Sunday, February 20, 2011

Living On Borrowed Time...

When I was about 12 years old my mother turned 50 years old. Of course to a 12 year old that seems very old, what did I know. At that time she announced that she was “living on borrowed time.” I hated that expression. It scared me to think that at any moment something could happen to her and she would be gone. She liked to use it often too. I think it was to guilt trip me, but it scared me for a very long time. I swore I would never ever say it to my children, when I had them.

Six months before I turned 50, exactly seven years ago today, I had a tumor removed that was diagnosed as a rare cancer. It is called LMS (leiomyo sarcoma a cancer of soft muscle tissue). I never heard of it. It was in my left groin. There are many blood vessels there so the doctor could not take out much extra tissue around it. I really thought I did not have much time to live and I just prayed that I could finish raising my children, who were 14 and 16 at the time. In all my fear, the irony of those words “I’m living on borrowed time” hit me like a ton of bricks.

My mother was 88 at the time. She had been “living on borrowed time” for the last 38 years. I wasn’t even 50 and here I was running out of time. She had Alzheimer’s and I couldn’t even tell her what I was going through. She still had the ability to understand and I think she knew something was wrong, but I never told her anything about it. Why worry her when there was nothing she could do? She didn’t have much time left and I wanted her last months to be peaceful and not full of worry and anguish. And when she passed away a year later, she died in her sleep, never knowing anything was wrong.

Unfortunately for me, the professionals advised me to tell my girls about my illness. So I could not keep the promise I made long ago about not telling them I was on borrowed time. It had to be done. My fears as a child were becoming their reality. The hardest thing I have ever had to do was to tell them about the cancer and how I was going to do everything possible to fight it and be here for them. They were scared, and withdrew. They had no questions. They went off together to distract themselves. I didn’t look or act sick. We could all pretend nothing was wrong between the CT scans. But every time one rolled around, every three months, there was dread and anxiety. What if the scan showed something? It’s a hard way to live. I did everything to keep things normal at home. And since they never came to me with questions, I would go to them to make sure they were ok. And when every test result came back fine, we would all breathe a sigh of relief.

They say you are out of the woods after 5 years. But if you read about this cancer it can come back any time, ten to twenty years later. No one knows why. It’s too rare to raise big money for a cure. I will have to have a CT scan every year for the rest of my life. I can’t shake the feeling of being on borrowed time.
My doctor is very optimistic. She calls my visits “well visits” like when you bring a baby in for a check up or a vaccine. I love my doctor, she has always been very compassionate and thorough. I wish I were going to visit her under other circumstances.

I’m going to share a little something extra I used as a coping mechanism. After seeing my doctor for about six months she informs me that she is going to Memorial Sloan Kettering Hospital and I can change over and see her there or see another physician at this hospital. Of course I didn’t want to leave her, but my insurance wasn’t accepted at MSK. Out of the blue, on the doctor’s first day at MSK, my insurance changed to covered all expenses at that hospital and it actually cost me less money to see her there.

I noticed that she was not her usual self the first time I went to visit her at MSK. I think she was having a hard time transitioning and it showed. So I made it my business to “cheer” her up. So with every subsequent visit I would bring a little gift bag for her and her little daughter, who was two. In my mind, the visits became not about the cancer I had, but about helping my doctor by bringing a little joy into her day. I did this with every visit. She would tell me I shouldn’t and I told her it’s my therapy. She would tell me how much her daughter liked the gifts I brought from the previous visit. And for a few minutes, on those days, she didn’t have to think about terminal patients. So I started to look forward to my visits and shopping for little things to bring. It put a positive spin on my tests and results.

Of course, I know I was blessed with a miracle. I shouldn’t be here today, but I’m on borrowed time. I’ve been cancer free seven years and my younger daughter will soon be a senior in college. My prayers were answered in more ways than one.

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