• Home
  • Pinktober has been rolling along very quickly, and I have been finding myself very annoyed at the whole pink thing. That’s not because there isn’t anything good about it. There is some real fundraising and activism happening mixed in with the Pinkwashing. All of that stuff is just heating up the conversations, which is good. I have been writing, a lot. I wrote an article for Associated Content on Making Your Support Count, and the editors changed the title but they put it on the front page of Health, so that was good. I’ve also distracted myself with some political writing, which as my daughter would say, is hecka fun. My article on Mitt Romney stirred the pot mightily and even upset some Mormons. Not that upsetting people is my goal, but stirring the pot definitely is!

    Why is pink month so hard? Simply because I can’t escape breast cancer. It’s everywhere. Some of the pink overwhelm is really irritating, especially the pink boxes of stuff that indicate that donations are happening without any indication of how much or to whom. That stuff just makes me want to lose it. I didn’t post at Everyday Health for a couple of weeks, ostensibly due to the stomach flu making its rounds, but I really am pissed off about pink month so my last post says it all.

    We also lost four on the IBC list this week. Four. Damn. That just sucks, really. So hard for women still scrapping to stay alive to see our sisters fall.

    So, where have I been? A bit scattered, a bit annoyed, writing some stuff, hating the sight of pink, glad that I’m still here, looking forward to when pink is no longer in my face quite so much. Ready for no bad news on the IBC list. Thinking of my friend Susan at Toddler Planet who is right smack in it, and my heart screams, NOT FAIR. She’s dealing with it much better than I am.

    This evening my son and I are off to the Dardanelle, known previously here as Camp Medicine Wheel. I can’t wait. Maybe when I get back I’ll feel more settled. I still have lots of real stories of real women to post. Right now I’m a little too flummoxed about the ones we’ve lost. Look for a happier, more grounded advocate when I get back.

    Time to get packing…

    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.

    Tagged with:
     

    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!

    Tagged with:
     

    Ah, the work of establishing an identity, coupled with raging hormones…my children are working so hard!

    Now, what’s my excuse?

    Actually, I can’t complain because at nearly 50 I’m pretty sure what I want to be when I grow up but I’ll never grow up, ever, so I’m just going to continue having fun. As long as I do this daily I will keep moving towards what I want to be when I grow up. I was reflecting on this today as I thought about this website, which is nearly a year old, born right around my birthday last year. My original vision was to create a site that would help people, but I didn’t know what that looked like. I floundered around a lot, trying to figure out what my site wanted to be when it grew up. I noodled around the internet into the wee hours, and slowly learned how to manage my own little queendom as I waded through spam and created and trashed numerous pages. Sometimes I didn’t blog at all because I didn’t know what I was supposed to be blogging about, forgetting that I blog because it makes me happy. Today I was berating myself because the site is, in my mind, a poorly organized ramble of disparate resources, until I logged on and found a comment that told me that this weekend someone found this site and was encouraged.

    Amid the sturm and drang (storm and stress, a la Beethoven) I am coming to some clarity about what I’m doing here, and the results should start taking shape in the next few weeks.

    And my teen, my tween and I?

    My tween had a call back for the Fall musical today, and was a handful and a half. My friend called her a wild cat. She’s 12, and everything is just so monumentally imperative and urgent! I take a deep breath and try to stay on for the ride. We worked together on her audition pieces and had dinner together before her audition. My husband auditioned as well, and they just got home a little while ago, wound up probably until the wee hours tonight.

    My teenager is right on track, already on top of all of his classes except algebra, because he bombed a quiz due to girl distraction. Here it comes…

    As for me, I am suffering from too much good stuff to choose from. Much as I wanted to be in this next musical, I did not audition because I know I would be overstretched. The children’s hospital where I work is starting an outpatient pain clinic, and I am the primary therapist. I love the hospital work, I just love it! I worked on Saturday with inpatients and came home feeling blessed.

    Soon the drama club will be resuming, and there is the possibility of adding another school and another club.

    I have an advocacy workshop coming up in October and I hope to go backpacking again once more before the season is completely kaput. So alas, eight weeks of intense rehearsals would be too much, and I am jealous all the same!

    I’m writing for fun, and trying to get better at it.

    This site, however, is my baby. It is now an unruly teenager and needs to be directed!

    What I want to do here is to reorganize a little so that anyone who comes here can find resources. I want to sleuth out more great links, as well as write some good posts about ones that I already know about.

    More inspiring stories, more humor, more simple how-to’s like how to keep your fingers from going numb when you’re on Taxol for example, more just plain ol’ uplift and leg up. More tools for more varieties of hard knocks!

    As for posts, I am going to experiment and give myself permission to write about whatever I want, as I did when I went through treatment. My life was an open book, and somehow that was so liberating! A teacher of mine once told me, “the personal is the most general”, and scribbling is as good for my health as exercise and vitamin D.

    Until soon…

    Tagged with:
     

    My Mom is a writer. She just published her third book of poetry. Go Mom!

    My sister is a writer. She published a short story once, but unless she publishes, she doesn’t show us anything!

    I discovered that I was a writer on my Caringbridge blog. I guess that’s another unexpected gift that cancer gave me. For a long time, I thought that writing was Mom and Emily’s gig, not mine. I had a long chat with my mom about it. She told me that even my brother Paul has published an editorial in the local paper! Who knew? I already knew he is a fine musician. I guess I come from a talented family!

    So, I’m embracing this new calling of mine. I have been blogging for awhile over at Everyday Health, and recently I got an e-mail from my contact there that I would be reporting directly to the editors, because (drum roll….) they like my writing!

    I’ve sorta been quiet about it. It’s my own private thing, or has been. When I started my blog at Caringbridge, I did it to help me get through the toughest time of my life. It was for me. When I started getting comments from people I had never met, it felt wonderful to know that what was so satisfying for me to write had value for someone else. Still, I would not call myself a writer.

    Now, I am summoning my courage to write “on purpose”, and try to get good at it.

    Will you tell me what you think? Give me some feedback?

    I just published an article on Associated Content. It was an assignment. I thought it would be fun, so I took it and did my best. Will you follow the link and take a look? If you like it, will you become a fan? If you like it a lot, will you tell your friends?

    In the meantime I will (as Jo said, in “Little Women”, one of my favorite books of all time) up and take another.

    Onward!

    Tagged with:
     
    Content Protected Using Blog Protector Plugin By: Make Money.