Tag Archives: 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!

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!

Genetic testing

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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

 

Go sell your drama somewhere else

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dont worry be happySo, you know those people who are just perpetually unhappy? Their role in life is to bring you into their woes.  Victims to everything and everyone.  We all know one or two of them.  I have spent many years walking on egg shells in attempts to avoid fights.  Recently I just don’t care.  I don’t know if it was the mastectomy, or the realization of how close cancer was with the pathology results or maybe it is just the fact that I am to dam old for other people’s drama but I just will not allow myself to be sucked in.  We all have difficulties in life, we all have problems, sickness, bills and plain old obstacles.  Such is life.

How can some be so angry all of the time?

You can choose to live your life how you like.  I can also choose to say enough.  Life is too short.

Don't talk about my boobs unless you've walked in my shoes

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Reblogged from beatingcowdens:

“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”

Read more… 754 more words

I have never reblogged someone else's thoughts before but I fully share my friends outrage here! I wonder if the New York Times article author watched her mother die a long and at times very painful death. I wonder if she ever had to stare into the eyes of her children as she was told she had at minimum a 50/50 chance of developing breast cancer, a disease that has no cure nor is one close to being found after millions and millions spent. My story is different from my friend at "Beatingcowdens" but when it comes to the prophylactic mastectomy we are sisters. I wish I could have the last two years of my life back. I wish that I did not have to surgically alter my body. I wish there was no such things as breast cancer. I wish those who would like to speak out in judgement would do their jobs and maybe the rest of us could maybe have our wishes come true but since none of these things can or will happen I want to be clear, I have NO regrets in the decisions I made. Those decisions were not taken lightly and the pathology proved with great certainty that I WOULD have developed breast cancer. I finish with the same line as my friend, "Don’t talk about my boobs until you have walked in my shoes!"  

It has been a long week

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I am tired.

I have been to the pediatrician twice this week, had a follow-up with the plastic surgeon and an endometrial biopsy all while the hubby has been out-of-town for work.

It could always be worse!

So, I had my little one home sick today with fever and sore throat.  Thankfully does not seem to be strep so just keeping her loaded up with Motrin and we will wait it out.  Megan continues to have sinus issues, an ENT visit is probably in the near future.  I need to get both of them healthy in the next 35 days…that is the official Disney countdown!  Tomorrow is my nieces birthday and the girls have been looking forward to it since we found out the date.  It is to be a bowling party.  I will evaluate everyone’s condition in the morning.  I hope to be able to go for at least a little while.  FIngers crossed.

My visit with the plastic surgeon was uneventful.  I am still not fully finished with him.  I still have some discomfort from the scare line on the right side.  We agreed to one more appointment in 3 months to make sure that scare settles.

The biopsy was also pretty uneventful.  I do not know if I have a high pain threshold or after the experiences of the last years surgeries, the many years of breast biopsies or child birth but it was really nothing.  It seems that they schedule for at least 30 minutes and often get a bunch of whining, squirming and requests for breaks.  Since we did not have any of that we finished pretty quickly so with the extra time the doctor drew the blood work for the CA-125.  That saves me a trip to the lab!  We did discuss the lack of reliability of the blood work and she explained that it is just part of the puzzle.  I get it and agree.  The blood results should be back next week, 10-14 days on the biopsy.  Until then, I have plenty of other things to think about.

The list begins

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On my continued search for “what I want” I think I have begun to develop some thoughts maybe even a list.

1-I would like to worry less about well everything.  In my head I am fully aware that I can not control everything, even most things. This is what causes the worry.  I wish I could live life and just allow it to happen.  This will require work!smile

2-I want to smile more.  2012 was a rough and at times very painful year.  The year leading up to it was possibly even more scary since that was the year of abnormal biopsy and breast MRI.  Now with the pelvic Ultrasound results, I am heading for yet another biopsy Thursday. I feel like I have been under a cloud for a long while now and am ready to attempt to outrun it! Although the outcome has been good to date, it has been a long and stressful time that affected my entire family.  I believe our Disney trip is a big part of helping this change this mood and we are all looking forward to this trip!  The other night  we started to pack, a little more each day  The guest room is filling up with small piles just waiting to be put into a suitcase.  Disney is the happiest place on Earth, we can’t wait!Walt Disney World Gallery Photo

3-I would love to be able to pay off my credit cards but since that won’t happen anytime soon I will again focus on #1.

This of course is not an all-inclusive list.  It instead is just the beginning of one that I expect will grow and change in the coming weeks/months.

Retrospection,Introspection and a continued search

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what-do-u-want2I wrote a post the other day called What do you want?  As I have thought about the answer to that question all it has done is make me ask myself more questions.  I guess a little introspection is good from time to time.  A long look in the mirror to cleanse the soul.

So, in deciding “what I want”, I started to think about who I am and what I have been through over the last year and a half or so. I scanned through some old posts here and came across one back in April 2012 where I took a shot at a basic introduction.  The only thing I would tend to add or change is that I no longer live in fear of developing breast cancer.  Instead I am very lucky!  I am lucky and thankful that I had the strength to make the decision to have a prophylactic mastectomy. Those who have been peeking in for a while now know what a great decision that was since cancer markers were found in the biopsy.  It was only a matter of time.

I started this blog almost a year ago for myself to clear my thoughts as the process toward the BPM began.  Over time I meet some strong and wonderful woman.  Some of these woman are battling strong_womancancer, others like myself trying to jump out in front but all became inspiration to me in some way.  As the surgeries began, this blog became an avenue to vent, whine and express myself.  It did not matter if anyone actually read but it was nice to know that some did and maybe my experience helped someone the way I was helped.I continue writing now because although I have grown so much personally through this experience, I still do not open up well personally.  This continues to be a great outlet for me.

SO I will continue to type away, rambling about my children, my family and sometimes plain old daily minutia.  I am continuing to work toward the answer of what I want and while doing so will thank god for what I have.  A beautiful family, my health and a future that is wide open.  Not too bad I guess!

That’s for stopping by, I do appreciate it!

wl167