On August 21, 2007 I returned optimistically for a follow-up visit to a pulmonary specialist I had met just days before. Since I believed that I was in very good health, I expected the diagnosis of my persistent cough to be an infection treatable by western, allopathic medicine.
“Three radiologists have read this CT scan” he began. “One believes that the nodules may be benign and the result of an old infection. The most senior physician and his associate, however, are certain that this is metastatic lung cancer.”
I took in the words slowly and thoughtfully. Danger, I had been taught by a guru, can be sensed up to 50 feet away if you are smiling. Responsively, I smiled. Not broadly, but peacefully and with a sense of necessary calm.
“This is very serious” the doctor voiced quite sternly. “Do you realize the critical nature of what I have just said? You have cancer. And we must begin a plan for treatment as soon as possible. You will need a lung biopsy. I know an excellent thoracic surgeon. His diagnosis will guide your chemotherapy and radiation.” He went on to describe the invasive procedure that was recommended for further diagnosis and treatment. But his words were falling on deaf ears.
From somewhere inside my head these words were emphatically stated “Not that way…not this time.” What, I wondered, was that? I took a deep breath.
“Thank you” was the only phrase that I could muster. My head was spinning but I had been taught to suppress fear-based emotions so I could present a controlled image. I had learned it well and had done it my whole life. I slipped down off the table and stood tall. “Thank you”, I repeated, “but I will not be having a lung biopsy. There will be no reason to cut me open. I will figure out how to deal with this, but not through surgery. And there will definitely be no chemotherapy or radiation.”
“This is the only way for further diagnosis” he stated emphatically, “but at least agree to have a colonoscopy. You are past 50 years old and it is highly recommended. The cancer could be there.”
“Thank you” I repeated. “I will think about it.”
I left his office knowing that I would not return there again. I felt that I had been treated like a disrespected child – as if I was unable to make wise decisions – as if his diagnosis was the right one and I, a mere patient, must abide by his rules. I wondered, as I walked out of the building, if most patients who receive a similarly shocking diagnosis react differently. Do they, I thought, turn their lives over to someone who doesn’t know anything about them except the momentary glimpse revealed by a CT scan? Do they believe they are incapable of healing without someone else guiding it?
I opened my car door, slipped into the seat and sat quietly. Six and a half years earlier my father had died – after being diagnosed with lung cancer. My family and I stood quietly by while my dad succumbed to the dictates of an oncologist. Chemotherapy and radiation ravaged my father’s previously robust physical body. Within two years he passed from this earth. After the final ceremony I stated to my five siblings that if that – cancer – ever happened to me, I would not die in that way. There would be no chemotherapy, no radiation. The science behind those two procedures was sketchy, at best.
“Not that way…not this time.”
I closed my eyes. ‘Did I really hear that voice – or did I imagine it? Was this simply my way of believing that I could avoid a fated journey?’
I started the car and headed home to my husband. One day earlier, my primary care doctor had called me at home to inform me that the results of the CT scan seemed to indicate one of two lung infections – sarcoidosis or histoplasmosis. She explained them both, providing the details of likely treatments for each of them. I had done my own follow-up research and had been thoroughly prepared for this visit to the pulmonary doctor – or so I thought. Unfortunately, neither of the previously anticipated infections was even mentioned.
“Well?” my husband asked, as he greeted me at the door. “What did he say?”
As calmly and as composed as I could, I answered. “He said I have lung cancer.” I mumbled the conversation that ensued during the doctor’s visit, reliving my surprise at the diagnosis, my indignation at his bedside manner, and my firm resolve that I would not follow his recommended treatment. I did not mention the ‘voice’ or its directive.
“What do we have to do?” my husband asked. He is a doer, a fixer – a man, a Marine. I could already tell that this battle would not be mine alone. And then, for the first time I released the stern façade and I cried.
That afternoon I called to schedule a colonoscopy. Dr K requested that I meet with him prior to the procedure when he learned what had prompted my urgent request. We met two days later. I replayed the events of the past several months – the persistent cough and the unyielding discomfort under my right rib, the many prescriptions for antibiotics, the x-rays, and finally the CT scans.
“We are looking, I assume, for the primary cause of this metastatic cancer”, he pondered aloud. I nodded my head in agreement. “In that case” he continued, “I recommend that I also do an upper endoscopy. You will already be under anesthesia and I can do the procedure during that time. That will give us the best picture of what is going on in there.”
It seemed to make sense that if I wanted to know where the cancer had originated, this was the least invasive next step. I explained the details to my husband as we drove home. Three days later, we returned for the procedure. During the intake, I had a sudden change of heart. “Am I giving in – giving up?” I wondered. I came for a colonoscopy. The risks that had just been explained set my mind reeling with fear again.
“I have decided not to have the upper endoscopy” I told the receptionist. After a bit of unsuccessful coaxing, she instructed me to sign the papers indicating my reversed decision.
“I will inform the doctor” she replied.
I returned to the waiting room to tell my husband that I had taken back my control and decided not to undergo the upper endoscopy after all. Without missing a beat, he provided the much needed support. “If that’s what you think is right” he said, “then that’s what you should do.”
During the next ten minutes I allowed the newly claimed control to resonate throughout my body. I was confident that the doctor would not find cancer in my colon. I was so confident, in fact, that by the time they prepped me, I had changed my mind yet again and asked that the doctor perform the second procedure.
“Susan”, the doctor called as he poked his head around the curtain following the procedures, “Everything looks great. You have one of the healthiest colons I have seen in a woman your age in a long time. Is your doctor certain that the cancer diagnosis is correct?” He went on to describe that tissue had been removed for biopsy to ensure that no miniscule growths were missed. “The cancer is not in your colon. In fact, I cannot find any trace of it. I will be in touch if anything different is revealed by the biopsy. Good luck to you.”
I walked gingerly out of the office with my husband. ‘It’s not in my colon’, I thought. ‘And it is not likely in my esophagus, my stomach, or my small intestine.’
I called my daughter when I returned home to tell her the latest news. During her undergraduate studies, she had dated a guy who went on to become an allopathic physician. They were still very good friends. “I talked to Tony” she started. “He said that nodules on both lungs are typically indicative of metastatic lung cancer. The primary cancer is often in the bones.”
That possibility stopped me in my tracks. ‘Bones’, I mused…’my support system…my strength…the frame of my very being’.
“Well, that would certainly be a challenge” I responded.
That same afternoon I called my OB-GYN to request a visit. I was attempting to cross body parts off my list and breasts seemed to be next. I had acquiesced to mammography in the past – not annually as suggested, but periodically. (Without much breast tissue, I often joked, how could I possibly have breast cancer?!) I knew I would need a referral for this procedure. ‘Interesting’, I thought, as I waited for an appointment time, ‘even this is controlled by someone else. Without a referral, the insurance company will not pay’. Thankfully, my doctor agreed to see me two days later.
Again, I described the cough, the discomfort under my right rib and the unsuccessful suppression of both to the intake nurse. She led me to another examination room, explaining as we walked that Dr. N had requested an abdominal ultrasound prior to the examination. Following that non-invasive procedure, I waited patiently in Dr. N’s office. I told her about the x-rays, the CT scan, the diagnosis, and the most recent procedures.
“Well, we can and should do a vaginal exam. That will rule out ovarian and cervical cancer. And a mammogram is certainly recommended since you haven’t had one in a few years. But, if we are looking for the origin of metastatic cancer” she continued, “why has no one suggested a PET scan? It’s expensive, no doubt, but it can provide a picture of your whole body – all of the organs and bones – and tell us where the ‘hot spots’ are located. This poking around’ is crap,” she stated emphatically. “I am probably overstepping my boundaries, but I am going to order the scan. I will call to let you know when it’s scheduled.”
She described at length the procedure, the risks, and the follow-up. For the first time, I felt as though someone in the medical profession was advocating on my behalf. I relaxed somewhat as I returned home.
Late that afternoon, a medical assistant called to relay the details. That Friday, two days later, I was scanned by PET - Positive Emission Tomography. Late Sunday evening, my OB-GYN called.
“I have received the results of the PET scan, Susan” she began. “I am sorry to tell you that it appears the origin of your cancer is your pancreas. It’s difficult to find pancreatic cancer early. A metastatic cancer, originating in the pancreas, is very serious and likely late stage. I recommend that you return to the pulmonary specialist to discuss treatment. I have contacted him and he has already set up an appointment with an oncologist at Roswell Park Cancer Hospital for next Wednesday.”
“Thank you” I responded and as I smiled, I knew I would not see the inside of that hospital as a patient.