Valentine's Day

Holy cow, can't believe it's already February, well almost March.  Where does the time go?  Well, this Valentine's Day was spent with family at Benihana as Jack enjoys the chefs antics.  That morning Jack had a surprise for me hidden under his bed at Nanni's house.  We went over and he crawled under there to retrieve my gift.  It was a beautiful Roberto Coin bracelet with a a single heart.  I love it and as always he gets help from Nanni.  They make a great shopping team.

Again, I cannot believe it's been a year since my second surgery.  Last year on Valentine's day I was finishing my reconstruction.  Another long day for mom...it was 8 hours.  There are quite a lot of foggy memories for me, but I do remember waking up from both surgeries and feeling like hell.  No hospital stay but I did go to Serenity House again.  I journal everyday and I can see just where I was a year ago to the day and I read how I was feeling, what I was thinking.....it just sucked!  My mom cleaning up after me, washing me (I'll spare you the details but it was gross).  So embarrassing but there is nobody I would rather have do those things.  So needless to say, we both agreed this year was much better.

February was also my check up month.  I found out when I called to reschedule my appointment that my doctor had sold his practice and that another doctor would now be seeing me.  Apparently about 1/3 of his patients did not receive notification of this change so while I do not take it personally, it threw me for a loop and I was very anxious.  I had a plan with my OBGYN and we were on the same page....Now I need to go through my history with this new doctor who doesn't know me or my situation at all and do it all in the 5-10 minutes that has been allocated for me.  As usual I did my CA-125 the week before (this is a blood test that can detect ovarian cancer....it also can throw off false positives so I am always nervous for this).  I had my regular scheduled ultrasound with my usual technician; for this I was thrilled, a familiar face.  Once again, she said my ovaries look good.  At my age and having the BRCA2 gene, they want my ovaries to just be "chillin."  Sherri told me that my new doctor didn't have the best bedside manner, that he was very direct, to the point and was all business.  Now I had already done some homework and called as many doctors I knew for suggestions and most told me to stay put, but did offer other doctors if I decided I needed to change.  So in my anxiety ridden day, after my ultrasound, I met my new doctor........and I like him.  THANK GOD!  He is direct and at one point I felt like I was taking a quiz.  I started to sweat.  He used so much medical jargon I just had to sit back and tell him I didn't understand what he was saying.  I felt so stupid.  This was after all my case we were discussing.  Anyway, I did get more than 10 minutes of his time.  He checked out my scars, we discussed more monitoring because I DO NOT want to go ahead with an oophorectomy just yet (removal of my tubes and ovaries).  I am so scared.  Not of the procedure, but what it will do to me, instant.....menopause.  It's like I choke on that word.  I associate it with instant old lady.  I feel like I've been through enough, right now.  I have to wait.  I have to stay monitored and I need to make sure this doctor is on board.  Which he is but as a BRCA patient he may ask for more monitoring and I'm fine with this.  I've already felt like a lamb to the slaughter.  With all I've been through so far,  I am completely spooked of more procedures but I know it will be necessary.  I just cannot be pushed and yet I hope I'm making the right decision.  This is my life.

As for my therapy, I think it has been very beneficial for me.  I have been able to unload and be very honest and shed many, many tears.  I've said it before this experience has forever changed me, I hope for the better.  Trying to sort it all out.  Declutter my mind, declutter my space, declutter my life.  This may even include the people I choose to surround myself with too.  It's been a painful road but I will continue.  The other day I read this, "The fog will clear when the wind blows and the sun will rise to mark a new day.  We will not only survive, but we will thrive."    

With the many other cancers I need to watch out for I have started back with my dermatologist.  We already did two biopsies and one was a pre-cancer so we are re-addressing this.  In all my years with this doctor I have probably had over 100 biopsies, with one melanoma and several pre-cancers so I must be diligent with this too.  The other two cancers we're watching for are pancreatic and colon.  I get more bang for my buck this time because they've decided to combine these two procedures this year.  Yeah me!!  This will be scheduled in the next few months.  Who doesn't like being scoped from both ends?

I don't like any of this.  I'm still getting used to it all.  I'm trying to find my peace.  The way in which I handle all this; it's a choice.  Often times I literally have to remind myself to breath.  And no matter what, I have a little set of eyes watching my every move, so I better get it right.  I'm still so scared.

Peace Be With You All,

Janeen

Happy New Year

Happy New Year.  It's been quite awhile since my last post because frankly I didn't want to write.  I feel so vulnerable about this process; the writing.  I have been so caught up in what I think everybody else thinks of my situation.  I was trying so desperately to get back to "normal" and put so much pressure on myself that last August, September and October were just horrible months.  In August I almost killed myself taking every exercise class I could only to constantly have my body reject all that I was doing.  I just ended up more angry, sad, frustrated.....Again, the doctor said, "You need a year."  And once again I heard, "You'll be back to yourself in a year."  Big difference.  In September, my "anniversary" month, I managed to fuck that up as well.  My mom gave me my new car, which I love, and in my feelings of unworthiness, I had already put her through so much and you don't even want to know the final cost, a new car was not on my radar.  After September I just felt like throwing in the towel.  I was embarrassed to say that I was in a severe depression.  I was and still am scared for my future.  My anger, fears, sadness were all displaced.  I've been walking around for a year thinking I was holding it all together.  Scared what others were whispering behind my back...."Why is she acting like this, she doesn't have cancer?"  So far, I DO NOT have cancer but I've had to do what many cancer patients have had to do and I still have BRCA.  No diet or magic pill, chemo or radiation gets rid of this.  My chances of getting many other cancers simply increases with age and last time I checked, I'm not getting any younger.  This has changed me and I hate that.  The month of October came and with it an ugly fight with my mom and that was the catalyst.  I wasn't fooling anybody, especially my mom.  The physical pain was gone but emotionally I was a mess.  Call it divine intervention, but about a week or so after this incident I decided to change my hair color.  I do things like this when I'm in crisis mode.  It's a quick change up for me.  Not sure why I do this, but I do.  So sitting there crying waiting for my appointment, the woman before me was a friend of a friend.  A doctor.  A woman I spoke to before all my surgeries just to get another opinion, as a doctor but also as a friend.  She asked how I was doing and I just sobbed.  She immediately said she would email me once she got back to her office with referrals for a therapist.  I swear I had tried to do this on my own but I didn't know who to go to.  I didn't know what I needed.  I didn't know who to reach out to.  She suggested a therapist who works with cancer patients and chronically ill people.  It ended up being a wonderful fit and I'm so happy to have a place to go.  Someone to talk to.  A safe place to just cry.  I'm so mad at myself that I am so stubborn it took such a painful fight with my mom to have this come to fruition.   

A BRCA diagnosis cannot help but make a person a hypochondriac.  There's a group of other woman, BRCA sisters, and we all follow each other on twitter.  The paranoia is sometimes funny but it's nice to know there are people, albeit strangers, that get me.  It's something that I cannot escape.  Whatever I'm doing I try to embrace because you never know.  None of us do but my chances are just greater.  Until I can wrap my brain around this, until I can talk about my experience without crying, until I can calm my nerves and anxieties, I'm not sure I'm the best person to be around.  I have probably alienated people because I've heard, they don't know what to say to me.  But their silence, and I mean my friends, has been deafening to me.  I know part of my sadness has been this very issue.  I certainly didn't want anyone here when I was first recovering.  It wasn't pretty and I was not prepared for the pain.  You don't really know what it feels like to have a bus hit you until one does.  OK, so it wasn't a bus but you know what I mean.  I wanted my friends to care and I didn't want to have to ask for it.  I've read so many blogs about woman that get cancer and they never hear from their friends again.  It's like everything and everyone changes.  I have been fighting this for one year.  I see all relationships as very different now.  We all can take so much for granted.  A phone message, a text, an email or e-card takes almost no time at all to let someone know you're thinking of them.  When you're in my shoes, the last thing I wanted to do was socialize, but hearing from my friends often times made a very difficult day a little bit better.  Even my mom's friends and my twitter friends made a difference and I thank you all.  You know just saying the words, cancer, BRCA, mastectomy, hysterectomy......sometimes they have to be spoken.  If you don't know what to say....say something.  It's a very daunting experience.  It has been quite lonely.  I have been fighting with myself, my faith and the one that continues to walk by my side, my mom.  The pain I feel now is all self imposed and it is what I have buried for a year.  I knew this was going to be so emotional, especially because I'm a single parent to Jack and the thought of leaving him just hurts me to my core.  I'm trying to put this all in it's proper place so I do not manifest cancer in another area.  I think if you brain fuck yourself enough, things can happen.  I cannot allow this!!!  I do believe I will accept this.  I do see light at the end of this tunnel now.  I do believe I will have a beautiful and full life with my son.  And I have to tell myself this everyday until it becomes natural.  I have to believe.........my sadness will wane and acceptance will come.

In 2012, I had my second surgery, also quite painful.  I lost my cousin to a massive heart attack.  I reconnected with my dad.  I lost my beloved pug Pearl  I shared a beautiful family vacation to Hawaii with extended family that just a few years ago I had not spoken to in over 15 years.  I shared an amazing "Kipis" with Jack who's 3 and the love of my life.  And welcomed this new year watching my son and mom, my beloveds, wearing hats and beads, blowing horns and having a sleep over in is room.   Total joy!!!

I want so much for myself this year.  I want to be a better friend, a better daughter and sister.  A better mother to Jack.  I want to be open and honest with loved ones and not be scared of the outcome.  I want to take batter care of myself which includes staying proactive in my health care.  (I have already received letters from my doctors that monitoring starts up again...not going to lie, my stomach is already in knots).  I want to learn to accept what I have been dealt and believe God has an amazing plan for me and my little family.  James Van Praagh said, "We are all here to learn to love, and the first lesson is learning love of self.  Without love of self, we cannot know how to love others."  If I go back to my first posts I often wrote about my lessons, acceptance, etc.....Well, it takes a lot of work to fight life's lessons.  Suppose things can go much smoother if I just concede.

Last, I don't say this enough, but, MOM.....I LOVE YOU!!!!

Happy 2013,  I wish you all the very best.  To my BRCA gals, hang in there.  It's a tough road, it sucks, but being proactive is saving your life!

XO, Janeen  

  

 

December 27, 2012

Janeen and I hope you all had a very happy and healthy Christmas.  It has been a while since a posting has been entered on this blog but the good news is the ladies that follow this blog and have the same BRCA ! or 2 gene as Janeen, interact on Twitter.  They share their fears and their successes  after a surgery and some of the conversations Janeen shares with me are quite comical.  It really has helped Janeen to be able to talk to women who have been where she has been.  So all is good, but with a new year soon approaching, Janeen will be faced again with undergoing additional testing to make sure that that ugly C word is no where around. She is seeing a therapist who is helping her live with these fears and I am forever grateful for this woman.  Janeen has a place to go and say whatever she wants to say, needs to say, doesn't want to say etc. without judgement or anyone telling her she shouldn't be feeling the way she feels.  And that includes me.  I have to own what's mine and I have no source of reference to tell Janeen what she should or shouldn't be feeling.  I was just seeing a very unhappy daughter and I wanted her to get some help and she did.  What a gift Janeen has given me.

Our Hawaii trip last month was a huge success.  It was wonderful getting away and we all enjoyed doing our own thing and playing with Jack.  He loved it and a change of scenery did us all a world of good.  Rejuvenation is a wonderful experience and was long over due for us all. 

Looking forward to a spectacular New Year.  May 2013 be a year we all will be able to cherish.  Through kindness towards one another daily you know we could change the world!


                                                  PEACE BE WITH YOU ALL!
Ciao, Barb

ALOHA !

HAPPY THANKSGIVING to all our followers.  The number of people reading this blog continues to grow and I am pleased there are some women out there who have contacted Janeen and continue to contact Janeen, as they are having to make the same daunting decisions Janeen made one year ago.

I haven't written in such a long time as I felt Janeen had the real story to tell.  But as I have said before, the entire family, as well as friends. are affected by tragic events.  I am going to tell you, this has been a really rough road for Janeen and me.  So rough, that I could no longer have her work for me.  We, simply could not get on the same page, and I refused to let her drag me down to the place she had found for herself. 

Her sadness is overwhelming.  Losing Pearl didn't help matters.  She has become so fearful of life she just doesn't want to do much of anything.  She lives with so many " what if." she no longer could just stay in the moment.  She drove me crazy and one day I blew.  I hurt her beyond words and that was never my intent but things needed to change.  And they did!  Janeen found a doctor that can help her with her fears and Janeen has a safe place to go with someone who is trained to deal with the issues Janeen is still struggling with.  This doctor is a God send and I am so grateful for the work Janeen has started with her.  This doctor has seen many many Janeen's and she is able to move Janeen on to a more happy and fulfilling existence.

So, I have so much to be thankful for this Thanksgiving.  Many many blessings come my way every day even during the rough times.  Tomorrow morning bright and early (5:30 am) my little family is heading for MAUI.  Yep, Jack has invited all his teachers, his coach, his swim teacher and everyone else who will listen to him.  No children just big people. lol   I'm confident this will be a trip we all will remember for a long time.  We all need a change of scenery.

Thanksgiving love is sent your way,
Barb

My Baby Girl

August 10, 2002 - October 27, 2012

 

We lost our baby girl Pearl this morning.  I had my baby for 10 years.  In those years she was plagued with colitis and Addison's disease.  She was not feeling well last night as she had her required rabies shot earlier that day.  She had thrown up her dinner, but with her sensitive stomach and her Addison's this wasn't unusual.  Sometimes she just needs a day or so to get back to herself.  This morning she still was not herself.  I held her for about an hour and when I went to put her down she could not stand.  Mom picked us up and we all took Pearl to her doctor.  I thought my baby was dehydrated and needed an IV.  Within 10 minutes of being there my Pearl went into cadiac arrest and after several attempts to save her, she passed on.  I held my little girl for as long as I could.  I am still in shock that I did not bring her home.  My heart is aching right now.

 

I lost my Bella in 2006 to cancer.  I knew she was going to die but when that time came it was still so difficult.  With my Pearl, there was no warning.  I mean I knew she had this disease but I was so diligent with her care that I never expected this....not today.  Every month we went in to get her DOCP shot and people from her doctor's office, from the billing department, would ask they be notified when Pearl was coming in so they could see her.  Everyone loved her and her doctor referred to her as a "Rock Star."  Many tears are being shed tonight for my baby.

 

I still have my Sophie and she is comforting me tonight as Mom took Jack today.  He knows Pearl is in heaven with Bella.  I'm sure he'll have more questions when he sees that Pearl is not coming home. 

 

I am so so sad tonight.  My heart is broken for my little Pearly.  I hope she knows how much she was loved and how much love she gave to so many. 

 

Pearl, you are healthy now.  No more medicine, no more shots, no more pain.  You are missed my sweet.  I will hold you in my heart forever.  I Love You!

 

      

Grievence Letter To My Insurance Company

During this past year although I got pre-authorization for my September surgery, my insurance company felt a micro-surgeon was not needed to for my procedure, which is ridiculous.  They were also standing on some other petty issues to NOT pay the proper precentage allotted to me as per my contract with Anthem.  Although my doctors were paid up front, in cash, they were assisting me in my efforts for payment.  I believe this is why so many doctors no longer take insurance.  Battling the insurance companies is tiring and tedious.  I was asked to write a patient impact letter.  It took me quite awhile to do this, but here it is.  I'm happy to say that after another 30-day review, they have seen the errors of their ways.  They are reversing their initial findings and I'm hoping to receive payments very soon.  This was about money and principle.  It is so unfair insurance companies run patients ragged.  It's a constant fight.  But I think I won.  Anybody needing to write to their insurance company, please feel free to use my letter as an example.  For me, this is one big door I can now close.     

 

LETTER To ANTHEM on 8/21/12

 

ATTN: Member Grievance

             Member Appeals Department- 2nd Level Independent Review

Date Of Service: September 12, 2011

Procedure: Bilateral Prophylactic Mastectomy with DIEP Flap

To Whom It May Concern,

I am a 43 year old single mother to a 3 year old boy.  I found out I was BRCA2 positive in November 2010 when my son was just 17 months old.  There is a strong family history of breast cancer on both sides of my family but my BRCA gene mutation comes from my paternal side. 

At 40 years old I became the sole parent to my newborn son.  Although my doctors were aware of my family cancer history it was after my son was born, my new OBGYN suggested I take the simple blood test for the BRCA gene.   I didn’t even know there was such a gene let alone a test.  I was still in a state of bliss being a new mom and I didn’t really want to mess with that, so I waited quite awhile before I agreed to take the test.  I NEVER thought how my life and my son’s life would be tremendously impacted by the results.  I was POSITIVE for the breast and ovarian cancer gene.

All of a sudden I was sitting with a genetic counselor and she’s handing me information for a mastectomy and hysterectomy and all I wanted to do was scream, “I don’t have cancer.”  Not yet anyway.   I met with my internist in Los Angeles, although I live an hour south in Orange County, and he immediately had me meet with his colleagues and specialists.  I met with Dr. Jay Orringer M.D., F.A.C.S. and Dr. Jay Granzow M.D., M.P.H., both highly skilled Board Certified Plastic Surgeons and highly trained in advanced methods of breast reconstruction.   I had a crash course in prophylactic mastectomy and immediate reconstruction using implants or the much more involved DIEP flap.

Going into this I knew I would need a “team” of doctors.  As much as I appreciated the expedience with which I was able to meet with the LA doctors, I live an hour away and knew I had to explore other options.  I met with 13 or so doctors total.  This included an oncologist, a cardiologist, gastroenterologist, and several other surgeons and plastic surgeons.  Not only was it important for me to like all the doctors involved, I had to make sure they too could work with each other.  I met with doctors from Hoag Hospital as well as St. Joseph’s Hospital, both in Orange County.  Over and over again I was told I was a great candidate for the DIEP flap but no surgeons I met with were skilled in the specialized DIEP procedure (19364-22-62).  As you know it is a very delicate and specialized surgery that requires microsurgical transplant of tissue and blood vessels.  After much thought and consideration to my personal situation, I chose to have a bilateral prophylactic mastectomy with DIEP flap with the team of LA doctors that I had consulted with.  I believe I absolutely did my homework and tirelessly consulted with many doctors, thus choosing my LA Team.  This does not mean I was emotionally ready though.  My surgery was originally scheduled for February 2011 and I postponed it to September 12, 2011. 

As a woman, making the decision to remove otherwise healthy tissue is very daunting.  I was absolutely going ahead with this procedure, as it is my right and choice to do so for preventative reasons.  If I were to get breast cancer and perhaps die who would raise my son?  There is no father side of the family for him to go to.  I made the best choice for me and my son.  I wanted my son to be young enough that he would have no memory of this nightmare I was living.  I also wanted to choose the best procedure that would NOT have me in and out of operating rooms over the course of my life, like repeatedly fixing implants due to leaking or encapsulation, or other issues that may arise.  Choosing mastectomy with DIEP flap was a very emotional decision to for me.  I would have to be in the hands of the most skilled surgeons who perform this procedure thousands of times.  

My surgery on September 12, 2011 was roughly 18 and ½ hours.  Dr. Robert Cole was my surgeon who performed the mastectomy (about 3-4 hours) and the rest of that day and night Dr. Orringer AND Dr. Granzow worked simultaneously on me as co-surgeons.  There was no assistant.  It was an emotionally draining day for my family and exhausting for these two highly qualified surgeons.  This is how the surgery was PRE-AUTHORIZED and I expect it to be paid accordingly.  I understand that I went out of network and my contract with Anthem clearly states the percentages paid when doing so.  Each doctor was paid out of pocket $34,000.  Each doctor billed $32,400.  I have received back $11,329.79 total for Dr. Orringer’s services.  I expect the same for Dr. Granzow.  Thus far, I have received just over $2000 for Dr. Granzow and that is mostly from doctor visits and other procedures he required from me.  This is my grievance as I am almost at my one year anniversary and there has been inadequate funds refunded.  In all actuality it is my opinion that this complex surgery should have been reimbursed at a much higher rate, even 100% reimbursement should be allowed since there was not an in-network doctor(s) in my area.  St. John’s and my anesthesiologist WERE in network facility.  Does Anthem take in consideration that it was necessary for me to go out of network for my surgeons and yet I DID utilize my network as much as possible?  Much more should be paid as the DIEP flap (19364-22-62) requires TWO microsurgical co-surgeons.  Because I could not find this in my home town, it was necessary to drive one hour to LA where Dr. Orringer AND Dr. Granzow ended up being my surgeons.  Going out of network is really not the issue.  For me, there was no other option.  Might I add, when one is BRCA positive it does not go away with a mastectomy or hysterectomy, which I have yet to do.  I have to be constantly monitored for the rest of my life as I am susceptible to many other cancers.  For this, I have continued with other surgeries and procedures.  I have continued with ultrasounds and CA-125 every 6 months, yearly colonoscopies and yearly esophageal ultrasound to monitor my pancreas.  This takes an emotional toll on me and my family, especially when I cannot fully be available to my son, as I am his primary and sole caregiver.  All of these medical issues and procedures are draining.  I have done my “due diligence” in every aspect of this journey.  I have done everything that has been asked of me by each and every doctor, as well as you, my insurance company.  I pay my premiums, my bills are paid in full and I get pre-authorization.  One of my doctors told me that I am her most proactive patient.  So why am I being penalized?  It’s either do this or get cancer.  Which one do you want to pay for?  What would you do?

I demand an Independent Board Certified Plastic and Reconstructive micro-surgeon review this appeal.  It is my opinion that a qualified person(s) are the only one’s that will have a greater understanding of the events on September 12, 2011.  Please review my records and see for yourself which doctors I met with, what procedures and surgeries I have had done to date, what has been reimbursed and what is still pending.  You will also find letters from my surgeons written on my behalf.  I look forward to hearing back from you.

Sincerely,

 

Janeen Straub

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.