The world wide web (www) is an amazing place. It connects us to information, entertainment and individuals. I started this blog to stay in touch with my family and friends as I struggle through my cancer diagnosis and journey. Over the past few days, I've discovered how my writing and the thin filaments of the web can connect me to new friends.
These new friends understand the cancer journey or the burden of being BRCA positive. They, through their writing or comments on my blog, provide information about the cancer journey, help me understand what to expect or offer new ideas to consider.
A few weeks ago, a women from Edmonton started writing encouraging comments on my blog. She understood my sleepless nights and the fog the chemo can bring. I was amazed a stranger would be interested in my story. In return, I went on her blog to discover she's struggling with breast cancer. Her situation is quite different, but I could sympathize with many of her tribulations.
Her blog listed dozens of other cancer blogs. I randomly selected one to find a woman from the London area who is about one year ahead of me in the ovarian cancer battle. I immediately read her entire blog, grasping at information about what my future may hold. She mentioned some of the same doctors, oncology nurses and chemotherapy nurses who are currently part of my life. I could relate to many of her feelings and experiences.
It took me some time to reach out to this woman and post on her blog. I don't know if I was reluctant to make contact because I may learn information I'm scared to face. Perhaps I was secure in my own little cocoon, fighting my battle. But I'm realizing these other woman can be a source of strength and comfort.
So I posted a comment on her blog, telling her she's an inspiration to me and that I too hope to be in remission one day. As a result of this post, I got two new women reaching out through comments on my blog.
One, from the United Kingdom, finished treatment two years ago for ovarian and cervical cancer (at the same time!). She too fought this terrible disease and won - proof positive it can happen. She's living her life with enthusiasm and hope. That's a wonderful source of inspiration for me.
Then, I was contacted by a woman who has also tested positive for the BRCA gene. Her blog discusses her diagnosis and reaction to it. Although she doesn't have cancer (she's a previvor), because of the awful statistics that BRCA carriers will get breast cancer, she's decided to get a preventative double mastectomy and reconstructive surgery.
I've been mulling her words around in my head all weekend (yes, I read her entire blog too). Are my breasts ticking time bombs? I already have one cancer associated with the BRCA gene, do I want to face breast cancer too? What are the chances? I guess I'll get more information and the answers to these questions when I meet with the breast specialist, Dr. B., on Oct. 7.
But all this new information and experiences makes me pause to consider my situation. I also am blessed with the very relevant experiences of my cousin, who is also BRCA-1 positive. She been through the breast cancer fight and won (for over 20 years). She's had the double mastectomy and bilateral salpingo oopherectomy to remove her uterus, ovaries and tubes. She faced the monster and beat it.
It's overwhelming processing all this information and the life-changing decisions. I was tearfully angry last night I have to face this. Why on earth did my family get this awful gene? Why am I fighting cancer at age 42 (and why does anyone have to face this God-awful disease)? Why do I have to consider cutting off healthy (as of right now) breast tissue to potentially save my life? Am I not scarred and beaten enough?
The emotional roller coaster of this journey is full of ups and downs. I should be enjoying this week before chemotherapy on Friday - my LAST chemotherapy - but instead I'm full of conflicting emotions. Perhaps I'm afraid because it's my last chemo treatment and afterwards I'll be in the free fall state of "let's see if this worked." I know it sounds insane since I hate chemo and all the awful side-effects it brings, but perhaps I'm afraid to go without it because I'm scared the cancer will return.
But I have to remember I'm alive - and I will continue to fight - even if I am scared and angry right now.
Tina
Dear Tina,
ReplyDeleteThe BRCA gene is a terrible curse, but knowing you are a carrier can help you make informed decisions about your health. I hope my story didn't cause you to much distress; you are going through so much already. My advice to you regarding your breasts is this: don't worry about them right now. Concentrate on beating OVCA. And then, when you are ready, start doing some research, join a BRCA support group (such as FORCE), and do what you feel is right for you. Just because I've decided to take drastic measures doesn't mean that is the right course for you. The thing to remember -- and this, I sense, is the essence of your post -- is that you are NOT ALONE. When I began this journey, I thought I was the only person on the whole history of the earth to have to deal with such a horrible genetic fate. But now I know so many other women like me, and I've found strength in their courage, experience, and spirit. I hope I can count you among my new "friends" whose journeys will help guide my own.
Yours,
Steph H
goodbyetoboobs.blogspot.com