Romy Shiller

You Never Know – Chapter 2: Sure

In book on October 16, 2011 at 11:45 am

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You must do the thing you think you cannot do.

Eleanor Roosevelt


Life’s a bitch. You’ve got to go out and kick ass.

Maya Angelou


The tumour was pretty big and it was located in the fourth ventricle. That is, it was in the back of the head, near the brain stem. It is officially called a “choroid plexus papilloma.” I had some decidedly bad symptoms: I think of them as “events.” First (and one time only), I could not see half of my face in a mirror and my hearing was wonky. Then, a few weeks before the first surgery, I threw up. I spent the entire day in bed, which I never do, thinking I had a migraine headache or sinus infection. Sure.

Right before the first surgery, I went to Montreal, where I grew up. I saw my brothers, Warren and Doug, my brother Doug’s wife, Sonya, and my long-time friend, Joy. I used to imagine I would return to Montreal to live. My fantasy included having a loft on the Lachine Canal, which is on the water, right near the Atwater Market, full of fresh flowers – a place I absolutely adore. That is where I had had brunch with the gang. Even though I was not feeling well, I did eat some good food. I took sinus medication at the restaurant thinking it might help or at least alleviate my symptoms. We took a picture on a bridge over the Lachine Canal. It is now by my bed and I look at it every day.

I made the decision to wait until I got back to Toronto to see a doctor. I called my family doctor, but she was away, so I spoke to the doctor on call. I described my symptoms and told her I thought it was a migraine. She said that what I was describing did not sound like that and I should go to an emergency room. This call and decision changed my life. I immediately called my boss to let her know I might not be in at work the next day. Little did I know I would never be back. She offered to drive me to the hospital, but I declined. That was so thoughtful and generous; however, I decided to walk there alone.

In addition to the tumour, or because of it, I had hydrocephalus, so they put me on cortisone to stop the brain from swelling. The fluid that goes from your spine to “bathe” the brain was not circulating properly. Surgery was the only option.

My general practitioner came to visit me in the hospital before and after the coma. I always really liked her and was immensely glad to see her. I heard that she had been very upset at my condition, but she was fine around me. Incredibly professional, I thought.

I remember her telling me that her own family, like mine, had a hard time gaining access to a hospital to see her ill dad because of the raging SARS epidemic. It made the experience of access quite universal for me. In addition, I was completely unaware of everyone’s difficulty in this matter.

SARS was such a big thing in Toronto. Everybody I knew was terrified of getting it. There was a big demand for face masks. Ill persons were suspect. Contact with others was limited. One woman at work quarantined herself for ten days because she might have been exposed to the virus. I thought this was very prudent of her. I completely understand the hospital’s reticence to let people in. They would not know who was infected with the virus or who was bringing it into the hospital. There were special stations set up where people could sanitize their hands without water. This lasted for a considerable length of time.

A while back, I did some research on this (or a similar sanitizing product) for a public relations firm. I looked at 2,000 years of hand washing history. To say I learned something is an understatement. I carry my new knowledge with me everywhere. Did you know that many adults and babies died from simple germs on their hands before hand washing was readily available? In any case, it gave a broader meaning to what the hospital was doing.

A surgeon said I had fluid and swelling near the brain stem post-surgery. Also, there was a mysterious white substance released that nobody has been able to identify to this day. The doctors initially said that I would recover from the surgery. No one expected me to go into a coma. I was supposed to feel like someone hit the back of my head with a baseball bat and I was going to walk like a “drunken sailor” for a while. Yup. Now I feel “drunk” all of the time. Imagine how that feels. Unfortunately, I cannot stop drinking to fix this. Again, this is something I have no control over.

The brain tumour was unique from the get-go. Usually only young children get this type of tumour, and here I was, not a young child but an adult. It was 2003 when I walked into the hospital. I have not walked since.

I asked the doctors tons of questions about my impending surgery and condition. I did not question whether I would have the surgery. I was fully aware that I really needed it and I am more than grateful to most of the doctors who I believe saved my life. I would have appreciated knowing what “dysarthria” is, a voice and speech impediment that I now have. I really like knowledge; I prefer to be in the loop. Naturally, I did not know the term “dysarthria” and condition or I would have asked about it. I think patients need to know more about what might happen. Now I am all for optimism – pessimism really bugs me – but I do like to know the “what ifs.” Unfortunately, these never came my way. Not that it would have changed anything, but I would have liked to know. There are some people who prefer to remain in the dark. I am not one of those people. A friend once asked me if I would want to be told if I was being cheated on. It would be unpleasant (to say the least), but I would rather know. Knowledge works for me.

I had what I consider five initial surgeries. The first, eight hour most humongous one was to remove the tumour and check it for cancer. The second was a drain replacement, after which I do not remember anything until after the coma, except for my dreams. The third was an emergency to correct some bleeding in my brain. Then I had another drain replacement. During the fifth, my drain was replaced with a permanent shunt.

My initial surgery was postponed for two days. I did not want to get too hungry, because they would not let me eat before the planned surgery, so I asked my brothers to get me spaghetti and a strawberry milkshake from a restaurant I used to frequent quite a bit. I also thought that maybe this would be my last supper. In a way, it was: I had a feeding tube for eleven months, there are some things I will not eat now and I am not the same physically.

The morning of the surgery, I did ballet steps. I find it ironic that I cannot walk now. My balance and coordination are so off. I was also in great shape. I went to the gym a minimum three times per week. I did the Stairmaster® – I called it the stair mistress – for 45 minutes and I swam. I also took a multivitamin and a vitamin C supplement every day. In many ways, I guess my body was prepared for surgery.

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