Explaining the Silence

This October has been different from the last in a thousand ways.  I’ve spent the days outside with my kids, the nights inside working, and cleaning or laughing with my friends whenever I get a spare moment.  The children are happy, healthy, and pretty well adjusted, after all.  The baby is learning to talk.  He babbles and repeats our words, with often hilarious results.  The preschooler is potty-training (again), and learning that he really can do whatever he sets his mind to.  All of us are exploring our world, looking for new opportunities, and fixing what we can.

Last October was very different.  Last October, I was bedridden, too weak to walk, arms covered with tracks from the chemotherapy injection needles, and with a real fight on my hands.  The tumor had stopped growing (on visual inspection, at least), but it was not receding peacefully.  It took my energy.  My vigor.  My taste for new things — and in fact, my tastebuds altogether.  Chemo and cancer had ravaged my body so completely that my oncologist was concerned about starting the new treatment as scheduled.

In the end, she did start the Taxol, but gradually, scheduling weaker doses weekly rather than standard doses every three weeks. That made it possible to move again, but every Thursday became a day to dread, a day that would knock me out for the weekend and make me fight back to life every Monday morning.

I sat at my computer for hours.  (It sat at me, rather, as I balanced it at my bedside.)  I struggled over the words, the tension, the emotion that would explain my story of cancer to you, the words that would bring my experience into your computer, and into your heart. Reaching out to those with cancer, those with family or friends who might have experienced cancer … and to those who have not yet been even touched by cancer became important to me.

For while I could no longer do so many things, I could still do one thing to contribute to the world.  I could tell my story.

And you told my story right along with me, encouraging me at every step.  You wrote — and kept writing — about cancer, talking about early detection, joining Team WhyMommy and posting special bits for October’s breast cancer awareness month.  I collected links diligently, encouraging you as you encouraged me, and you can still find them all at the top of this and every page on my site.

But this year it all feels different.

This year, I’m supposedly “healed.”  I’m “cancer-free” at least as far as we know, and I’m so much better that I’m even taking care of my kids all week alone (last week – check!) and/or working a normal schedule as per my plans.  I’m raking leaves.  I’m helping others.

But life after cancer is irrevocably different.

This year, the pink ribbons are a reminder of what I went through, and it’s not altogether pleasant.  When I see the pink ribbons and pink shirts, and the ads for the Komen walks, I remember what it was like last year.  I remember showing up to the walk, overwhelmed.  Tired from that week’s chemo treatment.  Discouraged.

Bald.

I did my part.  I walked.  I cheered. I was the happy little survivor.  But inside, I was still tired.  Still upset.  Still embarrassed to be there — of all places! — without a shred of hair on my body, except a few straggly bits of my eyebrows.

I felt like a freak.

I was so self-conscious that I even refused to show you, my friends, the pictures after the walk, and I stopped venturing out as much as I had before, when it was easier.  I went to playgroup, that sanctuary of friendship that never let me down (when no one had colds!), but, other than that and a few visits from close (and healthy!) friends, I lay in my bed and looked at the closet doors.  Tired.  Fighting.  But tired.

And sometimes I feel that way even today, long after the treatment has ended.  For although my body is healed, the cancer — and the treatment — left scars behind.

Sometimes I wonder if you can see them.

Can you see the scars, when I’m “out with the girls?”  Does the fact that I was recently bald show when you look at my cute cropped hair?  Do my clothes fit right, or are they flat where they should be lumpy and lumpy where they should be flat?

When you look at me, do you see the turmoil that still rages within me?

I struggle with the thought that I’ve been through so much this year.  I have anger over what I’ve put my family through.  I mourn the missing days and weeks and, yes, even months (November, anyone?) that I missed out on last year, sheltered in my room, fighting the invisible and unseen enemy within.

Cancer takes so much from us.  It took my breasts.  It took my ovaries.  It took my lymph nodes and left lymphedema — and disability — in its place.  But what I miss the most is my carefree life, my life where my biggest worry was potty-training my toddler, and the rock-solid certainty that I used to whisper to my child as he went to sleep, “Shh, baby.  I love you.  I will always be here for you.”

I do not wish this on anyone.  And so I have a question to ask you before you leave. 

Have you done your breast self-exam this month?  Was anything different on one side but not the other?

Please, please, take this seriously.  Check your breasts tonight, in the shower, or tomorrow when you wake up.  If you see or feel anything unusual, call your doctor right away and go see her asap.  Please.  Do it for Andrea.  Do it for Jenni.  Do it for the Moms with Cancer.  Do it for me.  And leave me a comment — I’ll post something special next time if you do.

34 Responses to Explaining the Silence

  1. De in D.C. says:

    I did a full self-exam last week, but usually do a little check every time I take a shower. I still have trouble with the lumpy mammary glands; trying to feel around the bumps and crevices, but I figure the more I know my body, the more likely I’d be to find something unusual.

  2. HeatherK says:

    I did, but you reminded me I need to call my sister and remind her. I’m in awe of what you’ve been through this past year. I still miss Andrea’s voice. I was at the Please Touch museum and I wondered what she would have thought of C tearing it up in there. I’m glad your boys still have their mommy. I’m glad you get to clean up potty misses along with the rest of us. My guy is a babbling fool as well. It’s the little things and the big things.

  3. mariah says:

    You are an inspiration. Thanks for sharing your story. Came here from Twitter and glad I did!

  4. sprucehillfarm says:

    Wonderful post Susan. I know what you mean. Enjoy the fall season it has been such a beautiful one.

    I felt a little funny at the walk too, though I am not bald anymore I still felt out of place, not yet at my one year mark!

  5. Monica says:

    I laughed when you said your clothes were lumpy in all the wrong places. Boy do I know how that goes. At least you have a good “excuse”!😉

  6. Missy Diggs says:

    well, yeah. I am right there with you, mama. Last week was my 1-year IBC anniversary. This Thursday is the Vivid Girl’s fifth birthday and also the 1 year anniversary of my first trip to the IBC clinic in Houston. What has happened to me, and to my family, between then and now is indescribable. I am left with scars, barely healed radiation burns, a flat chest, a bewildered mind, and a raging raging heart. Also a cool new hairstyle; my hair sticks straight up when it used to hang straight down, very funny and new. Thanks so much for sharing; I haven’t been able to keep putting words out there lately.

  7. hotfessional says:

    And yet, look at you today. Strong. Mothering. Lovely.

    And yes, honey. Exam done. All clear.

    I’m running the Save The Boobies campaign again this year – if anyone wants to stop by:

    http://hotfessional.com/2008/10/02/

  8. Another beautiful post. I’ll check myself out tonight. Thank you so much.

  9. I love this.

    I am checking myself as soon as I hit submit.

  10. Amy says:

    I actually had my yearly mammogram Friday and for the first time in four years they did not have to do an ultrasound after & I don’t have to go back for another YEAR! (I had been going every 6 months.) I hadn’t even realized how much it weighed on me until I received the results.

    Thank you for being so open. It’s a gift you are giving us.

  11. marty says:

    Why yes, I’ve squeezed and prodded the girls. Miss Righty is bigger than Miss Lefty, but that is only a result of me being a naughty nurser and letting CC have a favorite.

    That. Was way more information than you probably wanted.

    I have missed you.

  12. Robin Hurwitz says:

    Always good reminders to check not only the breasts but under the arms and around the chest area in general. Thank you. Thank you for sharing, for teaching those of us who do not yet have this disease, but who are trying our best to support loved ones going through it, and wondering if what we’re doing is enough (it never is). We are thankful that you are here for yourself, your family, your friends, and for us all.

  13. Everything you say makes complete sense. The task after cancer is integrating the changes, losses and ongoing challenges into our new lives after cancer. The hope is that the lessons learned through our unwanted and unwelcome cancer experience make our “new normal” in certain ways a “better normal.”

    You might enjoy my poem, View from Remission:
    http://wendyharpham.com/Pages/VIEW.htm

    With hope, Wendy

  14. I will do a check in the tub tonight.

    Thank you for all that you’ve shared, and your caring reminders to us to take care of ourselves, and to be present with our loved ones each day.

  15. magpie says:

    You look amazing on the outside. But I can well imagine the internal toil.

    Be well, friend.

    (And yes, I check ’em regularly.)

  16. Kristina says:

    My mom’s a survivor, and every year, her mammos carry a bit of fear (mine, too, I’ll admit) and pride in having “fought and won” the battle.

    You’re right on… even such an extraordinary accomplishment as surviving cancer doesn’t make the years that follow any easier. It’s a continuous fight to rebuild and keep the demons at bay… to continue to fight, for yourself and others, this war against cancer.

    I know we don’t know each other (beyond Twitter!), but I find you very inspirational. I know that can carry a heavy load, too, but in my endeavors to help find a cure against this cruddy disease, I’m proud to be connected to you!

    …and thanks for the reminder… checked this morning😉

  17. Debbie says:

    You are an amazing woman and an inspiration to us all. Thanks for the reminder to self-examine and for the reminder of all that we have.

  18. I haven’t commented in awhile but I have been here and I have been reading!!

    I have to share my story.

    Last Monday I went into my TiVo and the suggestion folder and it had recorded “Why I Wore Lipstick to my Mastectomy”. I had seen the movie already but decided to watch it again. That night as I lay in bed I decided it was time to do my exam. I hadn’t done one in probably 2 years, at least!!
    Well, I found something. I found a lump and a good amount of tenderness and pain. I saw my ob/gyn on Friday and she is almost certain it’s a cyst and is unsure of where the pain is coming from. I have to go back into two months to have the pain and the lump re evaluated.
    I am doing my very best to focus on the positive here. I am doing all that I can to not think about cancer. It’s hard.

    I encourage each and every single woman and man out there to check themselves! REGULARLY!!!
    It’s too important not to!!

  19. laurie says:

    Every thread in this post spoke to me, moved me and awed me. I understand.
    And you say it all so beautifully.

  20. lovebabz says:

    Oh My Sister This OCTOBER is so MUCH Better! than last year. Last year I was doing time in a federal prison camp..counting down my remaining couple of days until release.

    YEP I am celebrating! I am raising my glass to you! We’ve come a long WAY BABY!

    Next year we are partying! Or when I see you at Blogher 09 either way we are celebrating our grand lives!

    PEACE Baby!

  21. Rebecca says:

    Thank you for sharing this open and honest post. It was very moving.

    And I did my exam!

  22. Amelie says:

    Thank you for sharing. And reminding us.

  23. tori says:

    I can very much relate to the whole life is different after cancer thing. My friend (who also had thyroid cancer…what are the odds that two good friends would both have it within a few years of each other?) and I were recently talking about how our biggest worry used to be the kids nap schedule, or where we should go for lunch or whatever. After cancer, it seems like a lifetime ago that THOSE were actually things I worried about.

  24. Diane Willen says:

    I thank you for your October post and the reminder for all of us…Meighan my sister in law is 6 months into her treatments with IBC stage 4.
    She is doing well and yes she is reminded by her fatigue that she is fighting this very hard. She is a
    great mommy like you to her young daughters.

    Take Care and enjoy October…
    Diane

  25. mandi says:

    yep, did my check! thank you for the reminder of how precious life is.

  26. Bubba's Sis says:

    As the daughter of a 3-time survivor of breast cancer, I am diligent about self-checks. Often I think that it’s not a matter of IF I get it, just when…. Hubby tells me not to think that way but I can’t help it. Cancer affects you, even when it’s not you but someone close to you.

    I am SO PROUD of you for fighting back the way you have done! I know it hasn’t been easy, but here you are today! Life is good!

  27. Gill says:

    You have an amazing gift for sharing your story in a way that is so accessible. Thanks for sharing and for teaching people like me so much, not just about cancer, but about life after cancer.

  28. […] you done your self-exam yet?  Everyone’s doing it, and our friend Ree, The Hotfessional, is running a special “Save the Boobies” event […]

  29. Dawn says:

    I am not sure if you have read it, but I wrote a letter to you on my blog this week. I hope you’ll get a free minute to come read it. *hugs*

  30. Ellen says:

    Every word you write is gift to us all. Thank you so much for sharing and reminding us all that the fight goes on.

    My boobs are good. Check with me again next month. I know I will. 🙂

  31. M. says:

    Please listen to Ida Maria’s “Oh my god”. As a survivour, in many respects-, I’ll say…it’s beautiful.

  32. m says:

    Had a mammo and then an ultrasound this month. (And it turns out my mammography place gives out pretty pink crystal earrings if you get checked in October…how about that?)

    You are inspiring on so many levels: as a mom, as a survivor, and as an educator to all of us who follow your journey. Closing my eyes now, crossing my fingers, and visualizing you receiving good news about your scans. Happy thoughts, good vibes, and many thanks coming your way.

  33. JoC says:

    Booby check done. Thanks for the reminder. I feel like I shouldn’t need it but it does help. I am so pleased that you are engaged in life and yet find time to blog too. Happy Halloween.

  34. Rebecca U says:

    Check done, mammogram scheduled. A friend is waiting for the results from her breast lump biopsy.

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