The SCAR Project – A Look at Breast Amputees

Barbie (1) Courtesy of David Jay Bridgette. Courtesy of David Jay Elisa. Courtesy of David Jay There are many variables that go into a woman’s ability or willingness to have reconstruction following a mastectomy. I have had a successful reconstruction and then I had two failures. I know that adds up to three, but all of that activity was on the same breast. Like I said, a lot of variables…

The pain can be both physical and emotional, just look into some of these women’s eyes. I personally can’t stop thinking about the breast that I lost because the area where it used to be hurts all of the time. There is a possibility that more surgeries could alleviate the pain and maybe even put me back together again. However there is also the possibility that the surgeries could fail and I could end up worse off than I am now.

I began to wonder if there were other women like me out there who were struggling with the aftermath of breast cancer treatments and the realities of what it does to our bodies and our personalities? I also wondered if there was anyone out there who was willing to talk about and expose the shockingly raw realities of breast cancer? Lets cut the crap with the pink ribbons and the movie star smiles and have a game of show and tell.

Courtesy of David JayI came across The SCAR Project by fashion photographer David Jay. Two things impressed me right away; the first being that David is a man. The second is that he started an awareness campaign to shed light on what women really look like following a mastectomy, and encouraged them to feel empowered, instead of  ashamed. It’s somewhat of an oxymoron; a man empowering women to feel beautiful because of her disfigured breasts. Breasts are the quintessential symbol of femininity, and men have made it abundantly clear to us women how much they love perfect breasts. So much so, that we women have spent billions of dollars to augment our breasts to make their appearance desirable to men. And then to top it off, we oblige societies love affair with breasts by parading them around like balloons on Thanksgiving Day . Jolene and Kyle. Courtesy of David Jay

But what happens when the breasts need to be amputated to save your life? What if reconstruction is not wanted, not possible or not available because the woman doesn’t have insurance? For most of us women a part of our sexuality and confidence is lost with those mastectomized breasts. David found that by photographing women for the SCAR Project helped them to reclaim their femininity, their sexuality, and some of the power that they had been robbed of.

Kristen. Courtesy of David JayTo me, these pictures represent a small shift in society’s acceptance of a tribe of scarred, breastless and one breasted women. Since 1 and 8 women will be diagnosed with breast cancer, this tribe that I currently belong to is growing. Exposure will help women like me to accept what we might not be able to change. Perhaps fashion designers will make a bra for women with one breast so we don’t have to wear an external device to appear “normal.” What if not having breasts or having one breast becomes acceptable? What if it is seen as a badge of honor and strength? What if we could tone down our obsession with breasts just a little bit? I appreciate David for helping us to see this through a different lense. Jill. Courtesy of David Jay

Please check out the SCAR Project at http://thescarproject.org/ for more photos and information.

Prosthetic Breast, Seriously?!

prosthetic breast 1

Part one of my sagas.

The word prosthetic to me sounds old, broken, missing, braced, fake or injured. It gets stuck on my tongue and I don’t like it. I don’t like the way the word sounds, and I don’t like saying it. What is it supposed to mean anyway, a good aesthetic? Does that mean without a prosthesis, I don’t look good, that I am unpleasing to the eye? Crap that is a lot to digest since I have endured 16+ surgeries trying to look “normal.” Still after all of those surgeries, my body rejected the implant, twice.
prosthetic breast

I don’t want a prosthetic breast, although my mom points out that an implant is a prosthesis. Technically she is correct, but for this article I am referring to an external device. I don’t want one because I don’t intend to remain in my current physically unpleasing to the eye state of being. I plan to be fully reconstructed and I have a wonderful and talented plastic surgeon who agrees with that plan. However, in the short-term, until my body can fully heal from the complications of so many surgeries and radiation treatments, I have a missing accessory. One would not be able to stop themselves from staring at my single perfectly augmented breast compared to the empty, hollowness on my right side. I have come up with a temporary solution; gauze (still healing) and cup type inserts that are removable from my bikinis. These breast shaped pads work great, but they sometimes become dislodged from the shelf-bra camisoles that I wear; I’m still too sore for a regular bra. When they become lose they land somewhere in my armpit or in the center of my chest, which is definitely not pro-aesthetic!

After I finished breast-feeding Curtis, my B cup breasts shrank to AA (which really means negative A in the bra sizing world. Why does a DD mean larger than D, but AA mean smaller than A?). I was spending a lot of time on our boat and in bathing suits, and I didn’t want to go out and buy all new smaller cupped bikinis, so I purchased the chicken cutlet looking breast inserts that some women wear to enhance their cup size. They are made of a silicone type gel and they are pretty heavy in weight. They worked fine to fill up my bathing suit tops, until the day I left them in while water skiing. I took a nasty spill that day, and those cutlets flew out of my top and were floating on top of the lake. My friends in the boat had a good hysterical fit of laughter as they were pointing to the fake boobies bobbing up and down in the water while I tried to swim after them to retrieve them. I laughed too, I don’t know why I thought those things would stay in place, and I was slightly embarrassed that my secrets were out and floating on top of the wake for all to see. I hated wearing the cutlets, they were hot and sweaty and obviously prone to fall out because of my active lifestyle. I immediately went out and bought all new bathing suits and sold the cutlets at a garage sale, those suckers were expensive, so I knew someone would buy them. I learned to embrace my small breasts, dress accordingly, and never ever considered augmentation until I was faced with reconstruction post-mastectomy. I quickly warmed up to the idea of insurance paid implants; I think they are the silver lining common denominator for breast cancer survivors or those having a prophylactic mastectomy.

So now I am planning an annual family trip to Puerto Vallarta, and I am wondering how I am going to navigate resort wear with only one breast. I decided it was time to go for a prosthetic fitting. Fitting, the word should be used to describe Kim Kardashian with a flock of stylists pinning her outfits on her in a way that shows off her spectacular curves. That’s the kind of fitting I want, not one for a fake external boob.

prosthetic breast 6

When I lost my hair from chemo, I would only wear wigs if I were going out in public. I wore them mainly to make other people feel comfortable around me. I didn’t want my cancer to be the center of attention and by wearing a wig I could blend in. People around me were more comfortable without ever even knowing that I was making them feel more comfortable. I on the other hand was not physically comfortable; wigs are hot, sweaty, and itchy, just like the cutlets. So mainly I would wear a baseball cap or a beanie type hat more often than wearing wigs for jaunts to the doctors for treatments or to the store or gym. I was able to continue to work out at the gym during my off weeks of chemo and would just throw on a baseball cap. I drew a lot of stares, but eventually people got used to seeing me at the gym with my bald head under a baseball cap, or I simply got used to the stares. However, I’m not prepared for people staring at my chest and trying to put together the pieces of my life in their minds, especially in a bathing suit.
prosthetic breast 4

I called the local cancer resource center and asked them if there was a place in town that sold breast prosthesis. The center gave me three names: a prosthetic business, a pharmacy, and a lingerie store. I called the prosthetic company versus the lingerie store, I already knew what the lingerie store sold; cutlets. I couldn’t imagine that a pharmacy would be a good place to try on fake boobs for size so I didn’t even write that phone number down. The lady who picked up the phone was kind and told me that my insurance would pay for the visit and for the prosthetic, good news, so I set up an appointment for the following Tuesday.

“It’s no big deal,” said my mom who wears a prosthesis after her own mastectomy decades before. She had widespread early stage breast cancer, had a unilateral mastectomy and reconstruction, and fortunately her breast cancer has not returned like mine did. “See look at mine,” she said as she pulled it out of her bra and waved it at me. I laughed as I dodged it. She uses a prosthetic to create symmetry; reconstructive surgeries are far more sophisticated now than they were 25+ years ago. My mom is obviously comfortable with not only saying the word, but showing me the device. “It’s quite comfortable and look here at this area, it absorbs the sweat,” she was saying and pointing. I looked more out of the corner of my eye than dead onto it, I didn’t want to interact too much with my mom’s prosthetic breast. I didn’t want to face my own need.

prosthetic breast 2

We had a good laugh at the whole thing; sitting outside on the deck drinking Chardonnay with the sun on our chests as we shared our battle scars with each other. Anyone could have driven by and seen us, but we didn’t care because we were not alone in our suffering and we could laugh at our circumstance.

Next week,part two, after the fitting, which by the way seems like a very formal process. NOT looking forward to it. Not at all…

prosthetic breast 3 prosthetic breast 5

New Day, New Doctor, New Hope

Switching doctors
You have heard the saying “It takes a village.” This holds true for cancer patients; it takes a huge team of doctors to treat a person with cancer. It is an often confusing process for the patient; one doctor prescribes a medication and then sends you to a different physician for a drug to counteract the side-effects of the first one. One doctor has an opinion and the next has a different view point. Medicine is not as black and white as one would think, there are too many variables. I consider myself a very informed patient; 20+ years in the pharmaceutical industry taught me how to research, read, and understand studies. I have also had a lot of training on effective communication with physicians. These skills come in handy as a patient.

From the beginning I wasn’t connecting with the oncologist that I was originally referred to following my first diagnosis of breast cancer. She was defensive and condescending during our interactions. Was it because I came to all of our appointments with my black leather notebook filled with my own research and lots of questions for her? Or was it that she had other things on her mind, like her own fiscal health? Either way, I stayed five years and three diagnoses too long.

Have you ever thought to yourself I don’t think this is the right doctor for me? If you have, you were probably right. There is a large continuum of skill and competency in any industry, even those that practice medicine. What? That’s right, I said it, there are some terrible doctors practicing medicine. I saw this first hand over the two decades that I was in “the business”; most doctors were good, some were mediocre, and a few were down right bad.

I should have followed my gut; I should have switched oncologists a long time ago. Why didn’t I? For the same reasons as most; we are indoctrinated to believe that doctors are the all-knowing, ultra-educated, experts on health and medicine. That’s all fine and dandy, after all, they do possess a lot of education and training, but that doesn’t guarantee that they will be good doctors or click with every one of their patients.

Just in case you have never received permission to challenge your doctors or seek a new one if the one you are seeing isn’t working for you, let me be the first to offer you that permission. If it doesn’t sound right, feel right, or the person makes you feel uncomfortable in anyway, request your records and get the hell out. Find a doctor that works for you, not just for their own bottom line. Medicine is commerce and one should have their eyes wide open on this knowledge, and never forget the patient is the customer. I have seen the same scenario play out over and over again in doctor’s offices; the doctor is kind, calm, and happy, so is their staff. Then they move into a new building, take on a huge mortgage and they become anxious, rushed, and snarky, and so does their staff. Doctor’s in private practice work hard to cover their overhead and Medicare and the insurance companies pay less and less each year for services rendered. Couple that with a patient who has a disease and wants compassion, time with their doctor, answers to their questions, a plan to get healthy or stave off disease, and it can be like water and oil.

So what do you do? You get personal references from friends, family, acquaintances, or on-line (healthgrades.com is an on-line service where you can gain valuable information and reviews on doctors). Listen to your gut, and make a move if necessary. People stay longer than they want to with their hair dressers and their doctors because they don’t want to make anyone feel uneasy. When I lost my hair from chemotherapy; I thought to myself that was the perfect time for me to switch hair stylists. I loved the stylist that I had been going to forever, but I thought he was charging me way too much and sometimes he seemed distracted and I left his chair with a bad pixie cut, however, it took me being bald to make a change.

So on my last uncomfortable visit to my oncologist, I said enough is enough. I requested my records and got the hell out. I asked my breast friends who they saw and a particular doctor’s name kept coming up. With a little help from a dear friend who happens to be a physician, I was able to get an immediate appointment with this oncologist that I was courting. Right off the bat I liked him. He said the one thing I had been longing to hear, “It’s hard to believe this right now Trina, because you have been in the thick of this disease for so long, but soon you will have all of this behind you, you will be cured, reconstructed and you will go on to live a long and healthy life just like the rest of us.” Hope. He gave me hope. Hope that I would be whole and healthy. Hope that I didn’t have to feel uncomfortable with any part of my health care village.Hope that I had found the right doctor for me. This hope was worth any uneasy feelings that came with a break-up.
New HopeNew Doctor

Angry Boob

 

My breast is angry, and it is shouting at me and spewing vile. I am fighting with it on a daily basis, trying to save the implant that my body is vehemently rejecting. I have been thinking about my breasts non-stop for the past five years and I am getting sick of them, but they won’t let me rest. The right one in particular is like a defiant child; always in trouble, always causing problems, not to mention trying to kill me.

After I finished chemo, the surgeons took out the implant that was placed during the reconstructive process post-mastectomy. They explained to me that I would have to have a tissue expander placed in my chest wall to hold the space while I underwent my second round of 35 radiation treatments in the same right breast. The tissues contract around the implant or expander during radiation causing pain and dimpling, which can result in an undesirable cosmetic outcome. So the soft implant came out and the hard tissue expander went in. I had to live with this expander for 9 very long months. I was in constant pain and discomfort, picture a squeaky toy in your chest wall. Finally the radiation oncologist and the plastic surgeon agreed that it was time to swap out the expander for a nice soft silicone implant. That was on October 19. Here we are on January 11th and the incision from that surgery has never closed. One of the many side effects of radiation is that it degrades the tissue and the local vasculature system and healing can be prolonged and complicated. Translation: they burned the shit out of my breast and severed the blood vessels in an attempt to keep the cancer from rearing its ugly head for a fourth time.

On November 19th, my plastic surgeon performed an emergency surgery to remove the month old implant and replace it with a fresh one and then revise the incision to see if he could find some healthy skin that would heal. His thought was that there was a low level of bacteria on the implant and causing things to fester instead of healing. He put the dreaded drain back in and tried a stronger oral antibiotic to see if we could prevent my body from rejecting the implant. The incision still would not close. The prescribed antibiotics caused severe joint pain and I felt very ill and in a lot of post-surgical discomfort. I was feeling as bad as when I was going through chemo, I was expecting this part of the treatment to be easier. What was I thinking? None of this has been easy for me…

A week later, I went in for a scheduled appointment to see the surgeon and he added some stitches to the incision in his office. Not a pleasant experience at all, I struggled to maintain my composure. My son was my driver that day, and he had to wait for hours for me to get sewn up again. I was only concerned for his well-being and how the long wait was affecting him. It is very hard for him to see his mother going through so much pain and suffering and for so long. I try to hide it from him, but on this day I needed him to drive me to the surgeon’s office; so he had to experience seeing his mother in a weakened and needy state. I tried to lighten the mood by letting him choose where we would pick up dinner from on our way home. He was driving his new car, so he was enjoying that a little, but I could see the anxiety on his 16-year-old face. I wanted to protect him, not ask him to take care of me, but Joe wasn’t available and I couldn’t drive.

The additional stitches didn’t do the trick and the incision slowly opened up again from the force of the fluid building up and the foreign object in my body. An infection set in. I woke up one morning with a 102 degree fever and chills so violent that I thought I was having a seizure. I immediately called my surgeon. He told me that he wanted to start me on IV antibiotics and that I needed to stay in bed while we got this acute situation under control. I honestly didn’t have any intentions of going anywhere with 102 degree fever but I absorbed the seriousness of what he was saying.

The next day I was admitted to the “Day-Stay” department of the hospital to have a PICC line (peripherally inserted central catheter) put in my artery where the IV antibiotics can be infused at home instead of in a hospital. I was happy to have the option to stay out of the hospital, but having a PICC line inserted was no easy task. The specialized nurse used an ultra-sound to locate the artery in my upper arm that leads towards my heart and then after a meticulous sterilization process inserted a long catheter into the artery. Dangling from the end of the catheter are two ports; one for the antibiotics and the other to draw blood from if need be. He put a complicated sterilized bandaging system over the opening of the PICC line and then wheeled me to X-Ray to make sure the catheter was placed correctly. Since I am on the thin side, I can feel the catheter in my arm inside my artery. It gives me the heebie jeebies, and I don’t like it at all. It makes me feel vulnerable to have a drain coming out of my side, a PICC line in my arm and an open incision on my breast.

After about four hours in the hospital and my first dose of IV antibiotics, I was released to go home and rest. I was assigned a home health care nurse; Eli. Eli is adorable, calm, and compassionate. I like all of those qualities in a human being so I was happy he was assigned to me. He came to the house and set up the IV pole, as well as the bags and bags of supplies that we would need to care for the PICC line and  to get those infection killing drugs into my system. Eli got busy teaching Joe how to administer the antibiotics and to keep everything sterile. I was surprised at first that they would leave this to Joe to administer, but Eli reassured us that he would be coming daily until Joe had the process down cold.

My fever broke after a day or two on the antibiotics, but the incision still wasn’t showing any signs of healing. My plastic surgeon asked me to come into his office on a Saturday; he wanted to try to revise the incision once again and put the drain back in since he had removed it on an earlier visit. We were trying to buy us some time for the antibiotics to work. I took 2 Xanax and 2 Percocet before I went to his office, I knew he was going to “operate” on me again without general anesthesia and I needed to insulate myself from what was about to come. The drugs helped, but being awake while someone is knuckle deep in your chest is not for the faint of heart. He tried to distract me by asking questions about my son, but I could see his bloody fingers and feel the pressure of his hand inside me as he tried to push the implant aside to make room for the drain. He stitched me up and I stumbled back out to Joe who was waiting for me in the other room.

Two weeks of IV antibiotics have turned into four, and an additional broad-spectrum oral antibiotic was added to my treatment. The skin around the adhesive bandaging protecting the PICC line blistered and became weepy so I ended up at the Emergency Room with a possible PICC line infection. You can imagine how dangerous that is, since that catheter is in my artery leading to my heart; and the damn incision just won’t heal.

I was sent to see an infectious disease specialist to see if he could save this implant and get the area to heal. We knew each other from my two decades of being a pharmaceutical rep so he was very tender and kind with me and spent a lot of time talking to me and painting analogies to help me understand his opinion. Tears ran down my face as I heard his recommendation; the implant would have to come out.

Of Course They’re Fake, The Real Ones Tried To Kill Me

October 2011

Breasts, tits, hooters, ta-tas, knockers, melons, jugs, boobs, bosoms, headlights, chest puppies, cans, the girls, rack, bazookas, or whatever you call them, they are a powerful part of the female body. Our breasts can attract mates, nourish babies, provide self-esteem, contribute to a woman’s sexual well-being and be the constant subject of male fascination everywhere. But for some of us, they are trying to kill us.

After my second diagnosis with breast cancer, my doctors informed me that I would need a mastectomy. It is my right breast that is diseased; the left breast has never shown signs of cancer. They gave me the option to remove both breasts or just the diseased breast. I chose to remove only the right breast and to preserve my healthy left breast. Why? Because there was no sign of disease in my left breast and I tested negative for the gene that pre-disposes one to breast cancer.

Besides, the surgeons warned me that having a mastectomy isn’t the insurance policy that we all hope it is.

The surgeons cannot guarantee that they can remove 100% of the breast tissue, so with even one breast cell left behind post-mastectomy, cancer can grow, which is exactly what happened to me.

I underwent the mastectomy and reconstruction, a process that was extremely complicated and painful since I had already received radiation on that right breast. Radiation degrades the tissues and makes reconstruction more complex. My plastic surgeon had to swing my latissimus muscle from my back to my chest wall in order to support an implant; he also had to harvest tissue from my back to reconstruct a nipple. He then tattooed the reconstructed nipple to match my natural nipple. He did an amazing job and I sit an awe of the results of a good plastic surgeon. When I showed a girlfriend the results of my surgeries, she asked which one was fake? That is how good reconstruction can be.

Perugia Italy January 2012

A year later the cancer returned for a third time in the same right breast. The cancer came back in a more aggressive form, an invasive form. Two rapidly growing tumors each a different type of cancer.  I would require immediate surgery, chemotherapy, 35 radiation treatments, and even more reconstructive surgeries. I was devastated as my breast continued to try to kill me even though it was gone.