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    From the monthly archives: September 2011

    There is a progression through pink for those of us who get down and dirty into the real world of breast cancer. I liked pink ribbons in the beginning. They made me feel less alone.
    Now, the truth about breast cancer is in the front of my mind and I am annoyed by the large scale public complacency about a disease that we have been led to believe doesn’t kill people any more. I used to believe that. I had heard about mammograms saving lives and seen the pictures of triumphant women in pink hats all sweaty and beaming from their race for the cure. I was shocked when I realized that my survival was not a foregone conclusion.

    This month, I am acutely aware of sisters all over the internet who are dealing with metastatic disease. I am acutely aware that many, many women still have never heard of Inflammatory Breast Cancer.

    This last couple of weeks, I have been feverishly exploring freelance opportunities, because I want to free myself from the constraints of location and schedule. The added bonus that I love to write makes this strategy a no-brainer. I am going to a conference this month to learn more, to become a more effective advocate. The more work I can do on the internet, the more I can afford to take time to go where I can be of service. This is the desire of my heart, as I near the five year anniversary of my diagnosis.

    Another sister who first faced IBC in 2007 is struggling and it is deeply, deeply painful to me.

    One of my favorite people, Ginny Mason, said:

    “I’m on this side of the grass, so I figure I have a responsibility”. Ginny is a 20 year plus survivor, which gives us all hope! She is the mastermind and prime mover of the IBC Research Foundation.

    So, in keeping with my responsibility because I am on this side of the grass, I used my new found influence at Associated Content to publish an article on IBC. I became a Featured Contributor this last month and one of my first assignments was to write an article about any disease or condition I wanted. Of course I wrote about IBC. It made the front page of the “health” section of the Associated Content website and so far has been viewed over 5000 times in the last three days. That’s 5000 people who didn’t know, and now they do! You can view the article here. Please send it on to anyone you know who may not know about Inflammatory Breast Cancer!

    My personal agenda this month is to stir the pot as much as possible!

    As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.

    And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.

    I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.

    When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.

    What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?

    Do you know what really happens when a woman is diagnosed with breast cancer?

    Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.

    Breast Cancer kills, folks. It kills 150,000 people this year.

    My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.

    Why is this pinkwashing going on?

    Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.

    The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.

    The battle looks very much as it has for decades.

    We’ve made strides. But we have won skirmishes, not the battle.

    Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?

    What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?

    If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?

    So what can we do?

    1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.

    2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.

    3. Get behind Deadline 2020.

    4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.

    I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?

    I just added another post on this topic at Everyday Health. Let’s take back October!

    I wonder sometimes where I’d be today if I hadn’t faced the beast.

    Would I still be as stressed as I was? I don’t believe that everyone has a story like mine, and I do know that some cancers appear randomly, without any precipitating event. And, some of us were a breakdown ready to happen.

    I know that for myself, facing cancer was a major, major catalyst and as I result I changed everything. What was working, I did more of. What wasn’t, I got rid of. Things I loved that I hadn’t been doing became the things I did first.

    This weekend was about writing! I wrote an essay for a contest and sent it off. I had been procrastinating about it, even though I knew I would love to do it. I finally sat down to write and set my timer, telling myself that I would just scribble for 15 minutes and that would get me started. I ended up writing an essay that made me weep, one that I feel very good about. I don’t have any grand delusions that I will win (I’m sure there are 1000′s who sent an essay) but one way or another I’ll publish it! Alas, not now.

    The other deadline I had was a provisional assignment for Yahoo. I applied to be a Featured Contributor. Before I had cancer, I wouldn’t have even applied. I would have just assumed that I didn’t have the expertise or the clout to write about Alternative Medicine, which is the category I applied for.

    The new me said, Hey, what have I got to lose? If this is for me, not doing it is wasting time! I applied and forgot about it.

    Four days later I got a provisional assignment with a four day deadline. Ace the assignment and I’m in. I ace’d it. If you want to take a look, here it is:

    My article on herbs and chemotherapy

    I was delighted with what they asked me to do, right up my alley! I got paid to write. That just rocks.

    My freelance writing career has begun. I don’t know where it will go, and that’s half the fun. After I had cancer I began redesigning my life, making it up as I went along.

    Now I am a massage therapist/teacher/thespian/writer/artist/wife and mom. I really don’t know what to say when people ask,

    “so, what do you do Elizabeth?”

    Oh yeah, and blogger. Thanks for reading!

    The small bullet was the sinus infection. That’s a little bullet. The thing is, feeling rotten always makes me anxious. Sinus infections feel rotten, so I’m really glad the sinus rinses Sudafed and sleep did their job.

    Thinking of dodging bullets calls to mind the enormous one I dodged nearly five years ago. I am thrilled that people who are just now facing the same diagnosis I did are finding me here! I remember when I was sick with chemo, bald, discouraged, trying to keep my chin up and I would see someone who had been there and took the time to talk to me. It felt so great to see a woman healthy looking and strong, with a nice head of hair, on the other side! My diagnosis was tough, so if she told me that hers was too I felt even better. At that time I couldn’t imagine what my life would look like now, only that I would do whatever it took to stick around and find out.

    This weekend I am focused on a few assignments, so not much rest for the next few days. I have a writing deadline on Monday, and a new job focus at the hospital. We are starting an outpatient pain clinic for pediatric patients, and I am the primary therapist. We start from scratch on Monday, woo-hoo!

    To bed, and a busy few days coming..

     

    It’s started…

    My son is down for the count, miserable with a cold of the snuffly, coughing, headachy, flat variety.

    Last week I had a day when I just felt as if a truck had run over me, for no identifiable reason. I think I’ve decided that we both were exposed, he incubated it and got mightily sick, and I am fighting it in this weird no-woman’s land of immune wars. This happens to me sometimes. I’ll battle a bug for a week or two, not get really sick but not feel well, and eventually I win. Or not. It depends partly on luck, and if I’m lucky, my pre-emptive strikes will be effective.

    Many years ago, when I was teaching at the massage therapy school, one of my colleagues commented at the end of the teaching day that she was canceling her clients and going to bed. At the first sign of a cold or flu, this is what she did. No delays, no bombardment with supplements and home remedies, just STOP amd REST.

    “When I feel sick I go to bed”, said she. She reported that it seldom, if ever took more than a day. Many times she averted the bug completely.

    I am not that adept. Usually the first sign of a bug (feeling very tired) is greeted by me with resistance. It is not until later, when the cold is closing in, that I remember that feeling and that I should have stopped and gone to bed! Right now I am paying attention. My boy is hacking away, my muscles ache but I can still breathe, so I am going to bed and feeling grateful that tomorrow is a low pressure day. Today I did a whole lotta nothing so I’m hoping tomorrow I will feel much better.

    Of course I still have my other tricks too. Emergen-C, Zicam, honey and lemon, etc., all are good and I will dose with all of them, but sleep trumps them all!

    Off to bed, hoping for the best.

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    I am delighted, thrilled, excited, all of the above, surprised, totally tickled.

    I took an assignment on Associated Content because I thought the story was interesting, and it was for a good cause. Yahoo was asking people to share stories of where we were on September 11th, ten years ago. For every contribution received, a donation would be made to the September 11th memorial fund. It was a no-brainer.

    I was not in the U.S. when it happened, and I will never forget what it was like to be on foreign soil, away from my family, when the my homeland was attacked. I wrote my story for Yahoo, and you can see it here!

    I love being a writer, I love writing, and I love it that the folks at Yahoo thought it was a good story. My takeaway from this is that doing what I love always works, and I never regret following the path that makes me happy. Making a contribution feels good!

     

    Have you ever done a “cancer prevention” search?

    Just trying to keep up with the stuff that shows up in the mainstream media is overwhelming. I have forgotten more than I have retained, although I manage a few key points (going for a walk in a minute).

    I also think that I should not be the only one who has to keep track of it. One take-away that I got from the last conference I attended was that businesses need to be more accountable for the substances that go into our environment, before they are allowed to do it! This was my topic at Everyday Health this week.

    I am annoyed that my cancer prevention efforts have so much to do with preventing toxic junk from getting to me. Air and water filters should not be necessary, neither should spending extra money on groceries that are not toxic. There is so much information out there that I give up and just let it all run through my sieve brain and hope for the best.

    Now, for some exercise which I know will help me!

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