Mom, You Have Brain Cancer

This article is a continuation from the previous post “The Cancer That Gives Cancer A Bad Name”

ONE MOMENT IN TIME

As I drove my black Kia Optima rental car back to my mother’s house along the interstate as the sun was setting, my mother sat quietly in the passenger seat. A small portion of her black hair about the size of a closed fist had been shaved off on the front left side starting at her forehead.  A small bandage covered up the inch-long incision. Small bandages covered each side of her temples where they had attached a brace to her head so she wouldn’t move during the brain biopsy.

I kept looking over at her as I was driving to make sure my precious cargo was alright.  Her eyes closed, she held her head upright but was extremely drowsy from the past 24 hours of activity. After a long period of silence, she slowly opened her eyes and said, “I hope the picture of the comedy club turns out.”

It took me several seconds to understand what she meant but then it had clicked with me.  A couple of months ago, my sister had ironically scheduled a family photo that took place two days before my mother’s biopsy. Ever since my parents split up ten years ago and even now since my mother had been remarried to Mike, we had not scheduled a professional family photo. The only family photos we had were from the typical informal family photo taken at Christmas time year.

All of us dressed up for the occasion, we all stood together smiling back at the camera.  My mother looked beautiful, as she always did.  Her short black hair perfectly styled, her make-up impeccable. Her constant smile was infectious. As the female photographer began to snap photos of our beautiful family posing in the small, cozy studio, my mother became choked up.

Certainly in the back of our minds lingered unpleasant thoughts. But my mother knew something was off. She may not have remembered that this photography appointment had been planned months ago, but she knew we were all gathered snapping a moment in time.  A moment for all of us to be together.  For us to be present with our thoughts. To not think ahead and to not think about the past. A moment to treasure forever.

EMERALD CITY

We followed the neurosurgeon’s assistant down a long, dimly lit corridor that reminded me of the long walk that Dorothy, the scarecrow, the tinman and the lion all had to walk to see the Wizard of Oz. But this corridor certainly wasn’t made of emerald glass.

My mother, Mike, Mike’s son Matt, Abby and I all sat down in a small examination room in the bowels of the hospital. I was getting used to the pure white walls of doctor’s offices. It had only been three days ago when we last saw Dr. Young come into our briefing room to deliver the news from the biopsy operation.

With the door closed, Dr. Young quietly knocked before calmly entering the jammed room. His dark, brown skin nicely contrasting with his white surgeon’s coat. He needed to grab another chair from across the hallway so he could sit down.

Once he sat down, the door surreptitiously closed behind him. For a brief moment, he paused to look at all of us anxiously looking back at him.

Before he could begin, I jumped in, “Would you mind if my mother and Mike stepped out so we could ask you some detailed questions?  The nurse had mentioned that my mother needed to be present but knowing that it is difficult for her to understand everything at this point and to communicate, we thought it may be easier for us to candidly speak without her here.”

Before we had gone into our scheduled appointment, I suggested to Mike, Matt and Abby in the waiting room that my mother not be present for some of the detailed questions that I had planned. After some discussion, we all agreed it was best to share any news with her in our own way, instead of hearing it from Dr. Young, who didn’t want to deliver the news anyway.

Dr. Young looked a little annoyed but nodded his head and walked out of the room. I wasn’t quite sure what he was doing but it was probably because he wanted to wait to come back until we were ready to talk.  Mike stood up and looked at my mother.  She was a bit confused what we were doing since she had just sat down several minutes prior.  Mike held out his hands and she grabbed onto them as she slowly stood up out of the black, molded plastic chair. He led her out of the room and back into the waiting area down the long hallway.

Dr. Young walked back into the quiet, windowless room several minutes later. “Your mother’s tumor is very large and very aggressive,” he began as he pulled up my mother’s brain images on his computer screen.  He showed us how the tumor was spread out and how it had shifted her brain as a result. It had even begun spreading over into the right side, something we originally thought was only isolated on the left side.

Dr. Young confirmed that my mother had Glioblastoma Multiforme, the term that I had researched a week ago. The “multi” part of the word means that the tumor is not only isolated to one spot on her brain, but it also has aggressively formed tentacles that have spread quickly in many different directions.

I couldn’t help but envision the lily pads in the water in front of my mother’s lake property.  How over time I have tried to cut off the long stems that grow up to the top of the water each year, but the roots down in the muck below are extremely thick like a tree branch. And the thin stems will grow back in a matter of days once they have been severed. The only way to truly get rid of lily pads is to pull up the root system, which is not easy to do because you have no leverage as you pull up from the top of the water (and your feet would sink in about four to five feet into the dirty muck below).

It made me sick to my stomach to know that this thing was growing like an invasive weed inside of my mother’s head.  I felt like I was being robbed. Like she was being violated. And yet it wasn’t like you could just find the robber and get your stuff back. All of this was being protected by the blood brain barrier, something that is designed to protect the brain from letting any harmful toxins inside. But now thing had infiltrated the barrier and was free to do what it wanted to while being protected from outside toxins (like standard chemotherapy) from getting inside to kill it.

SLOWED BY THE SYSTEM

“This has most likely been growing for at least six months. It is not uncommon for this type of tumor to go unnoticed for a longer period of time as it spreads. Each patient has different symptoms and side effects of the tumor. In your mother’s case, the tumor has pressed up against the speech function on the left side of her brain disrupting her ability to communicate and also her cognitive functions,” Dr. Young continued in almost a monotone voice.

“So when you saw the results of the MRI ten days ago, you already knew that her tumor was glioblastoma.  So why did we even need to get a biopsy and wait all this time before trying to create an action plan to begin treatment as soon as we could,” I hastily asked knowing that the doctor and everyone that had looked at the MRI knew what was going on with my mother well before the biopsy.

Dr. Young calmly went on to explain that if we lived in England or in Thailand or in some other countries, we wouldn’t have needed to perform a biopsy and we could have begun some sort of treatment shortly after the MRI because we did know what it was. But the insurance system of the United States requires proof on paper of what type of cancer your mother has before the insurance companies would cover any type of treatment or even allow us to treat your mother.

You could sense that Dr. Young didn’t necessarily agree with the facts but that he was unfortunately a qualified messenger of the facts. As we moved through the conversation, Dr. Young was extremely receptive to having my mother receive a second opinion.  He realized his job was to diagnose my mother and did not have the specialty nor resources for my mother’s specific type of cancer. And he immediately helped us make an appointment with the Cleveland Clinic for the following week.

“So what do we tell our mom?” my sister, Abby, reluctantly asked as we were wrapping up our deep questioning.  This was something that had been playing out in the back of our minds for several days now after hearing Dr. Young provide us further details about my mother’s tumor.

“Oh, she will understand whatever you tell her. She still has the ability to understand,” Dr. Young said with a somber smile as he stood up and moved closer to the door. We almost didn’t want him to leave knowing that in the next few minutes we would need to deliver the most heartbreaking news that we have ever had to tell our mother.  Abby, Matt and I all sat motionless looking at each other not knowing what to say after Dr. Young left the room.

Mike brought my mother back into the examination room where Abby, Matt and I had all been for the past twenty minutes. She sat back down in the chair next to Mike.  Abby and I both looked at each other knowing that one of us had to tell her.

She sat looking at us wondering what was going to happen next. As I looked into her eyes, my heart just couldn’t handle telling her the news.  I stood up and sat on the floor next to her chair wrapping my arms around her waist.  I looked back at Abby slightly shaking my head letting her know that I couldn’t do it.  I placed the side of my face down on her lap and squeezed her.

“What do I need to know?” my mother asked realizing we were about to tell her something serious.  Abby scooted her chair over to be directly in front of my mother. Matt stood up and placed his hand on my sister’s shoulder.  Abby took a deep breath, looked into my mother’s eyes looking back at us and said, “Mom, you have brain cancer.”

My face went completely numb and the weight of my heart was the heaviest that I have ever felt. Tears flowed out of my eyes and onto my mothers pants as my head remained still.  It was like our hearts were connected.  I was part of her and she was part of me. And when her heart hurt, my heart hurt just the same.

“Oh shit,” my mother exhaled as the words immediately sunk in. Abby, Matt and I had briefly strategized on the language we would use before breaking the news with my mother.  We knew we needed a miracle but also believe that miracles do happen. I believe in the power of the mind. That if we tell our bodies to do something, that our bodies will do it. So we wanted to remain positive with our mother to give her that strength to fight for herself.

Abby went on to explain to her that while this was a tough situation, she can fight against this. That we can fight this together. With all of our hands on my mother, my sister bravely asked her if she wanted to fight this. We knew it would be a tough battle but we wanted to make sure this is something that she wanted to do.

“Yes, I want to fight!” my mother said without missing a beat. Even though we were all emotionally drained, we were all so proud of her. We found the energy to be strong with her and give all of our love to her during this scary moment. I can’t even imagine what it must feel like to hear those words. My heart just hurts thinking about it.

We all pulled in together for a group embrace and sobbed. I didn’t want to let go of my mother.  She is my person. She is my rock. But I know that we will get through this together.

After a beautiful moment we all shared together, we began to walk out of the Emerald City. The mood a little lighter, Mike chimed in “You know honey, you never used to use that word ‘shit’ before you met me. I see that I have been a bad influence on you.” My mother giggled and the rest of us laughed.  It was a much needed moment of positive energy to begin our journey ahead.