What's one more surgery thrown on the pile?

A relaxing lunch with mom after my checkup

Thanks, mom...you always come with me to my UCSF appointments to keep my mind off of all the unhappy experiences associated with that location. Glad we can spend time and hang out after the appointment during a relaxing lunch at the Cliff House.
Thanks, mom...you always come with me to my UCSF appointments to keep my mind off of all the unhappy experiences associated with that location. Glad we can spend time and hang out after the appointment during a relaxing lunch at the Cliff House.
The view from our table at the Cliff House.
The view from our table at the Cliff House.
The view from our table at the Cliff House. Mom always talks about walking on this beach when she was a child growing up in San Francisco.
The view from our table at the Cliff House. Mom always talks about walking on this beach when she was a child growing up in San Francisco.
I hate showing how much weight I've gained, but at least I have my mom to hang out with.
I hate showing how much weight I've gained, but at least I have my mom to hang out with.

An 18-month update

It’s been nearly a year and a half since I had my big surgery -- prophylactic bilateral mastectomy and TRAM Flap reconstruction -- and it appears there may be a complication that could require surgery.

Okay, anyone who knows me realizes I am going to see the worst in any situation before going toward the light and struggling to find the positive side. Positive side, hmm. I’m trying. Well, first an explanation.

Enough time has passed with everything healed up and scarred over so the parts of my body look like a not-so-pretty graffiti rendition of Frankenstein train-track lines that periodically surprise me when I see them reflected back at me in the bathroom mirror. Those are the moments when I finish drying off my freshly showered body, remove my towel and stand motionless, stunned as I look and think, that’s not me. It’s more than just getting older and not recognizing the face looking back at you in the mirror; these are moments filled with flashes of self-doubt about the decision to let doctors slice me open and steal parts of my body just to leave scars and nearly square mounds of heavy flesh where my supple, natural breasts used to be.

Most of the time, I ignore the scars, but sometimes, like the other night, it’s difficult not to miss my former mom-boobs. I was watching “Boardwalk Empire” on HBO and there was a scene with a bare-chested woman reclining in bed. I imagine, because the show is set in the Prohibition Era during the 1920s and 1930s, they cast women with natural breasts as opposed to the modern boobs that don’t move, jiggle, sag.

As the woman on the screen moved to lay on her side, her youngish breast gracefully moved with her turning body and changed its shape as she shift her body. Moreover, I thought about her breasts’ areolas and nipples and started to tear up at the thought of my mounds of flesh absent of these naturally beautiful creations and how no man could ever look upon my chest with the same desire as they would at her natural breasts. I flashed back to that horrible DVD I watched prior to my surgery and how I had a mini-nervous breakdown at the sight of photos of the women who had this terrible surgery.

I realize I could still get tattoos to create the look of areolas and I could have surgery to form ever-erect nipples. Others may choose these options, but when considering my own body, those substitutes are not my idea of a reasonable option, especially when I look at the large scars remaining on my breasts. It would never feel natural, so what’s the point?

“But you don’t have cancer, you won’t get breast cancer, you won‘t go through chemo and your hair won‘t fall out,” my husband says to me when he notices my sudden looks of panic or when I ask him if I was crazy to go through with this surgery that can still leave me with too many private tears (I so need a shrink!).

“It might be cheaper than getting a hair cut,’ I tell a very bad, sick joke -- fuck it; that‘s how I deal with any shit in my life. “With our budget, why do you think I’ve been letting my hair grow out?”

“Shut up. You’ll be here for the kids to grow up and that’s what’s important,” he always tosses in the “child argument” as he attempts to help me release the dark side of my emotions, thoughts, feelings, fears, anxieties, anger, self-loathing and the general idea I feel like a loser who hasn’t accomplished anything substantial or worthwhile in my now 45 years (as of last week’s Halloween). After all, I never did go to the Olympics as I had planned when I was a child filled with hope (at least before my sister died when I was age 12. Hope? Fuck hope. I live in the real world where my breasts and ovaries are sliced away because of some stupid genetic shit I have absolutely no control over.).

Breathe. Back to the issue at hand.

The long view of the upstairs restaurant (they don't serve the delicious fresh buns at the downstairs restaurant, so mom always wants to eat upstairs.)
The long view of the upstairs restaurant (they don't serve the delicious fresh buns at the downstairs restaurant, so mom always wants to eat upstairs.)
The Cliff House in San Francisco. I've been going there with my family since I was a child.
The Cliff House in San Francisco. I've been going there with my family since I was a child.
On the right are what's left of the old pools down the hill at the Cliff House.
On the right are what's left of the old pools down the hill at the Cliff House.

Let me live in the land of denial for a while

I went into San Francisco yesterday with my mom to go back to the UCSF Breast Care Center for a checkup of my newish (kinda like a roof that was replaced more than a year ago, but you can’t say it is new if you go to sell it) chest mounds and to find out if the ongoing pain in the stomach area below my right “breast” is something I should be concerned about; if it’s something that can be fixed.

I hate the long, 1-½ hour drive into the city, but mostly I hate going to UC. The mere thought about going to that place creates waves of queasiness after having gone through this crappy BRCA process. And walking through the doors of the Breast Center into the back offices where my life was turned on its head makes me feel like I’m going to vomit.

Whenever they take you into the back, the first thing they do is take your vitals in this area set up in the hall just inside the door leading to the exam rooms and genetic counseling offices. I knew what to expect and sat down in the chair next to the blood pressure machine.

But when it came to taking my weight, they were no longer using the old-style doctor’s scale -- I hated that nasty, lying fucker. The nurse walked me over to a new scale. Like a Murphy bed, she lowered the oversized base of the scale; a large sheet of metal big enough to roll a wheelchair onto (I‘ll need that for when my weight goes completely out of control more than it has). After she zeroed the scale, I stood on the silver base and red digital numbers showed up on the black screen. I couldn’t help but burst out laughing.

You can’t go by that number, the nurse told me about the red digits displaying less than 100 (no, I’m not going to tell you the amount). “We’ve gone to the metric system,” she said while I laughed.

“That’s the best news I’ve gotten in this place in two years,” I said through more laughter.

“Do you want to know what it really is,” she asks me, attempting to place a damper on my momentary joy. Hell, no!

“No,” I tell her.

She says, if I want to know what the amount is, simply multiply it by 2.2 to change the kilograms to pounds. Screw that…let me enjoy that low number for a while; one I haven‘t seen since I was a scrawny thing back in high school.

"Are you in any pain today?"

Are you in any pain today, she asks. That question always makes me laugh or choke.

I’m given a pain form to fill out in the room after she leaves. It describes how to consider the meaning behind the numbers one through 10. I’m staring at it and my mom asks, what’s wrong. “After what I’ve been through, I never know how to answer this question. These numbers don’t make sense anymore because of the TRAM.”

I continue filling out the pain sheet. Circle the appropriate pain description…sharp, yes; gnawing, yes; deep, yes; stabbing, yes; and the list goes on. What makes the pain worse…standing still, sitting, walking, bending over, standing up, etc. “What makes the pain go away,” I read to my mom before responding, “Drugs.” I remove my shirt, put on the robe that never fits me, and wait for my breast lumps to be examined by the ever-serious Suzie Eder.

I explained about the pain and show her the spot where the pain tends to focus. I explain how not a day goes by when it doesn’t hurt and it tends to hurt the most if I bend over to pick up something and when I try standing up from a seated position.

When I finally get a few minutes at the end of the day to veg in front of the TV, I explain, it’s gotten to the point where I don’t want to get up because I know what’s about to happen. I tell her how when I go to stand up, I’m dreading the pain that is about to overwhelm my insides and cause my face to cringe and contort reacting to the pain like someone is stabbing into my body with a large, jagged hunting knife.

“Well, that’s not good,” Suzie responds. I ask if there’s anything that can be done, or if this is the way it will always remain? She orders an ultrasound. I’ll need to return into the city in a few weeks for that and to see Dr. Foster, my plastic surgeon, to discuss the results.

It sounds like one of the muscles they moved from my abdomen up to my chest lumps (to provide blood flow to the new breasts) could be, well, wound too tightly; there may be scarring causing the ongoing pain.

And how does that get fixed? Surgery. What joy is mine. Let’s just hope, if that turns out to be the case, this can be done with small laparoscopic incisions rather than creating more Frankenstein love bites.

Frankenstein...Halloween...mummy...my birthday and a bad joke!

More by this Author


Comments 11 comments

Laura Alexander 6 years ago

Sorry to hear about the ongoing pain. You never show it outwards if that helps.


Carol Kidd profile image

Carol Kidd 6 years ago from New England

I can appreciate what you are going through emotionally. As a two-time breast cancer survivor, I opted for a bilateral mastectomy after the second diagnosis. It took 2-1/2 years and several reconstructive surgeries to give me a slammin' rack. Fortunately, things worked out for me. I am involved with a breast cancer resource foundation and know several women who have similar stories to yours. I hope things work out for you, and know you are not alone. Best wishes to you.


stephhicks68 profile image

stephhicks68 6 years ago from Bend, Oregon

Breast cancer is a tough thing to fight - good luck!


Joelle Burnette profile image

Joelle Burnette 6 years ago Author

This sounds ridiculous to say, but I don't want my readers to think I had/have breast cancer. Now, this entire process seems crazy...that is until you know my family history of breast cancer and my BRCA genetic status that placed me at extremely high risk of getting breast cancer. Please read my other stories so you'll understand better why I chose this path.

Thanks again for reading!!


Joan Olsen 5 years ago

I just found your site and I wish I had read it before October 8, 2010. That's the day I had my bilateral masectomy tram flap surgery. My doctor told me all about the surgery, but of course couldn't really tell me about the recovering process other then it would take a long time.

Your writings have made me cry and laugh (more laughing then not). Everything you described about your early on recovery period is everything I'm going through now. The only difference is I still (after three months) have a hole right in the middle of my belly incession. The tissue died but wasn't detected until two weeks after the surgery due to the bandage that was hiding it. Anyway, it's healing more and more, but other then that I feel great.

Please keep up the writing, so I know what to expect in the months to come.


Tori 4 years ago

I'm 3 weeks post op. Your blog has given me an idea do what to expect. Love the humor and need the laughs. Keep blogging, please.


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

Thanks, Tori.

There's more laughs and sarcasm in my book, "Cancer Time Bomb: How the BRCA Gene Stole My Tits and Eggs." Check out my website... JoelleBurnette dot com.

I hope your healing is quick and uneventful.

Joelle


Tori 4 years ago

I will check out your book, and website. Tonight, I feel like I'm wearing a to tight pair of low rise jeans that I cannot take off. Oh yay! (sarcasm).

Tori


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

Hi Tori,

It will be a while before that feeling goes away. I didn't like the feeling like you're never without a bra. Eventually, that goes away, too.

Thanks...hope you like the book.

J


Tori 4 years ago

Hi Joelle,

Working on 5 wks post op. glad to know the corset feeling eventually goes away. Also, looking forward to the day when the tightness that runs vertically from below my 'ab boobs' (new word for boobs) all the way to my, well, groin/hips loosens up. I'm having a down day and learning lots of patience. Again, thank you for sharing your story and for your humor.

Tori


Joelle Burnette profile image

Joelle Burnette 4 years ago Author

Hi Tori,

Glad to hear you are well.

Cheer up...it will get better!

Joelle

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