February 23, 2009

Musings

It seems that lately people have been telling me they find my story inspiring, or they admire how I cope with cancer, or they have in some other way put me on a pedestal. This makes me uncomfortable. Why?

I already feel somewhat isolated by having metastatic cancer. When people tell me they find me inspiring, it somehow makes me feel even more alone.

Although I have always seen the glass as half full, I also have low moments. If I feel that if you place me on a pedestal as The Amazing Cancer Coping Woman, I am reluctant to share my down times with you.

Today has been one of those days. I am STILL bandaging up to 23 hours a day, with no clear improvement. I have limited use of my left hand so can't catch up on the household chores, like ironing or making dinner. (I did manage to unload the dishwasher without breaking anything.) I want to lose a few more pounds but had no energy to make real food, so I had a coffee and cookies for lunch. I had lower back pain but didn't take anything until it was starting to drive me a little crazy. Now all I want to do is take a nap.

Sleep has become a coping mechanism. When I feel like I just can't deal with it any more, I go to sleep. At least my dogs like to nap with me. So I think I will crash now and hopefully wake refreshed.

That's me -- always hopeful.

2 comments:

  1. I can relate to your feelings...people look at me as "super-survivor" and I am really not that strong. I have lymphedema also and it is an everyday struggle, so time consuming to care for, uncomfortable and inconvienent. I give you credit for sharing your most personal feelings on this blog. I have found that I can't even post on mine anymore because I am disappointing people if they knew what my days are really like! I know you tried the JoViPak with no success, but don't give up on that idea. My therapist suggested a garment called the Tribute by Solaris. It is custom made for my arm (which I wonder is why the JoViPaK didn't work for you) and I wear it every night in place of bandaging. Some nights I wrap my fingers and hand but the Tribute slides right over the wrap. The Solaris company has wonderful customer service and my insurance covered most of the cost. I hope you find a solution for your lymphe-"demon" soon. Hang in there.

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  2. I am sorry that you feel that way, although I can understand why you do. Surprisingly the people that bring me down the most are people who think they understand exactly what I am thinking or what I am going through. The worst is a friend of the family who regales me with stories of horrible cancer deaths while assuring me that I should not be fearful because they died of 'other cancers'. He also once told me that he understood my anger. (What anger?, I asked.) He went on to explain that his sister had cancer and sometimes she simply did not answer the phone because she was 'too angry to speak w/ people who did not have cancer.' (I have never felt angry at people for this reason, I was quick to assure him. I would not wish this on anyone...) He interrupted me to tell me that he understood it was hard to admit this anger. I started to get very angry at him because I wasn't angry at all....

    Another lady from our church is always very curious about how chemo was going. Being an optimist, I said fine. And really, it was. It was taking a physical toll, of course, but I had, comparitively speaking, few side effects compared to others. Friends buoyed my spirits when they flagged. Really, I was trying to focus on my blessings, and found to my astonishment, I was doing fine. This elderly woman was not content with my answer. Each time that I answered that I was doing well, she responded with "I don't believe you."

    People like these made me feel angry and frustrated. I felt as if they were not going to be content until they saw me 'fall apart', begin to cry, something, so that they could comfort me. Negative energy. Ack.

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I dance with cancer. Oy!