My Journey
Living with a Brain Tumor

by Sandra Beardsley

Chapter 4

Making a Difference

Today I received 23 e-mail messages from the 6th graders at my school. I wrote them back a long letter answering their questions. (How's the food? What kind of tumor is it?) They are such great kids and I am so proud of them! They have a web page and a Make a Difference Day project and they dedicated it to me! They have a goal to collect 1,000 hats to share with children that have received radiation or chemotherapy.* They have been researching cancer and know the definitions for benign, malignant, and oncologist. I may have been their third grade teacher, but they have taught me too.

* They made their goal! And then some! (See newspaper article) They also made a video of the experience. It's beautiful! Check out their website.

 

Cards and E-mails

I have received so many kind cards and e-mails from friends and family. A childhood friend from Canada sent me one that meant a lot. I have such fond memories of our childhood together. Another friend sent me one yesterday that made me cry. He talked about the healing thoughts he was sending to me and how he was trying to be positive because of my positive attitude. The principal from the school where I teach sent me one saying a cheer basket was waiting for me at work. They thought hotel life might get boring so the staff had gathered many wonderful gifts to comfort me.

We had a big surprise when the hotel said a postcard had arrived. It was our friends from home. We couldn’t believe they had tracked us down! The postcard said to "Keep the faith!" We knew they understood for he had tumor behind his eye removed a few years before.

 Volunteering

As the radiation treatments continued I began to feel a need to do something. I had seen so many volunteers at the hospital in their blue smocks and thought I might look into volunteering with children. I was almost finished with week 3 of radiation and was beginning to feel a bit of a routine and a need to push myself a little. I went to volunteer services and was lucky enough to find a wonderful woman. She told me that usually they didn’t take volunteers for such a short duration but with my teacher training and my situation she thought pediatrics might say yes. They did.

I was also lucky that there was a training session the next day. I was given a blue smock and photo ID. I volunteered three days a week for three hours. My first day I was wearing my photo ID and someone asked me directions and said" you're a doctor aren’t you?’ It made my day!

I was a little scared at first but soon I felt that I could do this, and if I could ease someone’s pain a little, it would help me too. I met some incredible people.

I had already gained a great respect for nurses from my experience with the biopsy surgery. I soon realized the daily intensity that these people deal with.

There was a four year-old boy that was standing in the hall in his underwear when I first saw him. He had an IV stand and bag attached to him and had no trouble moving around. He and I began to talk and he asked me, "Why I was wearing that thing on my head?" (I had a scarf on to cover my bald spots.) His reality with tubes and IV’s was normal to him but my funny bandanna was not!

His mother was an incredible person. She told me that they were regulars here. Her son was born with a condition that kept him from eating food. He had a tube in his stomach and could only eat a special cereal. He still acted like any other four year-old. His mother was very strong and I felt amazed by her. She asked me where I lived and when I explained my situation she was concerned about me! When I left Sacred Heart Hospital, the people I met through volunteering, especially the children, are still in my heart.

Take Care of You

It’s hard to let others help you! It’s hard to concentrate on yourself. But it’s important. Maybe you don’t have the luxury of this, but if you do have support, take it! Finally when I was feeling so exhausted and emotional with dealing with HMO insurance issues, and communicating with family and friends, I agreed to let my husband handle it. He became the communicator, kept the world at bay, and let me concentrate on resting, and healing.

Pamper yourself with simple things like hot bubble-baths, calming music, candles and incense, herbal teas, special lotions to rub on and think healing thoughts, and books that make you feel good.

Before the biopsy I took multivitamins, extra C, and a pre-surgery supplement I got from the health food store. During the radiation I was told not to take any extra vitamin C or antioxidant that might protect cancer cells. I met with a nutritionist regularly and was told to increase my protein during treatment.

The Housekeeper

The housekeeper knocked on our hotel room door before walking in. I told her we would be leaving in about an hour and she replied she was deaf. I looked directly at her and spoke slowly. She was quite talkative and asked me quite a few questions. She was very friendly and brightened my day. When she realized we were here because of radiation treatments she told me her father had had a brain tumor. I saw her one other time but our brief meeting stayed with me. She showed me that no matter what life gives you, you can overcome it with a positive attitude.

All the Nice People

Vicki was the parking attendant at the hospital. She sat in a little booth and I could always count on her cheery smile. She was so nice and would always say in the most sincere way, "Have a safe trip home!" She must have said that 100 times a day, but each time seemed just as sincere. We gave her a teddy bear when we left and gave me a card. She showed me that a person could be happy at any job they have, and give happiness too. It’s all about attitude.

Pat was a lady who brought her mother in for radiation treatment. She was very fun and cheerful in the small waiting room we sat in. We began to share more as time went on, and it was like leaving a friend when we said goodbye.

Frank was having radiation treatments for prostate cancer. He brought in a bird that he had carved out of wood. It was so beautiful.

All of the oncology staff were so caring, from the oncologist and nurses, to the nutritionist and receptionists.The radiation technicians were kind and made me feel at ease. Craig or Keri would ask about my son’s football game over the weekend, and I would feel a sense of normalcy. I was very touched the day one of the staff reminded me that I had left my special handkerchief and pouch I held during each treatment. This handkerchief had been given to me by my Indian sisters and represented healing to me. They had noticed I’d left it on the chair. They were looking out for me.

My Parents

One of the strangest things about my story is that I am not the first person in my family to have a brain tumor. I am the second. My father had a meningioma tumor six years ago. But before my father had surgery, our family had dealt with surgery even earlier. When I was 16 years old a mass in my mother’s brain was discovered on a catscan. Surgery was performed and an arterio venous malformation was found. This was not cancerous and we were elated! She was very brave and I was shaken by the experience. When I told my sixteen year-old son that I had a brain tumor I remember all those years before when I had found out at the age of sixteen, that my mother would be having surgery. I knew a little of what he might be feeling.

When my father's tumor was diagnosed years later it was partly due to his faltering golf game. He is a golfer and as his balance and coordination were affected by the tumor, his golf game suffered. (He likes to say the tumor was the size of a golf ball). His surgery was at Virginia Mason Hospital in Seattle and again I witnessed courage and positive attitude by my father, as I had by my mother. I was amazed by his quick recovery and attitude.

The neurosurgeon, who had done my mother’s surgery years before, assisted on my father’s surgery. (If he hadn’t been retired when my situation came along I suppose he could have helped at my surgery and it would have been a record!) When I was told I had a tumor I began to question whether there could be any connection to my parent's situations. My husband decided to call the surgeon and speak with him about this. He was very concerned and surprised to find out about me, having known my parents for many years. He confirmed what we had already learned, that brain tumors are rarely hereditary and in our case, the type of tumor my father had, was completely different and in a different location.

I admire their strength and know that I can get through this too after witnessing their courage and support of one another.

My Rock

My husband has helped more than words can express. He has been my rock. He has supported me and held me and listened and been with me through every step. This journey had made us grow even stronger and have an even deeper bond.

He took over calling insurance companies when I was exhausted with it all. He became the communicator for all family and friends. He wrote e-mails and helped me create a letter to coworkers when I returned to work, so that they were given accurate information.

Most of all he made me realize that I’m not alone. We are a team and though I have to fight some of this alone, he is beside me.

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