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

2013 in review

Thank you to everyone who read my blog in 2013. My journey continues; I am starting 2014 cancer free, have a great new job and my son is playing Varsity Basketball and  preparing for college next year, I really could not ask for more. I made it through to the end of the tunnel and the light is shinning on my face. My hope for 2014 is that I will remain cancer free and have a successful reconstruction. I remain hopeful and confident about my future. Love to you for taking this ride with me.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 14,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it.

Click here to see the complete report.

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.

Was Angelina Jolie Being Honest About Her Mastectomy?

Was Angelina Jolie 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

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.

What does breast cancer treatments look like

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

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.

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.

Degomme Family

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 Anaisys

Claudia and her supportive, loving husband Yvan.

Claudia and her supportive, loving husband Yvan.

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?

Responding When Your Relative is Diagnosed with Cancer

Responding When Your Relative is Diagnosed with Cancer_0325_KF_MW (1).docx 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.