13 Facts that Men with Hereditary Cancer Risk Should Know

My father developed breast cancer in 1984 and passed away in 1989. It was discovered in 1996 after genetic testing, including his frozen tissue samples, that the BRCA2 genetic mutation existed in our family. It was passed down through our paternal side. Please read the following to protect yourselves!

13 Facts that Men with Hereditary Cancer Risk Should Know

We would like to call attention to an often forgotten group: men who have a BRCA mutation or a family history of hereditary cancer. Although men don’t get ovarian cancer and their risk for breast cancer is very low, we are learning more and more about how hereditary cancer risk affects them.

FORCE responded to the United States Preventive Services Task Force’s (USPSTF) preliminary guidelines that recommended against prostate cancer screening for all men. Based on emerging research, we encouraged the panel to revise the text to state that the guidelines did not apply to men with BRCA mutations. The USPSTF incorporated our suggestion into its final guidelines. Accomplishments like these remind us how important FORCE’s advocacy work is. Men with BRCA mutations are important cancer stakeholders. Our goal is to assure that they have a voice advocating for their concerns when government cancer policies are developed.

In keeping with our 13 Things theme and in honor of high-risk men, here are 13 facts men need to know about hereditary breast and ovarian cancer.

1. Men with BRCA mutations have increased risk for breast and prostate cancer, and like women with mutations, their risk for pancreatic cancer and melanoma is also elevated. Men with BRCA2 mutations have greater risk than men with BRCA1 mutations.
2. Although men with BRCA mutations have a greater cancer risk than men in the general population, their risk for cancer is lower than most women with a mutation.
3. Because preliminary research suggests that hereditary prostate cancer tends to be a more aggressive form of the disease, the USPSTF advises that screening guidelines developed for men in the general population should not be applied to men with mutations.
4. BRCA mutations have been found in people of every ethnicity, but not with the same frequency. About 1 in every 300 to 500 people carry a BRCA mutation. About 1 in 40 people of Ashkenazi Jewish descent have a mutation.
5. Breast screening recommendations for men with a mutation include regular breast self exams and twice yearly clinical exams by a medical professional beginning at age 35. A baseline mammogram is recommended at age 40 and annual mammograms thereafter are advised, depending on the baseline results.
6. Men with mutations or hereditary cancer in the family should discuss with their doctor the benefits, limitations, and risks of prostate screening using PSA and digital-rectal exam beginning at age 40.
7. The international IMPACT study is looking at the benefit of PSA screening in men with and without BRCA mutations. Full results from this research will be available in 2020.
8. BRCA mutations can be passed down equally from either parent to sons or daughters.
9. When both parents have a BRCA2 mutation, their children may inherit a rare and deadly disease known as Fanconi Anemia. This is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
10. Couples who are concerned about passing a mutation to their children may want to speak with a fertility expert about in vitro fertilization and preimplantation genetic diagnosis that screens embryos for BRCA mutations.
11. Early research on PARP inhibitors for treatment of prostate cancer has been promising. Currently, some open PARP inhibitor studies are enrolling men with advanced prostate cancer.
12. Coverage for BRCA testing in men can vary depending on their insurance plan. A genetic counselor can help men determine if their insurance will cover testing.
13. Men who are concerned that the cancer in their family may be hereditary should consult with a genetics expert before pursuing genetic testing. FORCE can provide information on locating genetics specialists. Genetics consultations are typically covered by insurance.

If you are a man with a BRCA mutation or hereditary cancer in your family, please complete our survey for high-risk men, read about our advocacy efforts on behalf of the men in our community, visit our expert-reviewed information section for men, and join our mailing list to stay updated on new information, research, and programs specific to men with BRCA mutations. Please consider participating in this telephone focus group research study for high risk men.

FORCE helped unite and organize the female hereditary cancer previvor and survivor populations to advocate for more resources; we need to do the same for the men in our community. If you have high-risk men in your life, please let them know about these resources. Please help us raise awareness, spread the word, and save lives by sharing this blog, and printing and sharing our “13 Things Men Need to Know” flier.

Tell Congress No Cutbacks on Cancer Funding!

Tell Congress to Stop Cuts to Breast and Ovarian Cancer Programs! 

This week, lawmakers on Capitol Hill and the White House are negotiating a possible deal on federal spending cuts and tax increases scheduled to go into effect on January 2, 2013. If they fail to reach an agreement, across-the-board spending cuts will devastate federal funding for cancer research and early detection. These automatic cuts, called sequestration, will lead to decreases for discretionary programs—including almost $16.6 billion in healthcare related costs such as Medicare, research funding, education and public health programs. We must act to prevent funding cuts for these essential programs. Help us tell Congress that across-the-board cuts will decimate cancer programs and have minimal impact on the federal deficit.

Join FORCE, Ovarian Cancer National Alliance, Komen for the Cure and others in taking action. Share your story and tell your elected officials that cuts to breast and ovarian cancer funding will have an adverse impact on the nation’s ability to make progress in conquering these deadly diseases...

https://secure.info-komen.org/site/Advocacy?pagename=homepage&page=UserAction&id=1123

http://capwiz.com/ovarian/issues/alert/?alertid=62174271&PROCESS=Take+Action

Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE

Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE:

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Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road

Posted on December 12, 2012

This blog is a call to action! Please read on, and then post, blog, tweet, retweet, and share about this issue so that we can assure that hereditary cancer research continues!

The call for more research is a constant theme for all diseases including cancer, and sometimes it’s easy to get frustrated by the slow pace of progress. The multistep process from discovery to FDA approval is often long and doesn’t always end in success. But research is necessary to assure that new treatments work as well or better than current standard-of-care. For this to happen, studies must recruit enough people to prove that the agents work. This is particularly critical for research that focuses on a small specific population like people with a BRCA mutation.

PARP inhibitor research is a prime example. I first heard about PARP inhibitors at the 2005 ASCO annual meeting. In her plenary address on advances in hereditary cancer, Dr. Barbara Weber from the University of Pennsylvania mentioned targeted agents (PARP inhibitors) that were designed to exploit weaknesses of cancer cells in people with BRCA mutations. This was exciting news! I was hopeful that this could be the beginning of personalized therapy for people in our community. From that moment on, I vowed to do whatever it took to learn about, share with our community, and promote the studies to determine whether these drugs worked.

Early small clinical trials of PARP inhibitors were promising, but delays and road-blocks affected development of larger research studies. Some of the roadblocks had to do with study design; others involved dosing or side effects as researchers determined the most effective combinations of PARP inhibitors with other anticancer agents. Despite these issues, enthusiasm continues for the potential of these drugs in people with BRCA mutations. Yet, eight years later, there are still no FDA-approved PARP inhibitors and people are still dying of hereditary cancers!

FORCE has continued to advocate for further research on PARP inhibitors, petitioning scientists, the FDA, and pharmaceutical companies to address the road-blocks and challenges and to facilitate the research and find answers for hereditary cancer. After eight long years, our pleas and efforts have been rewarded. Several PARP inhibitor studies are now recruiting, including a large, Phase II study on PARP inhibitors for women with BRCA-associated advanced breast cancer. Our participation in this research is critical. Unless enough people participate, these studies will not continue. If enrollment falls short, the next time scientists have an idea for treating or preventing hereditary cancer, they may decide that the BRCA community is too difficult to research, and fewer studies will be designed for us. That would be tragic considering how many members of our community develop and succumb to cancer.

This is where the rubber meets the road!

We have worked long and tirelessly to advocate for this research. Now that we have it, we cannot afford to turn a deaf ear. At this moment, the fate of hereditary cancer treatment research rests with each of us. Although most of the current studies are open only to women with advanced cancer, even if that doesn’t describe you, perhaps you know someone who fits that description. If PARP inhibitors work for advanced hereditary cancer, the next step will be tests to see if they also work for earlier cancers.

Here is what you can do to help:

• Get involved. Consider enrolling in a study if you are eligible, and share information about PARP inhibitor research with everyone that you know. Post it prominently on your social media pages, share it with your online or in-person support group, discuss it with your local media, and write or blog about why hereditary cancer research is important. Please remember to share your efforts with us. Email us,  post on FB or the FORCE message boards about ways you have spread the word about this important research.
• Stay tuned to FORCE to learn of new available studies. We will be updating this page in the upcoming weeks with new featured studies so check back often.
• Support FORCE with a donation to help us continue our important work to advocate and recruit for research specific to hereditary cancer

We must participate in and promote hereditary cancer clinical trials and other studies if we and future generations are to realize more effective treatment and prevention for hereditary cancers.

Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE

Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE:

'via Blog this'

Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road

Posted on December 12, 2012

This blog is a call to action! Please read on, and then post, blog, tweet, retweet, and share about this issue so that we can assure that hereditary cancer research continues!

The call for more research is a constant theme for all diseases including cancer, and sometimes it’s easy to get frustrated by the slow pace of progress. The multistep process from discovery to FDA approval is often long and doesn’t always end in success. But research is necessary to assure that new treatments work as well or better than current standard-of-care. For this to happen, studies must recruit enough people to prove that the agents work. This is particularly critical for research that focuses on a small specific population like people with a BRCA mutation.

PARP inhibitor research is a prime example. I first heard about PARP inhibitors at the 2005 ASCO annual meeting. In her plenary address on advances in hereditary cancer, Dr. Barbara Weber from the University of Pennsylvania mentioned targeted agents (PARP inhibitors) that were designed to exploit weaknesses of cancer cells in people with BRCA mutations. This was exciting news! I was hopeful that this could be the beginning of personalized therapy for people in our community. From that moment on, I vowed to do whatever it took to learn about, share with our community, and promote the studies to determine whether these drugs worked.

Early small clinical trials of PARP inhibitors were promising, but delays and road-blocks affected development of larger research studies. Some of the roadblocks had to do with study design; others involved dosing or side effects as researchers determined the most effective combinations of PARP inhibitors with other anticancer agents. Despite these issues, enthusiasm continues for the potential of these drugs in people with BRCA mutations. Yet, eight years later, there are still no FDA-approved PARP inhibitors and people are still dying of hereditary cancers!

FORCE has continued to advocate for further research on PARP inhibitors, petitioning scientists, the FDA, and pharmaceutical companies to address the road-blocks and challenges and to facilitate the research and find answers for hereditary cancer. After eight long years, our pleas and efforts have been rewarded. Several PARP inhibitor studies are now recruiting, including a large, Phase II study on PARP inhibitors for women with BRCA-associated advanced breast cancer. Our participation in this research is critical. Unless enough people participate, these studies will not continue. If enrollment falls short, the next time scientists have an idea for treating or preventing hereditary cancer, they may decide that the BRCA community is too difficult to research, and fewer studies will be designed for us. That would be tragic considering how many members of our community develop and succumb to cancer.

This is where the rubber meets the road!

We have worked long and tirelessly to advocate for this research. Now that we have it, we cannot afford to turn a deaf ear. At this moment, the fate of hereditary cancer treatment research rests with each of us. Although most of the current studies are open only to women with advanced cancer, even if that doesn’t describe you, perhaps you know someone who fits that description. If PARP inhibitors work for advanced hereditary cancer, the next step will be tests to see if they also work for earlier cancers.

Here is what you can do to help:

• Get involved. Consider enrolling in a study if you are eligible, and share information about PARP inhibitor research with everyone that you know. Post it prominently on your social media pages, share it with your online or in-person support group, discuss it with your local media, and write or blog about why hereditary cancer research is important. Please remember to share your efforts with us. Email us,  post on FB or the FORCE message boards about ways you have spread the word about this important research.
• Stay tuned to FORCE to learn of new available studies. We will be updating this page in the upcoming weeks with new featured studies so check back often.
• Support FORCE with a donation to help us continue our important work to advocate and recruit for research specific to hereditary cancer

We must participate in and promote hereditary cancer clinical trials and other studies if we and future generations are to realize more effective treatment and prevention for hereditary cancers.

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HBOC Week 2012: A Call to Arms | Thoughts from FORCE

HBOC Week 2012: A Call to Arms | Thoughts from FORCE:

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Here is the entire blog post! I am indebted to FORCE and its members for being there with love, information and support throughout my journey as a Previvor and my mastectomies and other surgeries. I am here today because of my genetic and hereditary predisposition not in spite of it!

HBOC Week 2012: A Call to Arms

Posted on September 23, 2012

As we begin HBOC Week and approach Previvor Day 2012, I am again reminded of how far we have come and how far we still have to go in the fight against hereditary cancer.  The growth of our organization, message boards, mailing lists, and Facebook and Twitterpages tells the story: more people than ever are aware of hereditary cancer risk and are turning to FORCE for information, support, and resources. This is all good news, but at a recent meeting at the Centers for Disease Control (CDC), the Director of the Office of Public Health Genomics, Dr. Muin Khoury, emphasized that most people who are at inherited high risk for cancer are unaware of their status. Recognizing that identification of people with BRCA and Lynch Syndrome mutations and offering medical intervention on their behalf can save lives, the CDC is now working on an initiative to integrate genomic education and awareness into the states’ Departments of Health.

These programs are sorely needed. On a daily basis through our programs we hear from people who are unaware of their high cancer risk or their options to manage it. The tales we hear illustrate how much work is yet to be done. We hear of high-risk women who are denied breast cancer screening and told that they are too young to have mammograms or that they do not need MRIs, survivors who are not aware of their high risk for future cancers, and people who meet expert guidelines for genetics evaluation but are not referred for genetic counseling. Media reports on screening guidelines often omit the fact that recommendations for people of average risk are not adequate for those who fall in the high-risk range. Some vocal individuals and groups malign genetic evaluation and risk management as unimportant or overtreatment. And stories like the one recently published on BloombergBusinessweek.com show how patients pay the price when health care providers who lack training in genetics misinterpret test results.

But despite these setbacks we have had a lot of wins. Earlier this year a generous gift from Mindy and Jon Gray created the Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania. It is the first comprehensive center dedicated solely to the pursuit of research and provision of care relevant to BRCA1 and BRCA2. The United States Preventive Services Task Force incorporated information about BRCA into their recommendations for ovarian and prostate cancer screening. The CDC’s Actions to Save Lives Now, a workshop on incorporating genomics into public health, focused on bringing the public lifesaving education and awareness, and that’s a great step forward. In a few weeks we will host our 7^th annual Joining FORCEs Against Hereditary Cancer Conferencewith record-breaking attendance and participation.

HBOC Week/Previvor Day logo

As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.

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Been There, Miss That

I recently received an email with photos of places I have been and are now long gone. I miss going to places like that when I was younger.  Those were the good old days for certain. How many of you out there from the local Philadelphia area remember these!

American Bandstand

Original Philadelphia Civic Center

Diving Horse at Steel Pier

Dorney Park

Horn and Hardardt Automat

Hawaiian Cottage (interior)

Hawaiian Cottage (exterior)

Ideal Clothing Store

Latin Casino, Cherry Hill, NJ

Lucy the Elephant, Atlantic City, NJ

Mike Douglas and Frank Rizzo

Olga's Diner, NJ

Swan Boat at Willow Grove Park

Schmidt's Brewery

Steel Pier

Tacony Drive-In

Zipperheads on South Street

A Simpler Time

I have been thinking quite a bit of what it was like when I was younger and didn't have to worry about adult responsibilities. When the biggest decision was whether to play Chinese jump-rope or hopscotch. Should we make chalk drawings or go on a walk to the "Grove", our local shopping locale.  What memories. Special, care- free days. Sundays spent with family not surfing unless you lived in California. Nothing was open on those Sunday afternoons; just Sunday School and dinner at 3 and then Lassie and Wonderful World of Disney. Safe sex was when you didn't get caught by your parents. Nobody came out of the closet unless they were searching for a lost shoe. No MasterCard or Visa, but my mom had a charge-a-plate. Discover was reserved for the Scouts and 4H clubs.

I miss those days. I see my grand-kids on crazy, dizzying schedules. How do we tell them to slow down, watch that sunrise/sunset. Yes, stop and smell the flowers and look for ladybugs. Spend a pleasant afternoon lying on your back and imagine the shapes the clouds are making and collect the lightening bugs on a summer night. What happened to Red Rover, Kick the Can, Freeze or Flashlight Tag  and Red Light/ Green Light? These are not replaced by Wii or Xbox. I have come to enjoy hearing the basketballs pounding the pavement and even the occasional wiffle hitting the siding.

I hope I never really grow up inside, my inner child. I want to remember all the great theme songs to those TV shows we knew by heart: Gilligan's Island, the Partridge Family, The Monkees. Black and white and only 4 channels to choose from. No remote control, that is what we kids were there for, to turn the huge knob and try to fine tune with the larger plastic wheel behind it. Remember the small dot left behind when it turned off? And how many out there stayed to watch how long it took to disappear? 

I will take my magic mirror now and look for my friends out there...I see Kathy and Nancy and Sandy and Karen and Marge and Chris and Cindy. And so many more who shared these great moments with me. Cherish these memories and pass them along to your kids and grand-kids when they come along. See you out on the lawn on our backs looking at the clouds. I think I see a camel, no its an elephant, nope, a dragon. Well, you get the idea!

A very good friend of mine sent me the following email:

Long ago and far away, in a land that time forgot,
Before the days of Dylan, or the dawn of Camelot.
There lived a race of innocents, and they were you and me,

For Ike was in the White House in that land where we were born,
Where navels were for oranges, and Peyton Place was porn.

We learned to gut a muffler, we washed our hair at dawn,
We spread our crinolines to dry in circles on the lawn..

We longed for love and romance, and waited for our Prince,
And Eddie Fisher married Liz , and no one's seen him since.

We danced to 'Little Darlin,' and sang to 'Stagger Lee'
And cried for Buddy Holly in the Land That Made Me, Me.

Only girls wore earrings then, and 3 was one too many,
And only boys wore flat-top cuts, except for Jean McKinney.

And only in our wildest dreams did we expect to see
A boy named George with Lipstick, in the Land That Made Me, Me.

We fell for Frankie Avalon, Annette was oh, so nice,
And when they made a movie, they never made it twice..

We didn't have a Star Trek Five, or Psycho Two and Three,
Or Rocky-Rambo Twenty in the Land That Made Me, Me.

Miss Kitty had a heart of gold, and Chester had a limp,
And Reagan was a Democrat whose co-star was a chimp.

We had a Mr. Wizard, but not a Mr. T,
And Oprah couldn't talk yet, in the Land That Made Me, Me.
We had our share of heroes, we never thought they'd go,
At least not Bobby Darin, or Marilyn Monroe.

For youth was still eternal, and life was yet to be,
And Elvis was forever in the Land That Made Me, Me.

We'd never seen the rock band that was Grateful to be Dead,
And Airplanes weren't named Jefferson , and Zeppelins were not Led.

And Beatles lived in gardens then, and Monkees lived in trees,
Madonna was Mary in the Land That Made Me, Me.

We'd never heard of microwaves, or telephones in cars,
And babies might be bottle-fed, but they were not grown in jars.

And pumping iron got wrinkles out, and 'gay' meant fancy-free,
And dorms were never co-ed in the Land That Made Me, Me.

We hadn't seen enough of jets to talk about the lag,
And microchips were what was left at the bottom of the bag.

And hardware was a box of nails, and bytes came from a flea,
And rocket ships were fiction in the Land That Made Me, Me.

Buicks came with portholes, and side shows came with freaks,
And bathing suits came big enough to cover both your cheeks.

And Coke came just in bottles, and skirts below the knee,
And Castro came to power near the Land That Made Me, Me.

We had no Crest with fluoride, we had no Hill Street Blues,
We had no patterned pantyhose or Lipton herbal tea
Or prime-time ads for those dysfunctions in the Land That Made Me, Me.

There were no golden arches, no Perrier to chill,
And fish were not called Wanda, and cats were not called Bill..

And middle-aged was 35 and old was fifty-three,
And ancient were our parents in the Land That Made Me, Me.

But all things have a season, or so we've heard them say,
And now instead of Maybelline we swear by Retin-A.
They send us invitations to join AARP,
We've come a long way, baby, from the Land That Made Me, Me.

So now we face a brave new world in slightly larger jeans,
And wonder why they're using smaller print in magazines..
And we tell our children's children of the way it used to be,
Long ago and far away in the Land That Made Me, Me.

If you didn't grow up in the fifties,
you missed the greatest time in history. 

In Memorium: Ruth Grace Waldman Weiner, 1934-2012

On Sunday, February 5, 2012, my mother passed away. She was alone, meaning she did not have any of her family surrounding her. I always thought I would be by her side as I was when our dad passed away. At that time only my brother was away at college. But even he got to say goodbye over the telephone. Eric and I had seen her just that Thursday to bring her clean clothes. She was on her way for a shower and anxious to go. So we hugged and the CNA wheeled her to get cleaned up. She really enjoyed her showers and loved to feel the warm water run over her. She always said it beat the hell out of the brief bird bath she got every day. I talked to her Friday, Saturday and Sunday night. That was my last time, Sunday at my dinner break.

My husband Larry and I had just gotten home from watching the Super Bowl with our friends. We had settled in for the night and my son Eric arrived home from his father's. We were catching up on our weekend activities and rehashing the football game when the nursing home called to tell me mom had another episode of respiratory arrest, the ambulance arrived and started an airway and gotten her breathing again. Somewhere in the less than ten-minute ride to Jeanes Hospital, she stopped breathing again. Even though the ER staff worked on her for a half hour, she never revived. I had asked my brother Glenn to call the hospital and find out what had happened as he had the Power of Attorney. When he told me "she never revived" I was uncomprehending. I actually asked him if he was kidding. Of course he was not, our 77 year old mother was gone.

We rode over as soon as he could get dressed and went in with extreme trepidation. I was not sure what we would find. When dad died, he was in his hospital bed and seemed like he simply went to sleep with one last gasp of breath. Mom had already passed. Her eyes were closed and mouth was open a bit since she had an airway in. Her hair was messed up like she also had been in bed. Her color was very pale, her lip color non-existent. I took a breath for her. I was waiting for to hear the all too familiar snoring. I looked for her chest to rise and fall. I could not believe it was real, that she was gone. Forever. And we were not there when it happened. 

I touched her arm and help the hand that was left exposed. Had the ER staff left it there knowing we would want to hold her one last time? My heart hoped so. Her skin was still warm to the touch so how could she possibly be gone? This was impossible. I sat in the chair by the bed and laid my head on her side and the tears fell. I still was in disbelief. Then I bowed out and let Glenn have a private moment with her. We left. The next day the funeral home would pick her up and prepare her for burial.

One thing I am grateful for is that the funeral home gave us an opportunity to say goodbye one last time in the chapel. She was resting. Her hair and makeup made her look so beautiful. She was dressed in a plain white cover with a lovely lace collar. Eric got to say goodbye to his beloved Mom-Mom. Larry got to say goodbye and he kissed the top of her head the same way he always had. I got to see her looking pretty and "normal", it wiped out the last image from the ER and I was able to see her as she looked even before her health was failing.  When I told Glenn how she looked I could see how more ease he was. She looked much more like she did at Eric's Bar Mitzvah in 2006.

(The following is what I wrote and my sister-in-law read for me at the burial service)

When we spoke Monday night with Rabbi Carr, it was hard to focus on just what I felt was most important to tell him about our mom. Then I realized this morning that all of our memories were valid, significant and valuable. We each had our own memories. We all had ones that were centered on a particular event. Some quite personal, some general observations. Many shared by all of us.

Music was always part of our lives. Fortunately she carried a tune slightly better than daddy and from when I was little until as recent as last week, a tune would spring out, especially on a car trip and we had a family sing a long. I grew up knowing all the WW2 songs and the score from most musicals! We still have the song list from her teenage years spent in Wildwood and I remember most of them.

She surprised us all many times. We knew her favorite singer was Ed Ames and movie star was Sean Connery with Charlton Heston a close second. But then I found out she harbored a passion for the Beach Boys to the point where we had all their CD’s and also Johnny Cash. And Steven Seagal movies were some of her favorites. We rented each one as it came out at Blockbuster. 

Her capacity for love and helping others was endless, whether family, friends or one of our friends. She was tough as nails when she had to be, especially in business. Her nicknames bestowed upon her from subcontractors ranged from Coach to General. But kind and gentle too when the situation called for it. She did harbor a strange quirk. Mom had this nervous reaction when one of us was in the doctor’s office getting stitches or a minor procedure. Mom would laugh through the entire time. Not just a giggle, full blown laughing.

I am going to miss her very much. I am overwhelmed at the emails and comments from friends on Facebook and the memories they have of my mom. She was my best friend, teacher, comrade in arms, and confidante. No matter what path we decided to take, she was behind us totally. That is not to say she didn’t put in her two cents but when it came down to it, she would defend our decisions to any and all who doubted.

When I look back at her life, it was full. She had a soul mate and true love in Daddy, two children who have found their own loves in life and 3 beautiful grandchildren who love her too. A huge void is in all our lives as she touched everyone in her own way. 

Love you Mommy. To paraphrase her favorite song to sing to Eric when he was a baby: You are my sunshine, my only sunshine and your memory will make me happy when skies are grayest. I hope you knew how much I loved you. My sunshine has been taken away but the warmth of it lingers forever. And may I borrow your favorite phrase whenever someone was leaving, Watch the way you go.

________________________________________________________________________________

Since the funeral and the two days of Shiva, I have had many emails and posts on Facebook. When my dad died in 1989, these things did not exist. I am grateful to hear how she affected others' lives and quite taken with the memories. 


It has been almost exactly 33 years since my dad passed away. I looked online to see if the number 33 has a special meaning. Apparently it does, something profoundly spiritual. I am moved once again! This is from lovetoknow.com:

In numerology, 33 is often thought to be a deep and spiritual number. The number has had many religious connotations throughout the years and is associated with the beginning of monotheism 3,300 years ago. The number also bears religious weight in Hinduism, Buddhism, Judaism and Islam. The number 33 also carries weight with the Freemason group.

In numerology, the number is not easily obtained. As any student of numerology knows, double digit numbers are normally not recognized in numerology as the first and second numbers are just added together to get a single digit number. However, certain numbers are special in numerology (33 being one of them), and their double digit form is recognized as a life path number for people special enough to be have these numbers in their life.

I will say Kaddish, the memorial prayer, at services. I will remember her with love. I will make sure her grandchildren know who she was. I will miss her terribly.

A very close family friend told me something at Shiva Wednesday night:

"You get over the death of your father. But when your mother passes away, it is so much different. This is the person who gave you life, your first breath, healed you, dressed you, shaped your life. It may be years before you really understand it but never will you forget how this feels and your heart never heals."

It helped last night and I hope to remember to pass these wise words to someone else who needs help healing. And also to remember, Zichron L'vracha: May her memory be a blessing.

My favorite memories are of our visits to mom's lifelong friend since they were in First Grade. We would travel to Pittsburgh and they came East to visit with us and their family. In 1975, we had a picture taken of all eight of us and this is the way I will remember my parents:

                                        

If anyone is so moved to honor our mom, please make a donation in her name to FORCE: Facing Our Risk of Cancer Empowered, 1607 Tampa Palms Blvd. W, PMB #373, Tampa, FL 33647. You may be asking why FORCE?. In the mid 1990's we tested for the BRCA genetic mutation. I had genetic counseling when I found out I carried the BRCA2 mutation which increased my risk of breast cancer by 85-95%. I had my ovaries out in 2002 to reduce the  risk of ovarian cancer and the risk of breast cancer to 50%. Nobody really questioned my choice after all I was 42 and who had babies at that age? Then I opted to get a prophylactic bilateral mastectomy with reconstruction to reduce my risk to less than 3%. My mother encouraged my choice so that I never had to go through what my dad endured and would live to see my grandchildren. When someone mentioned that I was mutilating my body, my mother stood her full height of 5'3" and gave them a piece of her mind, including some choice expletives. She appeared to me to be seven foot tall! I loved her more than ever for that.

One of my college classmates had forgotten mom's parting phrase she always used and was reminded of it when I posted my speech. A high school classmate said his mother always said, "You are loved". He was so taken by my mom, he combined both.

I leave you with "Watch the way you go-you are loved."

Beth

Fridays for FORCE: A Bit Late!

So many things have been happening this past week, including my return to work after a 3 week leave of absence. In catching up, the Komen v. Planned Parenthood debacle occurred.

In response, there are many articles and opinions.

For my response, I have added pages to my Blog. At the top, you will see tabs. Please click on the one marked IMPORTANT VIDEOS. On this tab, I will update with more videos to look at. Right now there are just a few. But important they are indeed.

Happy viewing!

Love and hugs,
Beth

Fridays for FORCE: Book release!

Every week, a book is released that really helps the public. Not so often, a book is released that helps a segment of the public that has too few well-researched and apropos to their own experiences. One such book is being released this February 9th, 2012. Co-authored by Sue Friedman, DVM and Executive Director of FORCE and Rebecca Sutphen, MD and Kathy Steligo, this book delves into hereditary cancer and being to identify and understand your individual risk.

Cover of the New Book

Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny

By Sue Friedman, D.V.M., Rebecca Sutphen, M.D., and Kathy Steligo

If you are concerned that the cancer in your family is hereditary, you face difficult choices. 

• Should you have a blood test that may reveal whether you have a high likelihood of disease? 
• Do you preemptively treat a disease that may never develop? 
• How do you make decisions now that will affect the rest of your life? 

Confronting hereditary cancer is a complex, confusing, and highly individual journey.  With its unique combination of the latest research and expert advice about genetic counseling and testing, preventative surgery, fertility and family planning, and health insurance coverage information, as well as compelling personal stories, this book gives previvors, survivors, and their family members the guidance they need to face the unique challenges of hereditary cancer.

Sue Friedman

I am looking forward to reading this book and seeing where to go next in my journey of being BRCA2 positive. So far, I got past high surveillance, moved into an Oopherectomy (removal of ovaries) and graduated to a Prophylactic Bilateral Mastectomy (PBM). With each step, I reduced my risk of more than 90% to less than 2% for ovarian cancer and less than 4% for breast cancer. I need to adjust to my new life everyday. Having had the PBM, I found out I had DCIS stage 0 and removing my breasts was the thing I would have done anyway with that diagnosis. Cancer-free is where I stand today and "Confronting Hereditary Breast and Ovarian Cancer" will take me beyond that level.

I just pre-ordered the digital version for my Nook. It is available to pre-order as a hardback for $29.66 on bn.com or the Nookbook at $9.99. Go to http://goo.gl/A0Eaf.

I know this book will be informational and empowering to all of us who are part of the BRCA Community. As always, you can find more information, support and unconditional friendship at www.facingourrisk.org. There is also a Facebook page for FORCE , https://www.facebook.com/facingourrisk, visit and click LIKE when you are on the Internet.

Love and hugs,
Beth