1+1=2 Boobs

Breast Reconstruction T-Shirt

I needed to buy a breast, but I haven’t worn a bra in 6 months. I hate wearing a bra in general, they bind my ribs and pinch my still healing tissue. Getting dressed with just one boob is no easy task either. I searched my drawers for a do it yourself solution. I found some removable cups in my bikinis and placed them in my bra-shelf camisole. That didn’t work out too well because they would come loose and end up in the center of my chest or in my armpit. Plus they did not mimic my other breast in size or shape. It was time to get a breast prosthesis. I plan to attempt reconstructive surgery again, but in the meantime, I need some options.

The Certified Mastectomy Fitter was very kind and knowledgeable, and she took her time helping me to find just the right form and bras that I could wear comfortably. It took two visits totaling four hours to get it just right. I had no idea how comprehensive the fitting would be. We were in an exam room, and she had cupboards full of special bras with pockets in them to hold the forms. Once I found a style that was tolerable to me, she fit  the right cup with different size and shaped forms. Some were foam, some were made of soft fabric stuffed with little beads that conform to your body, most were silicone with a nipple built right onto it. When I gravitated towards the weightless foam numbers, she cautioned me that it is important to have some weight in your prosthesis. She explained that the body’s bio-mechanics get all out of whack when you have weight on one side but not on the other. Women, especially large breasted women develop neck and back pains from not having the weight evenly distributed. Makes sense, huh?

Certified Mastectomy Fitter

She pulled out dozens and dozens of these forms and shoved them into the bra one at a time while tugging this way and that way trying to line up my natural nipple with the prosthetic one. I winced in pain every time she came at me with one of this forms; I wasn’t prepared for her hands to be inside my bra the whole time. I left sore and exhausted after the first visit. On the second appointment, I pre-medicated with a pain pill. She had no problem digging around the interior of my bra.  Adjusting both sides this way and that, adjusting and measuring for the perfect alignment, size and shape.

External breast prosthesis after proper fitting

When we got the fit just right, I put my shirt back on to see how it looked under clothes. I was very impressed! She got it just right. I could not see a difference between the implant on the left and the prosthesis on the right, it looked great! I stood a little taller as she was surveying her work; I could feel my confidence rise. This was going to be manageable; I could bridge the gap between reconstruction attempts with this set up. I could also wear more of my clothing, I would no longer be limited to what I could wear with the camisoles and the homemade form that goes awry. She got a kick out of my attempt to make something at home to fill the space until I was healed enough to be fitted. She let me know that my insurance would cover 2 forms and 4 bras so I was able to get the foam one to exercise in and the silicone one for the needed balance of my bio-mechanics.

I was not prepared for my body to reject the implant, twice. This wasn’t supposed to be part of the equation, well, neither was the 2nd or 3rd recurrence of breast cancer for that matter. I have learned a lot about human suffering and about the one thing that I can control when the inevitable suffering comes my way… and that is how I respond to it. We are not meant to be perfect, we are meant to be whole beings; the good, the bad, the beautiful, the ugly, and then most importantly, our response to it all.

For more on this topic, check out part one of this tale: Prosthetic Breast, Seriously?! http://www.trinaschilling.wordpress.com/2013/03/11/prosthetic-breast-seriously/

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

Platinum Blonde

My 46th birthday.

 

I decided I wanted to have platinum blonde hair for my 46th birthday celebration. I was in bed over Thanksgiving recovering from back to back reconstructive surgeries, and I was craving social interactions with my friends in person. Joe showed me a picture of the actress Morena Baccarin with a pixie cut colored platinum and I was immediately hooked. She looked amazing with her dark eyes, dark brows, platinum hair and dark roots. I wanted to see if I could achieve that same look, and Joe was in love with the idea. My natural hair color is somewhere between dark brown and grey, so, I normally color my hair a very dark shade of brown. After being bald from chemotherapy, I have a pretty good sense of humor about my existing hair. I figured if it turned out bad, it was no big deal, it was just hair and I could cut it off, and it would grow back, and that was the agreement that I had with my hair anyway.

Joe coloring my hair.

Joe coloring my hair.

Joe was on his way to the drug store and offered to pick up a box of blonde hair color for me. I also took him up on his to offer to apply it. We had a good laugh doing this but in the end my hair merely had an auburn tinged look to it, it was far from platinum blonde. The next day I went to the beauty supply store and the helpful clerk set me up with bleach, toner, and a plastic mixing bowl. I set up the bathroom with a tall chair from the kitchen and lots of towels. Joe again applied the color to my hair, this time it turned bright orange; think the Heat Miser from the holiday cartoon “The Year without a Santa Claus.”  We did the toner step, which turned my hair purple, kind of like Kelly Osbourne. I didn’t have the energy to pick up the camera for that shot. Several hours later, my hair was still orange with a platinum outline. I mentally went through the appointments I had scheduled for the next day, knowing that I would have to go out in public with orange hair. I took a picture of myself and posted it on Facebook asking my friends for help. I got some great advice for the do it yourself girl in me, but when a friend who is a professional offered to give me an appointment within 36 hours, I took it.

Orange hair.

Orange hair.

Before then, I had to see my surgeon and have that dreadful drain removed that I had been dragging around with me for the past two weeks. There was no way I was going to miss that appointment so I went. The look on his face as he entered the exam room and saw my orange hair was priceless. I was so distracted telling him the story about coloring my hair that I didn’t even feel it when he removed the drain. I definitely felt it later though…surgical pain…the gift that keeps on giving.

My friend works in the fanciest salon in downtown San Luis Obispo, and I could feel the stares of the well-dressed, well-coiffed stylist and customers as I walked the length of the shop to where her station was. To top it off, my former husband’s former girlfriend works there, and she did a walk-by stare, (it’s a small-town thing I suppose). The sexy Asian stylist next to my friend’s booth asked me who did that to my hair. When I replied “my boyfriend” she wanted to know if he was an aspiring hair dresser. Good thing I have that sense of humor about my hair working for me, otherwise I would have been a little self-conscious. Thankfully my friend and I had a lot to catch up on so we chatted intently for the three hours that it took her to get my hair to almost platinum blonde and I completely forgot about the stares.

Almost platinum Blonde.

Almost platinum Blonde.

Since I still wasn’t completely platinum blonde, she set up another appointment for the following week to do another process. I like the way my almost platinum blonde hair looks, but I want to go all the way to full platinum. After that, I won’t maintain it, too much work, too many chemicals that I can’t afford to process through my delicate immune system, and too much time to process this naturally dark/grey hair. I’m glad I did it though; it is an outward reflection of my inner creativity.

The next day my friend Reina and I were in TJ Maxx buying candles when a random woman came up to me and told me she had seen me at the fancy pants salon the day before and that she liked the way my hair had turned out. I smiled a big smile in honor of her validation of my almost platinum blonde hair, and grinned at the knowledge that people just want to be seen and this stranger saw me and then took the time and energy to say hello.

My son Curtis.

My son Curtis.

Celebrating with my friends.

Celebrating with my friends.

Lululemon for my birthday, thanks Joe!

Lululemon for my birthday, thanks Joe!

A Botched Boob-Job

 

If you Google botched boob jobs, the pictures you see here will come up; grotesquely undesirable breasts complete with commentary. I had a botched boob job, but mine was far different than those of these women.

During a unilateral mastectomy (one boob) a couple of years ago, I had immediate reconstructive surgery. The breast health surgeon was there as well as the plastic surgeon. One giveth, one taketh away. It has been complicated because I had already had one course of radiation on that breast and radiation degrades the tissues and its ability to maintain a foreign object. It all went well and after multiple surgeries, I had two perfectly natural looking augmented breasts. I was impressed.

Then the cancer came back for a third time. The doctors told me I would have to have the implant taken out and a tissue expander put back in for the better part of a year while I underwent chemo and another course of radiation. I was devastated at this news. The tissue expander is by far one of the most painful aspects of this whole journey. I know I have complained about it before, but I just can’t complain enough about this torturous device. There has got to be a better way to “hold the space” for an implant without putting a hard squeaky toy in a woman’s chest wall. I spoke endlessly with my surgeons about this, even negotiated a way to live with the tissue expander for a shorter amount of time than what they originally wanted. However, I may need to become an advocate for a new type of technology, or hire a team of engineers to come up with something different on my own, because what is available is ridiculously painful.

I got through the nine months or so with the tissue expander and now it was time to remove it and replace it with a nice soft pliable silicone implant. I was never happier to undergo a surgery. But after surgery, things started to go downhill. My body was not healing. The radiation oncologist warned me that all of the radiation that I have had could cause the body to reject an implant all together. The tissue is no longer healthy, which is what they wanted in order to keep the cancer from returning. But without healthy tissue, there is no healing.

4 weeks post-surgery the incision opened up and a flood of fluid pooled around me. I was completely freaked out as I could tell that my body was “rejecting” the implant. The radiation oncologist suggested that I just remove the implant altogether and have only one breast…I looked him square in the eyes and asked him how many body parts he was living without because of cancer. He looked away. I called the plastic surgeon. 

“We need to get you in tomorrow for emergency surgery” said the surgeon. “I want to swap out the implant which has probably become infected, move the incision in order to find healthy skin that will heal and put a drain in so there is no pressure on the incision as this will take a long time to heal.”

“Fine,” I said. “We need to save her; I’m not ready for a uniboob.”

So back to surgery I went, I think this was the 15th on this same little breast, but I wasn’t giving up.

Since I was their last case of the day, I couldn’t eat or drink anything and I had to wait around all day while they squeezed me in for this emergency procedure. It was starting to get dark outside and the staff was starting to leave the surgery center for the day. Finally it was my turn. They wheeled me into the OR and I looked at the clock, it was 4:30 pm. The anesthesiologist came in and mixed up a nice cocktail for me that he put into the IV. He asked me a question, but I don’t remember answering it, man I love that stuff!

A couple of hours later I was in recovery and Joe was back by my side. We drove home and I settled in to begin the long road to healing. It has been 10 days since the surgery, I still have the drain, but the surgeon is seeing good signs of healing. I told the universe that I am coming out of this thing with two breasts and no cancer. I will settle for nothing less and I won’t give up on being healthy and whole.

But the question that still lingers on my lips is why oh why do woman have grotesquely weird augmentations done to themselves?