My Journey
Living with a Brain Tumor

Chapter 7

by Sandra Beardsley

Harold and Maude

Harold and Maude is a movie made in the early 70's that starred Ruth Gordon. I recently watched it for the first time and loved it! It seems mild now but must have made quite a stir when it first came out. It is about life and love and loving life. Ruth Gordon plays 79 year-old Maude. She has a beautiful spirit and everything in life is an adventure for her. She meets a very depressed young Harold who is in the habit of faking elaborate suicides to win the attention of his mother. Harold and Maude meet at a funeral. If that isn't strange enough, Harold, who can't be more than 18, grows to love Maude and wants to marry her.

Maude has such energy and youthful spirit that she becomes ageless, while Harold is barely living, and only realizes this through knowing Maude. Maude embraces life and her exuberance, creativity and joy rubs off on Harold. She gives him the gift of living. This movie made me think about living and how so many people walk around half-living and half-dead. Maude is truly happy and in one scene you catch a glimpse of a small tattoo of numbers on her arm. She has experienced the horror of concentration camp and still goes on to see the beauty in life. In one scene Harold gives Maude a coin souvenir from their trip to the carnival and she says, "It's the most beautiful gift I've received in a very long time!" She then flings it into the sea and when Harold looks surprised she says, "So I'll always know where it is." Maude shows that life isn't about material gifts but is a gift in itself.


Good News and Bad News

On March 29th I returned to Spokane for an MRI. It had been over four months since my radiation treatments had ended and 3 months since my last MRI. Before my appointment I went back to my hair stylist and friend, Steve. He was expecting me as I had the foresight to make an appointment just in case I had enough hair to get a uniform cut. He was great and proceeded to make me feel beautiful with a very short cut. Now if you don't look too close, it was as if I had purposely cut my hair this way. No more bald spots! This ceremonial cut gave a sense of closure to this stage of my journey, as I had been there the day before my biopsy and during radiation. The circle was closing. Steve also mentioned that he had read my website and saw my Julia Sweeney piece. He said that Julia Sweeney's mom gets her hair done there! Small world!

With my new haircut I was ready to get my MRI and tried to be calm and positive even though I had been very emotional the last few weeks and especially the past few days. I had been having lots of dreams and many of them had a theme of trying to help injured animals. Always in these dreams I was trying to convince others to help me. The symbolism seemed to suggest that I might be relating this to my experience of trying to get help with my diagnosis and taking so much effort to convince health care professionals that something was wrong.

I always have to psyche myself up for the MRI as I have a little bit of claustrophobia (at least in this situation) and so I began to focus, tried to relax and take deep breaths as I sat in the small waiting room. Eventually a young man with a clipboard came and asked me some questions including "Had I ever had a MRI before?" "Yes." "Had I had surgery?" "A biopsy." "Had it been cancer?" "Still is." Then he looked up from his clipboard and said "Bitchin' haircut!" That gave me a smile.

Once in the MRI "tube" I tried to slow my heart rate and not emphasize the importance of the outcome of these images. As usual, after most of the images were finished I was brought out to get an injection that would show contrast to highlight certain areas of my brain. Usually a simple task, the two women could not get a vein to cooperate. Each time my vein would collapse. They tried many different places and it was determined that I was dehydrated and cold. A warm blanket was put over me and in a few minutes it was easy to find a vein. I went back in to the tube and finished the MRI.

The next day the neurosurgeon ushered us into the hallway by the light board so we could examine the latest MRI. We all agreed that the tumor had gotten a little smaller, and we were about to jump for joy when the doctor said, "I'm not sure if this matters or not." My husband and I stopped and looked at him and said "Huh?" He explained that what he was referring to was the fact that there were no studies that he knew about that proved the shrinking of the tumor versus it just stopping made a difference in the long run. Again we were confused. How could it not be better to have the tumor get smaller? He explained that yes it was good news, but that eventually the tumor was going to grow back. I looked at him and said "Can you tell me what the goal is here?" He responded that the goal was to make it stop growing. By this time all the good news had disappeared.

We proceeded to his office and he began to answer our questions in a slow and thoughtful manner. I said that I didn't remember about it being a sure thing that the tumor would grow back. He explained that with an astrocytoma it was not possible to get all of the fingerlings that expanded out and mixed with brain cells. I asked him what he had seen in his own practice with my type of tumor. He said that in 10 years, none of his patients who had the same type of tumor and were treated with radiation, the tumors had not started growing again. So it could be years or decades before it grew back. He said it would typically grow back in the same area. I looked at my husband and said "I don't remember talking about this before." He replied, "I think we were told that there was a possibility of recurrence." We had tucked it away because it was too difficult to comprehend.

It was decided that we would meet again in 4 months for another MRI. Once a year had gone by since the radiation treatments, depending on the size of the tumor, radiosurgery might be an option.This is where a strong dose of radiation is given one time.This has risks and is dependent on the tumor being under 3 cm. I gave the doctor a hug and left feeling very confused, yet appreciative that he continued to be straightforward and was willing to explain things again and again. Yes, I wanted him to be a little more sensitive, not use words like life expectancy, try to be more careful about dashing my hopes before I could celebrate the tumor shrinking. Yet I trusted him and that was the most important thing.

Later we visited the neurologist and I told him that until now I had silently been only letting myself think of my future a year from now. I told him I wanted to think in decades "Could I begin to think a decade?" "Yes! I definitely think you should think in decades," he replied.Of course my greatest lesson from this should be to enjoy each day and years. I am trying to do just that but it is also a wonderful luxury to imagine ahead and picture your travels and children and life in the future. It gives you hope.



(song written by Charlie Chaplin, J.Turner, G. Parsons)

Smile though your heart is aching
Smile even though it's breaking
when there are clouds in the sky
you'll get by
If you smile through your fears and sorrow
smile and maybe tomorrow
you'll see the sun come shining through
for you
Light up your face with gladness
hide every trace of sadness
although a tear may be ever so near
that's the time you must keep
on trying
smile,what's the use of crying
you'll find that life is still worthwhile
if you just

"The cure for anything is salt water... sweat, tears or the sea."
Isak Dineson

Gift From the Sea

Up until the MRI I had been quite depressed and emotional. I tried not to show this at work but at home I was going to bed an hour after I got home and my husband was bringing me dinner in bed and being my counselor.To say I was having an attitude change was putting it mildly! During this time we were lucky enough to have some vacation time and took a well needed trip to the ocean.

How true. We relaxed, focused on what was important, and renewed our spirits. Three days at the sea can do more to heal you than a month at home. With no telephone, newspapers, television or responsibilities, we could focus on the waves, sand and rhythms of the surf. While staying in a small beach house I came upon the book, Gift from the Sea by Anne Morrow Lindbergh. I had heard of this book but never read it. It seemed like fate that this little book would be there and the message that it gave was loud and clear.

After the vacation I was hoping to keep my feeling of balance and peace but soon enough the stress of everyday life (including work and a teenage son) began to seep in. I continued to have physical symptoms of extreme stress and a feeling of being overwhelmed. How stupid I thought, if anything I should be filled with joy for every day I am given.

This change in my attitude and physical feelings concerned me. I was feeling a total loss of control over my life. Even my dreams were becoming anxiety ridden. I knew I had to do something or I'd just feel worse. Though I thought I was getting all the support I needed and was really together emotionally, I now realized this was the next part of the journey. I was healing physically, the tumor was shrinking. But now I needed to begin to heal spiritually and emotionally.

I now have an appointment with a counselor scheduled and feel a bit of control returning. Why go to a counselor when I have an understanding husband and supportive family and friends? I realize now that talking to an objective observer who has no emotional attachments can be a good thing. In the support group I didn't want to unload because I liked the people and they were being so brave. With my husband I feel there are times when I don't want to talk about my fears because of the emotional connection. A counselor, like a pastor, can be objective and give you the freedom to let go without fear of hurting someone or worrying them.

Along with the emotional needs I feel at this time, there are also physical needs. I have also realized that the fact I'm no longer on birth control pills after 16 years is another reason my body is readjusting. Initially it was thought I had a stroke caused by birth control pills and I immediately stopped taking them after the seizure.(what I have learned about birth control pills and the risks and effects on my body has led me to feel that I would recommend that any women on the pill reconsider.) Part of my mood swings and intense feelings I now have are due to this change. A book that has been very helpful is titled Women's Bodies, Women's Wisdom. by Christine Northrup, Md. Now I feel that in time I will work through this emotion and physical stress and am glad I am no longer fighting it.

Ocean photos from our trip to the Oregon coast


My Symphony

William Henry Channing (1810-1884)

To live content with small means;
To seek elegance rather than luxury,
and refinement rather than fashion;
To be worthy, not respectable;
and wealthy, not rich;
To study hard,
think quietly,
talk gently,
act frankly;
To listen to the stars and birds
To babes and sages, with open heart,
to bear all cheerfully,
do all bravely,
await occasions,
hurry never.
To let the spiritual, unbidden and unconscious,
grow up through the common.
this is to be my symphony

scene from Harold and Maude

Go to Chapter 8