February 19, 1989. It was a cold and very rainy day. I truly believed that the angels up above were crying along with us as our family buried my father. His death certificate stated that he died from Hepatic failure. His liver could not hold out against all of the chemicals pumped in over the course of chemotherapy he received during his five year bout with breast cancer.
A man with breast cancer? Yes, my father was diagnosed with breast cancer. What was really amazing medically was that in the year 1984, the oncologist my father saw had four other men with breast cancer at our small (in those years) local hospital. Every week, my dad had an infusion of chemo as well as taking tamoxifen. Even though the doctor told my parents that dad was only expected to live for 6 months, he fought valiantly for 10 times that prediction.
Today, he would have received dose dense chemotherapy and maybe even radiation. What he went through seems so antiquated compared to today's therapies. Due to his bout with breast cancer, I was tested at Fox Chase Cancer Center and routinely participate in the Margaret Dyson Family Risk Assessment Center (now known as the Risk Assessment Program, http://www.fccc.edu/prevention/riskAssessment/staff.html). My father's frozen tissue sample from his original pathology and my blood samples determined that we both carried the BRCA2 genetic mutation. In 1996 when I found out this information, I received concise and informative genetic counseling as do all participants in the RAP at FCCC. We mapped out a plan of action and so far, as I have followed it, I am cancer-free even having discovered that I was at Stage 0 with DCIS at the time of my prophylactic bilateral mastectomy.
My father's death was a horrible experience but through it and less than 10 years later, I was able to avoid what my breast surgeon had told me was a certain outcome; it was only a matter of time before breast cancer would rear its ugly head within my body.
So as I recite the Kaddish prayer during my dad's Yahrzeit, I miss him very much and probably spend at least a week being miserable and unhappy at the loss of a most wonderful man, father, son, uncle and cousin. However, his legacy genetically has helped those he left behind with a knowledge that allows us to overcome the high risk of disease that has plagued the family through several generations.
If not for Dr. Daly at FCCC and the support and information at FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) I may not even had gotten to age 51 and sitting here writing about genetics and breast cancer! Thank you Dadddy. Though you have missed meeting your grandchildren and other new family members, because of your sacrifice and love, we remember you at this yearly celebration of your life.
Love and special hugs,
Beth
Sunday, February 20, 2011
Friday, January 28, 2011
What Attending the 2011 Joining FORCE's Conference Can Mean
FORCE (Facing Our Risk of Cancer Empowered): About Us
The video about the Joining FORCE's Annual Conference shows so many important reasons to attend. This coming year will be my third time attending.
The first year I went, I really needed the affirmation that I did the correct thing. I had gotten the results of my being BRCA2 positive back in 1996. I had genetic counseling. It is so very important to get that. I was given sort of a road-map to what the future would encompass as far as my BRCA status. My choices were varied: from surveillance to surgery. In 2007, I opted to go the whole 9 yards and have a Prophylactic Bilateral Mastectomy (PBM). Since I had so many problems along the way with the PBM, I needed to feel that I made the right decision. I had lost the left implant in August of that year and in 2008 I got to go to the Conference. During the intervening time period, I posted on the message boards and in the chat room at FORCE and joined the local Outreach Group.
Quite honestly, I felt pretty beat up! I was cancer-free but feeling very let down by my body. But being surrounded by other women who had traveled the same road gave me my affirmation. I met several women with whom I had only communicated over the Internet or by phone. By taking the time to attend the Conference, I felt the impetus to go back to Philadelphia and get the word out about FORCE and the BRCA Community. I learned more about the genetic mutation that put me and my family at the increased risk. I also got to view the then unreleased movie, "In the Family". Several of us sat in the back of the room and just cried. Joanna Rudnick, the producer and star of the documentary was there and I was so proud of how FORCE helped to make this film a success.
I also met another FORCE member who befriended me was Diane Tropea Greene. She is the author of "Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer". She and I "met" on the FORCE message boards and she and one of her sisters attended the Conference and she signed her book. What an inspiration. This is such a good read; you laugh and cry and I found myself nodding my head at so many shared instances in life.
The second year I attended the Conference, it was moved from its original site in Tampa to Orlando, FL. The attendance had grown from about 250 to 500! I felt honored to again be selected to receive a scholarship to attend. I went with one of my close friends who happens to carry the BRCA1 gene mutation and also has had Breast Cancer affect her family. We learned even more at this Conference. The biggest part was growing the Outreach Group in Philadelphia, volunteering opportunities and again, feeling like I belonged to a group that understood my decisions.
At each Conference, there is a "Show and Tell" room, just like we have at most local meetings. Only this years' room was spread into at least 3 rooms. Each woman shows off her mastectomy along with her reconstruction or lack thereof. The year before I had gone there with one implant and one skin flap where the other had been. This time I had a completed set! We shared, showed and commiserated. Other women were given the opportunity to ask questions about different kinds of surgeries, procedures and end products. Not every set was perfect and we wore our scars with pride! It felt kind of strange, walking around with my top off, getting "felt" by other people, and talking honestly and openly about BRCA and my PBM. I almost went downstairs to the main floor of the suite without my t shirt! Good thing I was stopped on the stairs.
Again, I got to meet with others not only from the FORCE website but also from the Facebook pages as well. Sounds trite, but it IS good to put faces to names. I caught up with old friends and met many new ones. I learned some very good points at this Conference, different from the last. Each year there are always new sessions and I tried to attend them. I found out that I like to write and Kathy Steligo, author of "The Breast Reconstruction Guidebook", conducted a very intense session on writing.
One of the highlights of the Conference for me is the Saturday Morning Round Table Discussion. Each speaker has a table, obviously, and makes themselves available for a question and answer session. It is so wonderful to get more in-depth with the most knowledgeable people in their field.
I am hoping to get another scholarship this year and go again. New discussions are waiting! I also am very interested in learning more about fundraising on behalf of FORCE. I do what I can but I know there is so much more. I want to find out about getting FORCE's name and mission out there in the public eye. The BRCA gene mutation is so very misunderstood, by laypeople as well as professionals. If I can change my area of the world, then I feel I have done my part. If I can reach out to just one person and ease their mind about their BRCA status or impending surgery, then I have accomplished more than what I hope.
Love and hugs,
Beth
The video about the Joining FORCE's Annual Conference shows so many important reasons to attend. This coming year will be my third time attending.
The first year I went, I really needed the affirmation that I did the correct thing. I had gotten the results of my being BRCA2 positive back in 1996. I had genetic counseling. It is so very important to get that. I was given sort of a road-map to what the future would encompass as far as my BRCA status. My choices were varied: from surveillance to surgery. In 2007, I opted to go the whole 9 yards and have a Prophylactic Bilateral Mastectomy (PBM). Since I had so many problems along the way with the PBM, I needed to feel that I made the right decision. I had lost the left implant in August of that year and in 2008 I got to go to the Conference. During the intervening time period, I posted on the message boards and in the chat room at FORCE and joined the local Outreach Group.
Quite honestly, I felt pretty beat up! I was cancer-free but feeling very let down by my body. But being surrounded by other women who had traveled the same road gave me my affirmation. I met several women with whom I had only communicated over the Internet or by phone. By taking the time to attend the Conference, I felt the impetus to go back to Philadelphia and get the word out about FORCE and the BRCA Community. I learned more about the genetic mutation that put me and my family at the increased risk. I also got to view the then unreleased movie, "In the Family". Several of us sat in the back of the room and just cried. Joanna Rudnick, the producer and star of the documentary was there and I was so proud of how FORCE helped to make this film a success.
I also met another FORCE member who befriended me was Diane Tropea Greene. She is the author of "Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer". She and I "met" on the FORCE message boards and she and one of her sisters attended the Conference and she signed her book. What an inspiration. This is such a good read; you laugh and cry and I found myself nodding my head at so many shared instances in life.
The second year I attended the Conference, it was moved from its original site in Tampa to Orlando, FL. The attendance had grown from about 250 to 500! I felt honored to again be selected to receive a scholarship to attend. I went with one of my close friends who happens to carry the BRCA1 gene mutation and also has had Breast Cancer affect her family. We learned even more at this Conference. The biggest part was growing the Outreach Group in Philadelphia, volunteering opportunities and again, feeling like I belonged to a group that understood my decisions.
At each Conference, there is a "Show and Tell" room, just like we have at most local meetings. Only this years' room was spread into at least 3 rooms. Each woman shows off her mastectomy along with her reconstruction or lack thereof. The year before I had gone there with one implant and one skin flap where the other had been. This time I had a completed set! We shared, showed and commiserated. Other women were given the opportunity to ask questions about different kinds of surgeries, procedures and end products. Not every set was perfect and we wore our scars with pride! It felt kind of strange, walking around with my top off, getting "felt" by other people, and talking honestly and openly about BRCA and my PBM. I almost went downstairs to the main floor of the suite without my t shirt! Good thing I was stopped on the stairs.
Again, I got to meet with others not only from the FORCE website but also from the Facebook pages as well. Sounds trite, but it IS good to put faces to names. I caught up with old friends and met many new ones. I learned some very good points at this Conference, different from the last. Each year there are always new sessions and I tried to attend them. I found out that I like to write and Kathy Steligo, author of "The Breast Reconstruction Guidebook", conducted a very intense session on writing.
One of the highlights of the Conference for me is the Saturday Morning Round Table Discussion. Each speaker has a table, obviously, and makes themselves available for a question and answer session. It is so wonderful to get more in-depth with the most knowledgeable people in their field.
I am hoping to get another scholarship this year and go again. New discussions are waiting! I also am very interested in learning more about fundraising on behalf of FORCE. I do what I can but I know there is so much more. I want to find out about getting FORCE's name and mission out there in the public eye. The BRCA gene mutation is so very misunderstood, by laypeople as well as professionals. If I can change my area of the world, then I feel I have done my part. If I can reach out to just one person and ease their mind about their BRCA status or impending surgery, then I have accomplished more than what I hope.
Love and hugs,
Beth
Saturday, January 15, 2011
Breast Cancer Awareness Body Painting Project
The Breast Cancer Awareness Body Painting Project (BCAPP) is an ongoing series designed and created to raise awareness and funds for Breast Cancer causes. Meet the founders and learn more about the project on this episode of ArtStreet! Please check out this video by clicking on the link below:
http://bit.ly/hqeMqV
So far 23 Brave Survivors have stepped forward to be painted and photographed and we are on the way to 50 for the final book.
This Channel will contain "Time Lapse" or "Fast Motion" sequences of most of the survivor models in the project. These videos will show the start to finish process of how these women were body painted for this project to share themselves and their stories.
Hats off to Artist/Photographer Michael Colanero, originally from the Philadelphia area and now living and working in Ft. Lauderdale, has helped to develop this project. He is assisting on raising AWARENESS as well as FUNDS for Breast Cancer. Please visit this worthwhile project at http://www.cafepress.com/BCABPP as well as his gallery in Ft. Lauderdale, FL:
UNCOMMON Gallery
2713 East Commercial Blvd.
Fort Lauderdale, FL
Thank you Michael!
Love and hugs,
Beth
http://bit.ly/hqeMqV
So far 23 Brave Survivors have stepped forward to be painted and photographed and we are on the way to 50 for the final book.
This Channel will contain "Time Lapse" or "Fast Motion" sequences of most of the survivor models in the project. These videos will show the start to finish process of how these women were body painted for this project to share themselves and their stories.
Hats off to Artist/Photographer Michael Colanero, originally from the Philadelphia area and now living and working in Ft. Lauderdale, has helped to develop this project. He is assisting on raising AWARENESS as well as FUNDS for Breast Cancer. Please visit this worthwhile project at http://www.cafepress.com/BCABPP as well as his gallery in Ft. Lauderdale, FL:
UNCOMMON Gallery
2713 East Commercial Blvd.
Fort Lauderdale, FL
Thank you Michael!
Love and hugs,
Beth
Monday, January 3, 2011
The Past Year Review
I have now passed the mark on being 50! Pretty uneventful. Nothing happened to change the world just because one more person is now eligible for AARP. I gained no more wisdom than I had the previous 49 years. I have not written the Great American Novel, hosted a cooking show or found a cure for anything.
Here is what I did glean from my past Half Century and this year:
1. I remember to recite the "Serenity Prayer" when vexed. In the time it takes to say it, I am either no longer at odds or calm enough to deal with it.
2. The speed limit sign on the Garden State Parkway is just a very mild suggestion to NJ motorists.
3. There is no way to stop, alleviate or slow down the aging process. We must grow old gracefully if we can and spend your hard-earned money on helping others if you are so fortunate as to have that kind of income. (My apologies to Dr. B!)
4. PAY IT FORWARD! If someone helped you, please remember to try and do the same for someone else. This does not have to be lauded to the public on Facebook, Twitter or anywhere else on the Internet. If you did it, savor the self-knowledge.
5. The phrase my dad loved to use, "Never try to teach a pig to sing. It wastes your time and annoys the pig", echoes in my mind at this year's end. In other words, I learned to pick my battles much better. I still make mistakes with this but find it easier to sleep at night.
6. Saying good-bye to friends as they become Angels in our midst is harder than I thought. Two women who bravely fought Cancer have been laid to rest. I remember how they touched my life and impacted it so well. Goodbye Caryn and Janet. You are missed.
7. There is no way to argue with teenagers; refer back to #5!
8. We are all capable of doing great things. As a positive example, I have a friend from high school who participated in the Iron Man event and she did exceptionally well. Another has made a name for himself in the surgical oncology field and has saved countless lives of our fellow alumni and friends. Going above and beyond is admirable to strive towards.
9. I learned how to blog, tweet, use the Nook and NookColor and develop a website!
10. Read a book not in your usual repertoire. Flex those brain cells. Treat them like your muscles; you lose them if you don't use them!
11. Finally, I realized that nobody will make things happen except for YOU. The best advocate is your own voice. NEVER stop being proactive in regard to your health and enrich your life with knowledge. As we say in Judaism, "Be a woman of valor."
As always, I still like to promote FORCE on my blog and will continue to do so. If just one person's life can be made into a longer one, I have served a great purpose and higher purpose. Please share any of the links on the FORCE website with others.
The FORCE website is a wealth of information. This link shares a brief, very clear overview of how our "genes" work. Read on ....Hereditary Cancer and Cancer Genetics
Love and hugs,
Beth
Here is what I did glean from my past Half Century and this year:
1. I remember to recite the "Serenity Prayer" when vexed. In the time it takes to say it, I am either no longer at odds or calm enough to deal with it.
2. The speed limit sign on the Garden State Parkway is just a very mild suggestion to NJ motorists.
3. There is no way to stop, alleviate or slow down the aging process. We must grow old gracefully if we can and spend your hard-earned money on helping others if you are so fortunate as to have that kind of income. (My apologies to Dr. B!)
4. PAY IT FORWARD! If someone helped you, please remember to try and do the same for someone else. This does not have to be lauded to the public on Facebook, Twitter or anywhere else on the Internet. If you did it, savor the self-knowledge.
5. The phrase my dad loved to use, "Never try to teach a pig to sing. It wastes your time and annoys the pig", echoes in my mind at this year's end. In other words, I learned to pick my battles much better. I still make mistakes with this but find it easier to sleep at night.
6. Saying good-bye to friends as they become Angels in our midst is harder than I thought. Two women who bravely fought Cancer have been laid to rest. I remember how they touched my life and impacted it so well. Goodbye Caryn and Janet. You are missed.
7. There is no way to argue with teenagers; refer back to #5!
8. We are all capable of doing great things. As a positive example, I have a friend from high school who participated in the Iron Man event and she did exceptionally well. Another has made a name for himself in the surgical oncology field and has saved countless lives of our fellow alumni and friends. Going above and beyond is admirable to strive towards.
9. I learned how to blog, tweet, use the Nook and NookColor and develop a website!
10. Read a book not in your usual repertoire. Flex those brain cells. Treat them like your muscles; you lose them if you don't use them!
11. Finally, I realized that nobody will make things happen except for YOU. The best advocate is your own voice. NEVER stop being proactive in regard to your health and enrich your life with knowledge. As we say in Judaism, "Be a woman of valor."
As always, I still like to promote FORCE on my blog and will continue to do so. If just one person's life can be made into a longer one, I have served a great purpose and higher purpose. Please share any of the links on the FORCE website with others.
The FORCE website is a wealth of information. This link shares a brief, very clear overview of how our "genes" work. Read on ....Hereditary Cancer and Cancer Genetics
Love and hugs,
Beth
Thursday, December 30, 2010
What Breast Cancer Survival Looks Like: Caryn Rosenberg 2 Years Later - MORE Magazine
What Breast Cancer Survival Looks Like: Caryn Rosenberg 2 Years Later - MORE Magazine
I am posting this article in tribute of my dear friend and our newest angel, Caryn Rosenberg. She fought with dignity, humor, love and grace. You will be missed by all of us. You commanded us at your party to celebrate life and that I am attempting to do. You may not have been a mom but looked out for one and all like we were all family.
I am also posting this article in honor of Steven Rosenberg who exemplified the role of partner and care-giver. You were loved to the extreme by Caryn and glad to be able to call you friend.
RIP Caryn, 1960-2010.
Love and hugs,
Beth
I am posting this article in tribute of my dear friend and our newest angel, Caryn Rosenberg. She fought with dignity, humor, love and grace. You will be missed by all of us. You commanded us at your party to celebrate life and that I am attempting to do. You may not have been a mom but looked out for one and all like we were all family.
I am also posting this article in honor of Steven Rosenberg who exemplified the role of partner and care-giver. You were loved to the extreme by Caryn and glad to be able to call you friend.
RIP Caryn, 1960-2010.
Love and hugs,
Beth
Tuesday, November 2, 2010
Creative Knitting | Easy Knitting for Everyone
Creative Knitting | Easy Knitting for Everyone
As the Holidays approach, I am constantly looking for something new to make. I will probably get the supplies for this one and work on it during the year. Then the biggest question looms in the background as I knit: To whom do I give this away to? It is very hard to part with a creation like this let alone make the decision. Will the receiver appreciate it? Will they take care of it the way I would? The answers are not as important as the love transferred to the giftee from the gifter! I have been brought to tears hearing stories from relatives about the baby blankets I have made and sent off to the tiny recipients. I am so glad that the love I knitted or crocheted into every stitch was received so well.
Well, I have plenty of projects to tend to and blogging will never help get them done! Looking forward to making presents and one day even making something for me!
Love and hugs,
Beth
As the Holidays approach, I am constantly looking for something new to make. I will probably get the supplies for this one and work on it during the year. Then the biggest question looms in the background as I knit: To whom do I give this away to? It is very hard to part with a creation like this let alone make the decision. Will the receiver appreciate it? Will they take care of it the way I would? The answers are not as important as the love transferred to the giftee from the gifter! I have been brought to tears hearing stories from relatives about the baby blankets I have made and sent off to the tiny recipients. I am so glad that the love I knitted or crocheted into every stitch was received so well.
Well, I have plenty of projects to tend to and blogging will never help get them done! Looking forward to making presents and one day even making something for me!
Love and hugs,
Beth
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)
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 (www.facingourrisk.org) 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,
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,
Beth
*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 (www.facingourrisk.org) 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,
Beth
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