An article from CNN.com written by Allison Gilbert

My preventive mastectomy: Alive for my kids


I'm not a helicopter parent and my children would tell you I don't bake cupcakes for their birthday parties. But I'd readily cut off my breasts for them -- and recently, I did.

Removing breast tissue uncompromised by cancer is relatively easy. It took the breast surgeon about two hours to slice through my chest and complete the double mastectomy seven weeks ago.

The time-consuming part was left to the plastic surgeon who created new breasts out of my own belly fat so I could avoid getting implants. Total operating time: 11.5 hours. And I don't regret a second.

The decision to have surgery without having cancer wasn't easy, but it seemed logical to me. My mother, aunt and grandmother have all died from breast or ovarian cancer, and I tested positive for the breast cancer gene.

Being BRCA positive means a woman's chance of developing breast and ovarian cancer is substantially elevated.

"Patients with BRCA1 or BRCA2 mutations have 50%-85% lifetime risk of developing breast cancer and up to approximately 60% lifetime risk of ovarian cancer," according to Karen Brown, director of the Cancer Genetic Counseling Program at the Mount Sinai School of Medicine in New York.

By comparison, the lifetime risk of breast cancer for the general population is 13% and 1.7% for ovarian cancer.

CNN iReport: Tested for the breast cancer gene?

At my gynecologist's urging, I tackled the threat of ovarian cancer first. Because the disease is hard to detect and so often fatal, my ovaries were removed in 2007, a few years after my husband and I decided we were done having kids.

The most difficult part of the operation came in the months that followed: I was thrust into menopause at 37. Despite age-inappropriate night sweats and hot flashes, I was relieved to have the surgery behind me and wrote about it in my book, "Parentless Parents: How the Loss of Our Mothers and Fathers Impacts the Way We Raise Our Children."

The emotional release was short-lived. Less than a year later, my mother's sister was diagnosed with breast cancer and died within four months.

Aunt Ronnie's death set me on a preventive mastectomy warpath. I had already been under high-risk surveillance for more than a decade -- being examined annually by a leading breast specialist and alternating between mammograms, breast MRIs and sonograms every three months -- but suddenly being on watch didn't seem enough, and I began researching surgical options.

Regardless of my family history and BRCA status, I still went back and forth on having a mastectomy. I vacillated between feeling smug and insane.

Over the years, I'd read too many stories like the one in the Wall Street Journal last week, on doctors who make fatal mistakes (up to 98,000 people die every year in the United States because of medical errors, according to the Institute of Medicine). I was anxious about choosing a bad surgeon and a bad hospital.

The stakes felt even higher after I decided to go an unconventional route to reconstruction. Implants generally offer a quicker surgery and recovery, but they're also known to leak, shift out of place, and feel hard to the touch and uncomfortable.

I would also likely have to replace them every 10 years -- not an unimportant consideration, since I'm 42.

Ultimately, on August 7, I underwent double mastectomy with DIEP (Deep Inferior Epigastric Perforator) flap reconstruction. The benefits would be that my new breasts would be permanent, made from my own skin and flesh, and I'd be getting rid of my childbearing belly fat in the process.

I had multiple consultations with surgeons who explained every reason not to have the procedure. They warned me that I'd be under anesthesia unnecessarily long and I'd be opening myself up to needless complications.

While every concern was valid, it wasn't until I was six doctors into my investigation that I realized the likely reason why I was getting such push-back. The plastic surgeons I was consulting, despite their shining pedigrees and swanky offices, couldn't perform a DIEP. The procedure requires highly skilled microsurgery and not every plastic surgeon, I learned, is a microsurgeon.

It also requires a great deal of stamina. The doctors I interviewed who perform DIEP flaps were generally younger and fitter than those who didn't. On average, a double mastectomy with DIEP reconstruction takes 10-12 hours, while reconstruction using implants can take as little as three.

In total, I met with 10 surgeons before choosing my team, and while I am now thrilled with the outcome, all the years of research and worry took a toll on me.

The worst moment came one night when my husband and I were in bed. I began to cry uncontrollably and wished I could talk with my mother and aunt about which procedure to have, which doctor I should choose, and whether I should even have the surgery.

Then a moment of bittersweet grace clarified what I needed to do. It struck me that the reason I couldn't speak to my mother and aunt is exactly the reason I had to have the surgery.

Undergoing a prophylactic double mastectomy was a great decision for me. It's clearly not a choice every woman would make, but I'm convinced without it I would have been one of the estimated 226,000 women the American Cancer Society says is diagnosed with invasive breast cancer every year.

I could have tried to eat my way to a cancer-free life, but even Dr. T. Colin Campbell, author of the popular vegetables-are-key-to-health book "The China Study" admits diet may not be enough to protect BRCA patients from cancer.

"We need more research," Campbell told me. "Conservatively, I'd say go ahead and have the surgery, and eat a plant-based diet after."

I also could have waited for a vaccine, a pill or some other medical advance to come my way that would have made such a radical decision avoidable.

Perhaps MD Anderson Cancer Center's newly announced war on cancer will produce positive results for patients who are susceptible to triple negative breast cancer, the type of aggressive disease likely to afflict BRCA1 patients and the kind my aunt most likely died from.

But every surgery substitute seemed locked in hope, not statistics. And as I've told my husband and children, I wasn't willing to wait. I love them more than my chest.

One Year Anniversary

My surgery was one year ago on September 12.  I just didn't feel like writing.  The last few months have been stressful and disappointing.  I thought when the doctor said, "you need one year..."  I thought, OK, here's my year...boom, I'm all better.  And I'm not.  Writing every night in my journal and reading where I was and what I was feeling every day leading up to September 12 was difficult.  For me, it's as if it just happened.  There is still quite a lot a do not remember, but I don't think I will ever forget the unbelievable pain.  Pain on every level.  I've shed many, many tears this year.  

Last year at this time everyday was filled with IV's, machines, hospital staff, doctors, pain pumps, drainage tubes, a doppler, compression boots, breathing tubes, monitors, etc....and family.  We all prayed that my transplanted tissue and blood vessels stayed alive.  Otherwise I was headed back to surgery.  Those days are foggy but not the pain.  ICU, hospital, recovery home...all in a mere 10 days.

September 12, this year was spent getting a mani/pedi, then meeting family for dinner at Bistango's.  A lovely restaurant with a piano bar.  We figured Jack would like this.  And he did!  After having a great dinner I DANCED with my son.  Jack loved the music, the singing and of course I had tears in my eyes.  There was no rhythm as he says "shake your sillies out."  But that's OK.  I can hold my son.  I can dance with my son.  That's all I needed.  But once again Mom had different plans......

This navy blue Audi Q7 was waiting outside for me.  

Still trying to figure out every bell and whistle and there are many.  It's like an a airplane cockpit inside.  Jack says, "I'll show you what all these buttons do."  He probably will have it figured out before I do for sure.  

2011-2012 A year I will NEVER forget.  

XO, Janeen

"Faith is the bridge between where I am at and where God is taking me." - God Posts

One Year Later

Tomorrow September 12, 2012 marks one year since Janeen's surgery.  It doesn't seem possible to me that one year has already gone by.  I'm sure to Janeen it feels like an eternity but it has only been 12 months.

After Janeen's last entry you all must have thought what the hell has happened?  She had just had one of those days and she vented on the blog.  I truly don't blame her but it made me sad to read all she wrote and I felt so helpless.  No matter what I say, or how I say it or when I say it, if Janeen's down she doesn't want to hear anything.  She was beating herself up because she has to wear a safety belt in the pool so she won't drown.  She was in 7' of water and without stomach muscles you sink.  It's easy for me to sit here and say, " so what, you had to put on a safety belt, at least your in the water doing your exercises".  See, I'm so proud of her for getting up every morning and getting in the pool that I don't think how difficult it is for her to do what the other swimmers are able to do, and so she becomes frustrated beyond words.  Then in her exercise class she  feels she needs to go to the back of the room because she ia unable to do the sit ups and other exercises everyone else can do, so again she is extremely frustrated. Again, I am so proud of her that she gets to the gym and does the class period.  I can't feel what is going on inside of her and she knows it frustrates me to always talk about what she cannot do. 

Janeen can nurture and love Jack.  She can keep house and  by that I mean do everything as she has no housekeeper.  She does all her own errands, lifts groceries, cases of water, cases of dog food and can lift and carry her 50 lb son.  I think that's pretty good for one year out. She walks her dogs, her loveable puggies, plays with Jack outside and runs up and down the street when he is riding his bike or driving his car.  Pretty good for one year out.  She still works for me doing my errands and helping me around my house, pretty good for one year out.  I think you all must be getting my point by now.
What Janeen is capable of doing is nothing short of miraculous.  The doctor's said, " you will need to give yourself one year".  Janeen heard, " you will be good as new in one year".  Big difference!

I don't have a crystal ball to know when Janeen will feel like her old self.  Maybe she never will.  That's a possibility, but I know for sure she cannot keep living September 12, 2011 over and over in her mind and be healthy. She cannot continue to feel sorry for me for the 18 1/2 hr. wait I endured.  I did it and it is done.  She was cut up really bad but she survived, she is beautiful and she is my hero.
My daughter is the strongest lady I know and she is way to hard on herself.  So, no more living in 2011, this is 2012.  The past is the past and if she/we stay in the past we miss the little joys of every day living and there are so many.  The constant worry about the future, same thing, you aren't living in the now and once the now is gone, it is gone.

So folks please continue to pray for Janeen.  We will celebrate tomorrow night with a family dinner and be so very thankful for all my family who have supported us and have shown their love for us this past year. September 12th will be a Happy Day or as Jack and I say, " it's a PARTY".

Love to all,
Barb

CAUTION..It's not pretty

If I could have written this post at 7:30 tonight at my 'Burn and Firm' class, I would be screaming....I'M SO EFFING PISSED OFF RIGHT NOW.  I WANT TO HIT SOMEBODY AND I WANT TO HIT 'EM HARD.

I am trying so effing hard right now.  You don't see all that I'm feeling, or all that I'm doing, or trying to do, you don't get what I have gone through and what I continue to go through.  You don't know just how angry I can get or how many tears I STILL shed.  I don't cry because of any poor me bullshit...I cry because I've had it.  I just want to effing quit!!!!!!!!  I do the simpliest task and it brings me to tears.  Can't do a f-ing push-up, I CAN do 8 lame sit-ups, but still can't jump, can't run, can't twist....People say can't means won't.  BULLSHIT!!!!!  It's like God wants to absolutly break my will...break my spirit!!!!  It's working.  What the HELL is supposed to happen to me?  DO I feel like a woman...NO.  Do I feel feminine...NO.  I feel like an old lady for christ sake that's trying to get back what has been taken away.  I don't need a frickin pill or a group of other woman to sit and belly-ache with.....I JUST WANT TO QUIT!!!!!!!  And I certainly don't need to date, go out and "have a good time" or meet a nice guy or hey, "try on-line dating" and anyone that even suggests it seriously doesn't get me.  This journey SUCKS!!!  My goal IS and always has been to be a strong woman and mother for Jack.  So much of this BRCA crap has chipped away at me.  I'm like 5% of the population.  5 frickin %.  You don't just get surgery and then your all better!  Expectations:  Mine are clearly too high, maybe too much.  Should I be happy with mediocre?  NOT.

This post is for ME tonight.  I have divulged a lot but there's still quite a bit I'm holding back on BUT tonight I've unleashed a bit of what I am REALLY feeling.  I try to consider who's reading this.  I try to be "PC" and watch my language.  I try to be thankful and inspiring.  F-it!  Not tonight.  I don't particularly care who reads this but it does come with a warning: CAUTION.

I don't really even know who or what I'm so pissed at....Maybe it's all the fear?  The fear this thing will beat me down.  These past years have been filled with fear for me.  First, fear of dying and now fear of NOT fully recovering.  I want to feel whole again and nobody can give this to me.  If it wasn't for Jack I'd be in the biggest darkest hole right now.  I pull it together for him.  That boy has saved me in more ways than one.  Should I find it ironic that he always tells me he's MY teacher?  He says, "I will show you....I will teach you Mommy." 

Go for it Lovey!  Cause I'm outta steam right now.

The sun will come up tomorrow and I WILL try again.  I hope to read this back to myself at some point and know I didn't quit!   Though it sure sounded appealing tonight.

Deep breath in and out...wipe the tears away.  In case you didn't know, today is day #333.



   

Lotus

Happy to write the biopsy report regarding the polyps were all negative.  I had my EUS (esophageal ultra sound) and there are no changes to may pancreas.  All good, but my doctor believes I have two gallstones.  Great!  No symptoms so hoping they do not develop into anything, but at least I know.  I had laryngitis for a week before this procedure but didn't say anything because I didn't want them to cancel, but with that and the camera down my throat, I still have vocal issues.  Having difficulty talking when I first wake up and singing along to the radio doesn't sound so great.  I used to be able to carry a tune.

I've only been swimming since I was able to return to the gym and I've hit a plateau.  I've gained 10 lbs since February yet my clothes are so big I have been buying 1-2 sizes smaller.  Well, my mom has been shopping for me because trying on clothes brings me to tears.  I used to love going shopping and now I loathe it.  I decided to ramp it up and break my plateau so I took a cardio blast class tonight.  I could do most of it, but I am still so limited it brought me to tears.  I literally cried in class and then I had to explain to the instructor why I'm looking like an ass and I hate saying it all over and over.  I used to be able to do pretty much everything in these aerobic/yoga/swimming classes....and now....not so much.  Yeah, I've come so far but I still have a long frickin' way to go.  I don't mean to get emotional but there are cracks in my mental state and I'm not always sure what will trigger the tears.  It's been 10 months now.  I do expect more.

I am really trying yet my body at times won't let me do what I know I can do.  But I do know that I'm actually very physically strong.  I look at what I have put my body through and wow.  The only time in my life I have absolutely loved my body was when I was pregnant.  The bigger I got, the more beautiful and empowered I felt.  It was amazing.  I NEVER thought just 17 months later, after having my son, I would have to remove my breasts and put my body through an 18 1/2 hour surgery, along with all my other surgeries and procedures.  I am trying to embrace every change, every scar, every bump and lump, every set back, every victory, every tear, every laugh.  I still feel broken, but I will be strong again someday.  Like a lotus seeded in muddy waters, it rises above the mud and produces a beautiful fragrant flower.

But I did do something right.  Jack an I were talking the other day about how many times he has been physically sick.  I told him 2 times.  I reminded him he got sick at the hotel when I was in the hospital.  He couldn't remember any of it.  Not being sick, that I was in the hospital, why I was there, nothing.  I was always hoping that although he sees my scars everyday he wouldn't remember.  He recently asked, "why do you have red lines all over you?"  That made me happy.

My boy turned "3."  I love that I can hold him and cuddle him when he says, "cuddle time."  I made the right choice, for me.

Here's to a work in progress,

Janeen    



 

Surgery Day & Feeling Blue

Today I had my hysteroscopy.  I tried to get to sleep early last night as I had to leave for the surgery center at 6:15 a.m.  I think I got about 3 hours sleep.  Anyway, I had to get Jack up early as well.  Poor little guy.  Mom picked us up and off we went.  I cannot believe how nervous I was today.  I was making myself nauseous.  I checked in, then Mom and Jack left once they took me back.  Prepping for the procedure, changing into my gown, getting on the gurney, then giving a medication and surgical history, I just started to cry.  Today pales in comparison to what I've been through but it was like a flood of memories came back to me.  They started my IV with fluids and then I met my anesthesiologist.  The nurses were very nice and they all said that crying was no problem, so I did.  I just layed there and cried.  If I said 'mastectomy' once today, I feel like I said 50 times.  I know they are just doing their job but everyone has to keep asking me the same questions and so I sounded like a broken record.  Dr. Wheeler, my OBGYN, arrived.  We briefly discussed the procedure to remove the polyps and aftercare.  Then off I went...... I got my 'cocktail' and I was in la-la land.

I woke up about an hour or so later.  Dr. Wheeler removed 3 polyps.  They are getting biopsied and I'm sure all will be fine but I tend to hold my breath a bit until pathology comes back.  Mom had dropped Jack off at my aunt and uncles house for the afternoon, so she was there when I woke up.  I was so groggy but it soon wore off.  I did need a shot for pain and cramping.  As the nurse was getting me dressed she asked who did my other surgery because she has seen a lot of patients and she said they all commented at how good I look.  I kinda laughed.  I know that my LA doctors did an amazing job putting me all back together, but it's weird to have other medical staff comment.  Since I still don't feel right I just said, "Thank you."  She agreed that it will take me well over a year to "feel" like myself again.  She pulled back the blankets and they were covered with blood and iodine.  So gross, I can only imagine what the hell goes on in any surgery. ICK!

I've been home in bed all day and have not been able to sleep a wink.  I get up and feel a bit dizzy so I just tweeted A LOT today.  Feeling better tonight but cramping again.  Mom has Lovey for an overnight so I'll try a Tylenol p.m. and hope for the best.  I'm so used to having Jack with me and staying on our schedule that getting a day break really isn't a break because my internal clock is thinking about him all the time.  But he had a fun day and he loves spending the night at 'Nanni's' house.

I got my take home instructions and obviously stay down, watch for excessive bleeding and cramping and fever and NO swimming for a week.  "That's my thing," I said.  Feel like I'm taking steps back again with regards to my exercise.  I'll have to do something else next week...maybe just resume my walks.

Friday is my cousins viewing which I am not attending; but his memorial is Monday in Fallbrook and I will be there.  My other cousin Diane, Jim's sister, flew into town so it'll be nice to see her.  She too is BRCA2+ and had her mastectomy last year as well.  SUCKS!!!!

On a lighter note, my amazing son is turning "3" on June 24.  We are Disneyland bound AGAIN.  He loves it; so do I and I LOVE him.  Then a few weeks later, back into the swing of things with my EUS scheduled for July (hospital again). Then I still have to get back up to LA for boobie tattoos.  I'm sure this summer will fly by.

So I've been blue today.  Looking forward to a good night sleep.

"Change is the rule of life, nothing stays the same forever, everything will change, so accept this and enjoy the journey." -Spiritual Truths

Yeah, OK.....

Janeen          

Rise and Grind

A lot has happened since my last post.  I was taking a break from doctors but knew I was taking more time off than I should, so I got back into it.  I decided to deal with the polyps that were found as a result of my ultrasound in February.  I have no symptoms but nonetheless they were found and I need to have them removed and make sure they are not cancerous.  I also have my next EUS (esophageal ultrasound) scheduled to monitor my pancreas.  So I'm back in it; not thrilled but have to keep plugging along.

Since my ultrasounds are looking good (ovaries in good shape) and my CA-125 remain "normal," I am buying time.  I'm not ready to make the decision for a BSO, or possibly a full hysterectomy (depending on the results from the hysteroscopy from the polyps).  It's such a difficult decision for me to make.  In my last ultrasound the technician saw two eggs.  It made me kind of sad.  Clearly the decision to have more children is no longer an option but I'm not ready to finalize it.  In the last few weeks I have seen two people who either have seen Jack or simply a picture and tell me, "You have to have another...Can you imagine a girl."  And I think, yes, I can imagine it and my heart breaks.  I think it's very bold for people to make such a comment to any woman, especially one in her 40's where the odds are already staked against her.  Then I have this other variable to deal with.  Rather than get into it, I usually say, "Oh we'll see."  I will probably never get over the fact that my choices were taken away from me, but all I have to do is look at my beautiful boy and know that God blessed me with one amazing kid.  The older Jack gets, he turns "3" in a few weeks, I know we were meant to be together.  We make a good team.  My love for Jack is beyond words.  He is my heart.

Speaking of heart, in the midst of doctor appointments, Jack's preschool coming to an end for the summer, and other day to day activities, I lost my cousin Jim (Cuzzy J) on June 4 to a massive heart attack.  He was a heavy smoker and never went to the doctor.  He was just 53 years old.  His daughter Erika graduates high school this week and then unfortunately has to bury her father a few days later.  I'm still in shock and feel for my family that is trying to come to terms with Cuzzy's passing.  He also left no will or trust and so it has become a very difficult situation.  I loved my cousin but I wish he had taken better care of himself and had taken care of his affairs.  I found this picture from March 2011 when we visited him at his home in Fallbrook.

*Cuzzy on the left, his daughter, my dad and little man Jack*

Rest In Peace Jim

In closing I always try to put in some relevant quotes.  I found these two that I wanted to share.

"We all experience loss. While we may consider these losses as distressing life changes, everything we do is about growth." JVP

"No one can stop you doing anything, the choices you make are yours, and the consequences will be yours as well." ST

I figure when you're down or times are tough, make a list of all the blessings in your life; what you're grateful for.  Look at it; reflect on it.  

Remember, life is short and shit happens.  Be well.

Janeen  

Happy Birthday

Happy 43rd Birthday to me.  Jack and I got another bug last week so we haven't felt great but tonight we had a lovely dinner with Jack's Nanni and my aunt and uncle.  

Here's a picture of my beautiful flowers.

May 19, 2012: Mommy and Jack

I think my immune system is still down because I seem to be getting sick quite frequently and it's driving me crazy.  Just when I get back to the gym and try strength training, I get another cold or sore throat or whatever is going around.  So, I lie low and start over again when I can.  Some good news is, I think I'm getting some feeling back in my abdominal area, especially around my "new" belly button.  Deep inside I can feel the scar tissue, which are almond size bits and pieces.  I may try acupuncture again or some other therapies to try and smooth it out.  Any quick or swift move still takes my breath away but I am able to carry Jack once again if he wants me to hold him and I have so missed this.

I had decided to take a hiatus from doctor appointments and now we are already mid-May and I have to get back into it.  I meet with my gynecologist next week to get a plan in action.  I also have to schedule my next EUS (Esophageal ultrasound) to check my pancreas.  Happy to report another colonoscopy isn't necessary until next year.  My breast surgeon gave me an 8 week break until the last part of my reconstruction which is the tattoos and it's time, but I'm not in any hurry for this right now.  

I'm 8 months from my first surgery and 3 months from my second.  My body continues to change.  I'm not sure sure how to feel since body image isn't one of my strong suits.  I dress in my old clothes that now hang on me.  I feel rather homely.  Mom called me 'Poor Pitiful Pearl' and gave me some shopping money to go buy some new clothes and stop bitching about it.  I swear I don't even know where to start.  I did finally get two new bras, yeah me!  That was uncomfortable getting measured and all, but it had to be done.  I'm still just so uncomfortable with how I feel and how I look.  It's a process.  I will not let this get me down but nobody can rush me into any of this.  I just have to go at my own pace.  Taurus; we hate change!

So this is my update.....I can't believe we have almost 4000 hits here.  I've met a few more women via twitter that are in my same shoes.  I hope we can continue to support one another and educate each other about this #BRCA2 gene.  When people say that BRCA patients choose to have these surgeries, I ask you, is it really elective surgery if cancer is the alternative?  Surgery is the only cancer prevention we have.  I wish more people could understand this and not be offended by words like, "previvor."  I am a changed woman; we all are.  Bless all my BRCA sisters out there.

Sincerely,  Janeen

    

HAPPY MOTHER'S DAY

HELLO MOM'S!

I just wanted to extend a Mother's Day greeting to all of you mom's out there who are following our blog.  With all of our trials and tribulations we ladies can stand tall and give ourselves a pat on the back for the incredible work we do.  A woman's day is never done, but I hope this Sunday each and everyone of you will take a moment for yourself and give yourself credit for doing the hardest job in the world, that being a MOM.  It is also the most gratifying job but we often lose ourselves in the care giving of others. If you are one of the mom's who has undergone multiple surgeries this year ( or even one ) be patient, the old you will resurface again.  You simply need more time and our prayers and thoughts are still with you.  Remember how blessed you are while eating the burnt pancakes, soggy cereal and cold coffee on Sunday morning.  All these efforts come from a loving place so put a smile on your pretty little face and know we are all celebrating in the same way with you.

God Bless Us All!
Barb ( Janeen's Mom )

Amazing

It has been quite a while since I have posted anything.  But there is something I would like to share with all of our followers.  When I started this blog I had no idea how it would do nor did I know where it would go.  My original idea was to let Janeen, along with family and friends follow us along a path that was both foreign and very scary.  I have said before it ended up being very cathartic for me and equally as cathartic for Janeen once she was told the blog existed.  I had always hoped Janeen would eventually meet through this blog, other women who were facing the same decisions that Janeen was facing and women who shared her anger along with her fears.  This has happened and continues to happen on somewhat of a regular basis.  When she shares the stories of these women we have never met and probably never will meet, we cry and immediately I say a prayer for that person.  These women are all in different phases of their journey but they are able to tell each other how they handled their mastectomy's or maybe one gal opted to have her hysterectomy first then remove her breasts.  No matter what the order of the surgeries each one has chosen, there is a common denominator and that is testing positive for BRCA 2.  I cannot stress enough how common this scenario is and still there are so many of you out there have never ever heard of this gene.  I will never understand why more doctors do not test for this genetic component and why insurance companies refuse to pay for this simple blood test that is outrageously expensive.  This is so wrong on so many levels and my heart goes out to each and everyone who has had to make very difficult decisions, in order to save their lives while still having to fight the insurance companies for compensation at the same time.  Unless their are drastic changes in the medical arena, women will just sit and wait for cancer to attack and ultimately kill them.  There is a lady in Georgia, she has breast cancer and she has opted for a double mastectomy.  Her doctor will not do the surgery unless she is tested for BRAC 1 and BRCA 2 gene.  Her insurance will not pay for the test and she cannot afford to pay for the test.  So she just sits and waits. I pray for this woman daily.

So, to all of you ladies who have met my daughter through this blog or twitter please keep in touch.  You are helping each other more than you probably realize at this moment and the beauty of these relationships that are forming you all know exactly how each one of you feels and that has to be comforting for all of you.  Janeen's next surgery will be the hysterectomy but no date has been set as of this posting.  She is once again due to have her pancreas and other organs screened and check ups are coming up again soon.  I realize all of you are so sick of doctor's offices but hang in there ladies one day the road you now travel will be a distant memory.

God bless you all and your families and this mom is so happy you have found each other.

Love,
Barb ( Janeen's Mom :)