Breast cancer is not a costume that can be taken off once October is over. Most women who have had breast cancer at any stage never forget the fact that they had the disease. For too many, the disease is a real and present danger every single day of their lives. For us, breast cancer awareness is every single day of the year, 24-hours a day.
Many people have expressed their shock that Robin Williams’ smile and laughter hid so much pain. “Who would have known?” was a common question when the news of his suicide was made public.
How many people with breast cancer are masking their pain behind a brilliant smile? We often feel so much pressure to smile and to be cheerful that if we don’t do so, we are accused of not being a “good cancer patient.”
I read the following via some friends of mine who posted it in their blog. It really nails the point. Written by the mother of a young boy with malignant spinal tumors of unknown origin, this paints a picture of what happens with a cancer diagnosis.
“Ok folks, I’m getting personal.
“Most of the posts on this blog are general mommying messages. Some are funny and light. Most are universal. This one gets more personal – and yet through the personal, I think it will resonate more generally.
“We live in a Cult of Optimism – in our culture, people are peppy and youthful and vibrant. We whiten our teeth and color our hair. We put on flashy clothes and walk into interviews with a “can-do” attitude. All of this is fine… to a point.
“At some point as a parent, we feel weak and frail. At some point, we face tough decisions and times of failure. At some point, we cannot maintain our “happy and fine” attitude. At these times, the Cult of Optimism works against us. Because at these times, we are not optimistic. We are not able to maintain our membership in the Cult.
“Our family has now spent the past year and a half facing an aggressive tumor. Our path is uncertain and our troubles are many. Throughout the ordeal, some people have been incredibly supportive of our need to be melancholy, nervous, or frustrated. Others have drifted away, presumably not comfortable with how to interact with a parent feeling ongoing grief and sadness.
“Having left the Cult of Optimism – temporarily or permanently - we sometimes feel alone. Because those in the Cult of Optimism will ask us “how are you?” but frown if our answer is anything but “fine.” They will not allow us to be sad. They feel uncomfortable with our grief.
“This post is an act. A statement. An invitation to a new twist in parenting: Permission to Grieve. We allow ourselves to be sad and overwhelmed. We relinquish our control and desire to “fix” each other’s dilemmas and instead hold each other’s hands and support each other during our times of weakness. We share, and we cry together. We acknowledge that we have little control in our world, little control over our children. We sympathize that parenting is not always joyful, not always fun, and sometimes downright unfulfilling. And that’s okay. We can be disappointed and grieve together.”
I liken the Cult of Optimism to bullying. Women with breast cancer are often relentlessly bullied. We are told to be cheerful, to never give up, to have courage and hope and to simply believe that we will get well. We are bombarded with the radiant smile so often presented in all those rallies, runs, relays and fund raising events. I read/hear over and over, “Well, I did this and I SURVIVED! So can you!”
Everywhere, we are faced with the most physical symbol of a woman undergoing breast cancer treatments … that of a woman with a bald head. (Let’s not forget that other cancer treatments also result in hair loss … not just breast cancer treatments.) Most of the time, those bald heads are proudly put on display as if losing hair is a badge of honor and is something to be celebrated. Yes, there’s something to be said about overcoming challenges, but what about those women who choose not to exhibit their bald heads? Those who won’t step out of the house without a wig on? Are they left out of the bald celebration? Are they left feeling as if they let the “breast cancer survivor” badge down?
Those with Stage IV metastatic disease don’t know where to fit into the celebratory atmosphere of breast cancer awareness month. To be frank, most of us feel that the name “breast cancer awareness month” is a misnomer. Most people are more than aware of breast cancer, but most people know nothing about the metastatic breast cancer that kills.
Metastatic breast cancer patients may be living very normal lives, but most of us are undergoing treatments that will never have an end date. We will be in treatments for the rest of our lives, however long they may be. While many of us take great joy in every single day we have, many of us are overcome with depression and loneliness. The shadow of death is always present, no matter if it’s large and looming, or just a tiny sliver in the corner.
Bullying an early stage diagnosis patient to “move on” is not helpful either. Side effects from breast cancer treatments can last a lifetime. Lymphedema, scarring issues, premature menopause, bone and joint pain from adjuvant hormonal treatments and fear of recurrence are just a few of the very real impacts of breast cancer in a woman’s life, both during treatments and following treatments for those who are declared no evidence of disease. Post traumatic stress disorder is a known ailment for those who have gone through a serious illness, yet is often not addressed as a part of recovery from breast cancer treatments. Early stage diagnosed women are hard pressed at times to describe what they have gone through and what they are STILL going through, because, if they don't fit into that cheerful image, they are not meeting society's expectations of who a breast cancer patient should be.
Because of the relentless cheerleading aspect of breast cancer, many women don’t feel free to express their fears, anxieties and anger over having this disease. Many feel that once they are diagnosed, they have a pink ribbon membership pin slapped upon them with a “Smile! You can do this! You will survive!” Many don’t know what to say when faced with such reactions.
The Cult of Optimism refuses to admit reality. The reality is, breast cancer sucks. All cancer sucks. It’s time for a cure. It’s time for the brilliant smiles to stop hiding the harshness of the disease and it’s time for us to admit that having breast cancer is nothing to celebrate.
This has GOT to be one of the most offensive things I have ever seen done in the name of "breast cancer awareness." Because I do so much reading on breast cancer, most of the ads that fly across my page are from sites pimping pink ribbon paraphernalia. One particular site has so much pink on it that it truly makes you want to vomit into one of their advertised "vomit with style" trashcans. They advertise that purchases help fund mammograms, but the fine print is that each purchase funds 1% of a mammogram ... meaning that 100 purchases must be made to fund even ONE mammogram. The site has little to do with helping women in need, but much more to do with wealth mongering in the name of "awareness."
This site also encourages people to send photos of what they are doing for "awareness." Lots of photos of cookies, cakes, candies, etc., most in the form of breasts or ribbons.
And then this photo submitted as a Halloween costume. Words fail me. This is a travesty and a joke in which the humor fails me. It's insulting.
Okay, it’s getting towards the end of October and that means we can move on from the breast cancer stuff, right?
Breast cancer knows no boundaries. It doesn’t discriminate. Statistically speaking, every day of the year, one woman dies every 15 minutes in the United States due to breast cancer.
Yet, right now, for a limited time only, you can buy your pink ribbon paraphernalia for 70% off! What a bargain! That includes those snazzy “ribbon lenses” that accomplishes absolutely nothing in my book. (Originally $8.99 but now, they can be yours for ONLY $2.67 plus tax!!!!! What a deal!) Yes, the sale flyer was taped to the pink ribbon display because, after all, the pink ribbon is a fall item.
It’s this kind of nonsense that I can’t stand. In addition to all this junk being “on sale,” there is no mention of any donation being made nowhere. Just pink junk.
Melissa Ethridge said the following during her interview with "Dr. Oz."
"She said the doctor told her it was a very aggressive tumor that had come on very fast and her doctor sent her to a radiologist who told that usually they wait and get the answer later, but since they were really good friends, she unbuttoned her blouse and showed her that she had had a double mastectomy. She said to Melissa, “This is the worst that can happen to you. You are going to be fine.” Melissa said that really set her on the path to believe she was going to be fine."
I know mastectomies are not easy surgeries. I have friends who have struggled with long-lasting effects and have dealt with pain for long periods of time. However, in honor of Christina, Debbie, Michelle I, Franca, Catherine, Michelle H, Carole, Kate, Mary Margaret and Sheila ... all personal friends who have died of breast cancer metastases between January 7, 2013 and September 20, 2014, I'd like to go on record as saying, "A DOUBLE MASTECTOMY IS NOT THE WORST THING THAT CAN HAPPEN TO YOU."
I am incredibly happy that Ms. Ethridge remains cancer free, but as such, she has a responsibility to speak truth, not fiction. Granted, this was very early in her diagnostics process and perhaps the radiologist was merely trying to be encouraging, but by repeating such things on a wildly popular pseudo-science program such as "Dr. Oz" is just not right. She went on to take credit for her cancer free status being due to her diet and lifestyle because " if you are afraid of cancer or dying, your life will eventually go where you focus on." I'm glad she has determined the outcome for those with metastatic disease ... it's our fault. We made it happen.
Wanda is my friend. She and her husband live a modern-day nomadic lifestyle by being full-time RVers. They manage campgrounds in summers, pumpkin patches in autumn, Christmas tree farms in December and travel for joy in the spring. They are homeschooling their only son and giving him an education beyond books and computers. He’s seeing it all … both the majesty of the United States and the drama associated with being around all different kinds of people.
In March of 2012, at age 45, Wanda was diagnosed with Stage III, Grade III triple negative breast cancer. To be frank, this is about the worst primary early stage diagnosis a woman can get. Triple negative means that there is no known “fueling agent” (hormones or proteins) that causes the cancer to grow. It just grows on its own. Additionally, Grade III means not only does it grow on its own, it also grows very, very fast.
Wanda underwent neoadjuvant (before surgery) chemotherapy and then had a single mastectomy. Additionally, she underwent radiation, staying at an American Cancer Society’s Hope Lodge during the week so she wouldn’t have to drive the 115 miles each way for a five minute radiation session. Kudos to the ACS for providing real help during a challenging time.
Following her year of treatment, Wanda and her family started to move again. In September 2013, they came to my area to manage a local pumpkin patch as they had done the year before. I didn’t know Wanda in 2012, but after meeting in an online group, she and I made it a point to meet when she was back in the area and became instant friends.
While Wanda was in California, she developed a small bump on her arm. It got bigger very quickly. She and her husband cancelled their plans to manage the Christmas tree farm and headed down to Arizona where they had planned to winter. Wanda got into a doctor’s office rather quickly and in December, had surgery to remove the arm lump. The biopsy showed it was a breast cancer skin metastasis.
Further scans revealed that Wanda had cancer pretty much everywhere. Liver, lungs, lymph nodes, bones, skin … none of it good.
If there can be one “good” thing about triple negative cancer it's that it often responds very well to treatments. Wanda started a different chemotherapy treatment, but ended up in the hospital, close to death, due to blood clots from her port surgery. She continued on chemo using what’s known as a PICC line. Her entire arm bruised as a result of that PICC line, making Wanda a scary looking woman. She felt ugly. People started to avoid her. Because her chemo didn’t cause hair loss, no one associated her with having cancer, but with that nasty looking arm, people must have thought she was on drugs or something.
Her clotting issue was brought under control and she continued on her chemotherapy regime. One of the chemos consistently brought her blood counts down, so they were often delayed to every four or five weeks instead of every three. However, it all seemed to be worthwhile when her July scans revealed a massive reduction in all her tumors (many of them completely gone) and the magical word, “remission” was used.
Wanda and her husband started to put together a plan to get themselves reconnected to the RV world they had pretty much left behind. With her oncologist’s permission, they moved about four hours away from her treatment center, with a plan on how/when to continue her treatments. It took some organization, but their move happened just last month.
Then cancer reared its ugly head again. New scans showed some small growth, so one chemo was dropped and the other was adjusted. After one session of that chemo, Wanda found herself dazed and confused. Literally. Her platelets dropped to a dangerous level, her hemoglobin was low and she was in incredible pain and couldn’t breathe due to extreme chest compression. She went to an emergency room and was admitted with low platelets and low hemoglobin, but with pneumonia as well. To add insult to injury, she had an immediate allergic reaction to the platelet infusion and things ground to a halt as things were figured out. Fortunately, the reaction wasn’t life-threatening and once they used some pre-meds for infusions, she was able to receive another platelet transfusion.
Wanda is still in the hospital. She’s doing much better and she can now breathe. Her medical team is putting together a new plan for her cancer treatment.
At one point, Wanda put it simply, “I just want this to be over.” It was such a struggle for her to get necessary air to breathe and for a brief period of time, Wanda wanted to throw in the towel, admitting defeat. Of course, she is quite glad that others didn’t feel that way and that she’s not at the end of her options yet.
There’s nothing “pretty in pink” about the disease invading Wanda’s body. There’s nothing attractive, cute or sexy about it. Her story is a horror show reality that has no entertainment value. Her story is the one people want to turn away from, yet are drawn to at the same time.
Her story will most likely be a short one because of lack of knowledge on what to do with this disease. Metastatic disease is not curable and in many cases, it’s not treatable for very long. I continue to hope that Wanda’s Story will be an exception.
_I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease. I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.