Awareness Fatigue

Tell you what, dear readers, the self-proclaimed Queen of Snark is tired of this breast cancer shit.

As of last Tuesday, July 24th, it’s been four years since I heard the words, “I’m sorry, Kathi. Your biopsy is positive.” About a week ago, I started writing a philosophical, seeing-the-glass-half-full sort of post, in an attempt to ease gently into how I’m really feeling lately. I don’t know why I even bothered. I got up this morning, came to my senses, and said, “Screw the ‘gently’ crap.”

There still is a glass-half-full part, sort of. Finally, after “only” four years, I am starting to feel sort of normal sometimes. So now, when I look around at the laundry, the dishes, the lawn I have to mow, the pile of bills I have to pay, the continuing ed I have to do mostly on my own time in order to keep my physical therapy license so I can keep my job and my health insurance so I can pay the bills and get my mammogram next month, I don’t feel instantly overwhelmed. Now, I’m beginning to feel that perhaps I am somewhat equal to the task of living what used to be my ordinary, daily life.

What I’m not sure I feel equal to is keeping up my usual snark-for-the-cause. It’s not so much that I can’t cop the requisite attitude. It’s more that I can’t stomach the fact that it’s still needed. I’m not sure I can stand to read yet another misleading, hyped-up headline about a flawed research study. A recent example, Breast cancer metastasis to bone driven by stress, researchers report, was posted by a few friends on Facebook, with comments indicating that the headline itself was taken seriously enough to create more stress. Meanwhile, the report’s second paragraph revealed that the study was conducted not on actual women with mets, but on mice.

Nor can I endure another press release about yet another cutesy, pinkocentric fundraiser or social media meme disguising itself as awareness. Nor am I interested in “catching up” with Nancy Brinker in Europe as she admits over the phone to Oncology Times the degree to which Komen still doesn’t get it. In fact, I found it a tad irksome that OT even wasted space to report on catching up with NB. Who gives a rodent’s derriere? Not I.

I’m tired of hearing yet another woman report that her breast surgeon, her radiation oncologist and her medical oncologist all confess to being ‘mystified’ by her continuing fatigue. Doesn’t mystify me. What mystifies me is that any doctor involved with cancer patients could still be mystified by the long and late-term side effects of cancer’s current scorched-earth treatment protocols. They do still learn to read in med school, don’t they?

And I’m really tired of people dying. The list just gets longer all the time. I’ll tell you the god’s-honest truth: I really haven’t been the same since Rachel died. I think part of my heart is just permanently shredded. Makes me want to revive the Victorian custom of wearing at least a black armband for at least a year. So I don’t have to explain myself again. ‘Course, that would mean we’d all be wearing black armbands all the time, wouldn’t it?

And finally, I’m tired of repeating myself. I’ve been noticing for some time now how often the things I’ve been blogging about, since I started this blog on New Year’s Day, 2009, keep coming up again and again. I’m usually heartened when some articulate, righteous blogger or activist or journalist writes passionately about something I’ve written about myself. But then I think, hell, I’ve already said all this. Several times. Ad infinitum. Ad nauseam.

I know it’s the nature of news media, in this age of instant online access, that the same stuff gets reported a gazillion times over, for good or ill, not always well, not always accurately or insightfully. And that perhaps readers of online media seem to be at risk of becoming unable to think for themselves, to perform some genuine research about a subject, or to absorb anything that requires more than thirty seconds’ worth of their attention. But I’m sick of that, too. And at the end of the day, has the breast cancer conversation really changed? Enough?

When do we just ‘get it’ once and for all?

So, here’s the thing. I’m taking a break. No idea how long a break it will be. But I’m going to just live my life for a while — you know, that life I used to have before cancer. That life that has, in very large part, been on hold for four years.

In the meantime, my blog will still be here. And if you have a yen for a nice, astringent dose of amazonian snarkitude, here’s a page that lists all my posts categorized under Fighting the Pink Peril. Counting this one, there are thirty-nine of them. In fact, I’ve given the page its own tab at the top of the blog — ‘Pink Peril’ — for easy access. Because evidently, the fight’s not done. Yet. And to my fellow grumblers, my sisters in snark, my compatriot bitchbloggers and righteous ranters, carry on. I’m still with you in spirit. Always.


pixelstats trackingpixel
Share
This entry was written by Kathi, posted on Saturday, July 28, 2012 at 05:07 pm, filed under Fatigue, Fighting the Pink Peril, Survivorship and tagged , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

49 Responses to “Awareness Fatigue”

  1. Hey Girlfriend,
    I appreciate all your comments on my CarePage.
    I am still reeling from Elaine’s stage 4 struggle. Makes my stage 2 feel like a walk in the park.
    Love you,
    Kathleen

  2. Take care of you. You have given more than most will ever have to. And here’s to naps.

  3. I feel ya my friend…… I too have been more than frustrated at reading a lot of the same, over and over in the forums iread and write in. I often feel like I am only repeating myself with a few words of change. And not the good kind of change. Hang in there….. take a well deserved break and live this one life we have…. It’s the best thing we can do for ourselves. Always lots of love and big hugs when you need them. Stay Strong, Cindy.

  4. Kathi,

    I hear you. I understand. Still, I hope you’re break isn’t too long. That’s my selfish side speaking though. I look forward to your snarky posts full of wisdom and wit. I don’t like thinking they will be less frequent, even for a short spell and I do hope it’s only for a short spell! We need you out here as we wade through this breast cancer shit, as you so aptly called it.

    Having said that, take some time for yourself and just live your life. Jump back in when you’re ready, my friend. We’ll be here. Many hugs.

  5. Kathleen, it’s so good to see a comment from you here. I’m still reeling from your being diagnosed in the first place. Not the club I ever wanted to welcome you to, my friend. Hugs.

  6. I do so hear you. I hope you’ll have a good rest, and get your snark rejuvenated. I’ll read anything you write, even if it’s about shoes or butterflies. Hmmm… Do we have snark plugs, like spark plugs. Well, ok, that’s just silly. Breast cancer sucks, and sometimes you need to push it away and breathe.

    Enjoy the rain, rest, revive. <3
    E.

  7. Dear Kathi – I SO understand the FATIGUE and the Fatigue With All The Cancer Crap.

    I can only admire your brilliant writing and the tenacity, wit and depth with which you do it. I find myself taking many breaks, tweeting intensely for phases and then dropping off and going underground, sometimes for weeks at a time, because it’s just too much to sustain all the time. And I barely even ever do long-form blogging which you do so well.

    I am happy I caught your tweet to this post. I will miss you, but it’s a good thing because I know how it feels and I know you need the space. It also helps to know I am not alone in these feelings–I often feel guilty when I go on these breaks, and your post is an inspiration on announcing it elegantly.

    You have a way of nailing things so aptly. And yes, sometimes ya gotta tell the glass-half-full to go jump in the effing lake for a while, because otherwise it’s pure delusion. A glass half full is ALSO a glass half empty.

    I hope your break allows the glass to fill itself up, gently, at its own pace, to the best of its ability.

    In the meantime, I and our–as you say so well- “fellow grumblers, my sisters in snark, my compatriot bitchbloggers and righteous ranters,” are here, and here for YOU!

    I hope to meet you in person one day.

    Much love,
    Liza

  8. Hey, Kathi, I understand your need for a break from all the awareness bull. You’ve certainly made your mark in bringing these pink issues to the forefronts of our consciousness. I suffer myriad side effects from cancer treatment from 16 and 9 years ago. No one warned me of any of these long-term, semi-disabling, possibly permanent conditions that would disqualify me from getting regular health insurance and long-term care insurance. Had I known, I might have balked at certain chemos because of ensuing quality of life. Who knows? Pink advocates don’t care. Fellow bloggesses will continue the conversation, the fight. I look forward to your new posts and what you have to offer to us as a talented writer, artist, and friend. xx

  9. Oh wow, Kathi. I can totally see where you are coming from and 110% support you.

    I think the line that got me the most was about reviving the custom of the black arm bands. Yes, we would always and forever be wearing them, those of us who have spent serious time in CancerLand. That is the thing that will always make me feel different. Even if I get back to the land of the living, a part of me will forever be in the land of the grieving.

    Much love and wishes for renewal and rest.

  10. Dear Kathi,
    It’s been a long time, you were unknowingly one of the lights, leading me through the darkness of this crappy journey.
    Your wisdom, your clear writing and snarky attitude, were eye openers and life changers, to my approach towards breast cancer fighting and surviving.

    This week, I’ve been talking a lot, about the distance between being “cured” to being a survivor. I think the most significant difference, is that for us, survivors, there’s no Tired, but there’s that ever lasting Fatigue…
    Rest for as much as you need. We’ll miss you, but that is our’s.

    You take good care of yourself, and while you do that, remember, even if you will never write another word, (I doubt and I hope not…), you, and some others (Hi Nancy :)), have already made a real huge change, in the way Breast Cancer Culture is being dealt.
    Thank you for everything that you have personally made for me, and all of us. Take a break, you’ve certainly earned it
    :)
    Efrat

  11. Kathi,

    I’ve only been blogging for a year and bitching for less than that (I didn’t KNOW about the pinkpocricy of it all until I met the rest of this posse). I hear ya, I feel Ya…. I’m weary. Maybe it’s this intense summer heat….. Maybe we just need to take a break……

    Talk soon……

    Love ya,
    AnneMarie

    PS- My dx date was six years ago…. on 7/27….. And, I forgot about it until 7PM that night…. not in the days leading up to it… or anything else for that matter….THAT was an achievement!

    xoxo

  12. Kathi, I understand about taking a break from blogging since I closed down my munchkins blog. While I’ve not had an official farewell party I know it’s a done deal in my heart. (Our topics could not be more different, so when I say I understand … “you know what I mean”) The five month break I took over the fall; I should have just closed it for good. Now it is.

    It’s hard. When you are literally tied at the hip, or breast, to a subject, something that means the difference between life and death … how can that not be what you speak about every day? Yet, it makes the writer tired. I got tired of waving my poms-poms after the Big D, tired of talking about starting over, how others could start over, too. Tired of looking for a definitive causation and the ultimate answer to spare everyone else the pain. I’d rather have been writing about my cabin in the mountains and my fleet of mountain men (the mountain version of the pool boy).

    What I want to say, I get it ,and taking a break is a necessity to refill the glass, recoup, and start over fresh. I try to remind myself of that each morning. That I’m not defined by yesterday, today is a fresh, clean slate and it’s all mine. Wash. Rinse. Repeat.

    And occasionally pull out the bottle of wine and have a glass, or two, with the blue room walls and my imaginary friend. I’m okay. Really! (LOL)

    In short, take care, and I’ll be thinking about you! =)

  13. Kathi, guess what? You’re not alone on this front. I’ve been feeling the same way as you can tell from the total lack of activity on my blog the last couple of months, or in all honesty, this whole year. Like you, I feel as if I’ve said all I wanted to say and maybe the blogosphere belongs to others that need it now more than I do. I’m trying to figure it out. Enjoy your life without thinking everything relates to cancer or you have some responsibility to end all the cancer craziness first hand. You don’t, but you do have a responsibilty to live your life as happily as you can. Rachel would tell you that. Hugs to you, my friend. I’m always a tweet or text away. xoxo

  14. KAK~
    Your dedication to inform us all through this BLOG has been amazing. Of course I will miss it but I am thinking a ‘break’ might be just what the Dr. ordered. You’ve given so much to us. Not it’s time to give to yourself. I love you Sistah. I wear my Accidental Amazon tee with pride.
    Sharon50

  15. Oh course you know I meant ‘NOW it’s time’. Sheesh what a slip.

  16. Kathi, for selfish reasons, I hope you write again, but I completely understand the need to move on, and take a break.

    Just heard from a fellow healthcare professional, who is suffering from renal failure due to her chemo, and her oncologist is reluctant to report it to the FDA….

    And I think I recognized the woman whose highly trained team were mystified by her protracted fatigue after treatment. Like she’s unique?? Like the IOM report Cancer Survivorship: Lost in Transition wasn’t written over 6 years ago?

    Enjoy your break, and keep in touch.

  17. The politics of the cancer bubble dear Kathi… Some times we have to take a step back to recharge. xxx

  18. Ah Kathi, yours was one of the first blogs that leapt out at me (‘blasted’ might be a better word – and that is absolutely meant as a compliment!) when I started looking around cyberspace for women writing about their experiences with breast cancer at the start of this year. Though I still feel very new to this corner of the internet, I have already drawn great pleasure, interest, encouragement and sense of camaraderie from your writing. I completely get your need for a break, and I hope it brings all the refreshment you are looking for. I also hope that if you ever feel like writing about topics other than breast cancer you put it out there to your adoring fans – I’d love to read your thoughts on absolutely any topic!

    Now go – live that life. We’re waving and cheering you on.

  19. Kathi–I’m wishing you a restful and well-deserved break from the madness of it all. Enjoy!!!

    P.

  20. Kathi,

    I totally get where you are coming from. I’m tired of all that you are tired of, too. Take the break you need; you deserve it. Cancer is all-encompassing, isn’t it? It wears us down — whether it’s the disease, the aftereffects, societal stupidity and what-not.

    And please know that we bloggers can write about other things, too. Sometimes a little levity is needed. I’m kind of at that point myself.

  21. Kathi, as a long time follower and as much as I’ll miss your “voice”, I’m so glad for you that you’re taking some time from all this crap. I did that myself this summer. Not by choice but by chance. It’s been just over 3 years since my battle began and I’ve only just recently got to the point where I don’t feel like I’m struggling 24/7 with side effect issues. It’s been so nice not to blog, not to follow the research, not to look for answers to what I’ve been feeling and to finally just LIVE again. It’s been so good for my mental and emotional health to not think about breast cancer every day and that’s only happening because I have finally started to feel just a little bit “normal” and that there might be some hope of getting a sense of my pre-cancerous identity back.

    Enjoy your break. I hope you find it energizing and happy.

  22. Kathi,

    I understand your need for a break. I’ve been blogging about my experience of breast cancer, including critiquing the pink shit for a couple of years. It was so amazing when I chanced upon your blog two years ago. I suddenly didn’t feel so alone. Even though I live in Australia so much of what you wrote about related to my experience. It takes real courage to take on the vested interests of the ‘pink breast cancer industry’ and you have done this so effectively with intelligence, research and humour. You showed such incredible commitment to providing such well researched information in an accessible way.

    I hope you will continue to make your fantastic art/photography available through your blog in the future.

    Take care rest and be well. And know you have had a big impact on women all around the world.

    Love

    Kay all the way from Australia!

  23. Thanks, Cynthia. Lots of naps in my future. ;)

  24. Big hugs back, Cin.

  25. Nancy, I’m glad you’re still there in the blogosphere, saying what needs to be said. xoxo

  26. Thank you for your kind, supportive words, Liza. It does take a lot of energy to sustain the consciousness and perspective that so many of us try to have. We all need to recharge sometimes. Much love to you to, hopefully in person some day.

  27. Thanks, dear Jan. Cancer certainly leaves its mark on us forever, doesn’t it? I’m not amazed that we get worn out by its aftermath. I’m more amazed that we all manage as well as we do despite it. Hugs to you.

  28. Thanks, CB. Yes, when I think of how many people I know who’ve had cancer, and then how many I know who have died, I realize that this is one of the things that marks all of us who belong to the cancer club. Sobering, isn’t it? I wish us both luck with scratching our way toward a bit more ‘normal.’

  29. Efrat, I’m so touched by your comments. That’s what has helped me hang in there for so long, hearing from readers that I’ve struck a chord. Thank you so much. Believe me, if I recover some energy & still having something to say, I’ll be back. xoxo

  30. AnneMarie, I feel good knowing that you are out there in the blogosphere, keeping up the righteous rants. I ‘forgot’ my anniversary day, too, for a while. I actually had to look it up!! LOVE that…xoxo

  31. Bethany, I don’t even remember now how we stumbled upon each other early on in our mutual blogospheric journeys, but I’m so glad we did. I love your phrase, “I’m not defined by yesterday.” It’s meant a lot to me to have known you all this time & to see us both coming through some hard times & getting to the other side. Hugs to you & your girls. And I’ve been enjoying your fiction!

  32. Stacey, it means a lot knowing you’re there. We do owe our first responsibility to ourselves & our loved ones. We can’t do much for anyone if we let ourselves get worn out. Hugs to you & all your boys, big & small.

  33. Sharon, my dear sistah. We owe ourselves a good gab soon. Thank you for being there all along. I love you, too.

  34. Judy, thank you so much. Knowing you’re there, and that you truly get it in every way, has meant a lot to me. Believe me, if I feel I have something further to add to this larger conversation, I’ll be back. See you again soon in the ‘real world,’ I hope.

  35. Yes, we do, Sarah. Think of you every day. xo

  36. Thank you, Liz. It’s very gratifying to know that it helped you to visit my blog. And now, I’ll continue to look to your blog for sustenance while I’m recharging. Waving back, all the way to Oz!!

  37. Thanks, Praelior. Think of you often. xo

  38. Ah, Beth! Goodness knows I believe in levity! Without, I’d never have written half the posts I’ve managed to scrape out all this time!! But you know, I’ve learned that it takes a lot of energy & strength to maintain the perspective to be able to have that levity. And the well is just dry now. But I have hope that my levity well fills up again. xo

  39. YES, YES, YES, Heather!! For the first time in 4 years, I feel like maybe I’ve got some sense of my own pre-cancer identity. And I want to take the time to grab more of it while I’m feeling like I could succeed. Good luck to us both!

  40. So good to hear from you, Kay. Right back atcha. And especially, it’s been great to know that you get the whole art and art-making thing. I feel so adrift as an artist right now, and that’s one of the things I need to get back to in a bigger way. Thanks so much for your support. I love checking in with your blog.

  41. LOL, Elaine! Yes, that’s it exactly! I need to scrape the crud off my snark plugs!! ;)

  42. Hi Kathi,

    Wow, can I relate to your post. I too have been suffering from a similar fatigue. I am 3 1/2 years out from hearing those ominous words “you have breast cancer” and have been blogging ever since. My snarkitude began early on in my cancer diagnosis. I was primed for it – I lost my aunt to breast cancer in 1994 and immediately became skeptical of SGK and of where the money was really going – it certainly never went to my Aunt. So, I was bitter then. Fast forward to today and the fact that nothing has really changed (except that I feel it has only become worse) and I am, well, to say the least discouraged and sometimes just plain angry about it.

    I have felt compelled to write about what I think is wrong. But, something happened some months ago – I became completely burned out. Burned out on cancer, burned out on living in this post cancer landscape. I didn’t choose to stop writing, I simply just stopped. I had a scare, published that and then felt silly even reporting it because so many have it so much worse. I have been taking a break but, I do plan on blogging regularly again. Like you, one of the reasons that I stopped blogging is because I have been able to return to more of my normal, before cancer life. And I guess I have wanted to cling to that as much as possible.

    I didn’t plan on taking a break, it just happened to work out that way. Ironically, I started to write a blog post tonight (it would have been the first in months) and as I was writing it, I came to the same place – what am I doing? I am tired, I don’t have any energy for this right now, I don’t have enough snark, I am tired.

    So, I saved my draft and instead decided to pay your blog a visit. I can’t say that I am not going to miss your posts terribly, but, I completely understand. I selfishly want to see you write again soon. But, I am happy for you that you are feeling better – it is encouraging for me to hear. I will be thinking of you. Wishing you a good rest.

    Yours,

    Lisa
    AKA cancerfree2b

  43. Lisa, seeing as how I just got an actual email from some woman who works for the PR firm helping the American Society of Plastic Surgeons advertise their latest marketing tool, i.e., National BRA (breast recon awareness) Day this October, it may be that I end up writing a post again sooner than anyone expects!!!

    Hugs to you, sistah.

  44. Kathi,
    I get the need to take a break, but hope you’ll keep writing — whatever the subject. Your posts have educated, entertained and inspired me (yeah, despite my tagline, I get sick of my own topic at times). Only Kathi can give the gift of Kathi to the rest of the world. Bestest, e.

  45. Thanks, Elisabeth. I don’t think it’s a forever break. Just a major recharge. After all, Pinktober is coming, and those plastic surgeons and their National BRA Day are really asking for it…

  46. Dearest Amazon,

    As you know, I’ve been riffing off your blog for over a year now and feel heartened and inspired by the depth, passion, and as Steven Colbert would say… TRUTHINESS you bring to the conversation. I’ve talked to many people who feel exhausted by what seems to be an overwhelming barrage of ‘more of the same.’ But, sister blogger, times are a changin’. Thanks to you and those cancer rebels out there, the boobies bandwagon is chugging with less gusto. More work to be done. More to say. More to REPEAT. And your “Fighting the Pink Peril” collection will be a good reference point. I think we should all compile one of those, and then publish the collection for some REAL AWARENESS.

    Onwards and upwards. Rest and rejuvenation. Black armbands all.

    –Gayle

  47. Thank you, dear Gayle. You have been one of MY own ‘riff-erees,’ too. I know we’ve made a difference, which helps me feel good about taking a break now. And I think a group collection of ‘FTPP’ posts is a great idea. :)

  48. Kathi,

    Here I thought it was just me! And the simmering heat of summer. I have had ZERO impetus to blog. It’s like I’m stuck in neutral or something. I’m behind on all my bloggy reading too (hence my just now coming upon your two-week-old post!).

    Napping is highly underrated. I fully embrace my newfound capacity to enjoy a good long nap, no matter the time of day (or night). I wish for you many luxurious naps. But I hope you don’t stay away from the blogosphere too long (she said selfishly). There is nothing quite like a good snark attack!
    ;-)

  49. Hey, Renn! I haven’t been doing much blog visiting either. And yes, the weather has NOT been helping!

    Naps are a beautiful thing, and my cats live by that belief and are always happy to encourage it in me. Will no doubt be returning to snark when I recover. xoxo

Leave a Reply