Was Angelina Jolie Being Honest About Her Mastectomy?

Every time I hear of a woman being diagnosed with breast cancer or testing positive for the BRCA gene, my heart sinks. I close my eyes and take in a deep breath and hold them in my heart, silently whispering the phrase Namaste (the light in me acknowledges the light in you). I feel all the way to the core of my soul what they are going through or what they are about to go through.

When I woke this morning, I along with the rest of the world heard of Angelina Jolie’s wonderfully easy and glamorous experience with a nipple sparing elective double mastectomy. According to her article in the New York Times, she was back to normal in a few days. Her children have only witnessed tiny scars on her perfectly reconstructed breasts and she wants everyone to know how easy the whole thing was for her. And of course every news anchor is congratulating her for being yet another celebrity who chose to share her courageous decision. Why don’t we ever hear about the dark side of mastectomy? Why don’t we hear that women have a part of their body amputated but the cancer comes anyway. About how surgery can actually increase the risk of the cancer mutating or breaking free and becoming more aggressive? About the emotional toll that this has on women and the suffering that can take place? Why is this information being presented like it is a casual procedure without significant long-term complications?

Can I share the harsh realities with you Angelina? A mastectomy is not the panacea that the surgeons suggest that it is. I tested negative for the BRCA gene, underwent a mastectomy after my second diagnosis with breast cancer and then the cancer returned for a 3rd time in an aggressive invasive form although they had removed my breast and nipple. I have had 16 surgeries on my right breast and my body rejected the implant twice. I am in constant pain, and have not been able to return to work. I cannot even relate to your sugar coated experience and through my blog I have talked to countless women who have had experiences closer to my own. I admire your courage to talk about your decision to significantly decrease your risk; I thought I was doing the same thing when I agreed to be carved up. But were you really being honest? Back to normal in a few days? I’m sad that more women aren’t being totally honest with each other about how difficult a mastectomy is, the risks involved, or the fact that it isn’t the insurance policy that we all hope it will be. I wouldn’t wish my experience on anyone; I wish I had someone who would have shared the other side of the story with me.

It’s Not All About The Pink Bras…Meet Claudia

I met Claudia through this blog. I want to thank her for allowing me to share this letter that she wrote to her gynecologist after her doctor missed obvious signs of breast cancer. Claudia is incredibly strong and brave for sharing these pictures of herself in the hope of saving another woman from going through a similar experience. Thank you Claudia for your friendship and for your generosity.

Dear Doctor,

It has been one year since I was diagnosed with Stage 3A breast cancer. I had a tumor measuring 9 centimeters. Ductal and lobular carcinoma, invasive, advanced disease, as you must surely know as a physician. Since then, I have endured a very sad and hard path in my life.

I lost my breasts, lost both of my nipples, lost my hair, and I can’t have estrogen circulating in my body.  As a gynecologist, you know what that does to me physically, and emotionally.

Claudia sent this picture of herself with this letter to her gynecologist. Her doctor never responded.

I’m not sure if you forgot about it or not but I wanted to remind you of our last conversation.

You were my first line of defense against breast cancer. Here are the facts: one out of eight women will get some kind of breast cancer. Women who have fibrocystic or dense breast tissue have a higher chance of being diagnosed with it. Also, lobular cancer is very hard to detect. Knowing these three things should have made you think twice after reading my last mammogram report and after you personally examined me with your experienced hands.

I had a fat pocket that grew under my armpit and the only reason it grew there was because the tumor had pushed it out. I found out too late because you did nothing about it when I brought it to your attention.

My left nipple was leaking and turning inward, your words were, “It must be because you jog, because of the rubbing on your nipples, your brain thinks you are lactating.”

Burns from Radiation Treatment

Well, my nipple was leaking because I had breast cancer. My nipple turned inward because I had breast cancer and that mass under my armpit was due to breast cancer.

You have two girls. Can you imagine if this happened to one of them or to you for that matter? Can you imagine losing your hair, losing your breasts?  How about watching your mom, dad, husband, young kids, and friends see you go through this suffering and not able to do anything about it?

Tamoxifen may save my life but let me tell you something, it numbs me. The side effects take away my quality of life.

I am grieving right now. I don’t know if I will live for two or twenty years. How do you think I feel having to do tests every three months, PET scans every six months and then every day of my life hanging onto the thought that at any time cancer could come back?

Although this is not a blame game, many times my thoughts go to you. I do blame you for your lack of care and attention. Be happy that I am not reaching you through lawyers.

After the mastectomy, before reconstruction.

Pay more attention to your patients, teach them what to look for, educate them on breast cancer, or any other cancer related to your specialty. You made an oath as a doctor, have you forgotten what that really means?

Maybe I couldn’t have avoided the cancer. But you could have helped me avoid it being detected at stage 3.

Claudia Degomme, your ex-patient.

The Degomme Family

Note: Claudia was smart, she followed her intuition and sought a second opinion when her doctor told her that her symptoms were nothing to worry about. Her best friend who is also a doctor provided the answers she needed to save her life. Here in Claudia’s words are what happened next.

Anaisys came with her family to dinner on a Saturday. Something was telling me that there was something wrong with my left breast because my nipple started to leak a little and it was going inward, even though the mammogram had come back CLEAR. 

I asked Anaisys to take a look and she noticed a dimpling in my breast’s skin and she said that was typical of a tumor. She did not say much more, I guess not to scare me, but she told me afterwards that she feared I had a tumor. So she herself made the call to the breast surgeon and made an appointment for me. Monday I was at the doctor’s office at 9 a.m. with my husband, not knowing that soon I was going to go through the hardest, saddest, craziest ride of my life. 

 

Claudia and her supportive, loving husband Yvan.

Deepak, Oprah…Help!

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.

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?

Responding When Your Relative is Diagnosed with Cancer

 A special thank you to Kaitlyn Teabo of the Mesothelioma Center for writing this guest blog for my site.

When a family member is diagnosed with cancer, it can be hard to initially handle. It is common and natural for you both to feel overwhelmed, scared, angry, sad and other emotions all at once. This compilation of emotions can make knowing exactly how to react to the diagnosis that much harder.

If you want to help, but you’re not sure how, here are some ways you can make the process easier for your relative and yourself: 

• Listen. People process issues like a cancer diagnosis by talking about it. Show that you are listening by occasionally paraphrasing what your relative said and asking if that is what they meant. Unless asked, in the early stages of the diagnosis don’t offer advice. Your ears are worth more than anything at this point of the journey. The doctor will help your loved one and yourself through the process, discuss their prognosis, and help find the best treatment centers in your area.
• Tell Your Relative You Love Them. Even if you think it is implied, hearing that someone loves them can help with feelings of depression and isolation, which are common after a diagnosis. Show affection when you can, this effort can have a huge impact on the coping process.
• Don’t Compare. Sometimes when someone is going through a similar experience as you or someone you know, it may be easy to bring those experiences into conversation. But not all cancer experiences are the same, which is why you shouldn’t compare your friend’s mom’s cancer to your relative’s cancer.
• Help Without Being Asked. Some cancer patients don’t like to admit they need help and will neglect to ask when it is necessary. Little gestures can often make the biggest difference. Make your relative’s favorite meal or dessert and stick it in their fridge. Help with the laundry and housework. Drive them to appointments or do daily errands.
• Provide Comic Relief When Necessary. Yes, this can be a trying time for your relative and other members of the family and close friends, but it is also important to remember to laugh. Be careful not to offend your loved one, and only provide humor when it is appropriate. Remember to stay sensitive when they are grieving and offer a chance to laugh when they could use the reminder. Humor can be a great form of medication and may offer a way of healing.

As each diagnosis and each person affected by cancer is different, the ways to help your relative overcome the disease may also differ. These tips serve as a helpful guide, but you are ultimately the best judge on how to respond and act around your loved one. The most important thing is to just be there for them while providing support.

Author bio: Kaitlyn Teabo is a writer for The Mesothelioma Center. She combines her interests in writing, cancer research and emerging scientific technology to educate the mesothelioma community about asbestos and its related diseases.

1+1=2 Boobs

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?

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.

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 2^nd or 3^rd 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?!

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.

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.

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.

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.

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…

New Day, New Doctor, New Hope

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.