The One Breasted Warrior

One breasted warriorI’m still fighting. It hurts physically and emotionally. I am not getting any closer to complete healing or a body that has all of it’s parts in place. I remain hopeful though, hopeful that the cancer does not return. My foolish, vain self marched into the plastic surgeon’s office recently and  boldly stated that I would like to discuss my options for making another run at reconstruction. I haven’t  stopped worrying or crying since that bold move.

“We need to find the root cause of the chronic pain in your chest.” stated the surgeon. “It is most likely necrosis of the bone from radiation. I can order an MRI and we can see what is going on in there. If it’s nothing than we can start with a scar revision, then blah, blah, blah…” He continued.

MRI? That picks up cancer too I thought. Is he looking for cancer? Why do these doctors want to continuously look for cancer in my body?

I had two MRI’s done the following week on two separate days, double the stress. One was to check the left breast that still remains with it’s small but perfectly proportioned implant. The other MRI was to look at my right chest and ribs where nothing remains but skin tact down onto my bones and pain that never stops. Wearing a bra and a prosthesis is an act of a warrior. It is like my shield as I go out into the world trying to fit in with the normal breasted women. It is incredibly painful to wear this shield as it hits right where all of the pain is concentrated. I  dig for a warriors courage just to get dressed for work in the morning. By the end of the day that bra must come off immediately and I greet my son and his friends with one breast. Most are too polite to stare, but they all hug me sideways, as if they are afraid to hurt me or confirm what they see through touch.

The MRI’s came back inconclusive. “There is something on your ribs but we are not sure if it is injury or metastatic bone cancer.” Said the surgeon. “I am going to have the Tumor Board review your case and make a recommendation. Don’t worry, it’s probably nothing.”

How many times have I heard that? “Don’t worry, it’s probably nothing.” News flash to my team of doctors, it has always been something when you go poking around looking for cancer in me. I cringe when I hear those words.

The “Board” recommended a PET scan. Where in the fuck is my warrior Xanax?!

The last time I had a PET scan was right before I started chemo therapy a couple of years ago. This time, I merely went to the plastic surgeon and inquired about reconstruction and now I am having a contrast dye put into an IV that is hanging out of my arm. The tears rolled freely down my face as I was positioned into the machine. “Are you okay?” Asked the tall, dark, handsome technician as he handed me a tissue and waited patiently for me to stop crying so he could start the test. I dug deep for my warrior strength and fell still and quiet while the machine hummed around me searching for cells that are ruining my life and trying to kill me.

The results were sent to the Tumor Board and they recommended a biopsy of my ribs.

I called my oncologist and pretty much said what the fuck?! “I don’t think there is anything to be worried about,” he said. I couldn’t breath. I walked outside of the hospital where I was at work to continue the conversation but my legs were starting to go numb from panic.

“Let me have another radiologist take a look at the films.” He offered. “I will be in touch, don’t worry Trina.”

One breasted warrior 1

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Deepak, Oprah…Help!

Oprah and Deepak

An excerpt from my manuscript.

The job-protected portion of my short-term disability was running out, my employer wanted me to come back to work or step aside so they could hire someone else to fill my position. I was in no condition to consider going back to work, and I was devastated when my employer denied my request for an extension of my job protected leave.

I was in the middle of treatment and I had to face walking away from a position that I had held for over 11 years. I negotiated with myself six ways to Sunday trying to figure out a way to maintain my position and continue my life-saving treatments. My doctors, co-workers, family and friends cautioned me to not go back to work, but I struggled really hard and for a long time over this decision. In the end I had to prioritize my health over my wealth. I notified my employer and their insurance company that I would not be able to return to work. They placed me on long-term disability and made arrangements to pick up their company car, computer, printer, etc.

My life was changing before my eyes and there was nothing I could do about it. I was no longer in control, and I didn’t have an exit strategy from my career. I cried a lot over this, it was devastating for me. For over 20 years my career had provided for me and it was the one thing that I could (somewhat) control. As a cancer patient, I felt like I had no control, no power. I had to endure the treatments or risk death. Now two huge aspects of my life; my health and my career were out of my control. I became very depressed. I had trouble sleeping and couldn’t eat. I realized that a huge portion of my identity was tied to my career and my ability to earn. For half of my life my focus had been on my career and now my focus had to be on my health. My ego was in my way and I had to learn to let it go. I turned to the one person I knew who could help me let go of my ego; Oprah.

“We need to subscribe to OWN.” I told Joe. “I need Oprah right now.”

Joe, being the loving, sweet, generous man that he is, picked up the phone and called the cable company. He ordered OWN right on the spot. I set out to see what shows I could find to nourish my soul and get my ego in check. Thankfully Oprah had it covered. Between Super Soul Sunday and her catalog of shows on the topic of spiritual growth, I could learn another way to deal with my ego and my sadness because of it. The ego is a funny thing and it is so powerful. But once you get a handle on your own ego and understand its toxic effects, it is liberating to be able to let it go. I learned that when I am fearful because I have a disease that recurred multiple times or jealous because my friends and family are living normal lives, or perhaps irritated because my fears have been triggered it is always my ego rearing her ugly head and doing so because I am frightened. Being able to recognize it was the first step in being able to corral it.

Ego after Cancer

Our egos and fears get in the way of our true selves and I was embarking on a mission to get-to-know me, the inner me. I was vulnerable, raw and open to learning a new way to cope. What I learned changed my emotional outlook on the aspects of my life that I could not control. By calling out my ego I could control and humble it. I learned that I could recognize fear and deal with it head on. Not dealing with fear head on gave it power and I needed to disarm it so I could simply breathe. I learned that allowing yourself to be vulnerable is the most courageous act there is. And I finally learned how to meditate thanks to Deepak Chopra.

Thank you Oprah, you, your programming and your guests became my spiritual guides, and I plan to thank you in person someday when you invite me to your show to talk about this book. Just putting it out there, creating a new reality for myself, letting my dreams float through the universe, and allowing my ego to quietly sit on the sidelines as this journey unfolds.

Discussion points for readers with cancer: What has cancer taken from you? What tools do you use to cope with these loses?

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

No Fear

This is what I know for sure. After three diagnosis of breast cancer, I don’t fear much anymore.

It has been said that there are two psychological houses that humans approach each and every situation from; the house of love or the house of fear. If you approach life with love then you are compassionate, forgiving, loving, giving to others, altruistic, kind, empathetic, ready to serve, possess inner peace, forgiving, and you don’t lead with your ego. If you live in the house of fear, then you lead with your ego, constantly beating on your chest to prove that you are right, you are angry, hurt, snarky, rude, demanding, and unforgiving. The truth is not many humans achieve living in the house of love at all times, that is what makes us human, we possess a myriad of emotions and learning to control and direct them for the good of yourself and others is a very hard thing to do. It takes practice, discipline, willingness, and hard work.

So what is it that we are afraid of in this house of fear? I say we fear not being loved. Which let’s face it is a fascinating concept; we act in fear because we are afraid we won’t be loved, instead of acting through love where love has no fear. I know, I know… I am starting to lose myself here. It is a complex, yet simple theory.

So back to my lack of fear, when I say I don’t fear much, that doesn’t mean that I don’t visit the house of fear, it just means that I have stopped living life in fear of all things big and small. I am not afraid to take a risk, to say what I mean to say, to stand up for what is right, to show up and be counted, to take a leap, to try a new hair color, to learn a new trick, to mend a fence, or to tear one down if it no longer serves me well. No fear. I don’t have time to be afraid. Do you?

A week ago I attended a memorial service for a 17-year-old boy who died tragically in a car accident. He went to the same high school as my son, they played little league together when they were young and I have known his mother professionally for 21 years. The entire high school and their parents were at this memorial, we are a small, tight knit community and to lose one of our children had a ripple effect that enveloped us all. There is no greater a test on this earth than the one that was set before his parents.

Alex Maier

Alex Maier, a fearless hero to me.

We stood in silence in the stands of the football stadium, where Alex was a star soccer player. You could have heard a pin drop as Alex’s parents walked through the two rows of soccer players to the white chairs that were set out for them in front of a stage where large pictures of their son smiling for his senior photo sat on easels. They sat down at first, but then his mother, father, and sister, stood back up and turned around and faced all of us standing there for them and for their son. With their arms wrapped around each other for support, they stood looking at us looking at them, acknowledging all of us with love and appreciation. They were thanking us for showing up, for showing support, for sharing love with them. They did not exhibit fear at that moment, only strength, grace and gratitude.

Alex was a giver, unbeknownst to his parents he had signed up to be an organ donor when he applied for his driver’s license. He saved 6 lives with his generous gift and gave many more the chance to heal with tissue donations. I am a recipient of donor tissue. I have received this gift from a stranger during a reconstructive surgery. I quietly vowed to Alex that I would live in service of others, working hard to live in the house of love and to be forever fearless.

What do you fear? And are you a registered organ/tissue donor?

organ tissue donor

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?