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Private Body/Medical Body

May 7th, 2012

I haven’t read Susan Gubar’s new memoir about her terminal ovarian cancer yet. The famous literary critic explained that she was motivated, in part, by a problem that Virginia Woolf’s generation of women writers had failed to solve: telling the truth about the experiences of a woman’s body.

I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.

The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.

So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.

Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.

During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.

Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.

This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.

  The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
•  The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
•  The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
•  The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
•  The way strangers simply appear without introduction when you are half naked on the radiation table.

 

As my reconstruction has progressed, the procedures have gotten more intimate.

Really. It is  not possible to be any more flat-chested than this.

First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.

Now, the most intimate surgery of all is on deck:

Nipple reconstruction.

It is so so private to talk about nipples. I can barely stand it.

But the awkwardness also marks a welcome return.

My Medical Body is becoming a Private Body again. And I am so thankful for that.

 

This entry was posted on Monday, May 7th, 2012 at 10:13 am and is filed under Survivorship, Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

24 Responses to “Private Body/Medical Body”

  1. May 7, 2012 at 10:22 am

    Such clarity.

    Yes, reclaiming the private. You’ve put words to something that is a critical part of the process. Once you start nipple construction…yes, I stopped being as upfront as well. It was the final frontier. And it stayed that way for me. That was my preogative and it is yours, as are all of these breast cancer experiences.

    And yes, I so remember the “Palpation Parade.” Fourteen years later it still makes me shiver. I too, remember looking at DH and the horrible shock and dismay on his face. I also remember how he was trying to keep his face composed, for both our sakes.

    Thanks for this, Lani. Being real is the best possible way to help another woman.

    Love,
    jms

    • May 8, 2012 at 8:15 pm

      “palpation parade” is the perfect phrase. why didn’t i think of that? ;)

      thanks for your support jojo. now and always. <3

  2. May 7, 2012 at 10:54 am

    Lani,

    This is a very powerful post. I remember keeping a mental tally of how many people were palpating my tumor/breasts. After a while I gave up, there were too many to keep track of. My hubby and I exchanged that same look you and your husband did. “New bizzaro,” that fits perfectly.

    Like you, I believe silence and not talking about these very personal experiences just makes them that much more lonely. It’s hard to talk about such personal matters. I found posting about things like nipple reconstruction to be extremely awkward, but therefore, all the more necessary somehow. Thank you so much for not being silent. You are helping so many others, Lani.

    Finally, I’m thrilled that your medical body is once again becoming your personal body. That’s as it should be.

    • May 8, 2012 at 8:14 pm

      maybe once our voices raise a chorus, we will be heard. thank you nancy. i really appreciate you.

  3. lisa k hair
    May 7, 2012 at 11:00 am

    I am so sorry for all of the medical body issues you went through. I was fortunate enough to be treated in a women’s cancer center by only women doctors, techs, etc. I made a large sign and posted it on my door to under NO circumstances turn the overhead light on ever, not even in the daytime. I get headaches from sudden bursts of light, and when I’m not feeling well it almost disorients me. All but one person respected my wishes, and that was because I was going south fast and about to code. She later actually apologized to me!

    I am a big fan of you posts and links, I just wish I’d found them while I was going through my cancer journey instead of a year afterwards. Keep the faith!

  4. May 7, 2012 at 11:19 am

    It is truly amazing what indignities we end up getting used to, although that doesn’t mean we end up feeling blase about them. Maybe just better able to tolerate them because they don’t all come as a surprise anymore. And then there is the infrequent and unexpected…like nipple surgery.

    And I can name something else no one wants to talk about, which I talked about: having a colonoscopy.

    Oy. Oh, CB, let this truly be for you THE END. xoxo

    • May 8, 2012 at 8:13 pm

      from your mouth to God’s ear KK!! xoxo

  5. May 7, 2012 at 12:39 pm

    Oh the medical body, a state in which it’s okay to flash an entire hospital ward. For the scans and treatments, we need to show the goods. But having said that, I highly value consideration in a health care practitioner. Having random people ‘show up’ during scans is awkward. Even a simple introduction can help establish a bit more trust and comfort.

    • May 8, 2012 at 8:13 pm

      exactly. a simple introduction shows a sense of respect. i get that i was treated in a teaching hospital, but the dignity thing can use a little ramping up.

  6. BlondeAmbition212
    May 7, 2012 at 2:10 pm

    Lani, I just finished my nipple reconstruction in November and your post completely resonated with me. Due to various commitments, my reconstruction (start to finish) spanned a little over two years. But you articulated all the feelings so well.

    Reading the other comments, I realize that I have in fact begun to reclaim my own body as well. Where I at one point sharing our surgical milestones was very common and comforting within the confines of our group, I have (finally) begun to embrace the new parts as actual breasts rather than a novel science experiment, i.e. they’re no longer for show.

    I hadn’t thought of it as reclaiming my body, but I realize that is exactly what it is. That doesn’t mean I wouldn’t show them to another BC patient that might need some reassurance, but it represents closure to a very invasive chapter of our lives.

    Oddly, I celebrated my birthday last week and always throw a big party and this year, it did not include any of the women I met in my group. This was not by design, but it dawned on me that 3 years out, we’ve gone on to live our lives. We are still in touch but the relationships are no longer defined by BC. Some have become close friends and confidants but our personal lives do not necessarily intersect socially. I hope that came out the right way, I just thought it was an interesting observation.

    Best of luck with your final procedure and for writing such a strong post.

    • May 8, 2012 at 8:12 pm

      wow, not being defined by BC sounds wonderful. i will let you know if i get there too! happy birthday.

  7. May 7, 2012 at 8:05 pm

    Lani, I also want to read Susan Gubar’s new memoir. Just from the brief accounts I’ve seen of it, she seems to give voice to that “unanticipated, unrecognizable corporeal suffering” you refer to. Articulating those experiences and sensations, as well as how we feel about that, is truly incredible. May you continue to find the voice for yours. Thank you, as always, for sharing yourself and the bizarro cancer world so openly with the other bizarro world. — Gayle Sulik

    • May 8, 2012 at 8:12 pm

      thanks, gayle. we should have a “reading group” on her memoir! i appreciate your comments.

  8. May 7, 2012 at 8:40 pm

    What a milestone. It is time for the list of “next procedures” to end, cut down on doctor appointments and reclaim your body and a little bit more of your “normal” life.

    • May 8, 2012 at 8:11 pm

      oh mandi… that would be amazing. after all this time, almost hard to imagine!

  9. May 8, 2012 at 9:55 pm

    I’m thankful too.

    When I was in the hospital for c-diff (fulminent, septic, dangerous c-diff) I heard myself referred to as “The Mestastatic in room four.” (I have terminal, metastatic breast cancer.) I wasn’t even IN for cancer, yet that’s how I was referred to. Not as a person, not Ann in room four, or not as the Patient in room four, but as the Metastatic. I was purely the medical body – the piece of wood these carpenters had to use their tools on. I am never going to describe what I went through during those horrifying days but needless to say, I was pure body in every sense of the word and I never want to be that again.

    But, I have terminal cancer and so that is all there is for me. “private” body are over. I belong to the medical profession now.

    • May 9, 2012 at 11:37 am

      Ann, this is just devastating. Devastating.
      When my brother had terminal cancer, the people who restored us to feeling like he had a feeling body again were the hospice nurses. They were kind, emotionally attuned, compassionate to him and to us. People don’t like to talk about end of life issues, but I am glad that you are. I urge you to consult with hospice now, even if you don’t enter it yet. It’s counterintuitive, but people tend to live *longer* when they enter hospice. I think it is due to the relief of no longer having to endure the harshness of treatment and the constant insults. To be able to face what is coming. It is my wish for you that you can find a way to reclaim your body and your self for the full, lively, spirited, hilarious, and honest person that you are and will be as long as you live.

  10. May 9, 2012 at 3:24 am

    Glad to hear that even though you’re getting your “private” body back, you’re willing to share the thoughts and experience with us.

    (Also? Nipples! Yay!)

    • May 9, 2012 at 11:38 am

      I probably should call them “nipples” but yeah. I’m psyched.

  11. May 10, 2012 at 11:51 am

    Chemobabe:
    thanks for sharing this — you’ve movingly explained the anguish of replacing your private body with a medical one. Metastatic bc patients live with this the rest of their lives, but we are grateful that some of you can reclaim your private selves.
    thanks for all you are doing to elucidate bc issues and also support stage IV patients.
    ginny

  12. May 10, 2012 at 11:01 pm

    While i have not been able to come to our #BCSM Tweet Chat I wanted to read a few blog posts so I could keep up with you. You are such a wonderful friend/teacher/mentor to so many. Thank you for sharing such intense insults to your body.

    Reading the many insults that have occured to your body,mind and soul list just makes me that much more passionate about the #epatient movement. How people sleep at night knowing they have caused pain, embarrassment and indignity to those they are called to serve is beyond me!
    I promise I’ll keep you in the Light tomorrow.
    Lisa

  13. May 11, 2012 at 9:59 am

    Lani, such a good, important post. I had such a hard time with this and have also written about basically, strangers, coming in and feeling me up. I felt the need to know something personal about them since they’re actions were so personal. Almost like I needed to have a drink with them first… anyway, we do what we need to. As for nipples, nothing is stranger than talking about getting new nipples, well except for actually “getting” new nipples. Kind of like Nancy said here, it’s important to write about it. We get it, thanks. xoxo

  14. May 14, 2012 at 1:55 pm

    Wonderful that you are getting your private body back again. I’m sorry that so much time must elapse, though, between treatment for the cancer and taking your body back from the medical molders. I applaud your resilience. xx

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