One of the great mysteries of life is that things are not what they seem – and the closer you get to something you thought you knew – the more you realize how little you really do.
It’s eye-opening and mind-altering to learn that someone’s journey is not only different than you ever imagined, but you may never, (because most people don’t), have taken the time to learn the real story of that journey.
After all, everyone has a story.
Stage IV
“Hard times do not come to stay, they come to pass.“ – Les Brown, motivational speaker
We have no choice but to believe this statement to be true, for without hope what’s left? But here’s one of the greatest challenges in life – still keeping the faith when the message is that you’re the one who is going to pass!
For Beth Fairchild, these were the words she received as she sat in front of her doctor, one week removed from a full hysterectomy: “Sitting there on the exam table in the doctor’s office, the doctor reiterated to me what I had been told shortly after coming out of surgery – you have Stage IV cancer – breast cancer. There are rare treatments available said the doc, but there is no cure for this. ‘I said how long do I have?’ Then just like in a movie she said, statistically speaking two years, 24 months, maybe a little more or a little less. That’s when I felt the air sucked out of the room.”
For Beth air had been in short supply since May of 2014, when after feelings of fatigue and intestinal distress she went to the doctor. “You are a 34-year-old business owner, (Beth is a tattoo artist), and foster parent, of course you’re tired,” the doctor told Beth. “Except the fatigue and the pain got worse”, Beth says. “Eventually my ovaries were tested and found to be growing very quickly, getting bigger all the time, so the choice was to have a hysterectomy because of the high rate of cancer in my family.”
The hysterectomy was completed, the ovaries removed, but the story had taken a turn. “The doctors come in to wake me up”, says Beth, “and tell me my entire pelvic cavity is fused together as cancer. They said the pathology report came back – as breast cancer. A week before the surgery I had a mammogram, after my hysterectomy I got a letter in the mail about that same mammogram, it said ALL CLEAR, see you next year. I probably would have never given it another thought.”
Breast cancer without any symptoms in the breast. Beth’s case is unusual, but not unheard of. As Beth states and most of us never stop to think about – “no one has ever died from breast cancer.”
When you do stop to think about it, it seems illogical, but true. As Beth explains, “women and men DO NOT die from breast cancer, they die when the cancer metastasizes and spreads to other parts of the body. 30 % of all breast cancer victims are diagnosed with metastatic breast cancer – Stage IV.”
Stage IV breast cancer means that the cancer has spread to other areas of the body, such as the brain, bones, lungs and liver. In most cases Stage IV means it’s the beginning of the end, a death sentence. For Beth this was the reality and after learning of her own diagnosis she says she “went home to die”.
“How could I have terminal cancer at age 34?” thought Beth. “I go to the gym five days a week, I don’t drink, I don’t smoke I should have been a poster woman, a role model for someone to not get cancer.”
But yet she did. And Beth says it took more than two months to process the news.
For someone who has always been a doer, an achiever, a fixer and a person who serves others and puts herself last, this was a problem, a problem Beth says she couldn’t make right. “I couldn’t fix it for me,” says Beth. “I couldn’t fix it for my husband, my kids and my mother who would have to bury me. I couldn’t fix it and I had no control over it. I wanted to fix it. I couldn’t believe my disease and my death could cause the most pain the people I love will ever experience in their lifetime. All these feelings and thoughts on top of the physical pain I was going through.”
Beth speaks in past tense, but is presently living in Stage IV. Nearly two-and-a-half year after diagnosis, the fact is she is still living, a blessing for her and those she loves.
The pain of metastatic cancer is not only physical, mental and emotional, there is also the pain you feel for others traveling along the same journey. “Breast cancer will not kill you until it becomes metastatic,” says Beth. “And once that happens there is no cure. Every year we are losing mothers, daughters, sisters, aunts, cousins – 40,000 people a year and that has not changed in 30 years. So what in the heck has all this Breast Cancer Awareness gotten us if the death toll has not changed in three decades?”
“Once I dove into the research and met women who had the diagnosis of Stage IV, I found all this pink washing and celebratory month of October to feel like one big fat lie. All the focus is on prevention and survivors, but what about those where the cancer has metastasized. All cancers can metastasize, there is a death rate of 600,000 people a year and 90% die from metastatic diseases. So why don’t you hear about metastatic cancer?”
It’s a fair question and one which Beth and people like Christine Benjamin are trying to provide answers to – as well to offer support and caring. Christine is the Director of Breast Cancer Awareness Programming at SHARE Cancer Support, (https://www.sharecancersupport.org/). SHARE supports, educates, and empowers people affected by breast or ovarian cancer. One of the most effective ways to do this is to connect those going through the trauma of cancer with other survivors. It’s all about relationship and community, either face-to-face or on the phone. All of SHARE’s services are free of charge and confidential.
Christine is a breast cancer survivor, diagnosed early stage in 2000 and after ten years volunteering with a different organization has spent her most recent years working with SHARE. She is only one of the other five members of her family diagnosed with breast or ovarian cancer who has survived, so it is her mission to give support to those dealing with this often deadly disease. And she knows that those in Stage IV, those living with metastatic breast cancer can feel isolated and alone.
“There are a few common threads,” says Christine. “People are scared, terrified… you get this diagnosis and you look on the internet and it says you have 2-1/2 years to live. There is a high level of anxiety and depression and that’s probably the number one challenge, financial issues are number two. Sometimes treatments recommended are not covered, or there is a big lag time in getting treatment. When they get them, the treatments can be debilitating. There are women who feel their doctors don’t listen, they feel unheard and can become invisible in the moment.”
SHARE attempts to give those living with the disease the comfort of speaking with others going through it. There is power, peace and solace in the human connection and shared experience. Christine says she knows the services SHARE provides is something remarkable: “We supported a woman in early stage breast cancer recently, then she became metastatic. Everyone in our office of volunteers and support groups had spoken to this woman at one time or another. I went back and looked at the logs and we had spoken with her over 300 times. I myself was talking to her on Christmas Eve. There was someone always there for her for three years, even there for her family after she passed.”
Christine and friend
Though Beth has not utilized the services SHARE provides she says she met Christine at a metastatic breast cancer conference in North Carolina and Beth herself is a tremendous advocate for those, like her, living in Stage IV, but especially for those women diagnosed under age 40.
Beth is also part of METAvivor, founded in 2007 by four women in Annapolis, Maryland. Beth says once you are diagnosed metastatic you really don’t relate to other cancer patients. “There are cancer groups that ask us not to come,” says Beth, “because they see us as “debbie downers” and don’t want us to scare other patients. But METAvivor is making a difference. The group raised enough money last year to give away $1 million for grants, volunteer organizations and grass-roots initiatives. 100% of the money raised goes to research and support, there is nothing used for overhead, offices or salaries. (http://www.metavivor.org/)
It’s all about fighting for research that could at worst prolong and at best save the lives of those trying to live with metastatic cancer, those living day-to-day in Stage IV reality.
October 13th has been designated as National Metastatic Breast Cancer Awareness Day, part of Breast Cancer Awareness Month. One day to recognize those who live beyond awareness, those who live in the sobering reality of Stage IV Breast Cancer.
The central focus of MBC Awareness Day will be in Washington DC and the Stage IV Stampede. (http://www.metavivor.org/take-action/campaigns/stage-iv-stampede/).
The event will include a one-mile march from the Washington Monument to the U.S. Capitol, a Die-In to represent the 113 individuals that die each day from MBC, and an educational briefing on emerging opportunities and challenges in research. It will also include team-based meetings with the offices of Senators and House Representatives who will be educated about Stage IV and ask them to support the community by funding additional research and improving access to care and treatments. SHARE will have a representative there as well, a woman they call Dr. Joan, a METAvivor since 2007.
Currently all metastatic breast cancer gets only 7% of the funding allocated for cancer research. As Beth, living in the middle of her Stage IV battle bluntly explains, “I’m sorry, but these people are dying, why is there not more funding for research to save lives or make our quality of life better?”
In her own life Beth has her husband and two 17-year-old daughters by her side, living through this ordeal. She says after her 18 rounds of chemotherapy her hair is getting long enough now to put a ponytail in and to go to the gym 4-to-5 days a week and be engaged in advocacy. “My family sees me as strong and active,” says Beth. “But I’m not naive to the fact that this can change quickly and next month I might not be doing so well. They were devastated, sad and scared like I was when I got the diagnosis. We didn’t know if I would live, or die, or what. It’s kind of been a learning process for all of us and we all four try and live in the moment and enjoy each day.”
“I hope the work I’m doing is going to make a difference and drugs will be designed to keep me alive. I always tell people that unfortunately, it took cancer to slow me down and make me pay attention and live in the moment. Don’t let something happen before you appreciate what you have. Don’t let this happen before you slow down and enjoy life.”
For a complete list of support groups, to learn more and ways you can volunteer, contribute or donate visit: (http://www.mbcinfocenter.com/)
Until next time thanks for taking the time,
Mark
Mark Brodinsky: Author, Blogger, Speaker, Speech Writer, Emmy Winner
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