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.



   

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 :)

Still Coming Along

Well we've recovered from fevers and pink eye, but I still have a horrific, drive you crazy dry cough.  Going on two weeks now.  Enough already.  Only have been to the gym twice.  Tried to start stretching and I swear I feel like my side scars are going to completely split open.  I'm 7 months from my first surgery and the tightness of my skin is the same.....tight!  And still numb.  I don't think I will ever get used to how my skin feels.  It's just uncomfortable.  I'm still not able to fully play with Jack.  I cannot run after him, do physical activities.  I'm just not at 100% but I've sort of resigned myself to the fact that bitching about it and being pissed off is clearly getting me nowhere.  This is clearly a marathon, not a race.

A few things have happened in the last few weeks that have weighed heavy on me.  The first, I cannot believe I'm even mentioning but a neighbor that has caused my mom much heartache as well as a rather expensive lawsuit passed away from cardiac arrest.  When I found out I was surprised that I actually felt compassion because this man was really an SOB.  Death, no matter who, is devastating.  He was still a father and husband and the family was mourning.  But at the same time there was a sense of relief.  The constant BS from this man is over.  What came to mind though was the fact that even though he was a pain in the ass neighbor and incredibly disrespectful, especially to women, is that God had already forgiven him and he was one of God's children.  Who knows if this is true, but I've read that when we die we have a life review and we feel all the pain that we have dished out to others.  What was his life review like?

With that being said, I want to think I treat others respectfully but I know that my behavior has been less than stellar.  My recent experiences are no excuse but I have been really, really angry and I cannot handle stupid...stupid people and stupid, insensitive comments.  I find it very difficult to turn the other cheek.  At the same time, people have reached out and I have not handled it with grace.  There is no handbook on how I would feel through all of this.  I tend to retreat then get mad when everyone's quiet.  Sometimes I laugh at myself because how can I still be mad...it's done.  I've had a bilateral mastectomy with reconstruction...it's done!  As my doctor says I'm still in it.  I don't have enough distance from all of this yet.    Anyway, this man's passing was a reminder of God's grace and to treat others the way I would like to be treated, even the stupid one's.    

Two weeks ago when Jack and I were at the walk-in for the second time within two days of each other, this time for 3 hours, we met a woman who was very taken with Mr. Jack.  With 3 hours to kill we talked a lot.  She told me about her 3 boys and pulled out her phone to show me pictures.  After about 2 hours she then told me how she lost one of her sons to a brain aneurysm.  He had a bad headache one night and she gave him Motrin and sent him to bed.  He was 27.  Clearly this woman was carrying around a great deal of guilt.  I never would have known any of this if I had just walked in and saw her sitting there at the walk-in.  Everybody has something.  I would take my situation 10x's over rather than loose my beloved son.  I don't know if it's even possible to recover from that kind of pain and anger.  She ended up taking a picture of Jack because she wanted to share with her family the little boy that reminded her of her son, that had her laughing most of the day.  So again I ask myself, what the hell am I bitching about?  God sends us angels in many forms.  Sometimes it takes a tragic story such as this to remind me, I am beyond fine.  I'm doing great.

Then Easter came and the sermon at church was about FAITH.  There are people with blind faith; there are people that are on the fence; and there are those that don't want to believe or can't believe and they want to "roll the stone back."  I have felt like I am #2, on the fence.  I started taking Jack to church a few weeks before Easter and since because I feel like it's my duty, but perhaps I'm trying to get to the blind faith.  In the church bulletin there is a group starting for parents and children called 'Caring and Sharing.' So I signed us up and we had class tonight.  For just a hour we get to engage with our children then while they tell bible stories, the parents (all mom's) went into another room to discuss what we wanted out of these classes.  I feel like I am returning to the church and I need to find my faith and grace.  I explained that my faith has been in question because of my recent experiences....they asked me to elaborate, so I did.  Then another woman spoke up.  She's 38 and is currently battling breast cancer that has spread to her liver.  She's a mother to young children and has had the same thoughts of all the what if's........She has a tumor but it is shrinking.  Again, I looked at her when she first arrived and I never would have known.  She has had a hysterectomy, which is the procedure I'm dreading and is going through cancer treatments.  She looks great by the way.  Perhaps she will end up being one of my life teachers?

Again, I believe God is placing these people right in front of me.  In fact it's almost smacking me in the face.  My feelings of disconnect from some is still there, but rather than staying closed off I have to open myself up to others that can teach me life lessons.  We all have a story.  We all have something to contribute and share.  We all have things that piss us off.  We all have God, the Light, the Creator, whatever you want to call IT, who is there, we just have to let HIM in.

In closing tonight, I wanted to share with you a few quotes from Marianne Williamson, "A Course In Miracles."

"A miracle is a shift in perception.  Prayer works miracles by shifting our thoughts from fear to love, creating a new set of probabilities.

"Thought is the level of Cause; our mortal experiences are the level of Effect.  By changing our thinking, we change our lives."

Last from James Van Praagh: "There are no good or bad experiences, only experiences that have helped your soul to grow."

Love and Gratitude, Janeen

    

Happy Easter

Just wanted to wish everyone a wonderful weekend. Jack and I have been sick with fevers, coughs and the lovely pink eye! Everyone told me, just wait until he starts school. They were right. Been lying low but he's trying to rebound for the Easter Bunny.

Have a blessed weekend,

Janeen and Jack

Life Lessons..Still Looking

My check up last week went well and I sort of "graduated" as I do not have to go back now for 8 weeks.  Apparently next is the tattooing.  But again my scars look so red and fresh that I cannot image even putting a needle to them in 8 weeks.  Not that I have an ounce of feeling, but it just looks too new, like I need more healing.  So things are shrinking but of course the right side is way down because the graft oozed it's way out.  Again, I have to keep my nipple protectors on, aka my donuts, and I will really try to be diligent for the next several months.  I did get the OK to get back to the gym.  For me this means swimming but I still haven't found a suit to accommodate the donuts and pads and I cannot have anything cling to me....so how do I do this in water?  Still working on it.  I've been sedentary for so long now any tone I thought I had is pretty much gone.  Tough to get toned; easy to get flabby.  My skin still feels quite foreign and tight and I itch like crazy, but I cannot get to the itch.  It's internal and I scratch like I'm clawing myself and I can't get it.  It's so frustrating as it can wake me up out of a sleep or can keep me up for hours.  I know, I know....time!

Regarding my blog, I continue with this for various reasons.  For friends and family to stay apprised of my progress because individual emails and calls can be tough to say the same thing over and over.  And then I see the numbers climb so individuals besides family seem to be reading this, which I do have linked with my twitter account, so perhaps I have a few strangers reading about my journey.  If you are one of these people and facing a similar challenge, I hope you can see that I am trying to remain true to myself and speak my truth.  This hasn't been easy at all but if I can do this, I would like to know you can too.  Lastly, I blog for me.  Sometimes it's like my journal.  I don't think I will ever forget this experience but I also don't want to forget the details.  When I go back and look at entries early on, it's quite emotional and cathartic for me.  I want to always remember but want to make sure this does not become a badge for me.  You know, just one more thing for me to hang my hat on.  We've all been dealt very difficult blows in life but what defines us?  Who would you be without your story of pain?  Sometimes I feel like it's all consuming for me, whether it be childhood/adolescent experiences that as a result I chose to check out from living and just existed for years.  Then I had my baby and it's like I saw things through fresh eyes once again.  Colors were brighter, smells were sweeter, sounds became melodic.  My son changed my life for the better.  Everything my mom ever said to me finally made sense.  Struggles and adversity washed away and I discoveed a newfound happiness.  Then this all hit me.  Why?  I keep saying, "what's the lesson?"  I think I know it...deep down.  For so long I wanted my doctors to play God and give me definitive time lines that cancer would appear.  I was pissed off that this was NOT my plan.  I have felt completely broken through this process but I still hold on to the notion that I am in control here.  And yet what is this blog called....Janeen's Journey As Designed By GOD.  I have no control over any of this.  How can I be so grateful and bitter at the same time?  I can't...the two do not go together.  I also feel conflicted because if I have faith then why am I still so scared?  I find weakness in "letting go."  If I let this go and just be, then I have to let everything else go.  I believe I must go through this to become the person God has intended for me to be.  Pain is pain, it's just how we each decide to deal with it.  My scars, I could really care less about, but it's certainly a daily reminder.  So I guess I will continue to blog if for nobody else, me.  And I will continue to heal both physically and emotionally.  I may have said most of this before but again, it's my reminder.

Again here are some great quotes to end on tonight:

@Oprah_World: There is a lesson in almost everything that you do, and getting the lesson is how you move forward.  It is how you enrich your spirit.

@JulieFrancella: Whatever doesn't kill you makes you stronger...but you will still have to make the effort to shift your thinking and embrace the struggle.

@JamesVanPraagh: Happy am I, healthy am I, holy am I.  Let these words sink into your mind and heart.

And so it is.......Janeen  

 

My Angels

My "glitch" was stitched back up again and another round of antibiotics.  I'll refrain from details because it's rather gross.  I cried all the way to the doctor Monday and cried most of the way home.  I was thinking of other strong women in my life.

My mom and I have both had a melanoma.  Mom had what we thought was another melanoma on the inside of her heel years ago, which obviously isn't good.  Melanoma is a beyond a horrible cancer.  I was terrified.  Mom was the calming force as she always is and so when I heard the doctor say "possible amputation" I almost passed out.  She said, "Oh I guess I forgot to tell you they mentioned that."  You can only dig out so much of the foot before you no longer have a foot.  We were blessed to have a doctor that slowed everything down and insisted her tumor be biopsied at various hospitals across the country.  Her tumor was a schwannoma which can look like a melanoma initially.  A schwannoma can grow on the nerve sheath and can strangle it, resulting in floppy foot.  Because of other health factors mom's tumor was removed and healed from the inside out.  The wound was so large a tennis ball could fit in there.  While mom still has her foot she was wheelchair bound for over 3 months and to this day still has severe foot and heal pain.  She's thrown out her Prada shoes for TOM's and flip flops.  She's in pain, I think, everyday all day.  She hides it very well.  She's not a complainer at all.  She just gets on with it; whatever "it" is.  She has survived many challenges.

Next, I have a childhood friend who was her mother's caretaker as she was dying from cancer.  In addition to this daunting task, she was continuing her education and even dated and ultimately found her husband.  Her mother was able to marry them in a beautiful and touching ceremony, but didn't live long enough to meet her grandson.  Although I believe Rosa met Gabe long before Jessica ever did.  I don't know how she handled any of this, but she did it with such grace and love.  I respect her greatly.

I have another friend and former neighbor who is currently living with her cancer; 4 years now.  She said she would not let her cancer run her life and while it has made a tremendous impact on her life, she has continued to travel, when possible, continued with her book club, walks her beloved dog, although not as far as she used to, and even exercises when she has the energy.  She looks great and we laugh because one pet peeve is when people tell you how great you look when you feel like shit!  There are days when I see her walking and I'm like damn....You would never know what she's been through.  She's living.

Another neighbor is a 4 year breast cancer survivor.  She was diagnosed when her kids were younger and she found great comfort with her beloved dog Leo who is no longer here; Leo is now at Rainbow Bridge.  Mom would leave a little something at her door or send a random card to let her know she was thinking and prayer for her and her family.  Karin would call to say thank you and you could hear how much pain she was in on any particular day from a chemo treatment.  She lost her hair but still looked beautiful.  I remember one night when us three girls went bowling and just had girl talk...no cancer.

After I got home from the hospital in September my aunt, also a breast cancer survivor, had her friend and manicurist come over to give me a mani and pedi.  This woman survived a brain aneurysm.  Something she should NOT have survived.  She had brain surgery.  She told me her story.  She held my hand and prayed with me.  She says she's not sure why she survived.  But it's clear...she survived so she could help others.  Not only making woman with cancer is the hospital or hospice to look and feel beautiful with some TLC of a manicure and pedicure, but to pray and offer words of wisdom and hope.

So, Mom, Jessica, Bonnie, Karin and Rae.....all of my angels in disguise, I think of you all more than you could possibly know.  I pull from your strength and when I think of your stories, I feel that mine pales in comparison.  I want to run around and enjoy my son and watch him grow.  I want to laugh again so hard that my stomach hurts.  I want to have enough distance that my bitterness simply fades away.  God puts angels in our path everyday.....thank you my angels.

With Gratitude, Janeen

Small Glitch

Well, I'll be at 4 weeks this Tuesday. I had a routine appointment with Dr. Orringer for Thursday but got rescheduled to this Monday which I am so thankful for now as I have had a situation occur tonight with the right breast/nipple. Don't think the graft is holding. I called him today and he's in San Diego, but told me he'd see me tomorrow Sunday if need be. He gave me instructions as to what to do....mom came over and helped me. I'll give more details later when I figure out exactly what happened and what will be needed to fix this. The right side was always the side that wasn't healing as well as the left, but tonight.....again, infection and rejection are things to worry about. It's like my body may be trying to expel the graft.

I couldn't sleep one night and read many other BRCA blogs and there was a woman who chose her mastectomy with reconstruction using implants. She got an immediate infection, was back in surgery. Had 3 more infections and went 9 months without breasts. This was back in 2010 and sad I don't know the eventual outcome.

None of these decisions are easy. Of course my mind goes to the extreme. What has to be done now? I'm frustrated. I took my medicine as prescribed but there wasn't a pill for bitchy. I just don't think I'm as strong as you all think I am. This last month has not been the most painful but I have about one nerve left. Could it all be worse, absolutely. I try to keep this in mind. I am really disappointed tonight. When is it enough?

J

Two Weeks

So I'm just 2 weeks and a day from this second surgery; some days fly by, others go on forever.  My energy level is still not where I want it to be, but what can I do?  The week I got home as I said before Jack was sick so mom took him to her house.  So perhaps this is TMI, but I was home feeling pretty crappy, then I got my period, then I caught Jack's bug, so needless to say I have been rather bitchy.  As mom says, "is it time for your medication yet?"

This garment I have to wear is uncomfortable, so it feels nice to peel it off once in awhile, but then my body does start to hurt and it feels better to put it all back on.  Jack thinks my boobs currently look "gross." But he helps me out of bed because he says, "mommy has new boobies." and he wants to help me.  It's so sweet.  I just wonder if he's telling the kids at preschool about all this?

I know I'm still swollen and it'll just take time (not my strong suit), but I would be lying if I said the right side doesn't have me still a bit worried.  I'm hoping the black I see is just dry blood at this point.  I know this is graphic but I just feel like they are going to pop off like bottle caps.  There is zero feeling and stitches are everywhere so as much as I'd like to clean them up, I know I don't dare touch.

With the second round of antibiotics, the Z-Pack and the other meds I was on, I'm sure this contributed to my stomach being upset and now whatever bug I was fighting is now a head cold.  The doctor said I could start walking on a treadmill this week.  Oh yeah!  Get right on that!  Not that I'll be training for any marathon, but perhaps it would help.

I see Dr. Orringer again this Friday....perhaps more stitches coming out????  Maybe just making sure my right nipple doesn't fall off.  Just kidding!  Jack and I sat on my bed tonight and he helped me cut out my new "donuts."  I can barely cut a circle, so mine don't look great but I found a pair of those padded inserts from an old sports bra.....so I place those over the make-shift donuts and now with a shirt on, you cannot tell what's going on underneath.  I feel so much better that it's not so obvious anymore.  Sometimes it's just those little things that make it better.

I've been taking pictures along the way.  I believe this WILL be a distant memory for me someday, so I want this all documented, which is anther reason for the blog as well.  I do go back and read what I have written; what others have contributed.......it's been quite a journey.  I hope to one day have enough distance from this that I can honestly see every single blessing.  I KNOW they are there, but I have these other emotions that seem to creep in and linger.  They take hold and it's difficult to shake off.

BUT, I have my little man that keeps me laughing......

He thought this was a good idea last night..... 

to look like mommy! 

Love, Janeen

Check Up

I had my first post op appointment today with Dr. Orringer. The one downside to having LA doctors is driving back and forth for appointments afterwards. Very uncomfortable. So I got most of my stitches removed and where I had developed hard scar tissue is now duey soft. I am still fairly numb but I did feel some of the stitch removal so I guess that's a good sign. But the major reveal today.....nipples. It was startling to say the least but he did warn me. Dr. O did his happy dance when he revealed my left side, nice and pink. The right....well, he said it looks good. The biggest worries are infection and tissue dying and I thought maybe the right one was dying because parts are black. He said I am past the dying stage and it does have a good blood supply so not to worry, but I am. Again, they are big but they will shrink. He is beyond pleased with how I look because he's done this thousands of times and knows what the final outcome will look like. I have no frame of reference so I can't quite do any happy dance yet. I always feel like my lack of enthusiasm may be mistaken for being unappreciative and this couldn't be further from the truth. I am so glad my doctor understands this. But he had a grin from ear to ear and is just so happy. My right breast that had to be reduced wasn't closed so he removed the stitches and put in new ones. Again he said I was numb and wouldn't feel it, but I did, so again, maybe a good sign that feeling is coming back. I have a little concern for new stitches as I have had another scar once from a basel cell that refused to close that took 3 attempts. But I will try to stay optimistic. Mom and I were surprised at the lack of black and blue those first days but I certainly have many colors going on now. I do look like I've been used as a punching bag. I got new donuts cut out that I have to put into my bra now and here's a kicker....for up to one year. Yup, we don't want my new babies to flatten. I am very self conscious as I thought everyone was looking right at my boobs today. I'll probably feel this way for awhile until I can get to the point where I say "screw it.". I know why they are there.

Anyway the 405 was hell today so I'm glad to be home. My sitter ran Jacks ass off today so I have a tired baby and I am exhausted. Can't wait to change into my other wet suit, fix my new bra and crawl into bed where I can only pull the sheets up to my waist. This is going to take some getting used to. I'm back on meds to prevent infection from my new stitches...and taking Z pack because I feel like crap. I got Jacks bug as does mom. as I seem to finish most posts, this too shall pass.

Exhausting day...good night.

Janeen, Jack and two tired puggies. Thank God!

P.S. Thank You

OK, I can't count...it's only been 4 days.  I ended my last post abruptly since mom and Jack were coming to pick me up.  Cabin fever has set in.   Jack still has a fever but I'm dying to see him.  So we went for a little drive and Jack ended up throwing up in the backseat just now.  So I was immediately dropped off to my house.  I hobbled in to feed the dogs and get back to bed.  Mom is on her way home to clean up quite a mess.

How do I ever begin to say thank you for all that mom has done and continues to do?  Can we just get a break somewhere?  Having mom with Jack is most important to me right now.  I'll be fine.

I go through these trials and tribulations and think God sure is testing my faith and yet I know HE is doing the most for us all right now.  I believe I know unconditional love.  When I'm hurting and I'm so irritated, I must remember this.

THANK YOU MOM FOR TAKING SUCH AMAZING CARE OF ME & JACK!! WE LOVE YOU!

xo, janeen & jack

5 Days Post Op

Mom always said if you have nothing nice to say, then don't say anything at all.  Well, I'm pretty miserable but here's an update.  The pain I felt in September after the mastectomy was the worst I have ever been through.  With the this surgery, not so much pain but I am incredibly uncomfortable and I know it's made me nasty to be around.  I feel like my body has been used as a punching bag.  Mom and I are both rather shocked at the very limited bruising right now but even if her hand grazes me, it kills.

Let me back up a bit....The night before my surgery I wrote that Dr. Orringer was not going to reopen my abdominal scar and that my new nipples would be the size of his thumb (I meant the tip of his thumb) to allow for shrinkage.  The morning of my surgery as Dr. O was scribbling all over me, he decided he was going to go after the built up scars tissue.  This included my abdomen as well as hardness that had developed around the left pectoral area.  With regards to my new nipples, I received another state of the art procedure using pig intestines rather than using an allograft.  This procedure has been available for awhile now but the company wants Dr. O to start using it in his reconstructions, so this is what I got.

We started promptly at 8 am with Dr. O and his tech "Lizard" dissecting just about every inch of me as I stand there in my birthday suit.  My body looked like a road map.  My IV was started and away I went...again having no real memory of that morning.  The surgery was 8 hours and when I woke up all I could think of was now I had to get dressed, get into a car and back to the recovery house...no hospital stay this time.  I had no idea that I had minimal stitches so everytime I moved or got up, I was drenched in blood and fluid.  I was a mess.  We all got back to Serenity I think after 5pm.  They kept in my IV for hydration until I checked out the following day.  I was so aggravated and pissy when we got back.  I could feel that I was wet but didn't know why.  Again, I was oozing fluid for 24 hours.  I was trying to use the bathroom, fluid dripping all down my backside, wheeling around my IV pole and people standing there watching me.  I wanted to scream, "get the f- out of here, give me some privacy."  Everytime I got up my gown had to get changed and my bed was changed.   My Mom would come in and wipe me down with a warm wash cloth.  Oh I forgot to add, at this time and currently I'm in a get-up that looks very much like a wet suit.  I also have on an industrial strength bra with holes cut out to accommodate the newly designed "donuts" that surround my new nipples so that they do not flatten.

So my surgery included, a right breast reduction to match the left, removal of scar tissue both from my abdomen and chest area, liposuction to flatten out the bulges from the previous reconstruction using my tissue as a transplant, and new nipples.  The liopsuction was aggressive in some areas and that's what is so incredibly uncomfortable right now.  With my other surgery I could at least get in and out of bed and do some things for myself, but because of the attire I must wear, I am at the mercy of others to help...and by others I mean MOM because there is no way in hell anyone else is going to see me like this.  And now we have deja vu.  Just like in September, Jack was sick just before I got home last time.....The second night I got home, my mom took Jack back with her to her house as he was sick with a fever and still is under the weather.  So I'm here, getting phone call updates.  Last night my uncle stayed with Jack so mom could come over and sponge bathe me, clean off all the pen marks, shave my legs, lotion me up and get me back in my wet suit and donut bra.  I know she is running ragged right now.

Please keep us all in your thoughts and prayers......Trying to change my attitude but feeling so beat up makes me aggro.  Jack is a hand full for mom but I'd rather him be with her than anywhere else, especially being sick.  This too shall pass.  GOD give me strength right now.  I need it!!

Janeen  

TGIF

What a week this has been.  I can't tell you where the days have gone but I know it is Friday and hopefully everything will slow down.

Janeen came home on Wednesday evening and I got her settled in at her house.  We had about an hour and a half before Jack arrived with my sister and her husband with flowers, valentines, cupcakes and cookies Jack had made: it was bedlam but Jack was so excited.  Excited to see mommy and excited to show us all he had made.  It was a late night before I got him to bed, and Janeen's and my new living arrangement began.  I had her put her blow up bed in Jack's room for me so as not to disturb her when we were up but she got up anyway.  Needless to say, Janeen is at her house taking care of herself and I am at my house taking care of Jack who came down with a 102.4 fever yesterday.  Need to keep them apart. So I'll be going back and forth between the two houses until Jack gets well.

Janeen is in pain of course but is handling it as best she can without any help.  I will have my sister watch Jack tonight and I will go take care of Janeen.  Get her cleaned up etc., she will feel better and I'm sure not feel so isolated.  Bring her home then I leave her, what else can I do?  I'll spend some quiet time with her and hopefully she will put a smile on that pretty little face of hers. 

I'm sure Janeen will start posting in a few days and let you all know what she has and is still going through. Until then, we're doing OK and we hope all of you are healthy and avoiding that bug that has now caught up with us.

More at a later date..................................................Barb

She Did It Again

It has now been 24 hours since Janeen's last post.  Once again we are watching TV at Serenity House where she is recovering from her 8 hour surgery today.  ALL WENT WELL!!!!!!  She is doing great, walking the halls, eating dinner and reading catalogs.  She has no recollection of this morning nor of her transfer from the surgical center but that is a good thing.

I need to clarify something Janeen wrote last night.  Regarding her nipple construction she stated they would shrink upwards of 80% and therefore  they would be  made the size of  her doctor's thumb.  This would not be a good look and this DID NOT happen.  This is very interesting for those of you that like technicality.  Dr. Orringer took the skin that was placed or grafted onto her breast in the last surgery and pulled it and twisted the center, then inserted a pigs intestine partical and wrapped her skin around it and stitched it up.  Nice pink nipples with big black stitches.  They're so cute.  So no floppy thumbs hanging off her new boobies.  All of this totally amazes me.

He reduced the size of her right breast, so basically she has a breast reduction on the right side.  Her left breast was pulled over towards her cleavage  and contoured to match the right side.  He removed major scar tissue that had formed around the left breast as well as scar tissue that had formed as a result of her previous surgery on her abdominal scar and smoothed out her sides where  her original incision continues around  her hips.  She is wearing quite the get up.  A black girdle with suspenders, then a bra with the nipple area cute out and rubber rings around her nipples to protect them from disappearing. She is a sight to behold and she is gorgeous to me and Dr. Orringer.  She has handled this surgery so well so far. Every place he used the cannula she is weeping body fluids and this is very messy.  He left them open so she could drain and this causes lots of clothing changes as well as bedding.  I'm going to have to improvise once we come home.  She is delightful now but a bit bitchy when we left the surgical center.  She needed to calm down, it was diffinately time for medication.

The surgical center and Serenity House have been fantastic.  My girl is doing fine but I've had a very long day so I need to get to bed.  Looks like we will come home tomorrow and reunite with Baby Jack.  He is having a blast with my sister and her husband. We miss him and his hugs.

Janeen has been blessed once again.  The light of God has surrounded her all day and He has held me up. Today is a Valentine's Day that I will never forget.

Good night!
Barb

The Night Before...

I'm sitting here tonight at Serenity House awaiting my second reconstructive surgery tomorrow morning.  Can't believe I'm back here already.  Just 5 months from my last visit.  I am beyond exhausted.  I look terrible; have blood shot eyes.  I've been anxiously awaiting this second procedure.  I have had many sleepless nights.  I have never handled stress very well but now that I am a single parent, I think it gets worse.  I actually have been so anxiety ridden that my face is broken out, I have been sick to my stomach, my teeth hurt, nails chipping; sweet huh?  

This month I also had to return to my gynecologist for another CA-125 and yet another ultrasound.  The ultrasound showed something so my doctor asked me to return two days later for a hysteroscopy (knowing my second breast surgery was just days away).  So Friday I went it and he confirmed that I now have endometrial polyps.  This has nothing to do with my current situation but they need to be removed, so I will be doing this next.  The ultrasound showed very nice, healthy looking ovaries with follicles so I just bought myself another 6 months before I have to have the hysterectomy discussion again.  Once again I have been living with doctor appointments; so many lately.  

I'm thrilled my mom got to get away to Hawaii for some much needed R&R because I think I will really need more help this time as I have no hospital stay, just Serenity for a few days, then home.  I hate being away from Jack and my puggies, but I know they're fine and I will see them soon.

I was told tomorrow will be a 6 hour surgery, then got confirmation today that it's scheduled to be 8 hours.  I won't know the difference but mom will.  I haven't talked to anybody really so this may be the first you're reading about this second surgery date.  Sorry folks...just haven't felt like talking.

Tomorrow I will be getting my nipples.  How Dr. Orringer is going to accomplish this I still have no idea.  Also my right breast is noticeably larger so this breast has to be cut underneath and tissue removed so that it matches the smaller left breast.  Then I will be getting liposuction to tailor my new skin shirt that I spoke about previously.  My torso was pulled so tight that I bulge out on the sides.  I also have walnut size scar tissue forming on my abdominal scar that I asked Dr. Orringer to remove.  He said there is no way he is opening up that scar again to remove scar tissue.  So I guess I live with walnuts.  I have to break them up myself, but it feels very thick and gross.  I'm still quite numb from the September surgery so I'm not sure what my pain level will be, but I will wake up in these beautiful undergarments with donuts over my new nipples.  He already warned me that when I wake up I will probably be shocked when I see what I look like.  My nipples will be the size of his thumb and full of stitches.  Man made nipples shrink 80% so they need to get them as large as they can initially.  As much as I appreciate his honesty, I have had to live with this image for weeks now making my anxiety even worse.

I can feel myself coming down from all my angst lately.  Jack isn't here; no dogs and I'm so fatigued I feel like I'm in slow motion.  Gotta take my meds and ask mom to get back in her own bed....she's preoccupied with Letterman now.  I guess she'll me posting after tomorrow.

Happy Valentine's Day.  I LOVE YOU JACK!!!!!!

Love, Janeen