It was early May of 2009, I had asked my doctor to look at a very small lump I had noticed in between the top of my rib cage – a little under my armpit. She assured me it was “nothing” and said I must have just pulled a muscle while exercising. The lump didn’t go away. In fact it seemed to be growing, rapidly.
My Journey with Breast Cancer
by Amy Field
I went back to the doctor, who on this visit told me it was likely a sebaceous cyst which tends to grow that way, and sent me home again. Four more visits listed as “reason for visit: breast check” resulted in similar routines with varying explanations. I was in my early 30’s, very fit, always in perfect health, and physically active.
Fast forward to eight months after that first visit – December 21st 2009, just a few day before Christmas. I had been back and forth to the doctor’s office countless times trying to figure out what was wrong with me. Feeling worse by the day, I could now barely walk, and fear seemed to be a constantly present emotion. I knew something was wrong. The doctor had now done a myriad of blood tests – a few more with every visit. I felt like a pin cushion, but the test results showed no definitive answers. I had been tested for Multiple Sclerosis, and “diagnosed” with everything from Rheumatoid Arthritis, Lyme disease, Parvo, Asthma, Acid Reflux Disease, Lupus, Chronic Fatigue, to Depression and Anxiety.
They had me sleeping on a giant wedge pillow, and prescribed heavy antibiotics, inhalers and medications to treat all aforementioned disease states. I had been given referrals to psychologists, handed off to Physician assistants, Nurse Practitioners…the doctor didn’t even bother to see me anymore. And when she would, she would speak to me in this pitiful, patronizing tone. If she ordered a blood test, it was to appease me, probably hoping I would stop showing up in her office (almost weekly now) pleading with her to do something. Anything.
I was sick of explaining to her over and over again how sick I felt. After 8 months of being sent away with no answers and no further tests, I was leaving the office once again with no answers. I returned to the car, where I proceeded to break down in tears. I knew something was wrong with me. I was breaking, if not physically, then mentally. It just didn’t make any sense, and I was not getting any better, and each day was becoming more challenging to get through. I’m not sure why being sent home this day was different than the past 8 months, or if it was really just a breaking point, but I decided not to settle with being sent off without answers again.
I got out of the car and made my way back into the office I had just left, and demanded to see the doctor. Through the tears, I let her know that I was not leaving until I was given a mammogram to rule out this thing in my right chest that was getting bigger, seemingly by the day (but only by my account). Apparently it was not general practice to give mammograms to women under 40, who had no family history of breast cancer. I had accepted this general practice for an exhausting 8 months, but could not do it anymore. By that point the doctor had classified the lump as everything from a pulled muscle, to a fibro adenoma, to a sebaceous cyst, to a normal breast abnormality. She went so far as to say, “Amy, you do not have Cancer. You have anxiety, but if it will help with that, I will order the mammogram.”
It seemed clear that I had been profiled by her as a hypochondriac, even though I had virtually never been to see her other than for a yearly physical. Yet, now I had been in to see her, or called her office, weekly. I started to think they might be right. I did feel anxious, and I may have been starting to get a little depressed, but at least this mammogram could confirm the unknown. At least I would have an answer…
Christmas eve 2009: “You have cancer.” It wasn’t Anxiety. It wasn’t depression. It wasn’t Lyme’s disease, or chronic fatigue, or adult acne, or Parvo, or Lupus or Arthritis. It was, Cancer.
The doctor entered the room with tears in her eyes to deliver the news. She reported, I had a rare and aggressive form of cancer, Triple Negative Breast Cancer. It had metastasized. It was now in my lymph nodes. It was now a grade 3 tumor and rapidly growing. It was shockingly devastating news.
All those months, the doctors kept saying I was “too young, too healthy. You don’t have cancer”… but I did. I knew. I knew something serious was wrong with me. I knew my body. I had made it my career to work in health and nutrition. I had been a competitive and elite athlete, an exercise enthusiast my whole life. I had become a dedicated and passionate yogi. So how could this happen to someone so healthy? I began a frantic search for answers – for someone to tell me it was all a mistake. I couldn’t find either. The eventual discovery of a rare gene mutation, provided some answers, but no peace…and no cure.
I was immediately put into surgery. As the oncology surgeon reviewed my pathology, she looked up at me and advised: “You should go home and start making some plans.” She continued, “Like what you want for your kids’ weddings to look like. It’s good to have that stuff.” I knew what that meant. Numb from the news, I simply replied, “Okay.”
Despite the word of my diagnosis going from bad to worse, almost by the day, I realized I had to make a choice. I was insistent on staying true to my natural holistic ways. I investigated every natural remedy, treatment, and therapy in this country and others, all in an attempt to avoid putting my body through the havoc, the poisoning, that is chemotherapy. I had to make choices, quickly. Researching (often to ad nauseam) is my strong suit…yet, the type of cancer I was diagnosed with had no real road map, no known cure. And if I didn’t act quickly, my chances became slimmer.
The odds I was told, (given my diagnosis) were alarming, and needless to say, not in my favor. And, the list of potential side effects from chemo were staggering. One look in my children’s eyes, too young to understand what was happening to their mom, and I knew, western medicine would have to step in to help save my life. I had to fight this cancer with everything I could, and with all means necessary. I could not imagine the journey that lay ahead of me.
As tired and sick as I was, and would become in the ensuing months, I would still show up on my yoga mat, as regularly as possible, to a place where I felt connected, strong, and healthy. I would now turn my education in nutrition, from helping others, on to myself, tailoring my diet to fight not only the cancer, but the poison that was being sent through my veins in extreme levels. Surgeries one after another, 12 in 24 months to be exact, with the longest one being 11 hours. I became sicker than I ever thought possible. My long flowing blonde hair fell out almost all at once. I was frail. I was unrecognizable in the mirror. I was dying.
“I’m not going to make it to tomorrow. How will I make it through 6 more months of treatment?” I remember thinking to myself, just as my daughter walked into the room. By now I could barely open my eyes, but I always mustered a smile when she would venture in for a visit. She climbed up on to my bed, I didn’t have the strength to help her up, and she knew that, so she became quite skilled at pulling on the sheets, until she got up there. With a giant picture book in her hand, she began to “reading” to me. She was too young to read – and there weren’t actually many words in a picture book, but she would make up a story as she went along, and neither of us cared.
As a tear escaped from my eye and rolled down my cheek, she paused her story. I could sense a change in her energy. I could almost feel her get scared. I couldn’t let her see me this way. At that moment, something inside me changed. I can’t explain exactly what it was; will, anger, stubbornness, inner strength… maybe a little piece of all of it. Whatever “it” was, had to happen if I was going to beat this. I had no control over what was happening to me, but I did have control over my thoughts.
“You are never given a wish without being given the power to make it true. You may have to work for it, however.”
If the negative crept in, which it did often, I needed to learn to release it, to reframe it, or resort back to my daily mantra. “I am healthy. I am strong. And I am free of what doesn’t belong.” I wanted my children to grow up knowing I did everything I could possibly do to be here for them. I didn’t want them to see my fear. I felt it, but it was time to find a new relationship with that emotion. I started to use the fear, as a tool to let me know I was alive and needed to fight.
I refused medications to help with pain, nausea and other associated symptoms. It was my way of staying present. My yoga practice became instrumental in a way I had never imagined. I would practice in my mind by placing myself in the studio, on my mat. I would visualize my practice, seeing each pose, each transition, each breath, and each savasana until the infusion, scan, or surgery was complete. One inhale, and one exhale at a time.
I found that acupuncture seemed to offset some of the symptoms just enough to make the pain tolerable. I refused the placement of a port for my infusions, so I was able to continue my exercise regimen, convincing the doctors that my veins would stay vital and strong enough for IV placements and the like. I would sit for 30 minutes with a warm compress on the only arm vital to take an IV. After surgeries, and the removing of lymph nodes, I was down to one good arm to draw blood from. And before the digging for a vein commenced, I would look the nurse square in the eye, assuring them, “We got this, right?” When in actuality, I was really assuring myself.
At this point in treatment, most nurses are used to just snapping into a port for infusions. They didn’t want to hurt me, but, not one questioned my choice, and they would all look straight at me with a comforting confidence and say “yes, sweetie. We got this.” The doctors would shrug and shake their heads at me. They gave up fighting me on certain things, and we began to have an understanding of each other. I was going to do some of this MY way. Not born out of ego, or to be heroic, or self-righteous (that went out the window with the word cancer), but because, again, I knew my body, and I had to do some of this my way.
After the chemo and the 12 surgeries, there would be a new way of life I was going to need to adopt. I was told to live by a “2 week rule.” If I felt a pain, or anything unusual and it lasted 2 weeks I would need to go in to see my oncologist. My doctor described Triple Negative Breast Cancer as a gremlin, never knowing when or where it would show up. So I would need to be watched diligently. A wise friend said, “This isn’t a sprint. It’s a marathon.” I was always a fast runner, always competitive, and failure was not an option. This however wasn’t a competition or race that I had ever envisioned or trained for. My friend was right. This was a marathon… it was my life, and it was going to be a long one.
Fast forward to the present. It is now 5 years later. It has been a journey. I continue to eat a clean diet. I juice almost daily, and I practice yoga with the strength and passion that I did before my diagnosis. I continue to defy the odds of what I’m told I can do, and won’t ever be able to do again, and I continue to make the doctors a little crazy. There is still no known cure for Triple Negative Breast Cancer. There is still no remission, or pill I can take to get me to my 7 year mark. There is still no defined road map, but, there is determination. There is will. There is choice. And there are two children whose weddings I plan to dance at. 5 years later I appear to be cancer-free.
Here is a test to find whether your mission on earth is finished: If you’re alive, it isn’t.
October is Breast Cancer Awareness month. Early detection is vital. Please check yourself. Advocate for yourself. And like Amy, don’t take no for an answer.
U.S. Statistics on Breast Cancer from Cancer.org
Breast cancer is the most common cancer among American women, except for skin cancers. About 1 in 8 (12%) women in the US will develop invasive breast cancer during their lifetime.
The American Cancer Society’s estimates for breast cancer in the United States for 2015 are:
- About 231,840 new cases of invasive breast cancer will be diagnosed in women.
- About 60,290 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
- About 40,290 women will die from breast cancer
Here are links to some great organizations that provide valuable resources for survivors, their families, and those still struggling with Breast Cancer.
Have you ever been misdiagnosed or felt disregarded?
Photo Credits: All images Amy Field