advocacy, anxiety, awareness, baby steps, breast cancer, CA125, CA125 bloodtest, chronic illness, connector, death, depression, divorce, doctors, goat yoga, hope, influencer, introvert, leader, Now, ovarian cancer, pink ribbon, PTSD, purpose, single mother, survivors, teal, Teal is the new Pink, Yoga
#teamtealsix #cancersucks #ovariancancer #sandyrollman #randomactsofteal #tealisthenewpink
What do you do when the shit is all cleaned up? The divorce is final, your body and soul have healed, you’re settled into your new home, your new tribe is established? When it’s all over, something new sets in. I would describe it as boredom, but it is heavier than that.
I am approaching my 5 year anniversary of a stage 3 ovarian cancer diagnosis. I am not supposed to be here. I was told “Get your affairs in order”. I definitely shouldn’t be here with no recurrences. The recurrence rate of my cancer is 87%, and here I sit, 5 years later, not a sign of cancer in sight. I should be ecstatic, right? Instead, I often wonder Why Me?
I can’t count the women I’ve known over the past years who have come into my life, then died. I can’t count the people I know who’ve struggled with abuse, and not found the light at the end of the tunnel. I have no idea how many people are out there today, unable to function due to crippling depression, chronic illness or debilitating symptoms of PTSD. I’ve had all of this, yet I’ve come out the other side. Yes, I still occasionally struggle to get out bed, I still suffer episodes of panic, I still worry about how my life will turn out, as a single, middle aged mother on her own, but here I am.
The past month has been particularly difficult, because I’ve felt a tremendous lack of direction. Who am I? Am I an advocate for yoga, for medical access to all, cancer awareness, am I the money raiser, the event planner, or am I just a mom? In other words, I’ve had a crisis of Purpose.
A few months ago I went to the funeral of one of my ovarian cancer friends. She was the epitome of hope. It took over 2 years for her to get her diagnosis and, once confirmed, she spent the rest of her life in treatment. Not once did she let cancer stop her. She rowed with a Dragon Boat team. She traveled with her family. She visited Zoo’s and animal sanctuaries. She went out to lunch and partied with her friends. She was what I considered a Survivor.
Then she died.
Her death clarified for me that I need to advocate. Ovarian cancer is diagnosed in late stages because there is no definitive test, and the symptoms “whisper”; i.e., they mimic other conditions. Her passing left me with that itch to do something.
My first thought was goat yoga. I found a farm, I got a teacher, I picked a date, I made sure the farm was covered by adequate insurance and then, just as I was about to pull the trigger and announce the event, I stopped.
I’m actually really good at hosting events, drumming up support, getting people involved. But it takes a huge toll on me physically. In fact, the last events I worked on led to debilitating falls.
At the last second that I realized that just because I’m good at something, doesn’t mean I have to do it. I feel certain that if I proceeded with the goat yoga, it would have ended up with me so anxious and exhausted, I would have payed a debilitating price.
The truth is I am an introvert. Most who know me would argue with this, and I don’t blame them. I am seen as a leader, an influencer, a connector, and I excel at these functions. I am also done in by these activities. It takes every ounce of focus and calm for me to excel at these activities. If I don’t get enough rest after one, I fall down the stairs. Or I get pneumonia. Or I fall over in yoga and twist my already damaged intestines.
About a year ago my son and I started putting Teal Ribbons up around our community. Teal is the color of ovarian cancer, and we hoped to grow awareness with this effort. Our mission was to make Teal The New Pink. And we succeeded…….in our town. Very few people come into my yoga studio without mentioning our ribbons. There are conversations throughout our town about our ribbons, most businesses don’t take them down, and awareness of the disease is a topic of conversation among us and the people who know us.
At the same time, many ridiculed me. Family members said “I don’t get it. No one knows what the teal ribbons are for, so what’s the point?”. Women in my cancer groups said “you shouldn’t be telling people this, it’s bad information”. (Ovarian cancer is really complicated, and those of us dealing with the disease know that the way we are diagnosed, a woefully inadequate process, is not quite accurate).
There were several women on FB who asked if they could help, so I mailed them ribbons to put up in their towns. They never did. Even my sister, one of my staunches advocates, never put up the ribbons I sent her.
I felt foolish. So I stopped. Which is what led to my crisis of Purpose.
Today, I am starting anew. And, I’m starting with the same plan, because it’s a really good plan.
Forty years ago very few were aware of breast cancer. Today, the sight of a pink ribbon is synonymous with breast cancer. In fact, the color pink itself, often evokes awareness of breast cancer. As a result, millions of dollars have poured in for research and advocacy work. Breast tumors are now classified, by which hormones feed them or starve them. Serious strides have been made in breast cancer detection and treatment.
Ovarian cancer needs the same visual, and I’m determined to make it happen. How else can I show how grateful I am that I’m alive?
Here is what I say to the naysayers:
- Yes, people don’t know what a teal ribbon stands for. Teach them.
- Yes, the symptoms vary with each women. Let’s talk about All of them!
- Yes, the CA125 blood test is unreliable, but it is a starting point, and insurance pays for it.
- Yes, few doctors will consider ovarian cancer, let’s force them to.
- Yes, there is nothing simple about ovarian cancer. No cute little anagrams sum it up, and no cautionary tale covers the full scope of the disease. SO WHAT??? All the more reason to get to work on awareness – NOW.
Breast cancer is a multifaceted disease, just as ovarian cancer is. Not all women have the same symptoms. Not all women are diagnosed the same way, and treatment is not a one size fits all. Did these women give up? Did they say “no one knows what a pink ribbon is” and walk away? NO!
When we go to DC to do advocacy work, we are taught to focus on our “ask”. What is it we want from our Congressmen and Senators? If we don’t give them something specific to do, they won’t act.
So here is my ask to all of you:
Turn Your Town Teal.
Do this in whatever way works for you. Do this whatever way speaks to you. Do it once, then do it again. Take pictures of what you’ve done and put them online, FaceBook, Instagram, Twitter.
Then, when people ask you if you are the “teal person”, say Yes, let’s talk about ovarian cancer. Then, ask them to join you.
Baby steps. One random act of teal at a time. No effort is too small, and no act is worthless.
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