Wednesday, May 18, 2011

In Too Deep

Normally around now, a week or so since my last post, I'd be in a panic.  But, this time seems different.  I'm not getting that sense of urgency.  Laying low feels kind of right.

Without meaning to, but simply since I can't help it, I've been giving breast cancer a lot of thought lately.  It seems I didn't know that much when I first began blogging.  I didn't know squat.

My goal was to share similar experiences with other bloggers.  I had no way of knowing I'd learn from them.  I couldn't have predicted an online community would infiltrate my daily life and I had no idea how much it would matter.

Before cancer I thought I knew the differences between stages 1 - 4.  Although, I couldn't tell you the parameters of each.

I had never heard of Triple Negative, Estrogen Positive, Her2 neu or Inflammatory breast cancers.

I didn't understand what hormone inhibitors were or why it was an option for some breast cancers, but not others.

I thought all breast cancer required chemotherapy.

Oncotype DX???

I thought all fundraising organizations worked toward a cure.

I thought little about metastatic breast cancer until I learned its research is shamefully underfunded.

I didn't know that 110 women die everyday from breast cancer, approximately a whopping 7 less than twenty years ago...  Many of these women, initially diagnosed as Stage 1.

Even after all that pink.

I didn't know three bloggers I admire would die within a very short time of each other.

Maybe, if I wasn't so invested in this topic... If I didn't follow the bloggers everyday...

I could learn of their deaths, one after another, without taking hits to my very core.  Breaking it, bit by bit.

Women like me, around my age.  Wives, mothers, sisters, daughters.  Women, at one point or another who thought they had it beat.

If I wasn't in so deep...

Then maybe I'd believe those who tell me I'm lucky.  Believe in the words, "early and small."  Instead of silently nodding, knowing-- It may not matter.

I know now breast cancer isn't about early or small.  Its life may be dependent on things we can't cut out, poison or radiate away.

If I back off... scary facts may not find me so often.  My days might be idyllic ones raising two young boys, bursting with sunny moments, finding great pleasure in the small things and wide open dreams of a happily ever after.  An innocent vision of life, as children might see it, before they know better.

It's been a lot to learn and overwhelming at times. Would it matter...If I stepped away from cyberspace for a while?  Would things be easier if I weren't so engrossed in it?

Breast cancer would still exist.  And women would still die.  Only I'd know less of it.  My days and mood would be lighter, unburdened by cancer's black cloud.

Would I care less?  No.  I know it's out there, lurking, but I also know the women in my online community are there, dedicated to seeing its eradication, while providing unwavering support for one another.

Perhaps that's why my self-imposed computer exile felt right, even necessary to fully embrace a couple of special birthdays, an adoption day anniversary, some tee-ball, a class trip to the library and some all around quality time.

Time away from breast cancer to busy myself with happier aspects of life.  The same stuff those three bloggers found so important.  The very things that inspire and drive me to dive back in, learn what else I can do to help rid our lives of this insidious disease and no longer have a need for this community.

Unless, of course, we just want to tell stories and share some pie.


The three lovely bloggers I mention are Sarah of Spruce HillSarah, The Carcinista and Daria, Living with Cancer.


18 comments:

  1. Great post Stacey. It is all so overwhelming and I often find myself struggling for balance. Good for you for knowing when to step away. Keep doing that. :) We ebb and flow together.

    Katie

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  2. Sorry to learn about your friends. I love pie. Good one Stace.

    Mark

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  3. This is very powerful - It shows what it's like for you - and I'm sorry that it is this way.

    So yes, sniffled while standing in the aisle waiting to de-plane.

    Sorry we missed pie - but it was a great wedding ...

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  4. Thanks, Katie. Good to know I'm not the only one looking for balance.

    Mark, thanks. Let's have some pie.

    Hi Dave, stop traveling so much. Remember Tea & Pie, don't pass me by?

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  5. Stacey,

    You bring up so many points, about cancer,about recovery and health that are essential. What I want to do for now is thank you, for stepping back. There is a time and place for advocacy. But in my mind's eye the first thing is health, family, then community. That's how it works. The advent of social media and 24-hr around the clock "on" changes our concept of accountability. While we used to see our fellow survivors monthly - at a meeting -- or weekly - now you can see them every five minutes at any time of day. That's a huge social difference in the course of a few short years.

    And the good thing -- you can step back; step back in as it feels comfortable. You'll know what you need to know when you need to know it. I think you're doing a terrific job. This was a lovely post -- thank you.

    Hugs,
    Jody

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  6. Beautifully said, as always. Taking small everyday moments--watching little boys play in the spring sunshine, pie, and especially birthdays--for granted is a luxury and privilege reserved for those fortunate enough never to have been touched by breast cancer. For you, for our family, those simple moments are milestones that deserve to be savored with gratitude--even those endless tee-ball games. Good decision to step back sometimes! The blog will always be there, but tee-ball will not, believe me...

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  7. I can really relate to this post. I think it's important that we can spend time away - for me it's gardening and being in nature - and know that this is not a conversation that demands us all the time. Bring your voice when it feels right, we're listening.

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  8. Because we, as bloggers, live on Social Media and read one another's posts, we may be more informed than many who've been diagnosed with breast cancer. We know all too well the possibilities of one stray cell and the damage it can do.

    I talk with newly diagnosed women every week and it's obvious they don't know Stage I can result in recurrence. I sometimes feel sad and a little guilty that I know so much, that I don't want to burst their "I'm going to beat this" enthusiasm.

    Every breast cancer survivor struggles for balance and the ability to pull back and just live our lives. Since my husband died, I'm not micromanaging every morsel that goes in my mouth, how much alcohol I drink, how much exercise I get. It's almost as though he was my reason for doing everything right, but with time, I'm sure I will return to my Type A, deeply ingrained survivor mentality.

    Brenda

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  9. Stacey,

    I will read your posts whenever you decide to write them. It's hard to find balance sometimes and the bonds we create run so deep it's hard to step back and stay away for long, at least that's how it is for me. Like you, I am amazed at all I have learned about breast cancer (and a lot of other things) since starting blogging. That's another reason I like it so much, not to mention there is so much "work" to be done.

    We all need to step in and out as needed and that's ok!

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  10. Great post Stacey! I too can get so easily overwhelmed and have to take breaks. But it is nice to know there is a group of people out there who understand and support and are there when I am ready to dive back in. They are there for you too!
    Deb

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  11. Jody, you bring up such a good point about social media being every five minutes. Nothing else is so available. Which is the problem sometimes, but you're right about stepping in and out. Thank you.

    Thanks, Wen. I know you get it.

    Hi Sarah, I remember you writing about gardening as your way of getting away from all the crap. I'm glad you have that and I'm glad I can check in with you every now and then.

    Brenda, thanks for coming by and sharing your thoughts. I think people who don't know better need to believe Stage 1 is curable. It's just too hard to accept otherwise. I'm in awe of the brilliant way you've been coping so far. I can't wait to see how you do when your type A personality returns.

    Hi Nancy, it's tough isn't it? It's nice to step away, but like you I'm always wondering how everyone is doing, what they're up to and I'm drawn back in. Which is fine! I love this online world, in addition to the support found here, it's true. Much work left to be done.

    Thanks, Deb! It is nice knowing people are out there. That's why I love it and always return.

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  12. All of us need to step back at times. I haven't done much this week either other than enjoy myself in my off-chemo week. And in fact I'm taking a vacation very soon that will be completely unplugged and I can't wait. Stepping back doesn't mean we care any less. Sometimes we just need to breathe the fresh air, because as they say life IS for living. We hear you Sherpa Stacey xxxx

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  13. Great points, Stacey. I'm feeling rather overwhelmed these days myself. Activism, and life, can take over sometimes in such a way that we lose ourselves. It's okay to step back, regroup, come back. Others will pick up where you left off and welcome you back when you return. And as for all of the complexity of breast cancer. You wouldn't know it by the sound bites, would you? This just adds to the mess.

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  14. Dear Stacey, I completely understand your self-imposed exile from the computer. Sometimes we need to get away from the online overload. But then again, I love to tell and read stories, and share some of that pie.

    We know way more than we ought to know about breast cancer at our stage in life. But we make a great community, and I just love the support that fellow bloggers offer. Keep up the great work!

    XOXOXO,
    Jan

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  15. Stacey,

    I was so moved by your beautifully poignant post. Trust me, I often feel the same way. Sometimes it's overwhelming, isn't it, when we become involved in others' lives and, when the worst happens, it does shake our very souls.

    I thrive on this community because it makes me feel less alone. However, I also find it challenging to balance being a mother and enjoy the wonderful things my daughter has to offer.

    We all deal with the fears of the unknown. Maybe I'm in denial, but for now, it feels right not to think too much about what the future holds.

    I respect your self-imposed exile. You have to do what's best for you and your family.

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  16. Stacey, beautiful post, as always your writing is amazing.
    I take exiles, breaks, etc., often. It's my way of coping; as is laughter and yes, sometimes denial. Your blog will always be waiting in the background, but life won't.

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  17. Hi Stacey! Great to stumble on your blog and read your story! Wish you the best of luck in everything! Have you heard of FAMEDS? Freedom of Access to Medicines (FAMEDS) is the non-profit org fighting the FDA in order to continue to allow the drug Avastin to be available to the 17,500 women with metastatic breast cancer that the drug is working to improve their quality of life. Please sign and share the urgent petition: http://fameds.org/petition.php

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  18. Anna, Gayle, Jan, Beth, Lisa and FAMEDS, thank you all for the kind words. I know you understand. That's what I like about you and your blogs. The reason I keep coming back to read yours and see what's up. You get it and you're exactly who I was looking for when I started blogging. So wish I'd known of you all when I was first diagnosed, but thankful for finding you. I'm not going anywhere.

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