From Stage IV to Center Stage

After all appropriate introductions, the medical team shot straight to the point. With very little emotion my surgeon said, “The diagnosis is stage IV cancer with the primary tumor on the back of your tongue where your tonsil used to be. The cancer has spread to both sides of your neck and it is traveling with excessive speed. The results indicate that we need to move quickly. If we don’t get you into treatment soon you may not be alive for Christmas.”

Christmas was only 90 days away.

It felt as if this cancer was some type of “alien” that had invaded my body, my temple, or as the Buddhist refer to it, my “skin bag.” Given my knowledge of holistic treatments, I wanted to take a more alternative approach. But I didn’t have the time.

Without so much as a glance in each other’s direction, Deleta, Marsha and I listened to the proposed treatment protocol. Deleta wrote their every word so we would be able to later absorb what, at this point, were just words filling our ears. This was so scary it was impossible to take it all in.

These docs were as direct as an arrow’s trajectory to a bull’s eye. The information was explained in great detail. They didn’t candy coat a thing. The head of the team asked, “Have you ever had a strep throat?”

I answered, “Yes, a few times, actually. I can handle it.”

He said, “Okay, now multiply that by 100, and that’s about the level of pain you should expect. The amount of radiation required to halt this cancer will burn the outside of your face and neck, and will damage the internal tissue of your mouth and throat.”

His comment pretty much splattered me all over the room. He continued, “Unfortunately, you will not be able to eat for several months so we will surgically insert a G-tube into your stomach for nourishment.”

“A what tube?” I asked. I quickly learned it is a nine inch feeding tube to be inserted just below my rib cage on the left-hand side of my body directly into my stomach. Three inches on one end is inserted into my stomach and the seven inch protrusion is capped at the opposite end and would be taped to my opposite side when not in use.

Before we departed Mass Eye and Ear, the doctors walked us through, step by step, what was coming: four rounds of chemotherapy, two months of daily radiation, with double treatments daily for the last two weeks.

As he explained the radiation procedure he made sure I understood everything that would be involved.

He said, “We will mold a very sturdy mask to your face that looks like fine fishnet stockings. It is crucial that during each treatment we keep you perfectly still to reduce any chance of potential movement. Movement of any kind may cause the radiation beams to destroy your spinal column. The mask will be secured to a gurney and will cover your entire head, face, and neck, and will extend halfway down your chest.”

I thought I had heard the worst of it until the doctor said, “The other potential aspect of this protocol is a radical neck dissection. This is a surgical procedure where the entire left side of your neck will be removed: your SCM (sternocleidomastoid) muscle, all the lymph nodes, your submandibular glands and your jugular vein.”

I knew their mouths were moving but I could not hear clearly. I felt as though I had been transported into a tank of water. Their voices slowed to where they were distorted. I made every attempt to maintain composure. I just kept nodding. My entire body was covered with perspiration. And I was as jittery as if I had just drunk a gallon of caffeine. The voice inside my head was screaming, “Nooo… Nooo….Nooo…remember me, the most claustrophobic woman in the world? How can you possibly think I will be able to emotionally or physically survive these treatments?”

The thick air suddenly felt even thicker making it harder and harder for me to breathe. I felt numb. This meeting was too much to comprehend. Do I really want to go through this torture? It was time to prioritize my life and process the information that I had been handed. I needed to make a decision whether to live or just let myself die.

Deleta, Marsha and I left the hospital and drove the fifty mile return trip home in deafening silence. As we approached my home, I informed the “Dream Team,” “I needed to be alone.

The silence from the car carried into the solitude of my living room. For several hours I sat in total darkness aware of all the “stuff” that surrounded me.

The lights outside softly illuminated the items in my home as I looked around and realized, this “stuff” held no value for me. Not even my dearest friend, my $2,000 Larivee custom made guitar, that had been such a loyal companion over the past 10 years. So often she had carried me away on the vibration of her perfect sound. During a time like this she was the first place I would normally retreat, but not tonight.

The only items of importance were the many photographs that seemed to have wallpapered my refrigerator; visages of the little ones in my life celebrating special moments in their lives, my parents, siblings, friends with goofy smiling faces, and several photos of me looking like the happiest person alive. I stood for an hour in front of my refrigerator staring at their faces.

These people were my foundation. The importance of these relationships could not be overstated. Now, there was no question, these people loved me dearly. They too were all hurting from the news of my illness. I wanted to protect them from this hurt but that would be impossible to do.

If I chose to go through the treatment, I would need a village to take care of me, relying on friends for traveling to and from treatments, doctor appointments, runs to drug stores for prescriptions, emergency visits to the hospital, and, more importantly, I would need their emotional support so vital to my survival. The thought of dying was nauseating but honestly, it felt a whole lot easier than enduring the treatment I just learned about.

It was a huge relief to have had my questions answered. At least I knew the facts and should I choose to live, I now knew what would be required of me. But I had another set of questions that no doctor had the answers to.

I spent the next few days in solitude searching my soul for the answers I needed about which direction to take.

Maybe the cancer has some answers. Maybe I needed to ask it the questions. What is this cancer really about? Why now? Why in my throat and neck?

In 1985 I had been trained in Transcendental Meditation. Since that time I had been faithful to my practice. I appreciated the benefits of quietude, especially when things seemed to be spinning out of control. The faster the energies seemed to be moving, the more I needed to slow down. In the solitude where God could whisper to me in an otherwise very loud world, there was always a resource of guidance.

Although I knew I needed to travel this path of suffering solo, I was not alone

A friend had shared an internet site called CarePages. It was an interactive blog site where I could update my status as often as I liked. Anyone who wished to follow my journey registered. Registrants also had the option to leave me messages of hope and inspiration. Many people wanted to keep up with my progress, and attempting to keep so many loved ones in the loop was a daunting task for my family. The site became my electronic public diary.