Angelina Jolie is back in the headlines with her latest health decision to remove her ovaries and fallopian tubes after a cancer scare. Suddenly everyone is once again discussing the breast cancer gene mutation, BRCA1 for Angelina (BRCA2 for me). It brings to light the fact that women can arm themselves with education regarding proactive decisions, thereby lowering their risk of developing cancer.
Angelina's decisions about her prophylactic (preventative) surgeries have been met with much controversy but when the cancer cards are NOT in your favor, everything is cast in a new light.
We came from all over the world, all walks of life, socioeconomic status and age. Nearly 200 women whose lives were changed forever by one sentence: “You have breast cancer”. We were accompanied by our best friends, sisters and a few brave husbands. We had all come together for a Breast Cancer Thriver’s Cruise sponsored by Breast Cancer Wellness Magazine.
My heart was heavy as I bid farewell to my two young sons. They were sad to see their mom leave for six nights. My husband put on a brave face and promised to serve at least one vegetable at every meal. Even the dogs seemed anxious as I departed...who would fill their water bowl and take them for long walks every day? Ah yes...we women tend to hold down the fort for the entire family but I knew my time away would benefit everyone.
I was alone in my endeavor to set sail, meet others and perhaps make a few friends. I had no idea that this cruise would be life changing. Simply escaping the demands of everyday life with women who “get it” would have been enough for me. I was excited to meet my roommate, a survivor from Australia with whom I had connected via social media but had never met in person. Giddy anticipation set in as my shuttle dropped me at the airport.
There’s an old adage that applies to any new situation in life: “You don’t know what you don’t know”. This certainly was the case for me when I was diagnosed with Stage III breast cancer in the fall of 2012. I had no idea that there were so many different types of breast cancer, different treatment options and how the emotional component of breast cancer can impact survivors after treatment ends. I’ve always considered myself a resourceful person but I had information overload throughout much of my journey.
I hesitated to blog about this for some time now, but the message continues to come through loud and clear from breast cancer survivors throughout the world. No one knows what to say to us, so they say something that is not helpful or even worse, something that is offensive. Many of you reading this have said something along these lines but you should know that you are not alone. Please read on and learn how you can help in the future.
#5: “You’ll have so much fun with a wig! Besides, it’s just hair. It will grow back.”
Next to the obvious, hair loss is one of their biggest concerns for women when they are diagnosed with breast cancer. It can be traumatic and stigmatizing, announcing to the world that you are sick. In the scheme of things, it is just hair and it will grow back, but please don’t trivialize this very difficult part of the process.
#4. “OMG! Girl you are so lucky! You are going to get a free boob job and lose weight from the chemo!”
Winning the lottery: luck. Being diagnosed with breast cancer...not so much. A bilateral mastectomy is not the same surgery as augmentation. Our lives are literally on the line when making decisions about surgery for breast cancer. I often joke that I will be “perky” forever, but truth be told, my implants are a constant reminder that my body will never be the same.
Advances in treatment have given us an arsenal of tools in the fight against breast cancer, but chemotherapy is not easy. In a true paradox, many people gain weight during chemo from the steroids and fatigue related to chemotherapy.
Finding a “new normal” after breast cancer is not easy, but most of us are completely unprepared for the challenges of intimacy after a breast cancer diagnosis.
Fears of rejection, insecurity about our body image and physical pain make us want to put on our granny panties and hide under the blankets from our partner. Add in the changes in hormones: early menopause from chemotherapy, hormone therapy or a hysterectomy and any memory of a lascivious libido becomes a distant memory.
There is HOPE...even for those who have the libido of a wooden table.
Sadly, this is a subject that is rarely discussed due to its personal nature. In an attempt to break the silence, I asked my fellow breast cancer survivors throughout the world about their experiences with intimacy after breast cancer.
They shared similar stories about their struggles and were desperate for answers. You will find their quotes throughout this article, left anonymous for the sake of privacy.
Some women suffer in silence while others have hit resistance when asking their doctors for help.
We need to remember that oncologists are in the business of saving our lives by extinguishing cancer. Most of us will be eternally grateful to thier oncology teams for stomping out cancer, but few doctors mention that our love lives might be impacted by our diagnosis and treatment. Determined to learn more, I sought out an expert in the field.
Tamara Williams-Reding, M.Ed, is a licensed professional counselor specializing in psycho-oncology. She works in an oncology office with a variety of cancer patients. A breast cancer survivor herself, she began to research intimacy after breast cancer following her own struggles.
“Breast cancer had taken so much from me. I refused to let it take away my sex life with my husband. I knew that I wasn’t alone in this struggle after talking to other survivors in my practice. I began speaking to groups about this subject so that other survivors know that they are not alone and to offer solutions to women who are struggling.”
Learn more about Williams-Reding by visiting her website: twmreding.com
“Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me; Your rod and Your staff, they comfort me.” Psalm 23:4
This has always been my favorite bible verse. I never dreamed that I would lean so heavily upon these comforting words at the age of 42 when I suddenly found myself staring death in the eye. It all started with one sentence that would change my life forever:
“You have breast cancer.”
I have always found strength in my faith but learning that I had a sneaky form of Stage III breast cancer was the biggest challenge that I had ever faced in my life. I called upon God to walk through this valley of darkness with me and I picked up my own rod and staff in the form of HOPE.
The day after that phone call, I met with my oncologist to discuss all of my treatment options. She kept referring to five year survival rates throughout our conversation. I finally interrupted her and told her that I didn’t care about five year survival rates. I wanted the treatment plan that would help me survive for 40 years. We took an aggressive approach to treatment and I went home that night and planned my 40 year survival celebration. It is set for October 17, 2052 on the beach of Sanibel Island, Florida as the sun is setting. It will be the party of a lifetime and everyone is invited!
It's hard to believe that I had my bilateral mastectomy one year ago this week. Everyone reacts differently to this emotionally charged major surgery. Please remember that there is no right or wrong way to feel at any point in your journey through breast cancer. Some women celebrate this day as evidenced by the survivor who danced in the operating room just prior to her mastectomy this week. On the flip side, I've heard of women holding a memorial for their breasts post surgery. Others are terrified of the surgery and the unknowns of recovery. Many are still in shock from the diagnosis and progress through their surgery with little or no emotion at all.
If you are facing surgery for breast cancer in your near future, please know that you are not alone. Look around this website or visit us on Facebook where you can share your concerns with breast cancer survivors throughout the world.
As I emerge from a year of treatment from Stage III breast cancer, I have twelve new scars. They vary in size, but every scar tells a story of survival. I’m humbled by how much my body has endured this past year in the name of beating a disease that does not discriminate.
As my physical scars continue to heal, it’s important to acknowledge the hidden scars of breast cancer. The scars that you cannot see often take longer to heal and have the biggest impact in our lives. My fellow breast cancer survivors will relate to these hidden scars:
1. Loss of innocence:The worst hidden scar of breast cancer is the loss of innocence....about everything. An unexpected breast cancer diagnosis put my life on a course that I never expected. One day I was finishing a 5K, healthy and happy. A few months later I was staring death in the eye, in the midst of a year of treatment. Every time my boys hug me, it sparks a determination to be here to hug them every day of their childhood and watch them grow up and some day hug their children. My innocence was stolen the day I was diagnosed and my life will never be the same. I know that I'm not the only survivor that feels this way.
One year ago today, 10/17/12 at 4:25pm, my life changed forever when I heard those words,
“You have breast cancer.”
Today is my first survivor celebration and I am officially done with all treatments and surgeries! This is the first of forty survivor celebrations that I plan to celebrate, with my most exciting one planned for October 17, 2052. It will be held on the beach as the sun is setting with all of my friends and family.
For now, I have been reflecting on this last year of my life. I’m a bit overwhelmed with how much my life has changed. Most of you are probably thinking that only bad can come out of year of breast cancer treatment but I've learned some amazing life lessons.
Life lesson #1: It is vital to put things into perspective. I know it is cliché, but I no longer sweat the small stuff or even the big stuff as much as I used to. If I find myself getting stressed out, I ask myself two questions: can I fix it and will it matter one month from now. I fix it if I can and if not, I try to let it go. It’s an ongoing balancing act, but my perspective on what matters has changed dramatically.
Most of my fellow breast cancer survivors can relate to my experience the other morning. Overnight, my new sprouting hair was suddenly too long to spike up across the top. I had curls that would pop out on the sides, too short to blow out but too long to contain. I shared my feeling of panic with my husband, wondering how I was going to walk around, looking unkempt with crazy hair. I didn’t have a plan...which is never how I like to exist.
This particular day, however, was not supposed to be about me. It was about my eight year old friend, Linzi, who had been growing her hair for the sole purpose of donating it to a company that makes wigs for kids with cancer. This day had been long coming and I was excited to celebrate this day with “my little girl”. I’ve known Linzi since the day she was born and she is extra special to me. She lets me play with her hair and talk about girlie things with her when the level of testosterone is too high in my house between my two boys and husband.
I saw her from across the crowded restaurant, smiling and laughing with her friends. The sounds of live music and picturesque bay filled with sailboats and yachts faded away and I could only see her. I felt a magnetic pull to her but resisted the urge to leave my family and my half eaten dinner to approach her. It didn’t seem fair to bring up the one subject that I knew would be painful for her, yet bonded us in a way that only a fellow breast cancer warrior would understand. I was drawn to her and yet would never ask about what was so obviously uniting us...her post-chemo hair.
I would recognize that hair anywhere. I was surrounded by various stages of it during my nine months in the breast cancer center. I was so desperate for encouragement during my bald days of chemo that I looked up pictures of fellow survivors who were brave enough to post pictures of their journey through hair growth. I texted my old classmate/fellow survivor nearly every day when her hair started growing out...she was ahead of me in treatment so she had become the expert. I bothered her enough that when she was groggy from anesthesia after her bilateral mastectomy, she told me to lift her paper surgical cap to examine her hair...I complied and hoped her husband didn’t think I was completely insane as I was admiring his anesthesia-induced wife’s head. I see my own short hair now when I look in the mirror every day and try to decide how to style it.
I was thrilled when my hair started coming back after chemo. But only while spending the month on Sanibel Island have I shed my wig and hats. I put on a brave face and went out with my super short, wavy, spiked in front hair for the first time. The funny thing is, no one really seems to notice. I put on an incredibly brave face and imagine that I am sporting Halle Berry’s pixie cut...embracing the idea of "fake it ‘til you make it".
If you are from my generation, you have probably seen the original Footloose movie and will smile with fond memories as you recall Kevin Bacon’s character quoting the bible verse about
“There is a time to weep and a time to laugh, a time to mourn and a time to dance.”
The verse also says there is a time to tear and a time to mend. As I walked along the beach early this morning, I was very contemplative about this last nine months of my life since my diagnosis. We all go through the gamut of emotions on our journey through breast cancer...there is a time to weep, a time to laugh, a time to mourn, a time for peace and most importantly, a time to heal. I have finally reached my time to heal and this morning, I was overcome with gratitude to have made it through the roughest part of my journey.
“To Eat or Not To Eat” that is the question for me as I move past treatment and into “Life After Breast Cancer.” I’m not alone in this quest. There are entire discussion boards on breastcancer.org dedicated to the burning question, “What should I eat after a breast cancer diagnosis?”
I want to start by saying that I am reasonably intelligent individual and I have a basic knowledge of how to do research from my graduate studies. This seemingly amazing combination of skills has done nothing for me in this case...I have no idea what to eat at this point! The entire research world is fraught with inconsistencies and confusion. Pardon me while I ramble on about my findings:
Soy: soy produces a plant based estrogen. Many breast cancers, including mine, need estrogen to grow. So soy is out, right? Studies have shown this to be the case, however, other studies have shown that it actually attaches to the estrogen in our bodies and prevents it from feeding breast cancer cells. The jury is out and for me, so is soy. Easy answer until I realized how many foods contain soybean oil. Holy cow!
If you are anywhere near my age, you are likely singing, “Highway to the Danger Zone”...the very famous song from the 80’s movie, Top Gun. Sorry to disappoint, but my blog does not involve Tom Cruise or stealth fighter planes. A few stealth cancer cells, perhaps...
Last week, my radiation oncologist told me that I was entering “The Danger Zone” for my skin during my last week of radiation. It’s funny how this warning never even fazed me. The thing is, I’ve been living in the danger zone since October 17, 2012...the day I found out that I have breast cancer.
Three surgeries, 16 weeks of chemotherapy, 27 radiation treatments (#28 is tomorrow and I will be DONE) and a big ball of emotions wrapped into a two word diagnosis: breast cancer. Now that I am about to complete treatment, I am facing a new danger zone: moving past breast cancer.
After being under constant supervision by nurses, doctors, blood tests, body scans, etc for nearly 8 months, I will walk out of radiation tomorrow and be on my own. I’m ecstatic; but quite frankly, it’s a little bit frightening...a whole new danger zone.
I’ve lost count of the number of people who have approached me in person and through social media about my opinion of Angelina Jolie’s decision to have a prophylactic bilateral mastectomy. I’ve seen the banter back and forth, the criticism and the praise.
It seems like the whole world is suddenly taking about breast cancer and the excruciating decisions faced by women who live in fear of this ugly disease. I have mixed emotions about her decision to go public but the overriding feeling is one of empathy. Angelina Jolie has fame, fortune and the world’s sexiest husband. But rest assured, when she lays her head on her pillow at night, she faces the same demon that all of my fellow warriors face: she does not want to die from breast cancer. Once you have been touched by this disease, either through an invasion of your body or knowledge that you have the gene, your priorities change. Your bucket list includes beating this disease long enough to raise your children.
For those of you who follow me on Facebook or Twitter, you know that I received positive news last Friday. My seventy two hours of waiting felt like it would never end and yet it did...with the report that no tumor was seen. What a relief! Prayers answered. Back to my new normal.
Yesterday, I completed Radiation #9 of 28, then had my weekly visit with my Radiation Oncologist. I was nervous about the visit after last week. The visit was short, sweet, and to the point: how are you, how is your skin, any problems? "Fine, fine, no”...see you next week.
I’ve talked before about finding a new “normal” when dealing with a health crisis or any other challenge in life. When a crisis hits, everything is turned upside down. Emotions assault us and at times overtake us, nightmares, sleepless nights...we have no control over anything. As we start to deal with the semantics of the crisis as well as the demands of ordinary life, we begin to settle in to a “new normal”. This has happened for me during the last six months since my breast cancer diagnosis.
My new normal includes a specific treatment plan. I was thrilled to be on the “downhill slide” of treatment when I started radiation last week. My countdown to summer and a trip to the beach had started and I was happy with my new normal.
Until...my “new normal” was interrupted. “Please hold for this breaking news. We will resume normal programming after the break.”
It’s amazing how one’s perspective can change when dealing with any crisis in life, especially a health crisis. The initial days are always the hardest, often filled with shock and a wide range of emotions. As time marches on, we fall into a routine of a “new normal” and our perspective changes. This has been the case for every survivor that I’ve spoken to about their journey through breast cancer.
Initially, my doctors didn’t think I would need radiation. We thought my tumor was small, so a bilateral mastectomy and chemotherapy would be my treatment plan. I was very disappointed when the unexpected pathology report resulted in the need for radiation. As time has passed, not only have I accepted the need for radiation, but I am eager to begin this last step of breast cancer treatment.
I will have 28 treatments...every day...Monday through Friday for the next six weeks. The treatments take about 15 minutes and the side effects are general fatigue towards the end of treatment and skin irritation/burning/peeling at the radiation site. Minor, compared to chemo and surgery but 28 days of treatment is a significant amount of time.
I am through the worst part of my breast cancer treatment: bilateral mastectomy, 16 weeks of chemo, hair loss, scars, two other surgeries and two of 28 radiation treatments are complete. Just as I am waking up to a rather harsh reality of this last six months, I am struck with yet another very odd side effect of chemo: I have lost almost all of my eyelashes.
Normally, our eyelashes grow and shed on an intermittent basis...as one falls out, there is another one growing to replace it.. Chemotherapy can cause the eyelashes to all coordinate their cycle of growing and falling out, so they all fall out at the same time then grow back very slowly. I’ve heard of this happening for several months after chemo is completed. It’s an unexpected slap in the face after everything my psyche has been through during this journey.
After surviving the eye of the storm, I was exhausted physically and emotionally. Out of nowhere, came the biggest, brightest rainbow that I’ve seen since the day I was diagnosed: no cancer in any of the 22 lymph nodes: