My Journey
Living with a Brain Tumor

copyright 1999 Marsha McCarthy

Chapter 5

by Sandra Beardsley

To see more of Marsha McCarthy's
beautiful artwork, go to
marshamccarthy.com

Working Again

I was glad to get back to school. The kids have made me feel so good. I wrote a thank you to the PTA newsletter. So many people came up to me and said how it had touched them. That made me feel good. It was easy to write. I titled it My Education.

Parts of being back to work are very easy and others are more difficult. Sometimes I feel really tired and don't want to show it. Sometimes I lose my confidence and get flustered about a small detail, usually related to memory. My colleagues ask me how I'm doing and comment on how great I look. I feel unsteady at times, completely myself at other times. I am wearing lots of hats and scarfs.

The Support Group

I called the clinic to find about any support groups. I was given the name of Mary Lowe. When I called her I was amazed to find out she had the same type of tumor as I, an astrocytoma. She had surgery and has memory loss because of it. She is an inspiration to all and is not a victim, but a survivor! She has created a book, that is a collection of stories and poems written by many people. It is titled "Life is a Rollercoaster, Inspirations for Life's Wild Ride."

My husband and I have attended two of the support group meetings. It felt good to talk with these folks. So many different stories. Some had lost spouses, others were battling cancer presently. I felt safe because I knew these people understood. I shared my story and felt accepted. I took off my hat and showed them my baldness. I felt good. I share my frustration with getting a diagnosis and the emphasis that is put on losing my hair. They understand. It feels good to be there.

Radiation Results

December 21st we returned to Sacred Heart for my first MRI since the radiation treatments had ended. I was confident that it would show the tumor had disappeared. We met with the neurosurgeon the net day. I was pacing the small room we were waiting in, thinking how important these results were to me. When he came in the room he asked me how I was feeling and I could barely think to respond. He told me the radiologist report had said there was a slight shrinkage in the tumor. He said he couldn't be sure on this MRI without comparing it with the last MRI, which hadn't been sent. He said they were trying to find it. I burst into tears. I had not expected to have such a slight change in the tumor even though all the doctors had said it was typical to have no change until more time had passed. I told the doctor that I had to see both MRI's and be shown the shrinkage before I could be at peace. He understood and reassured me they would find it. He asked me to return later.

We went to meet with my neurologist. He was not there due to a meeting conflict, and his office had tried to reach us. He would be returning later and would meet with me then. It was all I could take. When we returned to the neurosurgeons office I sat in the waiting room and quietly cried. I could not hold it in. No one looked at me and I know the people sitting there understood. I had expected to be the miracle patient. I had visualized the tumor shrinking at each radiation treatment, until it had disappeared.

Later we met with both doctors and I was able to see the slight shrinkage on the MRI compared to the other. It really was good news. To have it shrink, even a little in just a month, was reason to celebrate. The doctors wanted to see me in six months for another MRI. I told them I couldn't wait that long. Even though the results of the radiation could take over six months to show all the results, I just couldn't wait that long. Even if it was to know the tumor had stopped growing. The doctors agreed to see me in three months.

Life and Death

My view of death has changed. I used to be so afraid of even thinking that I was going to die someday. Now it doesn't have the fear it used to have. I feel more at peace about it. I do not know what will happen, but I am happy that I have this time now. It may sound so cliche but it's true. No one knows what will happen tomorrow, or the next day. As much as we can, we should enjoy today. I still look ahead, but not as far.
It's funny but I still have a fear of flying. Recently there was an airline crash and 83 people died. I said a prayer for these people and thought about how much I don't want to fly. I realize it's illogical, you would think a woman with a brain tumor would be fearless, but I'm not.

I think back to the summer before last and the lessons I learned then. Our friend Scott Forsythe had walked into the mountains and never returned. Search and Rescue found his car, but after a few days, the search was called off. His friends continued to search, hoping to find a clue of where his journey had taken him. An independent and sensitive soul, he disappeared into his beloved mountains. His circle of friends were deeply affected that summer. The following summer a celebration of his life was given, complete with a slide show of his adventures. The slide show reminded all of us of the rich and full life our friend had led. He had stood on many mountain peaks and had the sun on his face. He still is a part of his friends and will always be.

Ashamed

Recently I have been a little low. I am ashamed of it. I think back to the young man that I met while volunteering. He had hydrocephela and was in the hospital because of an infected shunt. He was fifteen years old and in a lot of pain. We spent some time talking and I found out he liked video games. I joked that because he was so knowledgeable with doctors and treatments, he might think about a career in medicine. He looked at me like I was crazy and replied "Working in a hospital is the last place I'd want to be" His grandmother was there and spent most of her time by his bedside making silk roses out of ribbon. In this boy, I saw a young man that wanted to be a typical kid his age. He was scared the day of his surgery. I had a model sports car with a balloon attached sent to his room. It was a small gesture but I hoped it helped. He is a very brave soul. I feel ashamed of myself.

Don't Worry About What Others Think

I have been too worried about what other people think. I cover up my head and it's strange bald circles and people see my hair around my face and think I have a full head of hair. I may look the same as I was before but I'm not. I have changed and do not want to forget that. I am forever transformed inside. I may look like I'm cured but I'm not. My journey continues and I feel like taking off my hat and showing everyone that I'm not the same, not covering up myself but being open and not tucking this change neatly away under a bandanna.

Counting My Blessings

I am so lucky; I have lived 38 years and been healthy for all of them. I have a loving husband, son and family that give me support and inspiration. My work is rewarding and I love doing it. I live in a community where I feel a part of it. I have true friends and I live in a place where beauty surrounds me.

I am lucky to have the opportunity to take this journey and know what is real and learn about myself.

Music

I am listening to a C.D. that a friend gave me. It's called Migration by Peter Kater and R. Carlos Nakai. It is so moving and when I first listened to it I cried. The music touches my deepest feelings. The twelve pieces are titled with a short description. They seem to mirror my journey. Wandering, Initiation, Honoring, Stating Intention, Surrender, Embracing the Darkness, Lighting the Flame, Transformation, Quietude, Becoming Human, Walking the Path, Service.

I feel I have reached a new place in this journey. It is in some ways more difficult then when I was having radiation treatments and feeling nauseous and sick all the time. At least I had a focus and could concentrate on something. Now I'm back at work and my mind is constantly busy. Recently I felt overwhelmed. I had avoided thinking about the cancer or writing in my journal. Maybe it was my way of taking a break. I feel a need to go on with this journey. To learn from it and not go back to my old life. It is a spiritual one and I realize I need time for reflection and having solitude. It is important. Like the music quietude. The words to describe it are listening, observing, being still.

What I've learned

Forgive...
yourself, your body, the doctors that didn't figure it out, family members that don't know what to say so they don't say anything, strangers that ask dumb questions

Feel...
All the emotions: anger, sadness, joy, fear, love Don't hide it, let it flow out of you.

Fight...
Be strong and courageous and a fighter. I am a survivor not a victim!

Inform Yourself...
learn all you can -- ask lots of questions. You know your body and have ultimate power; and responsibility over it. Even when you think there's no choice, there is, and you make it.

Trust...
Trust in yourself, your instinct and find a doctor you can trust and give yourself permission to let them help you. Trust God.

Laugh...
Laugh when it's easier to cry. It feels so good!

Focus...
focus your energies to the fight, to the healing. Too much energy can be wasted.

Believe...
believe you can win. Believe you will be around to see your grand kids and have gray hair. Believe in the journey and have faith in the outcome.

Live...
When you no longer have a specific fight to focus on (such as six weeks of radiation) you still must stay positive. Going back to your old life is not possible. Instead, focus your energy on living each day and enjoying the gift of life you have been given.

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