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Planned Maintenance

Updated on May 17, 2009

The "Before" Photos

The pre-surgery photo of my "mommy boobs" that have fed two babies.
The pre-surgery photo of my "mommy boobs" that have fed two babies.
A larger profile...uhg! And that's after losing 20 pounds as of this morning.
A larger profile...uhg! And that's after losing 20 pounds as of this morning.
Unfortunately, this camera points out every pregnancy stretch mark and scar. How can this ugly, droopy belly possibly produce attractive breasts?
Unfortunately, this camera points out every pregnancy stretch mark and scar. How can this ugly, droopy belly possibly produce attractive breasts?

You know how websites periodically disappear to carry out "planned maintenance" for an hour or two? That's what my body is about to do. My conscious mind will be shut down for 10 or so hours while two surgeons and countless support staff work on my body like a piece of meat until I have my breasts removed and replaced with skin stolen from my belly before waking up with, as websites call them, new skin; a new overall appearance.

"How do you think you'll react when you see it for the first time?" asked my UCSF shrink about the first time I will look down at my chest after the surgery.

Of course, when I wake up, my breasts -- or what the doctors will call breasts and I'm not sure I can call it more than extra skin -- will be covered by sterile bandages. I imagine there will be bumps of some kind that resemble breasts. I just don't know what to expect once those dressings are removed.

"I honestly don't know. I know there will be little I can do at that point; I'll never get my breasts back. And what about the knobby scars left on my belly from when they took my ovaries? Will those look like oddly-positioned nipples on the sides of my tits?" I pointed to various, unbalanced positions on my breasts. "I just don't know how I'll react. I don't want to freak out completely." I could ramble on about my tits for a long time if she let me, but my shrink gave me "homework" that, I confess, I have forgotten by this point.

I'm supposed to visualize, uh, something or other. I don't know. These days, my mind is forgetting anything I don't write down. That's okay; it just feels good to talk to someone (other than my family) about what I'm facing in five days hence. She suggested I go to the cancer resource library and check out a CD that will help me relax for my surgery.

"There isn't one specific CD she's talking about...," the woman working in the resource center wasn't kidding, "...but you're free to look through this area for a CD." Shelves and shelves of cancer-related resources lay before me. "What kind of cancer do you have?" Crap; that question. I felt my body tense.

I hate answering that last question. When most people find out I'm having a bilateral mastectomy by choice to avoid my dangerously high chances of getting breast cancer since I tested positive for the BRCA genetic mutation, they generally look at me with confusion followed by the question, "Why would you choose to do that to your body if you don't have cancer? Why not just keep getting mammograms?" (A healthy BRCA gene prevents specific forms of cancer tumors from forming; breast, ovarian, prostate, pancreatic...).

So, to answer the cancer resource lady's cancer-type question, I cringed slightly and almost apologetically replied, "I don't have cancer," surely, unlike most of the people who utilize the resource center. I added, "I tested positive for the BRCA gene." Thankfully, that was all I had to say. There was no judging, no questioning my choice or my sanity, no looks like I had fallen out of a tree for trusting these people to slice through my body. She didn't offer her advice, only, help.

Whatever rocks your boat...

Things I'd Rather Be Doing Tuesday Instead of Surgery

Surgery on Tuesday is not my idea of fun, but if the doctors could fix me without cutting, I'd trade that horror for:

  • Cleaning my house. Yes, as much as I hate this task (sorry, Martha. I know I've let you down), I think I would be able to make a grand effort to clean my cluttered home. And now that my house cleaner cancelled her scheduled day prior to my surgery and before my neat-freak aunt is coming to stay with the kids to help us out, it looks like I'm forced to make an attempt at cleaning my house anyway. Should I clean up the cookie crumbs on the kitchen floor now? Or wait until Monday? Hmm, tough choice;
  • Cooking a gourmet meal for a bunch of Obama-bashing republicans. Okay the secret is out...I'm a democrat. And to make matters worse, I'm married to a republican who, in his younger days, actually worked for Jesse Helms. (Regardless, Mark did vote for Obama...he showed me his voting tag);
  • Spending a month alone in a small room with my sister listening to her complain about the republicans and Fox News and, well, you get it;
  • I'd gladly give up all the bags and boxes my OCD tells me I need to save so I can use them for something else instead of throwing them in the recycle. "Can I recycle this one?" My husband has learned to ask because I have freaked out in the past when he threw away a "good bag" I wanted to keep. In fact, just now I emotionally allowed my husband to recycle the plastic zip container a mattress pad came packaged in -- the pad I bought for the extra bed where my aunt will be sleeping next week. "You can do it, just leave it. Back away from the bag," Mark talked me down off my ledge. I cringed and shook my hands a bit, but I did it. I did it! "And tomorrow, we're going to throw away a box and then we'll toss one of those Macy's bags. It's a 3-step process and you can get through it."
  • Spend quality time with our cat Lucy. She's old and a bitch. She pushes all my buttons and has a screaming meow that annoys the shit out of me, especially at night when she stands outside the kids' rooms and cries. Or when she cries to get out of my bedroom at 3 a.m. and my "Get out of here you stupid fucking cat," wakes Mark. The little bitch adores Mark and wants nothing to do with me except annoy the crap out of me. But I would spend time with our old fat cat if I could avoid the pain and recovery.

That's the short list. I think I've annoyed you enough.

Help Sans Judgement

"Oh. You'll want to look in this area." She pointed to all the books, VCR tapes and CDs on a few shelves devoted to breast cancer and then to some other general surgery related resources.

I found the CD, "Pre-Surgical Guided Imagery Program," took it home and made several attempts to listen to it and de-stress my mind in between snapping at the kids to be quiet or leave the kitchen and instead make noise in the living room or upstairs, and when the phone wasn't ringing with various cousins calling me to see how I was.

You're making the right decision, three cousins told me today (We'll call them Stella, Sheri and Kay, but you know who you are). You'll be fine. You'll pull through and be glad you did this. They all told me what they thought I needed to hear. "How are you doing?"

"I'm pretty fucking freaking out, that's how I'm doing. I'm terrified."

"Of what? The surgery?"

"Actually, mom is more worried about the surgery than I am. She doesn't like me being on the table for 10 hours. But I figure, that's the least of my worries. If I don't wake up, then fuck it. I have nothing to worry about. It's the pain and long recovery time afterwards I'm terrified of."

"Yeah, but we are fighters in our family," said Kay. "Look at your dad. He should've been dead 20 years ago." I laughed. She was right. Regardless of the diabetes that regularly finds new ways to steal my dad's youth and vitality, he has outlived the potential death age based on his parents and only sister. They all died relatively young and my dad will be turning 80 the month after Jesse's upcoming bar mitzvah.

Still, it's easy for someone else to say I'll do fine. They're not the ones who are going to have an epidural for the first three days after surgery loaded with an abundance of narcotics that will help me maintain a loopy state of mind (I hope) and a bowel that won't move because of all the drugs. They're not the ones who are going to have to get themselves out of bed for the first time and hold a pillow against a belly with a slit stretching from one hip to the other.

I know they mean well and they are caring enough to call and want to visit, but the path I have chosen has been one filled with anxiety, crying, depression, sadness, loneliness, anger and, one I hadn't thought about before my best friend (I've known her since high school) asked me, "Are you mourning for your breasts?"

I hadn't thought about it that way. Yet, I suppose that is what I am feeling when I think about how it will be to look down at my chest for the first time after my surgery. If things go as planned, I'll at least have some sort of breast-like mounds, unlike what happened to my sister's breast this past year when she went through her second round of breast cancer. The expander they placed in her breast became infected causing her extreme pain and suffering until they finally took it out.

What remained on her chest wall was a mound of mangled and scarred skin that looked like raw ground chuck. I wish I hadn't seen what happened to her. I might have been able to look another time, but this year, having seen that unnatural vision only left me with fear and terror of what could happen to me.

I'm crazy to do this procedure, my brain tells me on a regular basis as some sort of instinctual survival mechanism kicks in. But then logic strikes and I see the faces of my children.

I have to do this, if only for my babies. I have to do this so I can see them grow and reach their own milestones. I want to be around for their first dates, proms, graduations, college, love, successes, weddings. I want to be around when they fall and need help; when they suffer and need aide. I want to be there for them like my parents, my mom especially, have been here for me whenever I needed them; just as my mom is going to stay with me overnight in the hospital those first few nights serving as my advocate following my surgery next week.

When this all began last August and I found out I tested positive, the people around me said it's better to know so I can better choose my path to protect my body from the ravages of cancer. I know it is better to know, but I hate knowing about this fucking gene. I didn't want to take the test for many years because I was afraid of how this knowledge would affect my life and that of those around me. And the hell this knowledge has created in my mind since last summer has become increasingly unbearable.

Since finding out the test results, breast cancer has been the first thing I think about when I wake up and the last thing I think about when I close my eyes at night. I'm tired of thinking about it. I'm tired of thinking, is this the day I find out I have breast cancer?

Too much to deal with

Dry mouth, radiation therapy, nausea, vomiting, fever, and the list goes on...
Dry mouth, radiation therapy, nausea, vomiting, fever, and the list goes on...

It's like after my eldest sister died (she had just turned 19 and I was 12). Over the years, the agony of her death might have become more manageable, but that pain never went away; you don't simply get over something like that. There's not a day that goes by that Renee doesn't enter my thoughts, and now when I need her most, she's not here to offer the comfort only she was able to offer. (And yes, I have another sister, but after all the shit she's gone through with cancer, I refuse to burden her with my crap. She's moved back to her apartment in another city a plane ride away and she's starting her life again -- until her next surgery on her new breast after another expander was installed.)

After Tuesday, after they cut off my tits, I drop my chances of getting this cancer to almost nothing. Almost nothing. I still have to be screened every year; blood, MRI, doctors. It will never leave my mind and I despise that knowledge. My guard will forever remain fortified, fueled by fear of pain and chemo and suffering and too many lasting side effects -- aching body, sharp pains striking out of nowhere, sensitive teeth, shingles, less strength, back pain, ongoing hot flashes, and too many other side effects my sister has dealt with the past 15 years.

I Hope This Helps!

Listening to the calm woman speak, I feel like a kid at a sleepover and the adults are telling us to be quiet and stop talking.
Listening to the calm woman speak, I feel like a kid at a sleepover and the adults are telling us to be quiet and stop talking.

What Works for You?

What works for you to calm your senses before a big surgery, exam, recital, or whatever?

See results

Do Not Operate Heavy Machinery While Under the Influence

So now I have this CD to listen to that's supposed to take the edge off of all these monstrous visions in my head and questions in my mind. Questions that include things like, what will that new skin feel like? My sister says it feels numb. I notice I've been running my hand along the skin of my breasts over my nipples to try to remember what that sensation feels like. Will I remember what it felt like? Will I freak out on the day I can't remember that sensation just like the day I ran home crying to my mom because I could no longer hear Renee's voice? Her laugh? I felt like I had betrayed my sister's memory when I couldn't remember those things. Will I feel like less of a woman when I lose these physical things that have brought pleasure or have fed my children?

Shit! Listen to the fucking CD!

It begins with a woman trying as best she can with her most calm, soothing voice to explain the benefits of guided imagery and how it is supposed to help speed up recovery. She says the listener may even want to listen to this CD with headphones during the surgery. Actually, her "soothing" voice is almost annoyingly so at this point.

But finally, something she said did make me begin imagining a scene, except it didn't provide the calming response the voice was shooting for. Rather, just like a prescription bottle of vicodin or codeine that warns not to operate heavy machinery, the woman's soothing speech made me laugh out loud.

"...and because this method deliberately encourages this dreamy mind state, please don't play it while driving."


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    • thebigidea profile image

      thebigidea 9 years ago

      I just went through this last year. You made the right decision. Thank you for the great Hub. I look forward to reading the rest of them.

    • Joelle Burnette profile image

      Joelle Burnette 9 years ago

      Thank you everyone again and again for your support and well wishes.

      Rach (aka: Be Successful), Thank you for your story about your strong mother.

      Her long battle with cancer brought tears to my eyes knowing her future (and that of you and your family) is faced with grim reality. I know what a strike cancer brings to any family; what death can do to a family.

      I can only hope you have people surrounding you who can bring your family strength; not through sad expressions and tears, rather by boosting your spirits when you need it most, offering a hand to hold if that is the only thing they can offer, bringing by a plate of food so you have one less worry, and any number of simple acts of kindness that will lighten the load you carry in your heart, mind and spirit.

      I hope you have some close friends or family that give you the support you need through this difficult time. Just remember, don't become bitter when everyone disappears and you're suddenly dealing with your mother's death on your own. Just as after my sister died, most everyone left to continue with their own lives; my family and I were left with our own thoughts and long healing process.

      I'm glad I made the decision I did and have people such as yourself who support my difficult decision as well.

      I wish you and your family all the best in the difficult months ahead.



    • profile image

      Laura Alexander 9 years ago

      Hi Joelle,

      I'm glad to hear you're back home! There's no place like home... I hope things go smoothly and I look forward to seeing you soon. You are my hero! Laura

    • k@ri profile image

      Kari Poulsen 9 years ago from Ohio

      What a difficult decision. You are a very brave woman and I commend you. I do not know if I would even have the strength to find out if I tested positive with the gene. You are amazing!

    • MoniqueAttinger profile image

      MoniqueAttinger 9 years ago from Georgetown, ON

      A moving Hub... Both an honest and well-written Hub that should be required reading for doctors before they start "practising" medicine and thinking that they are working on a "patient" and not a person.

    • Joelle Burnette profile image

      Joelle Burnette 9 years ago

      Ripplemaker, thank you for the hubnugget nomination! Especially, to find out while I'm stuck in the hospital...thanks for the support and well wishes. They are much appreciated and warmly accepted.


    • ripplemaker profile image

      Michelle Simtoco 9 years ago from Cebu, Philippines

      Hi Joelle, I hope all will be okay for you. My prayers will be with you.

      By the way, have you heard the news? This hub is a hubnugget nominee. And to check what it is all about just go to this hub by clicking this link:

      Congratulations. :-) Much love and light...

    • Jerilee Wei profile image

      Jerilee Wei 9 years ago from United States

      Having had this done in November, it really wasn't that bad. Hope it is the same for you. I know first hand how scary this can be. I was back writing hubs two days later. Only bad part was the drains and not being able to drive. Best of luck and well wishes.

    • Joelle Burnette profile image

      Joelle Burnette 9 years ago


      I'm surprised you read beyond the photos of my dumpy belly. I wasn't sure if it was a good idea to post those photos, thinking people would go away running and screaming upon viewing the disaster that is my post-pregnancy belly. I don't look much different from the model in the erase-your-stretch-marks-in-a-month mouse-over ads that keep popping up alongside my stories. If only my surgeons could use a mouse instead of a scalpel.

      Thanks for commenting!


    • profile image

      shari gail 9 years ago

      Remember I told you yesterday I am "half of a glass full" kind of person. So I look at your situation and I can't help myself but to think of the positive side of all this!!

      I look at how incedibly brave and proactive you are, with the knowledge of being BRCA + you are doing something to prevent your predicted 90% chance of getting Breast Cancer and knocking it down to practically nothing!! That's really something to be proud of yourself for!!!

      As you know there are alot of women in your situation that couldn't make this very difficult decision to have this kind of surgery without having cancer first!! You are helping to ensure a long & healthy life with your crazy family!!!

      And I look forward to getting to know you better over the next several months!!


    • GeneriqueMedia profile image

      GeneriqueMedia 9 years ago from Earth

      "What remained on her chest wall was a mound of mangled and scarred skin that looked like raw ground chuck."

      Thanks for helping me stick to my diet. ;) And here I was, about to cave in and have something for breakfast...



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