Wednesday, September 29, 2010

When "Thank you" is Just Not Enough

Today marks the very first Annual National Previvor* Day, in the middle of National HBOC (Heriditary Breast and Ovarian Cancer)Week. Due to the efforts of Sue Friedman, Executive Director of FORCE and Representative Wasserman Schultz, H. Res 1522 was passed UNANIMOUSLY in Congress. Cancer does not recognize party lines, race, creed, nationality or sexual preference. I am proud of our politicians that they threw aside biases and voted to approve this very special milestone.

*Previvor (according to Wikipedia)
A cancer previvor is a person who is not diagnosed with cancer, but has a survived the predisposition, or higher risk, of cancer due to a certain genetic mutation.[1] As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis.

Like many others in my sphere of influence, I witnessed first-hand the toll cancer takes on a loved one. My father passed away from Breast Cancer in 1989 after a 5 year battle. In 1996, I found out I carried the BRCA2 Genetic Mutation. This meant I had a predisposition to both Breast and Ovarian Cancers in addition to my strong family history. In 2002, I had my first of many surgeries to remove my ovaries, ending one stage of my womanhood. Being 42 I was not in favor of more children but I still felt that tug of never being able to have more and having that choice stripped away from me in deference to avoiding Ovarian Cancer and reducing my Breast Cancer risk by half.

By 2006, I had had several scares and a multitude of mammograms, biopsies, MRi's, ultrasounds and my stress level was at an all-time high. Having never had cancer, I felt out of place in the survivor support groups both in person and on the Internet. My fiancé convinced me to seek another opinion and I went to an oncologist for help. I was put on Tamoxofin as a prophylactic measure. This was met with mostly contempt from survivors along with comments such as, "You don't know what it is like to be a survivor", "How can you even begin to compare your life with ours". I was in tears because I had nowhere to turn for help.

I began investigating the Internet with a ferocity. I discovered FORCE, Facing Our Risk of Cancer Empowered ( and found a home! I was in tears again but these were happy tears! They got me! I was not the only one out there. I heard discussions about genetic testing, prophylactic surgeries, reconstruction (or not), talking to family members and an overall feeling of belonging. In 2007, with love, support and information from my family, friends and my FORCE Family, I had the next of a series of surgeries to have my breasts removed and reconstructed. I encountered many speed bumps along the way. When someone would tell me I was "mutilating" my body, I had FORCE to turn to. In 2008, I attended my very first JoiningFORCEs Conference in Tampa, FL. This was followed by the next one held in Orlando, FL. Each trip, I learned more and more and brought back more to share with my fellow BRCA community in Philadelphia.

In the words of Dr. Friedman in her recent blog entry,
An estimated 750,000 people—about .2% of the entire U.S. population—carry a BRCA mutation. Not a large group compared to our overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, and our cancer risk is some of the highest known to science.
. I am part of that percentage.

The importance of the HBOC Week and Previvor Day cannot be felt as poignant as it is with those of us in the BRCA community. This will help pave the way for more research and hopefully, a way to reduce and maybe even eradicate Breast and Ovarian Cancers in, perhaps, my child's lifetime. FORCE has brought an empowerment and sense of belonging to me more than any other group could possibly have done. Out of this has sprung a wonderful new book, released during HBOC Week, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port, a FORCE member.

We have also been fortunate to have a view from another FORCE member and friend, Diane Tropea Greene, Apron Strings: Inhereting Courage, Wisdom and . . . Breast Cancer. This chronicles a family of sisters and their journey through their family's ordeal with cancers.
Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer

My friend and film-maker/researcher, Joanna Rudnick, was prompted to make a documentary following her family and her own search for answers to make an informed decision after learning she carried the genetic mutation. Her film, In the Family, is incisive and educational in a grounded way. I have since become good friends with one of the FORCE women in the film and glad we met 3 years ago!

I am having trouble typing through the tears forming. Had I never found out about my mutation I carry, my surgeon was almost certain I would have had a bout with Breast Cancer at some point. It was a matter of when, not if. As a matter of fact, they did discover a stage zero DCIS in my pathology. A Bilateral Prophylactic Mastectomy would have been the treatment for me and that is exactly what I had done. I am here, defying my risk of 85-90%, seeing my child grow up to become a man and graduate next year from high school. This year, we celebrated our 5th wedding anniversary, and I never would have gotten here if not for him. I am happy to be able to celebrate this momentous occasion of HBOC Week with my fellow FORCE Members and look forward to many, many more!

Love and hugs,

Thursday, September 9, 2010

To Mature or Not to Mature, That is the Question!

I am amazed at the changes in people over the course of many years. The change in family members is the hardest to see sometimes. My brother has turned out just like our father in so many ways. Makes me sad that Daddy is not here to see him interact with the kids. Others, like my friends and acquaintances from my teenage years are the ones I have trouble understanding.

I had two very good friends in high school. Due to relationships, they have not spoken in several years. I am still friends with both of them, even if one I just rekindled our friendship again. I will not stop associating with one over the other, just not have them present at occasions together. I would hope, however, that they are MATURE enough at this point, that they can set aside differences. We were friends over 30 years ago and still are, like the intervening years never happened.

What I do not understand so much are the people who have not MATURED at all. They are still forming cliques and excluding people from them. In talking to one of our former classmates, we marveled at the associations that have formed post-graduation in the past couple years since the advent of Facebook. There are a few women who would never have been in each other's circles back then who are now thick as thieves now. Who knew? And some of the superficial antics that go on are what I would term, IMMATURE. Then again, maybe I am still not MATURE enough to not have sour grapes over being excluded.

Fast forward to college years. I suppose since we were tossed together without any prior knowledge of each other's circumstances, we had no preconceived notions about one another. We were already starting to MATURE. I am certainly glad to have gotten in touch with so many familiar faces so that we can catch up with each other.

Now I have branched out into other areas of friendships with people who have gone through college, some grad school, one or two marriages, births and deaths, careers and lifestyles changes. I accept these people at face value. Some I have begun iron-clad relationships with and others I keep at arms' length so I do not get hurt. Is this being MATURE or just cautious? I have found what I want out of a friendship and what I am willing to give back. If there is not a good balance, then I question if it is a healthy one to start. Very similar to what I went through with romantic relationships after my divorce. I am saddened by one friend in particular who seems to have pulled away. I feel as though it is based on finances or in my case, lack thereof. The jury is still out on this one!

Additionally, I have made some strong friendships with several women who are active in the fight against Cancer. I stand shoulder-to-shoulder with them in whatever it takes to raise awareness and and funds. Being MATURE means having to deal with life and death in a totally different way than we did when we were younger. The "buffer" generation of our grandparents is gone and our parents' generation is starting to disappear. When we were teens and young 20-somethings we were invincible in our minds. Nothing could touch us! Now, we see the ravages of disease affect our peers and their loved ones.

It has touched us personally as well. I am very active in FORCE, Facing Our Risk of Cancer Empowered. If you know me at all, you already know this. Over the summer, I went to the very first funeral of one of our local members. It really made me MATURE some more. One of the biggest things it made me realize was that, although trite, our time on the earth is limited. So, in agreement with my friend from school, cast off those people who seem to be so shallow and continue with those who you can laugh, cry, share good and bad with, whenever you need to.

Thanks for listening!
Love and hugs,