Tag Archives: bilateral prophylactic mastectomy

Jolie, the day after

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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

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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!

School day blues

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I spent the day in Madison’s Kindergarten class today.  I only have one more left before the end of the year.  That thought made me very sad.  Adding to my “blues” was the permission slip to go on the elementary bus trip which I was presented with yesterday.

Our district is rather large.  Our Kindergarten is half day split sessions in its own building.  They then split up into 6 elementary school followed by 3 middle school and finally a high school that is over 1/4 of a mile long.  Moving from one phase of school to another can be a bit overwhelming for the kids.  Our district does a nice job in making that transition as easy as possible.  Heading into Kindergarten, Madison and I took a bus trip and tour of the school.  Now, heading to elementary school the kids will all go to school in two weeks and then board busses for the elementary they will attend next year.  They will tour the school, meet some teachers and have snack in the cafeteria.

Madison is so excited, I am excited for her, proud of her and so sad all at the same time.  With Megan heading into fourth grade, and Madi  to first, it is more clear than ever that my babies are growing up.  I think about my miscarriage and about the mastectomy, I envisioned us with a third little Bailey but that was not to be.

I have two beautiful, smart wonderful girls and I know that I am blessed!  My blues will pass but tonight I am allowed to mope a bit. Tomorrow is another day.

Garden fresh

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If it was not for the allergies that the girls and I suffer from, Spring would be my favorite season!  Trees blooming, birds chirping and time to plant the garden!

After weeks of prepping, planning and expanding the garden the plants went in on Sunday.  We have come a long way since the first time we tried to grow some things.  A few tomato plants in pots just 4 years ago to the largest garden to date this year.  We will be growing tomatoes of course, both large and cherry,tons of cherry!  We eat them like fruit all summer long).  We also have both red and green bell, jalapeño and long hot peppers, cucumbers, strawberries and a first this year an attempt at watermelon.IMG_4242

It has really been a team effort this year.  Frank bought soil for us that we needed for the expansion.  The girls both took turns with both the hoe and rake getting out the weeds.  On Sunday when it came time to plant, the girls were so excited. Every year we say that it is “our” garden but of course I do most of the work.  Last year they did a wonderful job during the summer harvesting since I was still recovering from the bilateral prophylactic mastectomy.

IMG_4243This year it truly is “our” garden.  Megan and Madison both did a great job planting.  They took their time placing young, fragile plants into perfectly dug holes.  Two days later things look great.  The plants look healthy and already seem to be growing.  I look forward to watching the garden flourish and to the satisfaction it will provide to my girls.  It should be a fun summer of gardening and fresh veggies!

Closure

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While other celebrated Independence day last year, I laid perfectly still in a hospital bed,  IV’s and monitors attached everywhere.  Glass walls ensuring not a second of privacy. Less than 48 hours removed from a bilateral prophylactic mastectomy and DIEP flap surgery,  I laid in the ICU with crazy beeping machines and alarms because my heart rate continually dropped too low due to excessive (yet needed) pain medications.

I did not yet realize the struggles I was about to face in recovery.  I was not aware that my husband had moved a bed into the family room for me.  I did not think about how many additional surgeries would follow.  At the time I lived 10 minutes at a time. That is how long it took before the little green light on my hand-held pain button would light up communicating I could once again push for a dose of Dilaudid.

Tomorrow I see my surgeon and will be released from his care.  A final ending to this extremely long chapter in my life.  It has been a life changing set of months.  It has made me a better mother and wife.  It has helped me put things into better perspective as to what is really important in life, my family.

I am both lucky and truly blessed.

Waiting for the call….

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As 2012 began to wind down, my mobility had returned to almost normal.  Three surgeries were now a thing of the past, just a memory.  The scars from the bilateral prophylactic mastectomy and DIEP flap procedures were healing nicely and the aches were improving with every day.  I began to set my sights on 2013 and a new start, one without worries about cancer risks or surgery.

Then came a visit to the gynecologist in October.  Based on the findings of lobular carcinoma in situ during the BPM, the doctor felt it would be smart to have a pelvic ultrasound due to the link between breast cancer and ovarian cancer.

On November 7, 2012, my thoughts of a worry free 2013 quickly came to an end when complex cysts were found in my right ovary.   January 14, 2013 I repeated the ultrasound hoping for improvement but found worse news.  The cyst was still there and larger, one was now also located on the left and something was seen in the lining of my uterus.  Worry free 2013 was long gone! A biopsy was performed as was a CA-125 blood test.  Both came back showing no cancer.  Instead the item on the uterine lining looked to be a polyp.  An endometrial ablation was recommended.  I decided to wait until a third ultrasound could be performed so we could make a decision about the cysts at the same time.

April 2, 2013 I went for that final ultrasound.  After I did something I do not normally do, I made a list of questions.  I was done having ultrasounds every few months and wanted to be ready for a real conversation about moving forward. Questions such as, Do we remove the cysts in the ovaries at the same time as the ablation? Do we remove an entire ovary or both?  Do we go fully radical and remove it all?

I was prepared for everything except for what came next.  The call came along with the normal pleasantries, how was our trip to Disney?  How was I feeling?  Although I do personally like my doctor, I wanted the results.  She stated with a long “WELL”, I was a bit nervous.  She continued, “the cyst on the left is gone, and the one on the right has reduced in size”. Ugh, what?  Gone?  The words swirled for a second in my head until I finally realized, this was good news!  I actually said to her, “well that is good news, right?” No more ultrasounds!  Not so good news about the uterine lining which showed a new cyst/polyp but we already knew that would not correct itself.

SO, I have a pre-op appointment at the end of May to prepare for the endometrial ablation.   My list of questions went onto the trash. In the greater scheme of where I have been and what I was expecting, a minor surgery! I would much prefer to stay out of hospitals yet, compared to the alternatives, I am pleased, and thankful!

Happy (yet strange) anniversary

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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?

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An unsolicited comment :-)

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I saw someone today that I have not seen in a few months other than a drive by in a car accompanied with a quick wave.  Right around my surgery her father passed away so her own life was very chaotic. I ran out to get the mail this afternoon without a coat and this friend was driving by and stopped.  The normal niceties were exchanged followed by a wonderful statement, “you look fabulous”.  What a nice thing to be told!  The fact that I was wearing dirty sweatpants, an ill-fitting shirt with hair pulled back since I had been cleaning all day made the comment all the more special.

My surgery seems like a lifetime ago, something I never thought I would say. I have made a full recovery.  I still have some numbness in my stomach and in the noobs which may always be there. I have a terrible time with sit-ups but if I am being honest, I could not do many before having the DIEP surgery.. None of these things has any effect on daily life.

I see the scares everyday. I think sometimes I allow this to affect my mental health.  I get a little down, excuse to have the extra snack and skip the work out.  A kind soul offering a totally unsolicited (but very welcome and extremely kind) comment goes a long way to reminding myself that the scares are only on the surface.  They are a sign of a great fight and should be seen as almost a trophy. (alright, maybe trophy is a stretch). If nothing else it is a little boost to remind me of how far I have come.

Tomorrow is another day

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A few days home and things are fully back to normal.  Thankfully Madison’s stomach is one of those things!  The scheduling of yet another pelvic ultrasound is another.  I still question whether it would be better to know for sure if I was BRCA positive.  I am not sure if it really matters at this point I guess.

After realizing that there was a history of prostate cancer in men on my father’s side, added to the breast cancer issues on my mothers,  I reached out to the genetic counselor to see if it made a difference in the insurances companies payment position.  I have heard back from the genetic counselor and it does not.  She sent me the full bullet pointed criteria laid out by the insurance company.

I can not worry about things I can not control.  This puts and end to the thoughts of testing for me.  I have already had a prophylactic mastectomy and the fact that I have scheduled my third pelvic ultrasound in roughly 5 months shows a close eye is being kept on me.  Pending the results of this round I will need to make some decisions.  Until then, well tomorrow is another day!

 

A visit with Merida (from Brave)

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IMG_3930So as we sat in the hotel one night we had turned the television on but had never changed the channel.  After a few minutes we realized we were watching the “things to do at Disney” channel.  That is when we saw it, one of the newest character visits at the park was Merida from Brave.  She has become important to my family.  When I was in the hospital, Frank and the girls went to the movies and saw it together.   It was one of the first nights while I was still in the ICU after the prophylactic mastectomy.  The girls got a bit emotional as they drew connections between struggles with Merida’s mother and their own.

According to the television, Merida was in Epcot.  We had already been to Epcot and did not see her.  We tried to look it up on the internet but found a wide array of stories.  Seems she is so new that as they tested the character and first put her out with crowds she moved around a bit.  We were able to find some cast members who told us exactly where to find her, in Magic Kingdom.

Thursday morning we had plans for breakfast at Cinderella’s castle.  Merida was right down the path from there so right from breakfast we went. It was 25 minutes before she was even due to start her day the line was forming.  We took our place and patiently waited.  AT 9:15 the door opened and in the line moved.  They have set her up in an area that was being used for Rapunzel the last time we were at the park.  From what we are told during the initial roll out kids were allowed to shoot an arrow with her but it seems that has stopped.  I can only assume that it took too long. For those wondering what happened to Rapunzel, it seems that she will join the new Princess Fairytale Hall currently under construction.IMG_3925

The visit was excellent! She chats with the kids and is very playful.  She stole the hat of one of the cast members at one point hiding it behind her back.  They all play along looking around for it as she places it on a father in line.  She then is the one to “find it” announcing that “he took it!”.  With others she takes children and hides with them or tells silly stories.  It makes for a much longer line, but a much more fun and interactive visit.IMG_3927

When it was time for Meg and Madi to visit, Merida came over to the line to meet them.  She immediately took their books and signed talking the entire time.  The girls walked with her over to the picture spot.  They posed and then both gave her a hug.  Frank and I were starting to move along when we noticed Merida and Madi sneaking off to the side of the stage.  They hide and snuck around for a few seconds until “found” by other cast members.  She then gave Madison a hug and we were on our way.IMG_3931

I know this sounds ridiculous but it brought a small tear to my eye.  It made Madison’s day! Well worth the wait!