Sunday, October 10, 2010

Facebook games, cancer, and my mom

A few days ago a friend of mine posted a link to a blog at Politics Daily about the Facebook "cancer" games that have been going around.  You know, where women get a message to change their status to the color of their bra or where they put their purse using suggestive language all in the name of cancer awareness.   I have to say it made me think a little deeper about how helpful that actually is, how silly it is, and how damaging from a Christian perspective, which is not the subject I wish to discuss today.  The word cancer brings many of my family to mind.  My father has so far survived malignant melanoma.  My maternal grandfather died of the same lung cancer that took my mom.  Both my grandmothers survived breast cancer in an age when that was hard to do.  My paternal grandmother did eventually die of stomach cancer.  Then there are the numerous aunts and uncles who had some form of cancer or another, many of whom succumbed eventually.  But the one I think of most at the mention of cancer is my mom.  Maybe because she was the closest to me to die of cancer.  Maybe because I was only 22.  Maybe because my sister, younger than me by four years, and I were her only caregivers at a time when our peers and friends were all in college where we only wished we could be.  Beyond that, my mom has been in my thoughts a lot lately for many reasons.  November marks both her death and her birth and I frequently think of her most often this time of year. It's the start of the holiday season.  My sister just got married and I was aware of a big hole in the festivities that would have been filled by Mom.  I have a four year old that is going through a trying stage and I want to talk to my mom about what to do.  

This is why Donna Trussell, author of the these blogs, struck a nerve in her blog on the bra game.  She has ovarian cancer which is overlooked in awareness campaigns and is much deadlier than the more common breast cancer we hear so much about.  She talks about "Cancer envy – wishing you could trade in your bad-stat cancer for a more benign variety – is known only to those with personal experience with this dreadful disease."  She probably meant those with the disease since that is her perspective, but I think it can be applied to family, close friends, and caregivers too.  My mom died of lung cancer, not a "womans" cancer and this caused some problems in her care.  Not with her doctors, they were great, but with my mother's, sister's, and my education.  Early on we contacted the American Cancer Society on the advice of my mom's doctor for support and to educate ourselves about the type of cancer she had.  To say they weren't helpful is an understatement.  They sent us 30 miles into the country for a support group when we lived in metro Denver because they said it was the one closest one to us.  Anyone that has cared for a seriously ill person knows what a huge investment of time and energy just daily living takes.  After work and life, getting to this support group was incredibly difficult.  We were in Denver, not some little town without resources and they tell us to drive to the sticks for help?  Then we turned to them for help when our itty bitty sub-basement apartment (all a 22 and 18 year old caring for a cancer patient without health insurance could afford) developed a severe flooding and subsequent mold problem which her doctor said was unhealthy for someone with LUNG cancer (duh), they told us they were very sorry but they had no suggestions for us.  But what does this have to do with cancer envy?  We contacted the ACS several times for resources or information on my mother's particular cancer.  Each time we got transfered to multiple departments before someone would take pity on us and send us some pamphlets and booklets in the mail.  This happened at least three times and every time they sent us information on breast, ovarian, and uterine cancer as though the only cancer that concerned a woman was in her "woman parts".  This infuriated me.  In every instance the ACS failed to listen to us and our needs.  This from an organisation that claims to have insight into the special needs and concerns of cancer patients and their families.  As you can see, even after more than 14 years this still sends me into orbit.  I refuse to support this organization and will tell anyone within earshot why they shouldn't either.  Go ahead, check them out with some of the charitable rating services.  You will find many of these stories.  I never did get a chance to research her cancer and I wonder how it affected her care.  Were there questions we should have asked if we had more information?  Were there treatments we could have pursued?  We could not be an advocate in mom's care because we lacked information.  I kept thinking it would be so much easier if she had a "womans" cancer.  I would have had more help and education than I could handle. To this day, the sight of millions of pink ribbons for months on end gives me a disquieting left out feeling.  I understand what drove this obsession with awareness of cancer specific to women.  Once upon a time our male dominated medical profession spent much less time researching and treating those cancers.  But that was long ago and it's time we remembered that women can and do get cancer in all parts of our bodies.  As Donna stated in her blog, "But don't color me pink. Or teal [the color for ovarian cancer]. I want a new color. I want a rainbow. We use the word "cancer" for what is probably a thousand different diseases. The segregation and disparity in funding between types of cancer is absurd. Name any cell in your body, and you've just named a chance for mutation and cancer – at any time, for any person."

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