I Wanna Be The One To Walk In The Sun

Chocolate cake, champagne and whipped cream. Can’t fix everything maybe, but it seemed like a good place to start, especially on New Year’s Day. Because I’m having an awfully hard time accepting the fact that I just spent the whole of last year feeling like crap — in ways that no one warned me about beforehand or explained very well, if at all, afterward and therefore came as several rude surprises. Talk about shock & awe. So now, I’m angry. And when I’m not angry, I’m depressed. And when I’m not depressed, I’m exhausted. And when I’m not exhausted, then every muscle in my body aches after doing routine simple things like cleaning off the kitchen counter or going grocery shopping. And it hurts when I pick stuff up with my right arm. And I cough when I take a deep breath. And my brain runs out of gas sometimes at very inconvenient moments and whole parts of it just shut off. And I love my job, my wonderful blessing of a profession, but I’m beginning to dread going to work, because no matter what I’ve done this past year to try to get back to normal, it fails, and I still end up feeling like crap. Different crap, maybe. But crap nonetheless. I’ve got bills to pay so I can’t just quit my job or even take a long leave of absence, because disability insurance is not all that hot and doesn’t pay all that much, and I’m not sure I can afford it. It’s all been pretty disheartening, to say the least. And the real kicker for me, the thing that makes me absolutely crazy, is that I had “early,” non-invasive breast cancer, and I had every reason to think I’d be all better by now. So, excuse the heck outta me if I’m grouchy, but I’m a little verflempt these days.

If there’s anything good about how I feel, it’s that I think I’ve started to get past the first stage of grief, i.e., this year-long phase of being stunned or in denial or thinking if I just found the right diagnosis or explanation or research article or whatever, I would find the magic solution and be able to fix myself and ride off into the sunset. Now I’ve moved into facing the fact that I can’t just instantly fix things, and there is no magic solution. So now, I am officially, actively grief-stricken. In the twelve-step parlance, I have taken the first step, which is to admit I was powerless to stop this particular foe, which was my breast cancer.

I am not the woman I was back in the spring and early summer of 2008, when I was entering art shows all the time, and serving as a clinical instructor to a physical therapy intern about to finish grad school, and serving on work committees and boards of directors, and giving professional in-services, and teaching other artists how to create their own websites. I was a regular dynamo, a ball of fire, yet not an obnoxious type A really, just a fun-loving, energetic soul who learned from her father’s example to live life with passion. I miss my old self, goddammit. I want to get her back. But I’ve tried and tried and tried. And I can’t.

How do you grieve for the death of your former self? While taking care of your present self? And perhaps getting to some future self that doesn’t resemble either of those two, but with whom you might be able to negotiate the rest of your life? I could deal with the identity crisis of menopause. But this? I don’t have the first clue where this is going and who I’ll be when I get there.

Elizabeth Kubler-Ross defined the five stages of grief as follows:

  1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
  2. Bargaining — “Just let me live to see my children graduate.”; “I’ll do anything for a few more years.”; “If I just do thus & such, then I’ll be okay, right?”
  3. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; “Who is to blame?”
  4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die . . . What’s the point?”
  5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well [deal with] it.”

In Kubler-Ross’s experience, she found that people don’t necessarily go through all five stages, but they do go through at least two, and sometimes, as I’ve done for most of the past year, they whip back and forth between three or four of them, desperately trying to cope until they’re ready to accept the full reality of their situation.

It’s not that I didn’t accept that I had breast cancer. What I have not been fully able to admit to myself until this past week is that the old me is gone. And, not to point fingers, but some of the people who have been supposed to help me get better have not been able to accept that either. Well-meaning friends are wont to say things like, “Oh, you’ll be fine, back to your old self again. It just takes time.” Or words to that effect. So, I am officially putting on notice any and all friends and work colleagues and health care clinicians and anyone else who has been trying to reassure me for the past year: I am NOT ‘fine,’ and I will not BE ‘fine’ anytime soon. And it is NOT helpful to tell me I will be. You”ll notice that I did not include Sistahs or cyber-sisters in the above group. Y’all know better. You know how invalidating and trivializing it is to try to pollyanna your way through the hard reality of the damage this adventure hath wrought.

At my second or third visit with my breast surgeon — before I’d had surgery — she told me about a book that her husband, also a physician, had given her for her recent birthday. The book is called This Is Not The Life I Ordered. With that title, it needs no explanation as to what it’s about. At first, she’d felt insulted about receiving it. But after she got over feeling that her husband was perhaps criticizing the way she dealt with life, she read the book and really appreciated it. As a doctor who has to deliver bad news to women who have breast cancer and who leads public talks about survivorship, the book was an apt addition to her arsenal of resources. She thought I might find it helpful myself. This was over a year ago, back when I was newly diagnosed and completely gobsmacked. On the one hand, I was still stunned that the word ‘cancer’ even applied to me, and on the other, I was grasping at any straw I could clutch. Eight months later, my surgeon’s husband, who was 48, died of a heart attack on a ski lift while they were vacationing with their children. Oh, Irony, you’re a real stinkin’ bastard sometimes, aren’t ya?

The book was written by a group of four women friends who helped each other slog through the dross that life kept throwing at them by meeting at a kitchen table once a month to validate and encourage each other. Eventually, as word spread about what they were doing at these meetings, they gave their group a name — Women In Transition, or WIT. They began to speak to groups and eventually, after ten years of meeting, talking, listening and thinking, they wrote their book. The central point, if I may paraphrase, was first to listen to one another. Then to acknowledge and accept whatever ditch had claimed one or more of them. Then to brainstorm about how to walk out of the ditch. And finally, to cheer one another on with the absolute faith that each woman would indeed walk out of her ditch, sooner or later. If you click on the title in the paragraph above, you’ll get to the website. If you click on the book cover, you’ll get to a downloadable excerpt.

That’s what the Sistahs have been doing for me. Social networking, or connecting with others who share interests, certainly did not start with the internet, but the Net has given it new manifestations. Personally, I think social networking is hard-wired into us women. In any case, I really discovered modern social networking by joining an online forum for others dealing with the vicissitudes of breast cancer. And what a fabulous discovery it was. Not perfect, not without the occasional snarking. But still, I found a bottomless well of the kindness, generosity, intelligence, wit, resourcefulness, strength and enormous courage of women (and a few men, too) facing calamity, from which I continue to draw. So, back to the forum now, perhaps, to start a new thread or find an old thread about this bloody loss of self.

In the meantime, please don’t employ that worn-out, inept chestnut of trying to “make me feel better.” In the first place, I resent anyone trying to make me feel anything I don’t feel. And when it comes to grief, I’ve learned many times over that the only way past it is through. There’s nothing wrong with tears and sadness and grief. They are a measure of the value of what we have lost. Empathy? Validation? Cyber-hugs? Yes, I’m always glad of those.

Besides, I’m not a total downer. I’ve been trying to distract myself by doing things I enjoy, and I’ve been succeeding a lot of the time. But not entirely. Somehow, watching this music video of one of my favorite female anthems by one of my favorite females just makes me weep right now. But it’s all right. Eventually, I’ll figure out who I am. And she’ll have fun, too.


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This entry was written by Kathi, posted on Saturday, January 02, 2010 at 01:01 pm, filed under Art & Music, Attitude, Cognitive Dysfunction & Depression, Fatigue, Life & Mortality, Nitty Gritty, Survivorship and tagged , , , , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

11 Responses to “I Wanna Be The One To Walk In The Sun”

  1. And for extra poignancy, is that a young Patrick Swayze dancing at the party at the end there? Or someone who just looks like him?

  2. I promise to not tell you ‘everything will be just fine’ but I sure do wish that everything will at least start to get easier soon..

  3. Kathi……. I have some truly exciting, earth changing news that I want to share with you. Seriously, I think that it will bring a glimmer of hope into the darkness.

    I’ll send you a message over on FB — cuz it’s all still hush-hush.

    xx00xx00xx00xx

  4. OMG, I just noticed the Conehead in the background on the music video! LOL.

  5. Kath – I felt every word!!! I will never tell you “everything will be fine” – or – “you will soon be your old self” because, truthfully that gal is gone. I said those words to my onc – I think it was the last visit…

  6. I know this is hard for you. I would be totally pissed that I went through what you did and then feel worse. I am hoping and praying things get better for you as well as for myself. My heart breaks for you over the pain and exhaustion you are feeling. It just totally sucks. If there were someone’s ass I could kick to make it better I would. I so totally would.

    We will win in 2010. We will win the battle of fatique, exhaustion, depression and feel better. I just know it.

  7. Oh my gosh. I just noticed the boots. They are awesome. Love them. Oh and I love the cartoon above about chocolate. : )

  8. Kathi–love your blog, and especially love the title.

    The image of an Amazon was one I held onto during my first years living with breast cancer. I even searched for a good Amazon image to hang on my bedroom wall, but never found quite what I was looking for … then a friend painted a picture of me as an Amazon …

    Welcome to the battle.

    Jeanne
    http://www.assertivepatient.com

  9. Thanks, Coco! Believe you me, I will be calling you to help kick some ass one of these days.

    Cindy, I’m glad you said that to your onc. When I last saw my med onc & told her I’d quit taking tamoxifen (which sure didn’t keep the beast away from you, Debbie), I told her that wild horses wouldn’t make me take another anti-hormone drug. She actually agreed with me, which was a surprise, that it wasn’t buying me enough of a decrease in my recurrence risk to warrant the damage it was doing to my quality of life. It was the first time any of the damn docs even used the words “quality of life” to me. And I was glad she had a resident there, who was just starting her residency. The docs need to hear our candor. And we deserve their candor in return.

    Jeanne, thanks for visiting! For a laugh, check out this link, which is an Amazon painting I Photoshopped: http://www.accidentalamazon.com/blog/?page_id=971

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