My super-awesome double mastectomy (part 2): I HAVE NO NIPPLES!

Ask me to show you my boobies and I’ll likely do it. It’s not that I’ve become more liberated since having a double mastectomy and reconstruction, or that I’m particularly interested in giving anyone nightmares. Honestly, it’s more like the boobs that elicited modesty, that were actually the boobs I was born with, are gone and in their place are two mounds of flesh that are way perkier but still not my boobs. They’re just that leftover belly fat I bitched and moaned about, the stubborn postpartum pouch.

Hey now, that's an idea!

And one other minor detail: My breasts have no nipples right now. I know that blows some people’s minds. Nipple-sparing mastectomies are common these days, but the invasive mass in my right breast was directly below the nipple. Thus, off with my nipples! When I told one of my friends this, her husband pointed out that if I went topless on TV, I’d need no blurring out. After all, that most “offensive” part of the breast is not there anymore. So I guess now would be an excellent time to get my topless talk show deal inked. CBS, NBC? ABC Family? Anybody?

Anyway, instead of nipples, I have surgical incisions that form a circle on each breast. The nipples will be rebuilt at a later time, and the pigment tattooed on. My first tattoo. Maybe I’ll get my nipples in the shape of stars or hearts. Or a nipple-within-a-nipple. That would be mind-blowing.
Heather and the new girls

I don’t even remember the first time I saw “them,” my new breasts. It actually didn’t occur to me to look at the surgical aftermath till some time later. Maybe a little part of me was slightly afraid. I don’t know what I was expecting to find. My breasts fashioned into a nifty Jell-O mold? Gargoyles?

But I do remember peeking at them, finally, in one of those first few days, when the nurses were stalking me with the Doppler—every hour on the hour—to make sure the wonderous sound of blood flowing through the arteries could still be heard. The new girls actually didn’t look bad. They were pretty bruised up, like sorority girls who had accidentally wandered into a biker chick bar. They were also more voluptuous on account of them being so swollen.

This was NOT how Sal reacted the first time
he saw reconstructed breasts,
although some men apparently do.

The first time the nurse did the Doppler check with Sal in the room, she asked me if I wanted him to stay. I guess some women are uneasy about their husbands seeing their breasts in that state, or maybe some husbands are the fainting types. But whatever. I was smart enough to include a “for richer or poorer, in sickness and in health, with or without nipples” clause in my wedding vows.

What really threw me for a loop was the first time I was allowed to get up and move around. That’s when I noticed my abdominal incision went a little beyond hip to hip. This cut gave me another fun idea: Maybe Sal and I could go to my plastic surgeon appointments with Sal dressed up as a magician carrying a saw, and me as his assistant. I’d wear an incision-baring outfit and we’d sit in the waiting room, bemoaning our failed magic trick. Hey, come on! Some people might find that funny, right?

But I digress.  From what I’ve been told by any number of nurses and doctors who came in to study and snap pictures of my boobs with their smart phones—uh, I’m pretty sure they were part of my medical team—my boobs were a thing of beauty. I saw the breast surgeon and the plastic surgery folks at least once a day, and each time that post-mastectomy bra came off, there were oohs and ahhhs. I felt like a Lord & Taylor holiday window display. Everyone agreed: I ended up with very good results. Most likely, the very thing that sucked so badly about this whole ordeal—my young age—was also my saving grace in aesthetics and healing. One of my ICU nurses had told me that she had taken care of a patient whose breast flap had failed. I shuddered. I couldn’t imagine going through all of this, only to have to go back to the drawing/cutting board.

Going home

Me and My Drains: a topless daytime talk show,
premiering in January on NBC.

I “busted” out of the hospital a day early, on Nov. 15, tethered to Jackson-Pratt drains (or bodily fluid and tissue hand grenades, as I like to call them). There were four total, draining my surgical sites and killing all desire to ever eat chicken broth and wonton soup again. My task at home would be to squeeze the ever-living shit out of the drainage tubing to keep the flow going. The nurses and doctors called this “milking the drains,” which is not to be confused with the same phrase teenage boys use.
                Now, for anyone reading this who doesn’t know me personally, you may be taken aback by how I joke about all of this. But seriously, I did all my crying in that first month after I was diagnosed—more than I care to remember. And for the rest of my life, I’ll have cancer and the possibility of recurrence casting a long shadow over me, dogging me at every breast MRI and whatever other testing I have to be subjected to. So I need to keep my sense of humor. I need to laugh in the face of mortality. And you should, too. After all, none of us are getting out of this world alive.

My super-awesome double mastectomy (part 1): a retrospective

In the wee hours of the morning on Nov. 11, I walked into Hudson Valley Hospital Center with the fears of a big surgery in the pit of my stomach and the overwhelming support of friends and family at my back. People were thinking of me, saying prayers—my mother-in-law had written a letter to Pope Francis and gotten her native hilltop village in Italy to pray for me. I mean, really, how could anything go wrong?
             

Grisolia, the outpost for Team Heather in Calabria, Italy

   My heart sunk a little as I approached the surgery registration desk and I saw the sign, which stated no visitors under the age of 14 were allowed on the hospital floors, except for maternity. I wouldn’t get to see my kids till I was sprung from here, I realized. Suddenly, I envisioned myself running out the door and down the road, waving my arms and screaming “Fuck y'all, you ain’t catchin’ me!” like some fugitive on “Cops,” but I stayed put. I think I deserve some credit for that.
                Much of what happened next was a blur of paperwork and formalities. I remember slowly taking off my “FuckCancer” T-shirt and pants and climbing into the nondescript hospital gown. Down in the radiology department, I was treated to the comedic talents of radiologist Dr. Solomon, who, when repeatedly sticking needles into my breasts, warned Sal not to try this at home. Dr. Solomon was the radiologist who flagged my original mammogram, the one that spotted those telltale microcalcifications in the left breast. This time around, he was placing radioactive tracers into my body, which would help the breast surgeons find the lymph nodes needed for biopsy. The nuclear medicine tech assisting him talked about her family back in India; she didn’t see them that often, which made me think of my little munchkins at home and how much I missed them at that moment.

I then found myself sitting in the pre-surgical area, discussing my boobs with the doctors. I talked with Dr. Charles, the main breast surgeon, who had lost her mother to breast cancer. If I was psychic, I would have apologized to the good doctor in advance for the bloody facial my juicy veins were going to give her during surgery (yes, they went there). I also saw Dr. Koch, the lead plastic surgeon. He promised a good aesthetic result.

“I need you to promise that you’ll give me a capital set of knockers,” I said.

“I promise I can do that.”
“No, you need to say it, because you have the British accent and all.”
“I will give you a capital set of knockers.”
I sat back, satisfied with my accomplishment.

Whaaat? You're cutting off my boobies? Whaaaat?

At some point, the anesthesiologist came in and someone in the room said, “Here comes the bartender. He’s got the good stuff.” I don’t remember anything after that; apparently the “bartender” had given me the medical equivalent of Goldschlager. According to Sal, we said our goodbyes, although I had a glazed-over look on my face, not unlike a dead fish or Kristen Stewart on a good day. And off to the OR I went.

Next thing I know, I’m in the recovery room. The surgery had lasted about eight hours. “I want my husband,” I whimpered. “I want Sal… And I have to puke.” The most intense nausea swept over me, and let me tell you, dry-heaving with newly placed abdominal stitches is NOT fun. The nurse gave me some anti-nausea medication and told me to go back to sleep. Who was I to argue?

Around 9:30 p.m., just under 12 hours from when I entered the OR, I was wheeled up to the ICU. The nurses pushing my gurney bragged about their super-awesome gurney-driving skills, then proceeded to crash into some walls. No harm done, though.

The original plan was to spend 24 to 36 hours in the ICU. I spent my entire time there. During those first couple of days I faced the highest risk of developing a blood clot or losing the newly transplanted tissue. So, every hour on the hour, then every two hours as I passed the danger zone, the nurses took a Doppler to my breasts. For those of you who have kids, this sounds exactly like when you’re pregnant and you hear the baby’s heart beat for the first time. Each time the nurse took that Doppler probe to my breasts, I waited nervously for the rhythmic beating sound, signaling blood was flowing through the arteries. Thankfully, we always heard that beautiful sound. There was one area of concern in my right breast, that some venous congestion may be developing, but slapping on the special post-mastectomy bra seemed to help with that. Not sure, but this congestion may have been why I was kept in the ICU longer than anticipated. Or maybe the nurses there just thought I was precious. Yeah, that’s more likely.

My Bair Hugger looked a lot like this, only my head wasn't packaged
like a gift basket

I also had to sleep under a “Bair Hugger” for the first few nights. That’s essentially Amazon.com shipping packaging inflated with warm air to help boost circulation in the delicate area. Good lord, that thing was hot. I felt like one of those years-old hot dogs, roasting in a convenience store display case, no end in sight. So, between that, the Doppler and the automatic blood pressure checks, which the machine performed diabolically, there was no sleep for the weary.

My blood pressure was a source of angst for the ICU nurses. If I had had my wits about me that first night I was there, I could have told them that being immobile in a hospital bed sends my normally low blood pressure into a tailspin, and that there was nothing to worry about. I think I bottomed out at 60-something over 40-something, which triggered some panic and, wanting to avoid a blood transfusion, meant a whole lot of IV fluid was coming my way. Luckily, I couldn’t see my face throughout this, but one look at my bloated Mickey Mouse hands told me that I probably didn’t want to anyway.
                 But damn, did I love me some ICU nurses. I admired the time they had to spend with each patient and loved interacting with them, whether it was talking holistic medicine or debating whether if your husband left you for another man, was that worse than leaving you for another woman? That was my sole “Brokeback Mountain” discussion while an inpatient. I really hadn’t expected any, so that was a nice surprise.

During one of the shift changes, one of my regular ICU nurses greeted me cheerfully, asking me how I was doing. For the life of me I can’t remember how we got on the topic, but she started talking about “home,” which for her was the Philippines. She thanked me as I expressed concern about their well-being, given the devastating typhoon the island nation had just suffered. But they are very poor, she said, and struggle daily. So each payday, she takes a chunk out of her paycheck and sends it to her family. “I could go visit them, but they need that money more, so instead I send them the money I would have used to visit.” So many people I had met here were separated from their families. I was just a day or two from going home to my own.
                I guess we should all be so lucky.

Stay tuned for part 2. That’s when I get to see the “new girls” for the first time.

D-Day: Bye-bye boobies

Today’s Veteran’s Day. I know a lot of people have called me brave, but I think that’s a more accurate way to describe those who put themselves in harm’s way by enlisting in the military. I’m just a chick with shitty genetics and a blog.

It’s also D-Day for me. (Although, not D-cup-Day, because I don't have enough meat on me to go that big. A moment of silence for the lost quips, please.) Yes, these are the last hours I’m spending with “the girls” I've known my entire life—the same girls that held up my strapless wedding dress, the same girls that nourished my two children, the same girls that tried to kill me—man, girls are such bitches! Later today, I’ll be sporting the scars of a double mastectomy, and hopefully the near-final version of super-awesome new boobs.

My pre-surgery checklist

While it seems like this whole nightmare began years ago, in actuality, it’s only been a little over a month since I was diagnosed with bilateral breast cancer. Maybe it’s because I’ve been waiting for breast cancer since I was old enough to detect the familial pattern among the Connors women. Thoughts of these ladies and a million other things are running through my head right now.

God damn, nine hours is a long time to be on an OR table.

Well, I’ll NEVER get life insurance now.

I hope the anesthesiologist knows what he’s/she’s doing.
I wonder when I’ll be able to see my kids. Will Fio be scared? Will Nora try to body-slam me?
The plastic surgeon will be spending a LOT of time ensuring my boobies look good, so no more topless cooking with the deep-fryer for me!
Shit, is this really happening?

It’s been tough leading up to this day. (I did get good news recently: My ovarian cyst has shrunk and the gynecological oncologist I saw thought it was just a hemorrhagic cyst. Yay!) Thankfully, I have an amazing husband, ridiculously supportive family and two adorable and distracting kids. Combine that with all the kind thoughts, prayers, phone calls and food from friends and co-workers, and it’s been a hell of a lot easier to cope.

Thank you, from the very depths of my heart.

And what has really given me that warm, fuzzy feeling was hearing that a good number of you ladies decided to get that first mammogram, schedule a long-overdue one, or undergo genetic testing after reading my PSA. If I save anyone’s life, all I ask is that you name one of your children after me, even if that child has already been born. Really, changing a 6-year-old's name is not that difficult.
               I’ll see all of you beautiful people in a few.

 To be continued…

Say what now? Your guide to breast terminology

                Cancer care involves all kinds of crazy terminology. Between my writing background and what I've learned thus far on this journey, I feel pretty well-versed, so excuse me if I get lax at explaining things. Sometimes when I'm rambling, I leave people looking at me like deer caught in headlights. Or people caught in headlights... as in, like, boobie headlights. Get it? Get—whatever. Anyway, here are eight terms you'll see a lot in my blog, with my usual twisted spin:

They are everywhere, if you just look...

1. Bilateral breast cancer. If you read this fast, maybe you thought my boobs were fluent in two languages. But the word is bilateral. More specifically, bilateral synchronous breast cancer. That’s when freaks like me develop not one cancer, but two breast cancers in separate boobs. I’m the first Connors woman to have this. Such a trailblazer. Bilateral breast cancer doesn’t indicate the cancer has spread from one side to the other. Breast cancer doesn’t usually do that. More likely, these are two independent cancers. Guess who hit up a two-for-one sale at the Malignancy Mall!

2. Boob in the hole! (also known as stereotactic biopsy): The first of my three biopsies, this one tested the microcalfications (see an explanation of that term below). You get to lie down on your belly and let your suspect boob hang down through a hole, which is backlit with this ominious-as-all-hell lighting; maybe it’s to help the radiologist see, maybe it’s for dramatic effect. I dunno. Anyway, since it’s mammogram-guided, you get to have your boob squished a little bit for imaging sake. And you have to stay still, because the radiologist has just precisely mapped out the location of the suspicious area with some insanely hard-to-explain crap like X and Y coordinates and a whole bunch of other stuff that doesn’t make sense to me because I barely passed high school math. Using the tip of a large needle, samples from the area are removed amid what sounds like a cross between a staple gun and a retail pricing gun being discharged. A local anesthetic is used, and in my case, sometimes needs to be turned up a notch to keep screaming to a minimum. (Are you a sadist who wants to see this procedure being performed? Click here.)

3. BRCA: “It sucks to have a mutated B-R-C-A! It sucks to have a mutated B-R-C-A!” Go ahead, try to spell THAT one out with your arms, Village People fans. Everyone’s got BRCA genes. They’re tumor suppressors, or what stop most people from developing cancer. But mutations happen (bumper sticker alert!) and when these genes don’t work like they’re supposed to, you end up with a higher likelihood of developing cancer. As I’ve pointed out in my other blogs, this mutated

B-R-C-A!

gene can be passed down from mothers AND fathers to their offspring, who have a 50/50 shot of inheriting it. Unlike other genes, you don’t need to inherit the BRCA mutation from both parents. One copy is enough to do its damage. Currently there are two exciting BRCA possibilities: BRCA1 and BRCA2, and each carries its own risk percentages. Both are way higher than the average population. How much so? According to the National Cancer Institute:

• ·         The general population faces about a 12 percent risk of developing cancer during their lifetime; women with a mutated BRC1 gene face up to a 65 percent risk, while BRCA2 mutation carriers live with a 45 percent risk. That's me!

• ·         Lifetime ovarian cancer risk is 1.4 percent for the average woman; for BRC1 and BRCA2 ladies it’s 39 percent and up to 17 percent, respectively.

Other very reliable sources quote even higher risk percentages. Can I get a “Holy shit!!!?”

4. Breast reconstruction: Not unlike reconstruction of the South after the Civil War, the reconstruction of breasts that "left the Union," so to speak, is also a monumental undertaking, and it’s usually done immediately after removing the breasts. Some women opt out of reconstruction altogether, others choose to have implants put in. I picked DIEP flap, where abdominal tissue and fat is removed to recreate the breasts. I get a tummy tuck out of this whole otherwise shitty deal. Yeah, they have to rebuild the boobs, but I. Get. A. Tummy. Tuck. Savvy patients might be able to convince their insurance company that the cancer has spread to the chin, cheekbones, under-eye area, brows, nose, eyelids, butt or thighs, making these areas also critical to, ahem, “treat.”

5. Oh for fuck's sake! How many samples do you need? (also known as ultrasound-guided biopsy):  I was lucky enough to have two areas that needed biopsy—one in each breast (although they take about four samples from each biopsy site; that's eight total passes in my case, for those keeping count). At least for this one I was lying face up or on my side. From these vantage points, I could see on the ultrasound screen the needle being inserted into the breast and guided to what turned out to be the cancerous areas. My ductal carcinoma in situ (DCIS) looked so perfect, like an adorable little football, that the radiologist thought it was nothing. He was silent about what turned out to be invasive cancer in my right breast, which looked like a Rorschach inkblot. All those irregular borders? That’s never good. Too bad it wasn’t in the shape of Elvis or some religious figure. I probably could have made some sweet money selling my boob on eBay.

6. Mammogram: Most people know what a mammogram is, but I felt the need to include it here just so I could virtually yell: IT’S NOT AS BAD YOU THINK, SO JUST GET THE GOD DAMN THING!

7. Microcalifications: A lot of women have calcifications, but they’re usually macrocalifications—vestiges of old injuries, infections, cysts, etc.—and they’re bigger and spread out over the breast in no particular pattern (or maybe they spell something out if you’ve got quirky breasts). Microcalcifications on a mammogram are more worrisome because cancer likes to mark its territory with these calcium deposits (and they're usually clustered). In my case, it looked like a little snow squall in my left boob. Yep. Got yerself some cancer a-blowin' in, Heather.

8. Oophorectomy: Is this even a real medical term? YES! Is it fun to say? YES! Does it have anything to do with Oprah? NO! It means to surgically remove the ovaries. Doing so preventatively can significantly reduce the risk of ovarian cancer and breast cancer.

Make sure you study this list long and hard. There WILL be a test...