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!

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?

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Never ending medical appointments

So I had the appointment with the gynecologist today…always a thrill!  It is interesting telling my Prophylactic Mastectomy story to people who are not aware.  According to her,  records are often not sent until you are released from care.  Since I am still officially undergoing treatment my GYN had no update since the mammogram of March 2011 that started it all.  She was a very interested audience.  The person I see at the office is one of the nurse practitioners.  I have gone to her for years, much easier to get an appointment that trying to see one of the doctors.  She was the one who was there the day I had my miscarriage and she was the one I saw following the birth of both of my beautiful girls.

She added to the chorus of folks who say how brave I am.  She also added to the list of those who want me to have further tests. She agrees with the colonoscopy and not to be out done by other doctors,  feels I should also go for a pelvis ultrasound. I feel like I am some pawn in a wired medical game, I se you mastectomy and raise you one colonoscopy and a pelvic ultrasound.  So if everything were to go perfect, I have at least 5 more medical appointments minimum before we can close this chapter of my life, and when does life go perfect?

The connection between breast and ovarian cancer is known.  Can I say clearly how F-ing tired I am of tests and doctors?  Of course I will go but think I am going to hold off making an appointment until next week.  I hope to get a date nailed down for the last of the breast procedures before making more appointments. I sure hope it is the last!