“This is not something I usually lead with, but I have metastatic breast cancer. Many people I know, especially general acquaintances on social media, do not know this about me. In fact, I’m pretty sure that some of you who read this blog know me but do not know about my diagnosis…”
Today’s guest post is written by an anonymous contributor.
Bio: The author is so grateful for the support of family and friends. She encourages anyone who has a cancer diagnosis to explore other modalities of healing (e.g. Traditional Chinese Medicine, Ayurveda) in addition to conventional treatment. She especially encourages cancer survivors to try oncology massage, meditation, mindfulness, yoga, and qigong.
The following is a Maggie’s Brightside guest post. Members of the Maggie’s Brightside community hold a variety of view points and experiences. The views expressed below are solely those of the author and do not necessarily reflect those of Maggie’s Brightside.
Tough Choices – The Decision to Share
This is not something I usually lead with, but I have metastatic breast cancer. Many people I know, especially general acquaintances on social media, do not know this about me. In fact, I’m pretty sure that some of you who read this blog know me but do not know about my diagnosis.
Why would I not share this information with the world? Am I not as strong as people like Maggie and Jane (new executive director) or am I a different kind of strong? My primary goal of this post is to make people more aware of what goes into the decision to share information about a significant diagnosis. If you learn anything else about living in the breast cancer world, I will consider that a bonus.
My story begins with a misdiagnosis by a primary care physician. Being in my mid-thirties, I was “too young” to have breast cancer, and I was told an indentation in my breast was due to milk ducts that had clustered or something to that effect. I breathed a sigh of relief and went on my way. I had no family history or experience with breast cancer. When I became pregnant a year and a half later, a midwife (for whom I will be forever grateful) told me that I should get it checked out by a specialist. At 14 weeks pregnant, I found out that I had breast cancer (months later I would find out that it was officially Stage 3). I went through chemotherapy while pregnant, multiple surgeries, and radiation. I could write a novel about what I went through during “active” breast cancer treatment and pregnancy, so I will keep it short here. I made it through, and my daughter was born healthy, and she continues to do well now. I am so thankful.
In terms of sharing information about my diagnosis during that time, I tried to keep it under wraps with the general public. I had winter on my side, and I stayed inside a lot. I wore a wig or a hat while out in public (I lost my hair during chemotherapy).
I disclosed my diagnosis to family and close friends, but my goal was to complete active treatment and then jump back into the greater world like I had never left it. I avoided saying the C word (cancer). I felt that if I used it, it would make its way into my life again.
I surrounded myself with books and items focused on healing and recovering.
If strangers mentioned that they or someone they knew had cancer, I would listen, but I’d always be pondering, is this the moment that I decide to open up? Had I put the diagnosis far enough in the distance that I would not feel like it was ready to chase me down again? After multiple check-ups with “no evidence of recurrent disease” and feeling great, I thought I was in the clear. I thought my diagnosis would just fade into the background and that I would no longer have to grapple with the decision to share on a regular basis.
And then more recently (you know where this is going because of how I led this post), an abnormal lab value led to the discovery of a single metastatic lesion. I felt fine and still do. And yes, that is both the scary and comforting thing about having cancer. You can have it and feel okay. In fact, because it can take so long to grow into a detectable tumor, it is possible that I have had cancer for a third to half of my life. Cancer used to scare me. It still does a little, but now, I think that it is more about how you feel than the cancer itself.
And so now my new diagnosis brings back the issue of what information to share.
Treatment for metastatic breast cancer is ongoing. You might not look sick. You might not switch treatment for years or it might be a matter of months. Everyone is different; every cancer is different.
Depending on how your cancer is responding to treatment, there can be a lot more than chemotherapy in the metastatic breast cancer world these days (e.g. hormone therapy, targeted therapy, immune therapy, radiation therapy). At the moment, luckily, my cancer appears to be responding to hormone therapy. It’s also possible that I will do targeted and radiation therapies. Within each type of therapy, there are often multiple different options. How do I educate someone in a matter of minutes with the information that has taken me years to absorb and still confuses my family?
Even Maggie had different levels of sharing. My moment in time with Maggie was in a support group where she and I were the only participants. I was in awe at how brave and outspoken she was. And still, the things that were said were too raw and unfiltered for either of us to share outside the group. There is still a spectrum of sharing for even the bravest of the brave.
Every time I see another survivor share his/her story, I feel the urge to go on a posting bonanza and share everything on social media. And then I catch myself. I try to imagine what that would look like. Like a puff of smoke, once it is out there, you can’t take it back. It will fill the room and be breathed in by everyone. I’ve tested sharing out on strangers, and I am not always happy with the response. With cancer, people are usually expecting you to beat it or to succumb to it. If you currently aren’t in either category, people get really confused. I have had glimpses where gifts/money have been given to me via friends of family members, and I am not sure what to do because they are coming from people who I think need more assistance than I do. It makes me feel guilty that somehow I am being misrepresented. Therefore, I often stay quiet myself because I am not sure I have the accurate words to define my situation.
The decision to share a significant diagnosis is easy for some and incredibly difficult for others. My personal opinion is that it becomes even more difficult in the land of “Living with Cancer.” You might have months, years, or decades. While health is incredibly important, I’m not sure I want “how is your health?” to be the very first question that everyone asks me for years or decades to come. I want to be me for as long as I can. Maybe that me is not what it once was, but I am not ready for me to be equated to my diagnosis.
I have decided to continue to keep my new diagnosis to myself, family, and close friends. Am I fearful or bold? Am I stuck or am I balanced? I have read that you need to be completely open with yourself in order to heal. I’ve also read that if you are too caught up in “woundology” that you can’t heal either (“woundology” is a term coined by Carolyn Myss, “characterized by a person’s reliance on the power of illness for manipulation of his or her world, as opposed to attaining an independent, empowered state of health”).
So at the moment, I float between the two extremes. In Traditional Chinese Medicine, there is the concept of yin and yang, each an opposite of the other. The goal is to be a blend of yin and yang so that you are balanced with nature and the universe. I would like to think that I am “balanced”, but I think I still have a long way to go.
A final note, do not be upset if someone doesn’t share a diagnosis with you. It might be more about them not knowing how to navigate sharing than how they feel about you.