an activity in a support group session at Stillwaters, I was asked to list my character traits. I sat with that request for a moment before declining to participate. If I didn’t want to share my deepest opinions of myself, I felt it wasn’t fair for me to stay and listen to others expose theirs, so I went home. I don’t know why I felt so uncomfortable. Maybe I was afraid of what I would discover during that tumultuous time, or maybe I didn’t want anyone to really “know” me, including myself.

Approaching 10 years post diagnosis and after oodles of help moving towards the person I wanted to be, I no longer carried those fears. So, over a cup of coffee and my opened journal, I set my intention to be real and began writing. Some of what ended up on that page both surprised me and seemed obvious. I was alive and well. That was good. I was quiet and loud. Was that good? I was calm and excitable, and peaceful and agitated. I was lazy and motivated, humble and expectant, and gracious and needy. I was a caretaker, protector, leader and follower. I was loved, and I loved deeply. I was grateful and resentful, and happy and sad. I was hopeful. I was open and very closed. I was a dreamer and a pragmatist. I was part of nature and disconnected. I was passive and aggressive. I was sensitive and harsh. I was a series of contradictions, forever working to sync my being to the universal energy around me. I was still finding my way as I grew and changed. I left past wrongs in the past and was changed by cancer. I was a different person than when I was 20, 30, 40 or even 50-years-old. I was better than I was and improving all the time. I was smarter, having learned that cancer was puny in our universal awesomeness. I was deeply grateful and forever humbled.

In the beginning of my recovery, there was much talk about adopting the “new normal” after cancer treatment. Generally, the reference was to the negative impacts cancer treatment would inevitably have on me, but I rejected that notion. With a full decade passed, I have grown to understand that the term “new normal” didn’t necessarily have to refer to a “normal” of pain, emotional strife, and fear. The “new normal” could also mean the “new normal of cancer treatment,” which included a variety of modalities and practices to heal the whole patient- body, mind, and spirit. My new normal was filled with meditation, mindfulness, and a deeper understanding of how to find my life’s path through a truly integrative approach to healing. I have no way of knowing if I would’ve gotten there on my own, so for that I am grateful to have battled. In the end, Darcy, my first chemo nurse, was right. I was buying time, but not to die. I was buying time to learn what I needed to know to transform and thrive.

“I began to have an idea of my life, not as the slow shaping of achievement to fit my preconceived purposes, but as the gradual discovery and growth of a purpose which I did not know.” Joanna Field, 1900 English psychology

Edited excerpt from E.A.T. An Unconventional Decade In The Life Of A Cancer Patient by Kathy Bero