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

FORCE Fridays: Help is Here! Find Your Local Support Group

Here is a link to help find a support group near you: http://www.facingourrisk.org/support/local_groups/index.php

I never put much faith in support groups. When my father died I was totally grief-stricken. My mother was even worse off. We were both counseled by friends and family to go to a support group and be among people who are experiencing the same thing. To put it mildly, they, well, they sucked! The Widow and Widowers group my mom attended was filled with women either looking for another partner or just stuck in grief mode and with men coming for the free food and maybe another caregiver. In my mother's own words at the time she said, "I am not looking for more dirty socks and sex. I want to move on with my life." As for me, I found the meetings with the family grief group at the hospital depressing and most were there to relive the life of their dearly departed. Don't get me wrong, I was sad, depressed and wanted to keep my dad's memory alive. But this was too suffocating.

So, when I found out I carried the BRCA2 genetic mutation, I was looking for some answers to my questions in my head. But I had a bad taste for the support groups. I thought I would try the Internet in 2006 when I was debating whether or not to move from heavy surveillance to prophylactic surgeries. I was already on Tamoxifen, a drug used to help ward off the cancer cells. I found loads of sites for breast cancer but since I had not yet been diagnosed, I felt like the proverbial square peg in the round hole. 

Then  one day, I was quietly surfing again, and I stumbled upon FORCE: Facing Our Risk of Cancer Empowered. I was actually looking for more information on prophylactic mastectomies and this website popped up. It was on the 3rd or 4th page which I normally don't venture to. But oh, my relief when I opened the page! There were my people! They got it! They knew what I was going through! There were message boards, live chat rooms and so much information to read. And one thing I did not expect, a local support group in Philadelphia. 

I was not in a rush to get involved with a face-to-face group after my experiences previously. But after making the decision to have surgery and the subsequent infections, cancer and multiple surgeries, I thought I would give it a try. There were 13 women plus the two Outreach Coordinators. This was very different. This group of women were all ages and backgrounds. Some survivors and mostly previvors. We talked, laughed, cried, talked some more. Found out the new trends, new information, news about FORCE itself. Then we had Show and Tell. We went into the kitchen and got to show our surgeries and tell about them. The rest of the group were encouraged to ask questions. Answers were given and more. Nobody felt alone anymore. We had sisters in the flesh, literally!

That was 2007. The Outreach Coordinators number 4 in our local group. At last count, there were over 200 women who receive emails and that we reach out to. The group has lists of doctors, hospitals and genetics counselors to interview and check out. We have one-on-one support before, during and after surgeries if the person wants it. There is a special part of the group that helps those younger women not ready for anything more than just close surveillance. The Outreach groups themselves have grown from 10 to over 60 and more are being developed as I write. There are even International groups now in Australia, Canada, England and New Zealand. I know that our Vice-President of Volunteers, Sandy Cohen, is trying to get more Outreach groups going all the time. 

If there is not a group available near you. please got to the URL I provided at the beginning of this post and check again. If they are too far away, here is an URL to go to so you can fill out the Future Network Sign Up Form:

http://www.facingourrisk.org/support/local_groups/future_signup.php

As always, FORCE family is here to help, support and provide love and information to get you through your journey as smoothly as possible. 

Love and hugs,

Beth

Pinkwashing is Year Round

Susan G. Komen for the Cure makes mockery of self with KFC pinkwashing campaign (opinion):

'via Blog this'

The above referenced article really points out the dichotomy of Susan G. Komen for the Cure. On one hand they want to get people to donate money to their Fund. On the other hand, they have almost any company endorse as long as they are willing to add pink to their printing press. Yes, it is as simple as all that. PINK, Pink, Pink. It is virtually all year round now, not just in October.

Also, another article I found (http://www.naturalnews.com/Komen_for_the_cure.html), links The Big K with Planned Parenthood. I am not seeing a relationship here. Why are they donating funds to them? I am not going to get into a debate on birth control, womens' rights, pro-life or pro-choice here. My point is that these funds, according to the Big K, are going to pay for mammograms and health checks for women. The basis for the donation deals with the reduced incidence of breast cancer when a pregnancy is carried to term. Turn the statistic around! Can it not be said that abortion is contributing to breast cancer? This is an argument that never should have been entered into by the two organizations.

I also found that in 2010, KFC was selling Buckets for a Cure, resplendent in their pinkness. You need to read the journalist's point of view. I agree with him that it seems that Big K is encouraging the consumer to eat the KFC fried chicken. Now, let us review this! What covers the chicken? White flour, salt and MSG along with the secret seasonings. The first three ingredients are quite harmful. As a matter of fact, MSG is a known carcinogen. Eating this fried food leads to obesity (not that I am one to talk, being seriously overweight) and that is proven to lead to increases risk of breast cancer as well as others. Frying at a high heat produces

acrylamides, toxic chemical by-products of cooking that are believed by manyhealthexperts to promote cancer (http://www.naturalnews.com/acrylami...). One scientific study, for example, demonstrated thateatingacrylamides boosts kidney cancer rates by 59 percent. Acrylamides are also linked to ovarian cancer. {Thursday, April 22. 2010, Mike Adams}

P. F. Louis writes in this article about where Big K's money goes (http://www.naturalnews.com/033783_Komen_for_the_Cure_pinkwashing.html) that the former CEO of Big K received $500,000 per year. Nancy Brinker, founder, has stepped in to take over but there are no figures pertaining to her salary. In the 2009/2010 fiscal year, they handed out teh following:

$141 million for education, $47 million for health screening, and $75 million for research. Fundraising costs and affiliate expenses were approximately $60 million with general administrative costs at $37 million.

Do not get excited about these monies. Not once has anyone been educated correctly about nutrition and what foods to avoid to help prevent breast cancer. There are doctors in this country and abroad who are working on drugs to help treat breast cancer but they have not received any funds. What about the thousands and thousands of metastatic patients out there? Any money going to help them? I have seen any reports on that front. Let us not forget the men who have breast cancer. My father died from breast cancer and the males who have a family history are not exempt. Big K does not recognize them to the best of my knowledge. It is only PINK!

Big K has been raising money since before 1982. Why, in all these years, have they not found the ever elusive cure? Of course not. Think of the corporate executives in the pharmaceutical industry, the chemotherapy producers and the radiation technology suppliers. They would be standing in the unemployment line right next to the mets patient who cannot hold a job longer than the respite in between chemo and radiation. 


Off to go fight other windmills kids! Sancho, saddle my horse and give me my lance and helmet. What color shall we use for the ribbons? Certainly not PINK!


Love and hugs,
Beth


P.S. Thank you to 

FRIDAYS FOR FORCE (Facing Our Risk of Cancer Empowered): About Us

FORCE (Facing Our Risk of Cancer Empowered): About Us:



'via Blog this'

Just browsing through the FORCE: Facing Our Risk of Cancer Empowered Website and was reminded of a very important segment that is offered, The Patient Experience Tool.

Ask yourself, how many times do you ask about a good book to read or which restaurant to try? Always asking for referrals from family and for important and inconsequential matters? Of course you do! So what would make choosing a Breast or Plastic Surgeon, hospital or genetics counselor any different?

This service is provided for and by volunteers and members of FORCE. Their personal opinions are there for anyone to take with them in helping to make an informed decision about their next step in dealing with Hereditary Breast and Ovarian Cancers. I myself have also provided information and very glad to share through my blog as well:

Fox Chase Cancer Center and Margaret Dyson/FRAP (Family Risk Assessment Program) is where I went for my BRCA testing (tested positive for BRCA2 in 1996) with Dr. Mary Daly.

(http://goo.gl/yDN6j for more info)

Abington Memorial Hospital (AMH) is my choice for surgery, especially since my doctors are on staff there. (http://goo.gl/YppSz)

Dr. Christopher Pezzi, also at AMH, Oncologic Surgeon, also a friend of mine. When he suggested surgery, I listened up since I knew he really had my best interest at heart. Moreover, he is a brilliant surgeon and has a wonderful reputation. (http://goo.gl/lgLQu)

Dr. Brian Buinewicz, Chief of Plastic Surgery at AMH. I cannot say enough about Dr. B! I had a rough journey with lots of setbacks and he and his staff were supportive and professional. (http://goo.gl/MduAR)

Betty Cummings, RN: She is the light of AMH in connection with Breast Cancer Support. She appeared at my hospital room door one morning and reached out to me with advice and help. Her information can be found on this url: http://goo.gl/f1y0B. Also on this page are links to "Look Good Feel Better" program by American Cancer Society, Gilda's Club at AMH and plenty of other information.

Remember, all these recommendations are totally subjective. Please! Remember this caveat for me and especially FORCE:

This website and the Registry service are for individual educational use only. Nothing on this site is or should be considered, or used as a substitute for, medical advice, diagnosis, treatment, or other information that could only be obtained by a face to face interview with a health care service provider. Any listing of a health care service provider’s information and/or views expressed in connection with submission of such information is solely the view of the Submitter and does not reflect the position of FORCE nor is anything on this website to be deemed an endorsement of any such doctor or health care service provider by FORCE. Use of any such doctor or health care service provider is engaged in by you at your own risk.

Love and hugs,


Beth

Five Movie - Official Site - myLifetime.com

Five Movie - Official Site - myLifetime.com:

'via Blog this'

I am watching the movie, "Five". I am on the third segment as I write this. As usual, I am crying. But I wonder if I am crying over the characters on the small screen. Am I crying over the loss of my father who passed away from breast cancer in 1989? Am I crying over the battles fought and won and lost by my friends? Some are more than likely happy tears for those that have survived chemo, radiation, surgeries and pain but are still here to tell their own tales.

There are times that I wonder if breast cancer is just lurking under the surface. I am at the same age my father was battling his breast cancer. So are the surgeries and chemo-prevention enough to chase away that genetic and hereditary predisposition? I am so full of doubts. I find myself volunteering for anything I can do with FORCE: Facing Our Risk of Cancer Empowered. This is in some way, a reaction to my fears. FORCE helped me through the worst of the times when I had my mastectomies. So giving back is what I need to do.

I also find myself very short-tempered. I erupt, mildly at times and others when lava seems to flow venomously out of my head out loud and also on paper. I have this dread lurking. I should be celebrating the fact I am here and alive and have a beautiful family. And one of my friends from FORCE, Caryn, told me once I am feeling survivor guilt. It is beginning to really invade my thoughts on a regular basis.

Survivors have this feeling of waiting for the other shoe to drop, waiting for breast cancer to rear its ugly head as a metastasis in another part of their body. And it is deemed OK. But is it OK for someone who "dodged the bullet" to wonder if it really is not going to happen? It has struck in a straight line from my paternal great-grandmother, grandmother and then my father. Every one of my family members who opted to be tested for the BRCA gene mutation, has tested positive. It seems to run very strong in our family, even one of my dad's cousins died from ovarian cancer. Our chances are higher than the average person's of developing cancer. The average woman's chance of developing breast cancer is one in 8. As my son just asked me, "Does that mean if you lined up 64 women, 8 of them would have cancer?" More than likely yes.

Because I carry the BRCA2 genetic mutation, my son has a 50% chance he will carry it too. He is now 18 and can make the choice himself to test or not. He has indicated that he wants to. But before he does, I will make sure he has genetic counseling at Fox Chase Cancer Center which is where we were all tested at the Dyson Family Risk Assessment Program (FRAP). I am the only female in my generation and my niece is the only one in hers. She is way too young to be tested yet. I feel guilt over this as well, that I may have passed the gene on to my son and perhaps my brother on to his children.

As I ramble on, I am reminded of the last line of the tile on the wall in the last segment, "Hope for the future." This needs to slowly replace my doubts and concerns. I will never stop helping to Spread the Word and Save a Life through FORCE. Men and women both need to be aware of their family history. Get genetic counseling to see whether or not there is a need for testing and if there is, listen to what they have to say. Better yet, take your significant other or friend to help absorb what you hear. Because like in the "Lily" segment of the movie, sometimes you don't hear the doctor and you need that support to help you! And remember FORCE is here too, www.facingourrisk.org!

Thank you to the directors and producers who made this movie with taste and warmth!

The wall as shown in the last segment, "Pearl".

Love and hugs,

Beth

22 Years Later

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

"The Big C": A Drop of Humor?

I just saw a preview for a new series on Showtime.  It is called "The Big C" and stars two of my favorite actors, Laura Linney and Oliver Platt.  This is the link to see a short preview so you can judge for yourself.

 http://www.sho.com/site/video/brightcove/series/title.do?bcpid=69609888001&bclid=69534010001&bctid=69706721001

I am not entirely sure how the cancer survivors out there are going to view this.  Anything expressed remember, comes from my own opinion, no facts unless I can back them up are being stated.  As a previvor, one who has a hereditary or genetic predisposition for cancer but has not been diagnosed with cancer (see FORCE, Facing Our Risk of Cancer Empowered, http://www.facingourrisk.org/) I can see many issues evolving. 

There are many schools of thought and I have a toe skimming in many of them.  I agree that Life is not all seriousness and we need to add a dollop of humor in order to be able to get through Life less scathed.  Gilda Radner once said that Cancer does not like to laughed at, I am paraphrasing.  I have heard stories of cancer patients who would rent the Three Stooges Colection of movies and sit and watch and laugh.  In my father's case, he and Mom used to watch Abbott and Costello films at every chance they had.  Laughter is the best medicine so they say.  The truth really is that it only takes 2 muscles to smile and many, many more to frown.  So maybe laughter will not cure cancer but it makes it a bit easier to get through it.  Anyone who saw the movie, The Bucket List, can remember the bittersweet laughter shared by the two main characters.  My own reaction to ANY kind of stress or sticky situation  is to tell a joke or make people laugh.  I may interject humor too much but I would rather be distracted in that way.

Humor can definitely break the ice.  My uncle always started a speech before a group with a joke relevant to his subject and the audience.  But what about cancer is funny?  The other view, not really against humor, can be seen as more serious rather than being negative.  The treatments, procedures, decisions, plans and sacrifices are certainly not to be taken lightly.  Too many lives will be touched.  The world's view of a cancer patient has changed but laughter is not always associated with them.  More often fear, anger and pity are the feelings present.  Not to make light or even be sarcastic about a patient's feelings regarding their disease, but the family and friends surrounding them tend to be cautious at times, not knowing what the reaction will be until that first time they encounter the situation.  I was witness to my father's cancer journey.  Maybe today with the dose-dense treatments, he would have survived.  One cannot use 20/20 hindsight with the past like that.  So what does one do when faced with a diagnosis of cancer?

It is a very personal choice on how that patient decides to live their life.  Over the years, I have been fortunate to know many warriors and glad to say a huge number of survivors.  Some stay in denial a long time.  There are those that plan every single minute they have to either live the fullest or make sure all is in order "in case" they don't survive.  We also have patients who take it in stride and resolve to not let cancer get the best of them.  Are any of the choices right or wrong?  Who is the judge on that?  Who even has the right to presume the answer lies elsewhere for that patient?  The answer lies with each individual heart.  I marvel at the woman who sits stoically through chemo treatments right next to the one whose friends have shown up to give her a makeover while being infused.  The dichotomy happens all the time.  Each patient's personality is the key to how they handle their situation.  As a previvor, I think we go through similar though not entirely the same reactions. 

OK, so what about the TV series?  I will wait until it comes out on Showtime to make up my mind.  I am hoping it will treat cancer with the respect, fear and courage it deserves.  Yes cancer does derserve all of this.  If not, it can take over your life and love.  Cancer can demolish it.  But only if you let it.  That was how my Dad fought against Cancer.  If I ever am diagnosed, I will be just like my Daddy, face it and deal with it every day and take it in stride.  And in my opnion, the best way to prevent that from happening is to laugh.  Laugh so hard that it hurts the sides of your face.  So very hard you have to do the squeeze your legs crab walk to the bathroom to avoid an accident.  Laugh until you cry.  Then have a good cry and put in your favorite comedy, cuddle up with your family and friends and start the laughter all over again.

Love and hugs gang,
Beth