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Ten Years After

“Do you think I can remember what grade I got on a test ten years ago?” the sixth grade teacher demanded of her honor students, who were collectively freaking out over the poor exam grades we’d all received.

I was 12 at the time, and I never forgot that moment. I guess what struck me was the way this teacher, who couldn’t have been more than 23, could speak so dismissively about an entire decade of time. I remember thinking how cool that must be, to have so much life in the rear view mirror.

Now, as I head towards my 54th birthday, what strikes me is how many ways there are to frame the decades I can look back on: by marriage or friendships or jobs… or cancer.

This month is a big anniversary for me: 10 years as a cancer survivor. And in many ways, it’s this past decade that has changed me as no other period of time before ever had.

I’d gotten a lot accomplished before cancer reared its ugly head: college, marriage, career, travel, and divorce. I’d lived independently in fabulous Manhattan apartments, globetrotted as a news and documentary film producer, bought myself a house in NJ, fallen in love, gotten married again, had a baby and blended our son and my husband’s two kids into a true family unit.

And then, wham! Here comes cancer and all the triumphs of the past drilled down to one thing: would I make it — or not? It took two years to really know the answer, but once my final surgeries and treatments were finished, I decided then and there that cancer wasn’t going to be a crisis for me anymore – only an opportunity to take the rest of my life and make it matter every day.

That’s not to say cancer isn’t horrible. It sucks. It’s so awful that once I was finished with treatments and all my surgeries, I got rid of any tissue where I thought it might still lurk. I had a hysterectomy, went through a brutal menopause without any hormone therapy and honestly, if I could’ve figured out a way to live without a colon, kidneys, or stomach, I would’ve gotten rid of all of them too – anything so that I never had to face it all again.

But cancer also changed me in ways I think have made me a better, more thoughtful and spiritually in tune person. Once I had to face death, it made the flip side of life all around me such an easy and beautiful gift to embrace. Cancer made me a more patient parent, spouse and friend. It taught me to listen better, empathize more, forgive quickly, laugh easily and relax in ways that were almost impossible ten years ago.

I know I’m not alone – because of our book, and the volunteer work I do on behalf of local cancer organizations in my community, I meet people in all stages of disease and survivorship. I meet their caregivers, and doctors and friends. We cancer people share a special bond – we know that along with every other living thing, each of us will have our time on this earth, and then one day the sun will rise and we won’t be here to see it.

But this truth only makes life’s fleeting beauty that much more precious. I’m often struck at how when survivors meet, an unspoken rapport develops and the positive energy of their spirits makes everyone around them feel uplifted.

Ten years after being thrown into the cancer club, I see my survivorship as an opportunity to make sure that the energy and light I share with every other person on this journey continues to shine outward, reaching people wherever on the journey they are, keeping hope strong with an abiding knowledge that no matter what they’re facing, they are not alone.

We’re back!

Hey Everyone,

Happy Friday! We’ve been quiet for a while, but we are back with a great blog series coming your way! Stay tuned for more stories from Marybeth.

Thanks for visiting, and come back soon!

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Our interview with Amy Gibson -Soap Opera Star, Cancer Hair Loss Consultant, National Hair Loss Spokesperson, and Innovative Wig Designer!

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It was a pleasure to interview Amy Gibson, who contributed to our book. Amy shared her amazing story from being an Emmy nominated Hollywood soap star to being effected by Alopecia at the tender age of 13 1/2, which she had to keep secret throughout her 20 years starring in television.

Now she shares her experience, advice, and expertise as a national spokesperson for women suffering from hair loss, an innovative International wig designer and savvy successful entrepreneur with an exciting website createdhair.com, which caters to woman globally.

Amy Gibson Interview:

Amy describes her first reaction when she discovered that she was starting to loose her hair:

“I was on my first Soap at 13 1/2 and was in the makeup room when Nick the hairstylist asked me turn my head over to brush my gorgeous main of hair which was my calling card at the time.”

All of a sudden he said, Wow do you know that you have a bald spot the size of the palm of your hand?

I grabbed a hand mirror and saw the bald spot and thought “Wow – this is crazy – and it’s so smooth. I mean when does anyone really see their scalp? Part of me was intrigued. However my next thought was that I must have leprosy! I must have seen a documentary on it the night before and suddenly went into a horrible emotional spin and completely started flipping out thinking my arm was going to fall off next.

Amy discovered that her hair loss was due to Alopecia and describes receiving treatment:

My aunt took me to a famous doctor in NY who told me I had an immune disorder called Alopecia and that there was no cure, only a band-aid, and for it to work he would have to shoot Cortisone into my head to get my hair back. It was very painful and the only way I got through it was to breath in the numbing spray, which would get me high enough for a few seconds to numb out the sound of rice krispies as the needles entered my scalp.

Amy describes her reaction to Cortisone treatments and completely losing her hair:

I had been out of work for two years since leaving The Young and the Restless in the 80’s and the producers who had gone on to executive produce General Hospital had written in a fabulous part for me as a undercover detective.

It had been close to two years since I had worked. I hadn’t had the money to get the treatments I needed so there were several small bald spots present, which I would cover up with hats and scarves.

Within six or seven weeks before I was to begin filming, I went in to Cedars (Cedars Sinai Hospital) and I had a heavy treatment. Unfortunately, nobody ever took my blood test in 17 years and I was probably getting a lot more cortisone than I should have. As I walked out of Cedars, my body had a bad reaction to the shots and I decided in that moment to completely stop all treatments and lost all my hair in 3 weeks… I was in my late 20’s.

Amy describes how she saved her acting career:

I was desperate to keep my job, so after experiencing a mini nervous breakdown I came up for air three days later and with what I thought was the perfect idea.  I would talk the producers into turning my character of an undercover detective into one with several different dialects and looks to get her man, thus utilizing several wigs and most of all, protect my secret.

I met with the producer and in the middle of pitching him my idea he stops and says ‘that is such an amazing idea, how did you come up with that?’  Then I shared my secret and said nobody can know or I’ll be ousted as some bald freak from the industry. He said ‘I’ll do my best to make sure that the make-up artist never talks and know one ever finds out.’ 

I decided that I would wear the same wig to work everyday so that the cast would think it was my real hair. He got the network to increase the budget by almost $100,000 just for my wigs and this storyline.  I played many roles including a Russian spy, and it worked well.

Amy on revealing to cast mates about her condition:

No, in fact when People Magazine covered me, they went to every single cast mate that I ever worked with and nobody ever knew.

Amy elaborates on her quote in our book “Hair is an important part of us. Most woman are taught that it’s our crowning glory, our mane, our sensuality, our sexuality however we are more than our hair”

I do believe that hair is important to many women. Unfortunately it’s inbred in us. However I have three heroes:

The woman with alopecia, because she has to investigate her inner world so much more than most women to find out what makes her tick aside from her external being.

My second and biggest hero are women with cancer, because they not only have to deal with their hair loss, but they have to reach down far deeper too and do what ever it takes to fight to stay here even after having lost their hair, breast, and organs and still be okay in their feminine body for their mate, while keeping their mind together for their family and for their friends.

And the woman who walks into my studio for a wig is my hero. She’s the woman who is going through menopause, hair thinning, or some kind of medically related hair loss and willing to go on a new fabulous journey for peace of mind and to feel and look complete again.

All of which take an enormous about of strength and guts.

Amy on gaining confidence after her hair loss:  

I was knocked down a lot before I went public with my story. I had men not want to date me because of my hair loss and I had to accept it and move through it. It wasn’t easy. But along the way as I have become more comfortable with it so have the men in my life.

I believe women in general are more resilient than we give ourselves credit for. My mother used to say “Amy, women can move mountains with their minds.” And I have grown to agree with her. We are amazing individuals.  I miss her.

Amy’s advice for women who just lost their hair and feel uncomfortable: 

There are two things that contribute to that; one is if you are wearing the wrong wig especially if it’s itchy, hot, and doesn’t look like you, it’s going to make your journey that much harder.

It’s really important to find something comfortable, in the right color and a piece that when you look in the mirror looks like you and most of all, makes you feel like you.

Bring a friend with you and look at the pc. in natural sunlight only, because you will not get the proper hue the color inside. The second thing is to realize that everything is very temporary in this life.  With that I say, ‘ok I lost my hair, this is the way it is right now – but I still have to live my life. So what can I do to make me okay right now with this?

You also have to let yourself grieve the loss of your hair so you can move through it. It’s just not productive to let that go on for months before you do something about it. The faster you do something, the better you’ll feel. The main thing is to be as proactive and getting the most knowledge as possible to help you through this process. This is one place where you can have control.

Amy on how she started her wig line and createdhair.com:

I started my business in the year 2000 out of the trunk of my car but it under was another name. Through a variety of serendipitous events, I designed the First Women’s Swim Wig which was in stores all over the world from 2004 – 2009 before I released my newest line in 2010 called the Water Wig™ which is made for the active woman.

Amy’s three tips when looking for a wig:

The fist thing to do is remember your color so you can get a wig to match it. However because most are on information overload at this time, remembering you’re exact color can be challenging. If you are going for chemo have somebody take a good size sample of your hair, not strands, about 1/4 inch wide starting from the crown (top), which is always lighter than the nape (which is always a little darker), and both sides. Place them into zip lock bags and label separately.

The next thing is to find something lightweight. As I don’t sell anything that I don’t personally wear, and as I have an aversion to perspiration, everything I make is very light. With me, comfort is the #1 priority.

We (createdhair.com) make an all lace cap, which is the lightest you can get. The material itself is hard to find, particularly because the lace comes from Switzerland. If you place your hand on the inside of the wig and blow on the outside, you’ll feel the air on your hand. That is how you can always tell if the wig will be lighter on your head. I always say; hold your wig up to the light.  If you can see through it -you can breathe through it.

You want to have a wig that shows the part, called “monofilament” which makes it look more natural as they’re thinner and lighter on top.

The third tip is picking the style. Because most manufacturers make wigs for the masses they tend to come in too heavy and need to be thinned. Try to go to a shop that’s reputable. Nowhere is perfect, therefore don’t base it on one complaint, but look if there are many complaints.

Amy on how having alopecia and meeting women and girls across the country with hair loss has changed her life. 

It has helped me put my own hair loss in perspective at times. It’s made me more humble. I’m so grateful to be able to make this work and be in a position to help those in need.

 

My New Boobs Series | “The Greatest Gift”

My new boobs and I have been living together for many years now. They are very much a part of me, to the point where sometimes I forget what an arduous journey it was to get them.

I can also declare with complete honesty that having cancer was not such a bad thing after all. I wouldn’t wish it on anyone, and will do my utmost to never have to face another bout, but when I consider how I was “BC” and how I am now, I think of the disease as the wake up call that helped me truly understand and treasure the incredible blessing it is to be alive, to be loved, to be part of something that is bigger than just myself.

Prior to getting sick, I was a seriously high-octane woman. I never really relaxed. I didn’t know how to shut out the zillion thoughts always racing across my brain. I thrived on energy and stress and pushing the limits of what I could do. I didn’t appreciate what a trusted vessel my body had been. Living inside my unscarred, untested, pre-cancer body, I pushed it relentlessly, had a lot of complaints about what I considered its failings, and held it to exceptionally high standards.

Today, I’m still an over-achiever, but I’m not jet fuel anymore. I can slow down, sit on the porch rocker or watch mindless television and not feel as if I’m wasting time. I can walk our dog without needing to elevate my heart rate. I am able to tolerate some dust without reaching for the furniture polish and can cut myself some slack should I misplace my cell phone or keys.

I’m also completely at peace about getting old. Before cancer, I dreaded aging, and looked upon creases in my skin as an affront to my strenuous efforts to be strong and limber and young. I read about the in-office procedures many women had at the dermatologist’s office during their lunch hour, and figured that as the years marched on I’d be going for Botox and chemical peels and whatever other miracles could be called upon to erase the effects of time.

Now, I look at birthdays as accomplishments. Every year that comes to me is proof that I won my cancer war. And while I wish my face didn’t fold into saggy lines along my chin and neck I’m actually proud to have some cellulite in my thighs, and to feel the ache of muscles after a particularly hard work out. Those sensations, those lines and wrinkles and dimples are the trophies I wear as proof of my victory over disease.

That’s not to say I don’t sometimes mourn the loss of youthful beauty. Every now and then I’ll stand in the bathroom and pull the edges of my face up and remember how taut and smooth it once was. I’ll fantasize for a moment or two about facelifts and liposuction, but then the phone rings, or the dog barks and I move on with my day. I guess realizing your life could be ending sparks a true appreciation for the life you still have.

Before cancer, I was a pencil thin woman who watched every morsel of food I ate and was eternally at odds with my figure. Now I’ve got tits and ass. I love a good porterhouse steak, enjoy the occasional martini and no longer consider ice cream to be a once a year treat.

I suppose I’ll always be a nut about maintaining my weight, but I don’t let the scale stand between me and a particularly delicious cookie. I run and spin and swim for aerobic health and lift weights for bone strength. I don’t care if my arms have bat wings or my legs aren’t always smoothly shaved. I head out to the school bus stop in my sweats and t-shirt and if I miss the poppy seed stuck in my teeth I no longer cringe in embarrassment at having gone outside without being perfect.

It took cancer to make me realize that in all the ways that matter, perfection is a plateau I’ve already reached: I am married to my soul mate, we have our kids, we’re happy in our lives and my boobs don’t give me any more trouble.

Whatever it took to get here was worth the ride, and I’m determined to drive this highway until that last stop sign appears. Hopefully I’ll be an old lady by then, but one thing is for sure: no matter how old I get my boobs will be forever young.

And I’ll be forever grateful for all they taught me.

My New Boobs Series | “A Full Figured Girl”

There were a couple of funny things that happened once my reconstruction was over.

My original breast surgeon, who declared me crazy for deciding to have my breasts removed, turned out to be wrong in every way that mattered. As life would have it, my left boob tissue, which looked healthy enough on the operating table, ended up being full of cancer. The pathologist’s report showed that had I listened to the advice of that first surgeon, and gone ahead with lumpectomy, chemo and radiation, I would have indeed been back before St. Nick the radiologist, dealing with another bout of cancer that may not have been as receptive to treatment as the one from which I was newly freed.

I wasn’t looking for validation, but knowing that I was right, and that my natural boobs would have come back to torture me unless they were sent to the garbage pail, was quite satisfying.

I guess I could’ve called Mr. ‘lum-PECK-tomy’ and crowed about being wiser than he, but instead I wrote a letter to St. Nick, telling him what happened and thanking him for his honesty, which ended up saving my life. He never responded, but I am very hopeful the sincerity of my note gave him whatever motivation he needs to keep speaking up to women about their chances, no matter what his referring surgeons may think of his advice.

Knowing how close I came to recurrence makes me view my new boobs with grateful pride, but they do have some drawbacks. Naked, the girls are incredible, but in clothes, the nipples always stand up, making me look as if I’m permanently freezing cold. During the skin graft, the assistant whose job it was to remove all the hair follicles from my inner thigh skin missed a couple, which isn’t surprising considering the amount of hair I have down there, so every now and then I have to deal with a stray bit of wiry white pubic hair growing out from the center of my implant. Small issues, I know, but they do exist

And while it’s great to no longer need the support of a bra, I still have to wear one when I’ve got on a lighter weight shirt because the nipple is either visible or just too pronounced to ignore. Finding lingerie that fits is a challenge, as my boobs don’t move and can’t be adjusted to fill the cup. In fact, it was bra shopping that gave me the final laugh in the whole new boob experience.

Unhappy with the way my shirts looked over a bra that was empty at the top due to the way my implants are shaped, I went into a Victoria’s Secret one day looking for something I could wear to cover up the pointed nips.

“Do you know your size?” the salesgirl asked

“Thirty-six B” I told her, trying not to preen as all of my life this was what I considered the ultimate measurement.

She seemed skeptical, pulled out her measuring tape and smiled broadly.

“No wonder you have such trouble with the fit,” she said approvingly. “You’re a thirty-six D.”

I made her repeat herself, feeling my face grow hot as she reaffirmed her findings. D! I was a D-cup? Holy Mother of God!

For some inexplicable reason, I was mortified. I hadn’t ordered a D – I said B! Could the plastic surgeon not have understood me? Hurrying out of the store, I called him from my cell phone to complain. Listening to my indignation about the mix-up, he guffawed into the receiver.

“B, D, what difference does it make?” He asked.

“What? Didn’t you hear me? I’m a D cup,” I exclaimed. “I’m huge.”

“You’re exactly the same as you were before the girl measured you,” he said. “And you look great. Just enjoy them.”

It took a bit of time to get used to my size, but in the end I decided to take my plastic surgeon’s advice. The girls were way bigger than I had expected, but they fit me perfectly. Maybe I’d been wrong imagining a “B” was the cup size for me. These D-girls certainly worked and while in another universe I might have been born with large, healthy D-sized breasts, these fake, safe silicone boobs were all I could have hoped for.

They may not hang and sway like living breasts, but I am more than pleased with their presence, and very grateful for the opportunity to be able to wear them.

My New Boobs Series | “Boobs Up”

It took nine months to fill the expanders, swap them out for implants and have new nipples grafted into place, but by February of 2006, I had my new boobs.

Everything I had been dreading and knew would be a challenge was just what I expected: schlepping into the City for saline infusions, dealing with the discomfort of stretching out my chest muscles and skin, and then of course having to have more surgeries, were all a big fat pain in the butt.

But I did a bunch of other, proactive things to make sure that once I closed the door on cancer it wouldn’t come back to haunt me. Chemo had thrown me into early menopause and now being 45, I knew my baby making days were behind me, so I had my ovaries removed, shutting down any chance of ovarian cancer.

I had a second colonoscopy to make sure there were no dangerous polyps about to cause trouble, and am religious about staying current with that procedure, nasty as it is, as I don’t want a malignancy there to put me in my father’s shoes. I went on anti-recurrence drugs and settled into a regular 3 times a year check up schedule with my oncologist. I also did a lot of research into the type of implants I would get and was very happy to learn that, contrary to what my initial investigations had revealed, there were some decent, even attractive options for breast-less women to consider.

Going through the possibilities before my surgery, I knew that silicone was still illegal for all but mastectomy patients, who were exempt from the ban. Liking the shape and look of these prosthetics much more than the saline filled forms, I selected a teardrop shaped implant made of what they called ‘cohesive’ or ‘gummy bear’ silicone.

Unlike the silicone of old, which had the consistency of runny jelly, these were made from a soft, firm silicone solid. That meant that if they ever broke or were cut or ruptured, they would retain their shape, protecting women from any sort of substance leeching into their bodies and maybe causing problems, as so many had alleged.

I got them implanted in December of 2005. The nipples were put on the following February. All in all, I have to say that they’re really quite lovely. If I hold my hands over my lumpectomy scars and gaze into the mirror, they look real, falling like eggplants into a heavy oval along the bottom, capped in the centers with a pair of pink hued nipples graphed from the skin of my inner thighs. Recovery wasn’t nearly as challenging as the mastectomy surgery. I had to stay home from a couple of sledding excursions that winter so that my body didn’t overheat and reject the skin grafts, but that was an easy price to pay to ensure they took hold. I just bided my time, kept my eyes on the prize and by the time St. Patrick’s Day rolled around, I was completely healed.

My life as a cancer patient was now over.

My New Boobs Series | “Epic Fail”

Memorial Day weekend 2005 found me heading away from the Jersey Shore to Manhattan, where my surgeons waited to perform double mastectomies and my coveted DIEP flap reconstruction.

Now, the thing about the DIEP that is really challenging is that it’s a long surgery. There can be complications, and success is not guaranteed. Not a bit of that impacted my determination to get it done. I really believed it was going to be fine and, if the new girls were too indeed small to fit my frame, I figured I could always get implants later, though it seemed unlikely I’d ever want a foreign thing inside me.

I was concerned, however, about perhaps falling into an irreversible coma during the procedure. The Terry Schiavo case was all over the news back then, and the phrase ‘persistent vegetative state’ was on everyone’s lips. I made sure my insurance, my last will and testament, power of attorney and all that was in order before I left home. I had intense anxiety about my little boy, fearing that if I never woke up he wouldn’t understand how deeply I cherished him, how his birth had been the greatest gift of my life and how in his smile I saw the complete and total sum of my heart.

And though it tore at me to imagine him being, as Clapton sang, a motherless child, I never considered not going through with the surgery. I never gave a moment’s thought to its failing.

In the end, however, that’s exactly what happened.

The moment I awoke from surgery, I knew things had not gone well. I was too alert for coming up from almost a day under anesthesia. Looking around, I croaked until someone came up to me. My memory of who spoke is foggy, but the first question I asked was ‘did the DIEP work?’ and the answer that came back was ‘No.”

No.

It took a small eternity for me to process this word.

No.

It hadn’t worked. The DIEP had failed, which meant there were expanders in me. Instead of living, swinging breasts, I had empty, plastic balloons. Talk about a letdown. I fell into a state of disbelief.

After all I’d gone through, how diligent a patient I’d been, how resourceful I was to stick to my guns and never let those insurance representatives bully me out of my preferred procedure – it failed. How could that be?

A chasm opened up, dark and wailing and so deeply, crushingly sad I found myself unable to accept what was an absolutely undeniable, irrefutable truth –

My boobs, my living, breathing, naturally hanging boobs, were gone. In their place were the dreaded expanders, and the vision I’d been holding onto of being as good as new in just a couple of weeks faded away.

I wasn’t going to get girls that were better than the real thing because they were made of fat and not cancer-growing ingredients. I wasn’t going to hit the beach this summer with super short post chemo hair and a pair of tiny titties bouncing around just like the real thing. No, I was going to be fake. I was going to have two round melons sticking off my body, and just to get them would have to endure months of doctors visits and more surgeries and anesthesia and skin grafts and no, oh no, oh God, no, it can’t be, it can’t have failed. My boobs – my boobs, why? Why didn’t you work, why didn’t you come to me, how could you have failed me, where are you my boobs?

I didn’t cry much during my cancer experience, but I cried then, thick salty tears that fell in a puddle below my ears, leaving a cool stream of misery on my cheeks.

My boobs – Oh God, it was awful, understanding that what I wanted was never going to be. The pain burned down to my soul, fueling my tears. I had tried so hard to be a good sport, and not complain through all the months of treatment. I tried to keep a sense of humor about going bald and gaining weight and having yellow skin and no eyelashes and being sick and weak and pimply and unable to taste anything but metal.

I really tried to not let the cancer get to me, seeking the bright side and all that light at the end of the tunnel stuff everyone claims is half the battle when it comes to beating the big C. I reverted to my Catholic School Girl mentality, doing well and expecting to be rewarded for my hard work and really, what was so unattainable about what I was asking for? All I wanted was something small to replace what was no longer safe to keep, but it seemed that wasn’t going to happen and the finality of this sliced through me, cramping my surgically tightened guts, making me feel like I could vomit for the next ten years and never fully expel the disappointment saturating my psyche.

Devastated, I was also developing a searing fury towards my doctor. All night, in post surgical pain and sharing a room with a mentally challenged woman who spent the entirety of our co-habitation screaming at the top of her lungs ‘oh Lord, help me, my legs!” I thought of his assurances that my new boobs would be small, but fine. I thought of the repulsive plastic things inside of me, and all I was going to have to deal with now before this nightmare known as breast cancer would be over. In the dark, shutting my eyes and ears from the noise of my roommate and the nurses who came to the door every fifteen minutes imploring her to shut up, I silently cursed my plastic surgeon with language that I think might have made a drug dealer blush.

I suppose at some point I slept. The long hours passed, the sun came up through the eastern facing windows, and Bruce arrived. He knew how freaked out I was. I think maybe he even warned the doctor, because when arrived he had just the right amount of empathy and regret to mollify my rage. He took my hand, smoothed my shiny bald head and said he was sorry. He knew I was upset. He also heard what a rough night we’d had in my room and had already made arrangements to move me away from the screamer. It was going to be all right, he assured me. He would make sure I ended up happy.

What could I say? It wasn’t my nature to beat up someone who had already apologized for his errors. Tearing up again, I asked him what had gone wrong.

“You had no fat,” he said. “Or actually, the fat you had was no good. After your C-section, the scarring in your abdominal cavity was significant. The fat pedicle was atrophied. There was nothing live to work with.” He smiled. “You made yourself so fit after having your baby you left us with nothing to use.”

In the grand tradition of saving the best for last, I suppose that was the greatest of all my cancer ironies. I’d spent my entire adult life eating healthy, vegetarian-like foods, shunning red meat, avoiding alcohol, exercising fanatically, doing yoga and staying out of the sun, yet I ended up with a set of very aggressive malignancies and now a body too lean for a DIEP.

It was kind of funny, if you really thought about it. Lying there between my husband and my plastic surgeon, I felt the knot in my stomach begin to loosen. While other women could smoke cigarettes, swill cosmopolitans and pull from endless stores of fat in their thighs and bellies and butts, my Spartan mentality and tightly muscled body offered up no protection from cancer or the resources from which to harvest enough slimy white stuff to make a pair of boobs.

Considering the cause of the atrophied fat, my spirit lightened even more. I’d had fibroids on the outside of my uterus, which my obstetrician had warned early in my pregnancy would likely drop into my vaginal canal during labor, blocking natural delivery. Being 40, over the moon happy about this one and only chance to be a biological mom, (our older boy was Bruce’s child from his first marriage), and not about to let anything stand in the way of my baby arriving healthy, happy and without incident, I immediately booked a C-section.

Other women told me to wait, to ‘try’, to see if perhaps a vaginal birth would be possible but I never second-guessed my decision. I wanted my baby more than anything, and wasn’t going to take even the slimmest chance something might go wrong. My son was born at 38 weeks a whopping eight and a half pounds, with all his fingers and toes and a head full of hair. He was gloriously perfect and beautiful and such a joy and blessing nothing surrounding his existence could ever be less than a miracle to me. If atrophied abdominal fat was a by-product of his birth, so be it. I didn’t care, as long as I got to be his mom.

And just like that, within seconds of hearing why my boobs had bailed, all the anger and pain and sadness vanished. I started to laugh, a rueful little chuckle at the insanity of this whole journey. Implants, expanders, atrophied abdominal fat –who cared? I had Bruce, we had our family, my life, and whatever my new boobs ended up looking like, as long as I still turned my husband on, as long as I could continue living and loving and being here on this earth, what difference did any of it make?

“Oh Jesus, God, my legs! Help me Lord!” my roommate screamed.

The three of us burst out laughing. A nurse came and wheeled me down the hall to a room with a spectacular view of the East River, and for five days I convalesced before being released to begin the last phase of this long journey to normalcy.

My New Boobs Series | “Finding Dr. DIEP”

About a week after we’d left the Long Island doctors office, his booking secretary called me, cheerily inquiring as to where she should mail the billing papers so that we could move forward with the DIEP surgery.

“We’re not moving forward,” I told her.

“You’re not having mastectomies?” she asked, sounding horrified.

“Sure I am,” I replied. “But he’s not doing them. You can tell the doctor his next Rolls Royce will have to be financed by someone a lot more desperate than me.”

I hung up, and for a moment or two felt the satisfaction of having spoken my mind. But in reality, I was really demoralized. Despite the undeniable greed of some of these so-called healers, I knew very well that if a surgeon could charge $60k per reconstruction, and schedule one every week, it wasn’t my place to accuse him of thievery. If we were making his kind of money, shelling out a ton of cash for new boobs would’ve been a no brainer.

But, being a middle class family with one kid headed off to college in the fall and another one not quite out of diapers, we just didn’t have the extra $1000 a month for five years to lay out. So I spent endless hours on the phone with my insurance company, appealing, arguing, writing letters, doing everything I could to get this surgery with a qualified doctor.

For a few days, it seemed hopeless, but then a ray of sunshine poked through the clouds. I called my senators down in Washington, and they made some inquiries on my behalf and suddenly my insurer realized I was never going to back off about my rights and their responsibilities. They called me one afternoon with the happy news that they found an in-network micro-surgeon at New York Hospital, which had always been ‘my’ hospital, and who was experienced at the DIEP reconstruction.

Saints be praised, as my grandmother used to say. We once again got my in-laws over to babysit and hauled our butts into Manhattan to meet with this newly recommended doctor, who was gifted, generous and best of all, said he was confident he would be able to give me what I wanted.

“You’ve got no fat,” he told me when I said I wanted the DIEP. “Your breasts will be tiny.”

Looking down at my soon to be departed girls, I smiled and said, “I’m used to that.”

He laughed. If small was ok with me, it was ok with him. We made a date. I found a colleague of his to do take my toxic breasts off and put my physical fate in the plastic surgeon’s hands.

My New Boobs Series | “DIEP Disappointment”

Once I had discovered the DIEP breast reconstruction option, my next hurdle was finding a surgeon who could successfully accomplish this very delicate surgery.

I couldn’t find anyone within my insurance’s mandated 50-mile-from-home radius, so I booked a consultation with one of the few doctors in the Northeast who had lots of experience with the DIEP.  His office was on Long Island.  I made the appointment even after learning he was another member of the “I don’t take insurance’ club – a very elite group of doctors and other health professionals who simply won’t accept what the insurance company tells them their work is worth.

Instead, they hire a subordinate, usually a woman, who explains without emotion what the fees are, all the while presenting papers for you to sign, papers that make any and all financial obligations yours, while specifically declaring that whatever you get back from insurance has no bearing whatsoever on what the doctor himself is going to get paid. It’s a very cold slap in the face to be reeling from a diagnosis and then confronted with the reality of financing your recovery, but when you’re freaking out and believe the doctor you just saw is the one who will save your life, it’s easy to sign away, and deal with a different kind of shock when the bills start pouring in.

That’s what happened with my breast surgeon.  Because my City gyno sang his praises, I didn’t think twice about affixing my signature wherever they indicated an ‘x’. Dealing with the fall out of that panicked behavior via soaring monthly payments to a slew of professionals, Bruce and I were a lot more careful about selecting my chemo care.  We interviewed seven oncologists and chose the one who gave us confidence, solid advice and who also accepted our insurance.

This plastic surgeon we were on our way to see was the DIEP Master in these parts, and even though when I spoke with him on the phone he said he’d work with me, both Bruce and I knew there would be some out of pocket expense involved.  Having had that initial conversation, however, and taking the doctor at his word, we arrived in Great Neck optimistic that the price tag would be something we could afford.

His offices were gorgeous.  We sat in the cool waiting room, while plinking spa music underscored the gentle tinkle of water washing over a hanging slate fountain.  The women were sweet and gentle and so kind, looking at you with eyes that said, ‘I understand.’  I floated into the examining room with Bruce at my side, believing in my heart of hearts this surgery was going to be the most amazing transformation of my life.

The doctor himself was a quiet little man with a happy, Marcus Welby type of smile.  He examined my body, looked at my diagnostic films and explained that while I had very little abdominal fat, he could make me a pair of breasts that would swing and sway and move just like real ones.

I was thrilled.  According to his website, this was the biggest hurdle, for the doctor to examine the patient and declare her a candidate for success.  Happy with his pronouncement, I got to the question of how much it would cost.

His nose wrinkled as if I’d belched up black syrup.  I looked to Bruce to see if I’d made some terrible faux pas.  He was looking patiently at the doctor, waiting for him to reply.

“You can work that out with the girls,” the doctor said dismissively.

In that moment, I knew we were cooked, that ‘working with me’ meant pulling out the old credit card and slapping another ten or so thousand dollars on it and then hoping the insurance would send a check that made a significant dent in the balance so we didn’t have to tap even harder on our seriously strained monthly budget.

Frustration poured through me.  Why even bother to use the words work with you when you knew damn well you had no intentions of working with anyone.  It was all just a ploy to get a woman to his office, and woo her with eucalyptus scented air and insincere sentiments of sympathy.  I narrowed my eyes.  I stood my ground.

“You told me when we spoke on the phone that you’d work with me.  That means you’re going to accept whatever my insurance company pays you, right?  That means you’re going to charge me a reasonable and customary rate, so that this is covered, right?”

The examination came to an immediate end.  I was handed over to “the girls”, who had lost their sympathetic sheen and stood like a fortress around the desk where the billing lady sat.   Bruce and I settled into the comfortable office chairs before her, and she presented us with a breakdown of the expenses.

“The doctor understands how important it is for you to get this surgery,” she said slowly so we were sure to understand every word. “He knows you’ll never be happy if you don’t get the reconstruction you want.  That’s why he’s willing to work with you.  This is the rest of your life we’re talking about, and you don’t want to make a big mistake.”

She slid a paper under our noses, outlining the costs.  Our eyes bulged.  $60,000!  Having those living, swinging breasts was going to cost us sixty thousand dollars!

“Are you crazy?” I blurted out to them.  “That’s thirty grand a boob!”

“What does insurance cover?” Bruce asked, taking my hand so I’d calm down.

After a quick review of our coverage, they estimated we’d get back about twelve thousand.

“So it’s only forty-eight,” the billing lady said, smiling brightly.

I could feel my blood beginning to boil.  Reasonable and customary charges were established at $12,000, and this guy found it acceptable to charge five times more?  I said as much to his posse.  They gave me a collective frown.

“You’re putting your finances in front of your health,” his office manager said.

“This has nothing to do with my health,” I retorted. “It’s a cosmetic procedure.”

Clearly having heard that before, she promptly replied, “Your mental health will be harmed forever if you are deformed by your cancer and surgery.  We’ve met many women who regretted their decision not to have this work done – it ruined their lives.”

I looked at Bruce.  He looked at me.  Ruined their lives, was this woman serious?

Without saying another word, we left.  We railed against the greed of these doctors during the two hours it took us to get home.  And then, once again, I logged onto my computer’s search engine and tried to find a way to get my DIEP flap done.

My New Boobs Series | “Boob Beauty”

After seven months of chemo, my cancer treatment was complete and I moved on to the next action item on my list, picking out new boobs. My oncologist advised me to take no more than six weeks, as that was the recovery period usually set aside for breast cancer patients to come back from the debilitating effects of chemo before moving on to radiation.  Since I was choosing mastectomy, I wouldn’t need radiation, as long as I had my breasts removed within that six-week window.

It seemed like plenty of time to me – I’d had my tumors on the pathologist’s table just days after confirming their existence.  Initial investigations into reconstructed breast options, however, proved that what I was looking for was going to be hard to find.  None of the online photos I searched out seemed very appealing.   For the most part the reconstructed breasts looked like a pair of overly ripe melons shoved under the chest wall.

Of course I knew whatever I ended up with wasn’t going to look the same as real breasts, but was this the best modern plastic surgery had to offer?  The most common approach was to have the breast removed, and a tissue expander inserted.  Essentially an empty balloon, the expander had a port to receive saline solution, and over the course of several months the patient would go to her plastic surgeon and receive several ounces of liquid pumped in via an IV-type drip.  Once the expander stretched out the skin and muscle to the appropriate size, a second surgery would swap out the expander for the actual implant.  Then, after the implants were firmly in place, another surgery to create fake nipples would be performed.

This all sounded about as appealing to me as catching head lice.  Months of doctor visits, multiple surgeries – I definitely didn’t want any of that.  I kept searching, believing that there had to be a better way.

I read quite a bit about a procedure called the tram flap that took stomach muscles, fat and skin to create a new breast mound.  It sounded promising, but being athletic, I was very concerned about not having my abdominal muscles moved.  How would I do yoga, or sit ups, or go sledding with Bruce and the kids?  Delving into the details, it seemed this wasn’t going to work for me.

But then in learning more about tram flaps I chanced on an innovative new approach that seemed to be exactly what I wanted.  Called a DIEP flap, it essentially used your own tissue to make the new boobs: the doctor would scoop out all the woman’s abdominal fat, shape it into a breast and using microsurgery to reconnect all the blood vessels, make new ‘living breasts’ for mastectomy patients.

What a concept this was; rather than a piece of foreign material living on top of my breast plate, this surgery would let me use my own flesh to correct what cancer was causing me to lose.  And it offered other almost unbelievable advantages:  the procedure was essentially a tummy tuck, with the fat recycled into new boobs, leaving the woman with a nice rack and a totally flat stomach.  Even more amazing, the newly repositioned abdominal fat would have no idea it had been moved, so any belly busting weight gain would now land right in the cleavage – incredible!

The only problem was in the spring of 2005, there were not a lot of micro-plastic surgeons offering DIEPs to patients.  I could see why – the surgery took about 18 hours, was exceedingly painstaking and very, very expensive.  Not that I planned on letting any of that stand in my way.  I had already learned that in 1998 President Bill Clinton had signed the Women’s Health and Cancer Rights Act, which among other things required insurance companies to cover reconstruction while preventing them from having final say over what type of procedure a woman could choose.  So it didn’t matter if the doctors in my plan couldn’t do a DIEP. If that’s what I wanted, and there was no doctor in my network (within a reasonable distance of my home) able to perform the surgery, they’d have to pay an out of network doctor to do the job.

And just like that, boob shopping went from demoralizing to delightful!  I located some women who had undergone the DIEP and met them at their homes or once in the bathroom of a local department store, and stared in astonishment as they lifted up their shirts and showed me their stuff.

Every pair was fabulous.  These DIEP boobs hung like the real things.  They were the right shape and color, warm to the touch and while the woman wearing them had no sensation behind the skin, to the outside world, the line between real and reconstructed was literally invisible.

I was sold.  All I needed now was the plastic surgeon.  I opened up my network of available doctors and began making calls.