I remember after my mom was diagnosed with breast cancer. Our family became involved in raising money for Susan Komen and American Cancer Society. We went on walks and meetings and held events. It was important to support my Mom in what she needed to do at that time.
I find myself taking a similar path. And it occurred to me that what I really want is to know that I am not alone. It'd not that I wish this on anyone, but for me life is about knowing that I'm not alone and making some connections. I need to know that someone walked the same path I did, before I did. That someone can tell me the way to go or give me hints on how to get to where I want to be. This is what I did when I had my abnormal biopsy and when I wanted to lose weight; I reached out.
With my surgery looming on Friday 9/20/13, I find myself desperate to connect with others who have walked my path. I've connected with FORCE and registered for what I could there. Yesterday I Googled "Previvor" and started clicking links. There are women out there who are Previvors, but I have yet to find a woman who isn't BRCA positive and still chose to have the mastectomy. I sometimes wonder if I am an anomaly? A one of a kind?
These are the blogs/sites that I found:
Previvor Generation: A woman who's had mastectomy and is in the process of reconstruction. She's honest. And I love that.
High Risk Humor: This woman was partially though her process and considering therapy. She last posted in March so I'm not sure what happened.
Previvor: This 23 year old woman documented her journey in video. I'm amazed at the willingness women have to share and this is no exception. I can't wait to watch her videos, probably after my surgery.
Three Sister Survival: These 3 sisters were all diagnosed with breast cancer within the same year! Talk about family history and risk of genetic cancer.
Brave Bosom: This woman talks about all of the various aspects of BRCA, testing, media, insurance... She is a wonderful writer and makes me think of things that I had not previously thought of.
Bright Pink: I've not heard of this before, why? They are an advocacy group for women who focus on the risk reduction and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals. Me! I sent an email about an event they are having in Minneapolis on 9/25/13. I'm hoping that I feel well enough to attend. Incredibly, I received a response almost immediately that the national contact was forwarding my email to the local contact. I received a response that said if I'm not up to the event next week. to let her know when I am feeling better and she will meet me for coffee.
Still? I am searching for that one woman. That woman who isn't BRCA positive, didn't have cancer, but because of other risk factors chose to have the mastectomy. Surely I'm not the only one?