My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

What Defines Me

20 Comments

I was riding in my car this morning, listening to WNYC, and a commercial for Memorial Sloan Kettering Cancer Center came on.  It was talking about survivorship.  I can’t remember the exact words of the commercial suddenly (chemo brain!) but it was something like, “After cancer, people call you a survivor.  But after cancer, at Memorial Sloan Kettering, we want you to do more than survive.  We want you to live.”  On the Staten Island Expressway, 10 minutes from the school I would be teaching in, I started to cry.

Recently, I have been thinking about my life post cancer.  It’s been a year since I’ve finished major treatment and although my trips to the cancer center are less frequent, I still feel like it’s a major part of my life.  I remember after being diagnosed that I was told that I would have “a bad year.”  I don’t know if I was told the next part or if it was something I assumed but, I thought my doctors told me that after the bad year, my life would go back to normal.  My hair would grow back and look super cute with short styles.  My energy would be back.  I’d feel good and I’d be cancer free.

What a load of bullshit!

While the side effects of past and current treatments are awful, it is the emotional toll of the experience that is now hard to live with.  When I started this blog, I wrote in my “About Me” page that I wouldn’t let cancer define me.  I meant it, too.  Just two weeks into my diagnosis, I’d bought into the idea that cancer was not permanent and that while it sucked in the present, it was something to be overcome.  And when I did kick cancer’s ass, I could continue with life as usual.  Cancer was like a “Breaking News” interruption of my favorite program; it was annoying and I wanted to get back to my regularly scheduled programming (my regular life) but I had to get through the necessary detour.  That is what I was promised.  That is what was sold to me.  So when I said that I would not let cancer define me, I meant it.

Oh, naive, Carrie!!!!!  If you only knew then what you know now.  If you only understood the damage cancer treatment can do.  If you only understood what was in store.

Cancer completely defines me.  I think about it all the time; with every hot flash, every time I see my scars, every swollen sensation in my ugly ass lymphedema arm, every time I see the new curly, dry hair (previously wavy and shiny) that I can’t control, every time I put on mascara (I never needed it before), every time I eat (is what I’m eating a good choice?  Will it stop my cancer from coming back?  Is it feeding my cancer?), every time I work out and my body feels like hell, every back pain, every disappointing moment and even in every moment of joy.  Cancer is always there.

Cancer is a part of almost every conversation I have.  No matter the topic, it always comes up.  I think to myself as I talk to people, “Just don’t mention it!!!  No one wants to hear about it!  They’re all sick of it.  Stop talking about it!  Stop! Stop!  Shut the fuck up!!!!!!”  But I can’t help myself.  Everything for me comes back to cancer.

It is who I am.  It is so much of what defines me, I often don’t remember the person I was before.  This leaves me with the particular conundrum of having to redefine my life.  I’m suddenly in the position where what I thought I wanted, I either don’t want anymore, am not sure if I want anymore or if I can make it work in my post cancer life.  The things that brought me joy before cancer don’t bring the same amount of contentment.  I feel like I should now do great things with this second chance I have been given but, what is this new goal that I must surmount?  What must I achieve to make my life meaningful again?

I believe that in our lives, experiences can change us and make us analyze our current lifestyle and goals.  We should redefine ourselves.  We should always be growing.  But when the impetus for change is something so violent, invasive, and permanent…that redefining can be overwhelming.

I’m trying to get to know myself again.  I want to know who I am and what I will become.  But right now, the old me is holding the new me back.  She doesn’t want to let go.  She doesn’t want the cancer, or, more accurately, the experience of cancer, to win.  But it’s who I am now.  It’s everywhere!  Even in my morning commute.

 

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20 thoughts on “What Defines Me

  1. Carrie, I know what commercial you’re talking about. MSKCC is into this new campaign where they want to create “less fear” and “more science” with a focus of “living life”. It def. sounds great in theory but I am not too sure how realistic this is considering we are still so behind on science.

    I can relate to this piece a lot. One thing about me is that I am not able to separate cancer from me. At all. It’s part of me; who I am (omg I said it!!). I never thought of cancer as an invader or a separate entity. So this belief sort of shapes the way I feel in general about having cancer. I wrote about this concept, and when I am brave enough, I will share. You’ve opened a door for those who feel the same way but may be a little hesitant to share openly about those feelings.

    Once diagnosed with cancer it stays with us forever. I know some people think it’s a choice, but that’s not how it is. And besides, I feel a lot safer being aware than pretending it’s all good and pretty. I am not so sure we ever reclaim our lives back. Survivorship is no picnic! Sadly, cancer will always be be a major part of our lives. xo

    • I’m glad you relate, Rebecca. I think you have a unique point of view and experience with this as well and I look forward to reading about it when you are ready. xoxo

  2. Carrie, boy did this post resonate with me! I remember that first year post-treatment, and it was hell. Now, I’m 15 years out of treatment and I still think of cancer every day. I’ve had scares, and even when I look at my breasts, they are a reminder of the bilateral mastectomy with reconstruction I had. Cancer has shaped my identity, I’m sad to say.

    Hang in there. One day at a time.

    • First of all, yay to 15 years!!!! That’s really wonderful. I’m also glad that you relate to this. It’s amazing how this experience shapes our identity, even when we are so far from the initial experience. Thank you for reading and sharing your thoughts!

  3. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  4. What an excellent read. I relate. So much. It’s been six years for me and sometimes I feel like such a cancer misfit because I still think about cancer so much. But then again, how could I not? I deal with the fallout every day. One day I tried making a list about areas of my life not impacted by cancer and I couldn’t come up with a darn thing. Says a lot, right? And being brca+, I also think/worry about my kids, my siblings, my nieces/nephews and cousins. I worry about them too. Cancer is such a God-damn intruder. Hate it so much. I don’t mean to make it sound like I don’t carry on, I do, but well, you know… Thanks for the important post.

    • Thank you for reading and sharing this post, Nancy. It’s one that I’ve been trying to write for a while. It’s amazing how you tried to make a list. I did too!!!! This cancer is everywhere. I hope that with time it will not be the case or, at least, so upsetting and traumatic. Thank you for reading!

  5. I get it! My hair is just starting to come back and I’m grateful to have hair but everyone says they love it… And then they ask ‘don’t you love it?’ And I have to say..’no, I don’t love it’. It makes me kind of sad… It’s a constant reminder of the yuck.. This is my post on my hair growing slowly back.. http://wp.me/plvyq-Yn

    • I can’t wait to read your post. I relate so much to your comment here. Changes are hard, especially when we didn’t ask for so many of them. Thank you for reading!

  6. This is a very powerful piece. Thank you for putting into words an experience that I think is fairly common.
    I have been observing myself during the past year or so and surprised at how derailed me mind has been by the cancering “detour” – which actually never rejoins the highway. Where once I was a total go getter, very ambitious entrepreneur – 36 employees, community organizer, holder of board seats for non-profits etc. I find that now, post cancering treatments, I have misplaced all outward motivation. I work for someone else now, rather than being the boss. Mostly I just want to hang out with my children and cats.

    I thought I would never be the cancer equivalent of the high school Jock that never gets over his glory days – but here I am 2 1/2 years post diagnosis and still thinking about it constantly. And talk about it more than I wish. If I am more compassionate with myself I have to acknowledge that unlike leading my team to a state basketball championship, going through cancer treatments and their aftermath, plus the continued surveillance by oncologists, is actually a traumatic experience. I have recently started reading about trauma, and how to heal trauma – which is often stored in the body, beyond the access of our thinking brain.

    Go gently with your self – who you will transform into is yet to be determined. ( You plus me and all the other folks in the cancer-club) All the thoughts that arise, the connections that lead everything back to the trauma of cancer, may be just a means of coming to terms with the new reality – which takes as long as it takes. Unfortunately or fortunately, who knows.
    best wishes –

    • Thank you for reading and for these thoughtful comments. I connected most to what you wrote about trauma…being stored in the body. My new therapist is trying to get me to do some meditation and imagery work because of this. We will see if it helps. Have you done any of this?
      Thanks for reading!!!

  7. Bravo, Carrie, nothing but truth in your words.

  8. I believe — that your cancer consumed life can lead you to places in your soul that you’ve never experienced. I thought people were crazy when I’d hear ‘the blessings of cancer’. But now, being constantly in the realm of hoping it never comes back, I can honestly say it’s true. Life is much more beautiful.

    • I’m glad you are having that experience, Tammi. I hear so much about women who find that life after cancer is better, more precious and special. Why do you think that is for you? It’s not my experience.
      Thank you for reading and sharing!

  9. I really could have been reading about myself there. A good, frank post.

  10. I remember as I went through the year after, I was so glad my oncologist clued me in that it would take the better part of a year to feel myself again. What I didn’t expect was that year to come and go, and while things improved, it was far from over. It seemed the emotional toll was greater after than during. Thanks, Carrie, for expressing this so well.

    • Yes, it’s completely true. During treatment, I had really good spirits most of the time. I had a sense of humor and often made jokes. Don’t get me wrong. I had plenty of bad moments but, overall, I was doing well. It wasn’t until after that I completely fell apart. This survivorship thing is brutal!
      Thanks for reading!

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