This is a continuation of the stupid little viral FB game: 2 years ago it was women posting the color of their bra; last year it was the location of their handbag, saying that's where they like to do it. No mention of breast cancer, no funding for research or free mammograms, nothing but a slightly titillating phrase: I like to do it on the kitchen table, hall closet, rocking chair, whatever.
This year's "fun" is based on our birthdays. Your birth month is assigned a number of weeks, your date corresponds to a snack that you will claim to be craving. The result is something like "I'm 12 weeks and I'm craving meatballs." Once again, no mention of cancer, no funding for research or any useful services.
So, for the next couple of months I guess we get to read a bunch of updates that sound like a whole lot of women are in the throes of pregnancy cravings.
I'm generally all for increasing awareness, especially if it's aimed at younger people who don't think much about breast cancer - assuming breast cancer is a disease of their mothers or grandmothers. And I'm also in favor of having fun! However, these stupid little viral games have bugged me from the start. I believe that if you're going to have an awareness campaign, you really ought to provide something useful - you know, information or funding or something.
Also, I think that any awareness campaign should not be hurtful to the people who actually have that disease. These viral games, while they may seem like harmless fun to many, actually touch on some potentially very painful issues for those of us who live with breast cancer.
And this one is particularly painful. Most younger women who get breast cancer (or any type of cancer) will have to deal with fertility issues. Chemotherapy and other drugs often cause instant, premature menopause. Sometimes the menopause is only temporary, sometimes not. Even if it's just temporary, the years spent fighting our disease may have been the years we needed to start a family.
The reality of cancer is not charming or titillating. Cancer is ugly. Cancer is not a game. Many of us go on and live good, fulfilled lives. But cancer is ugly. Our bodies are cut and rebuilt, mangled beyond our recognition. We sit and feel our libido drain from our bodies - yes, it is hard to get excited about sex when you feel like puking. We may suffer joint and muscle pain. Our hands and feet may burn, tingle, or become numb. We lose function of limbs, organs, and sometimes our brains. We get lost in the fog of "chemobrain" - losing our ability to complete sentences, remember, or understand. We lose work because we're too sick, or maybe just because we make other people nervous - being the perfect picture of their deepest fears. We watch our childbearing years pass while taking various drugs that we hope will save our lives.
And that's for those of us who are lucky enough to survive. (and that's just the physical losses - not even getting into the depression and fears)
I'm someone who tends to focus on what I have, not what I've lost. I've lived with the reality of breast cancer for 10 years now, and I have a great life that's full of laughter, love, and fun. But it is also filled with loss - loss caused by breast cancer.
My body is not the body I lived with for most of my life. I'm cut and pasted. I have large areas of my body that have little or no feeling at all - stomach, breast, part of my hips, upper part of my arm. I'm constantly on the lookout for signs of lympedema - swelling of the arm or torso for which there is no cure. I still suffer from a slight aphasia, the result of lingering effects of chemotherapy on my brain. I suffer weakness and loss of range of motion for which I continue to struggle to compensate. I consider myself lucky that, unlike many others, I did not suffer any permanent heart damage from my drugs. And I knew that after so many years of life-saving drugs, trying to get pregnant in my mid-40s might be theoretically possible, but a great longshot. I knew that I would likely be able to respond to the question, "Do you have children?" by saying, "No, I had cancer instead."
But I am someone who tends to focus on what I have, not on what I've lost. So, I relish in the things I can do. I can run - far. I can climb; I can swim; I can windsurf; I can ski. I can write and try to encourage others to find all the things they can do - and then do a little more. I can teach others to be more self-sufficient, to be strong enough to do the things that matter to them. And while I may sometimes hide my tears behind dark glasses at the beach while I watch the young families with envy, I can be thrilled at the good fortune of my friends. I can be a great aunt - the one who's always fun & encouraging. I can do and be many wonderful things, but I will never be some cute, sexy young thing with a perfect body wearing a sexy bra, and I will never be 12 weeks and craving meatballs.
I am 0 weeks and am craving nothing - because I had cancer instead.
I don't want to discourage anyone from having fun. Write silly, titillating FB posts. Just don't use my body and my losses for your fun. Please - it's just too painful.
And if you want to do something for cancer awareness, do something that matters, something that might actually help. Donate to an organization that provides free mammograms to low-income women. Give money or time to a group that helps fund research. (if you need suggestions for good programs, ask me) Volunteer to drive people to their chemo appointments. Write your state representatives to re-instate funding for programs for cancer screening for low-income individuals - most states, like NY, have drastically slashed funding for such needed programs. Or, the next time your friend/sister/colleague whines about getting a mammogram or going to her gyno, tell her to shut up and go! Invite your friend to start an exercise program with you - we know that regular moderate exercise reduces many cancers, especially breast cancer.
For now, I'll get on my bike and ride - that's one thing that I can do.
- BY Julie Goodale | 09.06.2011
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