Breast Cancer Journals, Part 1

Note: September 8 will mark the 15th anniversary of my diagnosis of Stage 2b breast cancer.

My mother had had breast cancer and so did her only sister and my father’s only sister.  That’s why I’d had mammograms every year since I was 35.  Given my family history, I wasn’t surprised by a diagnosis of breast cancer in 1995.  But all my relatives had been in their late 50s or early 60s when they were diagnosed — and  I was only 45.  My daughter was 13 and my son 9.

Since then, for someone who thought she would die in her 40s and miss seeing her children grow up, I’ve been incredibly fortunate.

Over the next five days I’m going to be blogging excerpts from the journal I kept during my diagnosis (which were previously published in the Dallas Morning News).  It’s a way of reminding myself how lucky I’ve been and thinking about so many friends who haven’t been nearly as fortunate.

For me, these journal entries are a return to a very difficult time in my past; for the more than 200,000 women who will be diagnosed with breast cancer this year, they represent the present.  Not that much has changed in the past 15 years.

If you would like to contribute to a local organization that makes a difference in breast cancer survivors’ lives, I’d highly recommend Austin’s Breast Cancer Resource Center

***

Monday, Sept. 11, 1995

I have breast cancer.

I’ve now lost count of how many people I’ve said that to.  At first, I made myself say it so I’d hear it and believe it.  Otherwise, it wasn’t real and I might forget.  Later, I realized I was repeating the news because — strangely — it gave me something else to focus on.  I could concentrate on how the other person reacted.  What kind of person was I telling this to?  How much did he care about me?  How sensitive was she?  This way, I could look at the other person, instead of myself.  I wasn’t left alone.

***

After I got my diagnosis, I slept badly Friday night.  I got up early and went into the bathroom and washed my hair.  Then I stood and stared at my body in the mirror.  It looked so strong and healthy.  But I knew that was a lie.  I wasn’t as strong and healthy as I’d thought.

My breasts have always been small and flat.  They aren’t perfect or gorgeous, but they’re mine and we’ve been together a long time.  But we’re about to go our separate ways.  When my husband and I saw Dr. K, my surgeon, today, he began to tell me about my options for surgery.  I stopped him.

“I’ve already decided,” I said.  “You don’t have to explain anything.  I want a double mastectomy.”

It was an easy decision for me.  This is my life and my choice.  I want everything gone.  I don’t want anything left where cancer could grow.  I don’t know how I’d feel if I had cancer in a vital organ like my liver — whether I’d feel the same sense of alienation I do with my breasts.

So, on Monday, Sept. 18, I’m going to have surgery and lose both my breasts.  And then — well, I don’t know what will happen.  What do they do with parts of your body after they cut them off and analyze them?  How do they dispose of them?

That makes me think of a great scene in the movie Fried Green Tomatoes, where they had a burial and graveside service for a boy’s amputated arm.  Shouldn’t my breasts get a proper burial, too?

Tuesday, Sept. 12

I’ve asked a friend, Janet, to be an honorary “aunt” for our daughter.  I want her to have another woman she can turn to when I’m less available.  She won’t be able to get directly angry at me and I want her to be able to talk about that with someone else.

Already, it’s hard for her to talk to me.  She talks more to my husband and asks him questions.  Last week, she asked him if I were going to die and he said no, he didn’t think so.

Our son’s at a less-demanding age, but I worry about him, too.  Last night, he and I lay on the bed in my room and talked.  He asked me about the surgery and I told him the doctors would be removing my breasts.  Then he asked why people got cancer and I told him it was all very complicated and mysterious.  In some cases, it’s a weakness we’re born with.  I know he’s especially concerned because of a friend’s father who died from Hodgkin’s disease three years ago.

For myself, I’m scared that something will happen to me.  For my children, I’m even more scared.  I don’t want to be ripped out of their lives.

***

Yesterday, the doorbell rang and it was a woman who lives a few blocks away.  She was bringing me a card and a journal to write in.  More than anything, I could tell, she desperately wanted me to be more positive and life-affirming — and right now, there’s no way on earth I could do it.

Why can’t anyone understand me? I’m handling this the only way I can.  I’m finding my own way, slowly and painfully.  Thanks for your sentiments, your cards and letters and suggestions – but they all involve directions I may or may not take.  Help me in the way I’m choosing to go, not in the way you want me to go.  I won’t be the cancer patient you want me to be.

Be positive.  Fight it.  Your attitude is everything.

First, you get diagnosed with cancer, then you feel like you have to pass a character test as a cancer patient.  There’s a prescribed way I should be reacting and, if I’m not meeting those expectations, people want to help me readjust my attitude and realign my soul.

I’ve crossed a line.  I’m living somewhere else.  I can remember so vividly seeing a friend of mine after she’d been diagnosed with cancer last year.  I felt awkward and kept wondering what to say.  To me she had become someone else, someone with breast cancer.  And that’s what I’ve become to other people who don’t know me well.  My husband says I’m a walking Rorschach test for others’ projections and insecurities.  I’m a source of awkwardness and pity and the carrier of a disease.  I’ve crossed that magical line and I’m different.

(Copyright 2010 by Ruth Pennebaker)

Read Part 2, Part 3, Part 4 and Part 5 of this series.

Read one of my favorite posts about here is how it will happen to you

19 comments… add one
  • Gosh, Ruth, I can’t imagine what you must have felt to first write those thoughts down and then, years later to revisit it, edit it and publish it. Kudos to you. I can’t wait for your other installments.

  • Wonderful, clear writing that’s hard to read.  What a terrible time that must have been for you.  You are here, and your children are grown up — that’s great.

  • First the diagnosis, then the character test. I never thought of it that way, but it makes total sense. I hate other people telling me how I should feel at any time; I can only try to imagine how I would feel if they were weighing in on how I should handle something like this.

  • Oh….I can’t at all imagine how you felt during all this, especially with two young children. Even though I know the happy outcome, it’s painful to think of all you went through.

  • I am documenting my breast cancer experience as well but found the humorous aspects of it.  I just made it a year from diagnosis -but I am still in treatment – finished chemo, hair is growing back.  Herceptin until December and reconstruction in November.  January of 2011 I’ll be mostly done, with the exception of 4 1/2 more years of tamoxifen.
    Congratulations on making 15, I can’t wait until the day I can say that!
     
     

  • People do seem to expect you to become a member of the pink ribbon rah-rah team. At this, I would fail miserably.

  • ruthpennebaker

    Best of luck to you, Ann.  I look forward to reading what you write — and to celebrating your anniversaries, too.

  • This is a stunning and honest journal. You are blessed with a voice for telling a story and telling it well, even in your journal! A gift.

  • Thanks for sharing this Ruth.

  • your husband had it right, about how many people react. to breast cancer diagnosis, and to other sorts of deep pain and loss.

  • Wow – this is really powerful stuff, Ruth. I’m sure if I were in your position, I might have felt similarly about being concerned for the children (smart idea to ask a friend to be an honorary aunt). It’s a terrible thing to lose a parent, but I’m glad you had the chance to watch them grow up.

  • Such powerful writing, Ruth!  I have often thought about how I would react, if I had been diagnosed with breast cancer.  There was a lump, 15 years ago, when I was at the same  age almost as you when you were diagnosed.  The lump wasn’t cancerous, fortunately for me.  But I started paying more attention.  Now I am an activist, on the cusp of becoming militant, about the toxic chemicals in our environment, which I believe are causing disease, like breast cancer, in our women.  The Silent Spring Institute recently revealed studies that show exposure to household cleaning products seem to correlate with the statistics of women who get breast cancer.  This all makes me so mad.  We need to get these toxic chemicals out of our environment, and no one in the government dares to stand up to the American Chemical Council lobby.  I look forward to reading the other excerpts of your journal that you have chosen to share here, so personal, so poignant.

  • I have never quite made sense of why people who have had cancer seem to feel about it in a different way than if they had had any other potentially fatal disease, but your post makes it clearer to me.  It’s the character test: no one is told they will be cured of, say, congestive heart failure by having the right attitude, or that they can unclog their arteries by “visualizing” the fatty deposits…  And if they die it isn’t because they weren’t enough of a “fighter”. 

  • Such a powerful insight into what it’s like to go through this. Well written. Touching. Real.

  • My daughter is 12–even though we talk pretty openly, I can’t imagine the kind of feelings she might have if the topic were mom’s cancer. When my grandmother had breast cancer we didn’t talk about it much. She was in her 80s. The last time I saw her (she’s still alive at well at 97) we went shopping and she’d found a good use for her prosthesis (she had one breast removed)–she stashed her cash in it. I had to smile at my grandma–she got a kick out of using her hiding place.

  • I loved this post. I was almost afraid to read it, but I trusted that your beautiful writing would carry me through it. And it did.
    So much of it echoes my experience, which is funky, because getting diagnosed with cancer is such a personal experience, and, as you noted, everyone needs to walk that path in their own way. So the commonalities touched me.
    I’m still always so impressed when people reach out, because once you cross that line, you realize that your presence makes for something awkward in people’s lives. The presenced of others is so important — we measure ourselves in that way, see who we are and aren’t, test out aspects of ourselves, connect and find parts of ourselves….I love that people still try to connect, even as we muddle through, or even resist their connections. And I love how you explore all of that, so succinctly.
    I’m thankful that you are on the other side of it all and are sharing it with us.

  • The part about needing to do it your way, not the way people think or expect you should, an invaluable insight that I’m sure will offer comfort to others with cancer, or dealing with some other life trauma.
    Brave of you to put it all down on paper. I’m wondering how it feels to read it now.

  • ruthpennebaker

    I try to detach myself when I read it.  I thought that, 15 years later, I’d be able to do that well.  But it’s much harder than I expected.

  • This is so honest and stark – stunning. You are very brave for putting these in the news and then here. I applaud you!

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