Mark the date

keep calmI was standing amongst a group of women the other day listening to the conversation.  I am not fully sure how, but the topic of breast cancer came up.    Three of the four of us standing there lost our mothers to the disease.  As I looked around another woman close by recently lost a sister.  It is not hard to find someone who’s life has not been affected by breast cancer, it seems in my travels it is nearly impossible.

According to recent statistics, about 1 in 8 US woman will develop invasive breast cancer in her lifetime.  As you stand in a room look around, count the woman in the room. Who will it be?  With numbers like that what still astonishes me are those who do not have a sense of urgency to be checked.  Women who find it to be too much of an annoyance to have the yearly mammogram done.  For many of us the mammogram was useless.  I used to also have yearly breast ultrasounds.  If you are not fortunate enough to have a doctor who will write the scripts together you have to wait for the alarming phone call letting you know the mammo was inconclusive or even worse saw something abnormal. It is probably nothing they say but back to the radiologists for the ultrasound, very time-consuming.  Most of my lumps never showed up on mammograms.  Many times I heard it was probably nothing.  Several of those ended up in biopsy until the day when it was the beginnings of something.

dateI was able to react, to take control of my situation because I was vigilant with my screenings.  I hated it of course but a necessary thing.  I had my first Mammogram at 22 years old and my first biopsy soon after.  Mammograms, Ultrasounds surgeries and MRI’s made it clear what my future would hold.  Because of screenings I was able to seek out advice, talk to experts and make the decision to have a preventative mastectomy before ever having to face any type of cancer battle, thank god!

Complain, whine, scream if you must but make your appointments and have the screening done!  Somethings are just too important to wait!

A busy week and medical advances

First day for all of us

First day for all of us

The summer has officially ended in our house with the yearly closing of the pool.  There are still some very warm days in the forecast like today’s heat in excess of 90 degrees, but once school starts there is just not enough time in the day. Speaking of school, the fist day was a success for all!  Both girls had great days especially our new first grader.

Ready to take the field

Ready to take the field

The first day seems like a life time ago already.  Saturday morning was picture perfect.  Although there was a slight chill in the air, the sun, high in a bright blue sky was warm and comfortable.  Our day started with a season opening soccer game with the youngest at 9am.  At her age they play 2 fields of 4 on 4, open goal.  This is my husbands first year coaching soccer and the first time most of the girls have played together.  There were many bright spots.  A little girl who just could not keep herself from picking up the ball mid play was not necessarily one of the brightest but the season looks to be fun none the less.

The look of a 3-0 shut-out to start the season!

The look of a 3-0 shut-out to start the season!

The travel game with the older child was much better.  I think what made this game so much fun was the fact that over the last year we sat through many (emphasis many) bad, down right ugly soccer games.  With Megan as the full-time goal keeper this year we feel extra pressure to ensure she plays her best.  Saturday the entire team stepped up and played the best game we have seen them play as a team.  The final score was 3-0..first game of the year and first shut out of what we hope will be a wonderful soccer year for Megan and team.

The week is flying by with time split between my few hours at the school doing cafeteria and playground duty, soccer practice, karate and everything in between.  How quickly our lazy days of summer have been filled with days that just do not have enough hours.

On a totally different note, I caught a few minutes of the news last night  as I was getting dinner ready for the girls.  The story was about a new pump to help to identify breast cancer up to 10 years sooner than with current methods.  I do not know how much data they have collected on it or how accurate it is but I would like to believe that such advances are true and reliable.  I think about my young daughters and the very real high risk possibility that they face of breast cancer.  I can only hope and pray that the advances continue so by the time my babies have to face tough decisions,  like me they will be lucky enough to be able to act proactively.

Jolie, the day after

I follow many blogs written by woman who either have breast cancer, are BRCA positive or have had a prophylactic mastectomy.  Yesterday after reviewing several of those blogs most covered Angelina Jolie in some way of another.  What struck me as very interesting is the wide range of opinions on her story.  Most women like myself who underwent BPM surgery commend Jolie for using her platform if for nothing else to get the conversation about breast cancer risks flowing.

I was very interested in some that took great offense in how for lack of a better word , simplistic Jolie made the event seem.  In her article she makes a statement, “but days after surgery you can be back to a normal life”.  Now, I had a different surgery since my reconstruction was done by DIEP flap surgery cutting my entire abdomen.  This required many different steps be taken including not being able to move a muscle in the hospital for 48 hours and having someone checking for a pulse in my new breasts every hour which was fun for all. (not!)

When I got home I was no where close to back to a normal life.  Honestly there was a great deal of pain, many tears and for many weeks the belief that there would never be such a thing as “normal”.  I remember weeks after the surgery attempting to walk around the block with the girls and feeling like I would not make it home.  I remember being unable to get in and out of my own bed. I could not lift my arms, bend over or lift anything for what seemed like a lifetime.  I could not shower for well over a month because of the drains which left such large scars that shaving was an issue for months.  I could go on and on but the point is the same, it was less than a normal life for a very long time!

Normal.  I guess it is all in how we define the word.  I will be reminded for the rest of my life every time I take a shower.  60+ stitches left a more than noticeable scar across my abdomen.  I had wonderful surgeons whom I would recommend to anyone. Angelina describes her “small scar”, I am sure she had the best medical care that money could buy and she probably had a better outcome from it than many.  I do not fault her for that at all.  All I do is say that I will agree with those who fell she does paint a much rosier picture than what I found to be my reality.

One thing that was normal for me was the fear that after multiple years of biopsies that the next one would be the one to show cancer.  That the next mammogram would be the one.

With that said, the many of use who have shared our stories could never reach the audience that she has with her name recognition.  As I stated yesterday in my post, if her experience results in women being tested, educated and empowered well God bless her for sharing simplistic story and all!  Maybe it will cause women to take to the internet to read more realistic stories of the process. Causing women to act is the important thing.  Get your mammograms, question your history, talk to your doctor.

I thank god everyday that I had the strength to make such a decision.  I too now only have a 5% risk of developing breast cancer.  Even with the worst of the memories running through my head about the surgery and recovery, I would do it again tomorrow.  I look forward to many healthy years with my family!

Me and Angelina Jolie

In the news this morning I learned that Angelina Jolie and I seem to have a lot in common.  Her story is very similar to my own and to all of the women I have met along the way in my time writing this blog.  Chosing to have a bilateral prophylactic mastectomy, to remove a part of your body because it will one day quite probably declare war on the rest of your body.

The difference is her celebrity makes news.  I am glad that she wrote the article in the NY times.  It brings to light the struggle that so many woman have.  Having genetic testing and advanced medical abilities which have allowed so many of us to make a preventative decision to take control of our own medical destiny.  Maybe her sharing the story that so many of us have lived will cause a few more women to have a mammogram.  Maybe a few will open up to their doctors about their family history.  Maybe one day we can finally put breast cancer in the past.

Until then, Bravo to all who share their stories!

Happy (yet strange) anniversary

Happy-Anniversary-si3577dI just received a “happy anniversary” note from WordPress.  It made me think for a minute. Indeed it was a year ago that I started this blog to help clear my mind and prepare for surgery.

One year ago the decision was made. A decision to remove a part of my body that I believed would become dangerous.  My mind was set on a decision that would change my life forever.

One year ago is important in my history because it changed me as a person, I put into print what was swirling through my mind setting the course for what would happen over the next many months.  It was not always easy but ever second was worth it!

One year ago I made the smartest decision in my life! The pathology report several months later proved, had I not made this decision, well nothing is 100% but lobular carcinoma in situ sets forth a dangerous course which would never have been found via mammogram.

One year ago seems like a lifetime ago.  I wonder what the next year will hold?

iStock_000005034683Small-The-Future1

Genetic testing

So to this day I have never been tested for the BRCA gene.  My decision to have the bilateral prophylactic mastectomy was based solely on my own history.  A mother who died of breast cancer and my own irregular pathology which put me at a 50-50 risk which was good enough for me.

The findings of lobular carcinoma in situ validated my decision to act quickly and aggressively.  Once I was finished I did not put too much thought into BRCA genes.  I was doing the follow ups needed and figured we would get the girls tested as they got older.

I have now come to realize that along with the facts that I knew, men in my family also have prostate cancer which is also associated with the BRCA mutations.  So, does it matter at this point?  For me personally probably not.  I have already sprinted out ahead of breast cancer and will have yet another pelvic ultrasound in a few months to once again check my ovaries.

It does matter greatly for my beautiful girls.  For me to be able to protect my girls, to be as proactive as possible with their health I need to have as much information as possible!  I reached out to the genetic counselor I met with almost two years ago.  Thankfully she replied pretty quickly to my e-mail and is pulling my file to check on the insurance.  That was always the sticking point for the testing.  This blood work cost well over $3,000 dollars which is just not in the budget.  I will not rant too much about the insurance company since they were fantastic as the surgery bills came in.  My out-of-pocket was minimal!  It is the entire system that is broken.  priorities are out of whack.

I will receive word probably in a few days and like everything else will go from there.  Until I do hear back, all focus stays on the something really important…10 days until Disney!  Mickey_Mouse_Clubhouse_-_Mickey_-_Playhouse_Disney_Canada

 

A supreme court case we should all watch, especially women

Can/should human Genes be patented? Have you ever heard of the BRCA1 or BRCA2 Gene? If you have not heard about this case please click and read on…this is important!

“The Supreme Court on Friday agreed to decide whether human genes can be patented, a hotly contested issue with broad practical and ethical consequences for the future of gene-based medicine for millions of people worldwide.

The nation’s highest court in a brief order agreed to review a case over whether Myriad Genetics Inc may patent two genes linked to hereditary breast and ovarian cancer.”

It’s raining it’s pouring but it is beautiful

Well I just made what I hope will be the last appointment involved in this “medical” chapter in my life.  I will ring in the New Year with a follow-up pelvic ultrasound to check on the complex cyst that was found a few weeks ago.  Doesn’t that sound fun?  Everyone says “oh no problem” and I hope that is the case.  It is none the less nerve racking after a year and a half of appointments, scans, blood work and three surgeries.  I can not actually fully wrap my head around the thoughts of it all being over.  One can only hope!

I have my follow-up with the plastic surgeon tomorrow.  Things have healed nicely since last weeks revision.  All new incisions were made on the older scare lines and other than the revision on the left breast, the incisions are almost healed.  I do still have some pain from the left breast.  After the second surgery, I was not happy with the size of the new breasts.  He made incisions all the way under my arms to correct.  The left side did not heal well.  It left a wedge looking area.  That was corrected and looks great but it was probably the largest of the revision areas this round.

I still feel that the newpples are not fully level BUT I am accepting the fact that they probably were not before the surgery.  I can’t say that before hand I ever spent much time in front of a mirror staring at them which has become a past time recently.  I am sure that it is just something that only I would notice and it is nothing worth undergoing another surgery to correct.

This all started  for my family.  As it has played out it has changed my life in so many ways.  The most important is the way I view my family.  I enjoy every minute, every smile and I do not take them for granted.

My baby waiting for the bus this morning in the rain.

Post BPM day 141

Interesting when I see it broken down into days, 141 days since I made the radical life changing decision to take charge of my life and have the bilateral prophylactic mastectomy.  Three surgeries, lots of pain and some whining later I am almost through the tunnel.

Yesterdays surgery went well.  Although I had to arrive at the hospital at 5:30, I was bumped due to an emergency before me.  I was not taken back until about 9am.  Although I was a bit frustrated due to having to arrange for care for the girls etc, I took it in stride remembering my time in the ICU and the possibility that I could have been that emergency.  I breezed through recovery with no issues at all, thankfully!  The last time was a real issue!  Because things went so well there we were home and laying in my own bed by 1:30.  Not too bad!

I am pleased with what we did yesterday.  The Newpple issue seems to be corrected and the girls seem to be much more even.  I do not think they are perfect but then again I do not think any woman’s are so I am pleased with them. He did revise some of the scares that were really off which was a negotiated middle ground between what I proposed and where he was so again I am pleased.  He also did a minor cut along the abdominal scare where I have had an irritating lump.  He thought it may have been a suture that did not desolve but instead turned out to be an area of scare tissue that had formed.  Although the incision point is sore, I already feel better having the lump out!

So with all of that said, barring some strange outcome from the healing I have to go through over the next days, I have achieved a level of peace with the “girls” and see no reason why I would need to have any further surgeries on them! I follow up with the Surgeon on Wednesday.

Revisions, colonoscopy, ultrasound and “Frankenstorm”

With the end of the year quickly approaching I finally have everything scheduled and barring any unforeseen  circumstances, it will all be completed before the end of November!

I saw the Gastroenterologist today.  She agreed that a colonoscopy would be a wise move.  I have stopped fighting it and have scheduled for November 9.  I have my instructions and my script and am SOOO looking forward to it, NOT!

I have scheduled the revision surgery for November 19th.  I have to go for blood work sometime this week for that.  I am hoping the recovery from this one is quick since Thanksgiving will only be a few days later.

Since the rest of the schedule fell into line today, the only other thing I needed to get onto the schedule was the pelvic ultrasound.  As soon as I walked through the door I jumped on the phone and scheduled for November 7th.  Two and a half weeks in November are looking pretty ugly but if all goes well, by the end of the month it will all be over!

In other interesting news, we on the east coast are preparing for Hurricane Sandy or the more fun name being given to the storm, “Frankenstorm”.  They are saying it will be a 1 in 100 year storm.  I am not right along the coast so no evacuations for my family but my sister lives on the coast.  We may have a visitor over the weekend.  If things align the way they think,  we could be looking at over 10-12 inches of rain.  possibly one heck of a mess!  We ran to the store for extra milk, bottled water and batteries and a new lighter for candles.

Now I guess we just wait, for everything.