• Home
  • 2011 October
    From the monthly archives: October 2011

    This last weekend was amazing, not just for what I learned but who I learned it with. There is really so much to be done to change public policy and perception about breast cancer!
    Like so many newly diagnosed, when I first learned I had breast cancer I thought that all I had to do was take a deep breath, face my fear and get on with it. I had been affected by awareness blitz of the last decade that has inadvertently convinced a generation of women that mammograms and education had gotten the upper hand over breast cancer. To be told at diagnosis that my disease was serious (and read between the lines that it could very well kill me) was not what I expected.
    This weekend I learned why breast cancer is such a ferocious, still underestimated foe. I learned how breast cancer outsmarts treatment, and what is being done to outsmart breast cancer. I am heartened by how much we have learned, and frustrated by how far we still have to go.
    The biggest takeaway of all is that the divisions that exist between breast cancer survivors and advocates really don’t need to be there and are counterproductive. Breast cancer is a sneaky beast. It puts out little migrating cells very early in the process, which means even early stages of disease are at risk for recurrence. In my mind, it doesn’t matter if we are NED, metastatic, or haven been treated for “just” DCIS. It’s all breast cancer, and regardless of the diagnosis we join the prevalence statistics. That’s right. In evaluating the prevalence of disease in the U.S., I count as someone with breast cancer, even though at the moment I am NED. “Cure” is actually a misnomer when it comes to us. No one knows if we’re really cured once we’ve been diagnosed.
    So what about Deadline 2020? What does “cure” mean?
    It means that:

    1. We stop being diagnosed, as in we prevent it from ever happening in the first place.
    2. Women whose cancer has metastasized have weapons in the arsenal that will not only prolong their lives, but eradicate their disease for good and go on to live normal lives.

    We are a long, long way from these. I believe that if we focus, we can apply this focus in the same way other major milestones have been achieved, we will achieve this one, but not without a lot of people working together.

    My buddy Donna (what a thrill it was to finally meet my cyberbuddy!) and I were noticing that it was an extraordinary sort of woman who attends these things, who wants to be an advocate. Are all people who get this stinky disease amazing people? Is the disease that smart?

    No. It is that some of us respond by wanting to do something about it. The rabble rousers, action takers, loudmouths, women who have had enough…it’s the “uppity” ones who come to join the fight for the deadline. We are the NED, the Metastatic, the DCIS, the supporters, the educators, the researchers, all represented in that micro community this weekend. We can do it if we work together.

    Contrary to what we may think divides us, we are all in the same boat. We have all been affected by breast cancer and we’ve all had enough.

    The day after tomorrow I will get on board a train and go to Seattle for another advocacy training. While the pink ribbon campaign plods along (the month is getting old, after all) and the hoopla continues, women put one foot in front of the other and plod forward, in advocacy or in treatment.

    The blogosphere has been busy lately. Fallen sisters, survivors speaking out against pinkwashing, daily breast cancer facts, metastatic breast cancer awareness day. Today two amazing warrior women are telling it like it is.

    Susan Nibur is a scientist, a mom, an advocate, an activist, and a simply wonderful human being. While she struggles with metastatic cancer, she has taken the time and energy to write a post about the realities of her life with metastatic IBC. Her in-depth, honest, complete account is a labor of love. Please read her story if you want to get past the pretty pink and know what we’re really up against.

    Likewise my other friend “down under”, who today wrote a post about facing death. This woman continues her commitment to getting her university degree while coping with treatment side effects, and somehow having the presence to pursue her studies while keeping a “my funeral” file. Read her story and get a good look at real strength.

    These women, and other amazing women like them, occupy my cyberworld and lift me when I want to whine. Today I am refreshed from my backpacking trip and have immediately managed to overcommit myself. I have writing deadlines, packing, momming, and a bizillion other concerns before I leave for Seattle on Wednesday, and I could easily just spin out on adrenaline. I don’t want to do that. I want to be mindful, aware every day of how precious each one I have is. I am so, so lucky that I don’t have to live my life under the burden of toxic treatment to keep me alive. I am so fortunate to have the stamina to overcommit myself (sometimes) and get away with it.

    What I can do now is go learn some more, and put that knowledge to good use in every way I can. I also continue to write what I know for whoever needs it. I just published another article for getting through chemotherapy, this one specific to
    managing the effects of taxol
    . My IBC article has made it’s way past Associated Content into Yahoo News, and that makes me happy.

    Susan and J, your stories are where my commitment comes from.

    This last weekend, we had beautiful weather until it was time to leave. The sound of rainfall on our tents got us up and moving. We packed in a fine mist, and then as we prepared to leave we were gifted with the most beautiful rainbow. I have it on my desktop now to remind me to keep on keeping on, and believe that breast cancer can end by 2020.

    hope

    our parting gift

    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…

    Content Protected Using Blog Protector Plugin By: Make Money.