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

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!"  

More waiting

533629_395555573861729_660755664_nSo for as much as I was hoping to leave the medical headaches of the last year in the last year, I had to go for the followup pelvic ultrasound today.  A million and one people have told me not to worry about it and for the most part of have been able to put it out of my head but those million and one people did not just finish recovering from a bilateral prophylactic mastectomy.  I hate that today is Friday since I will have to wait through the weekend to hear anything.  I would like to believe those million and one people but what has me going today was the length of the ultrasound itself.  This one was more than twice as long as the first.  Now, I understand that sometimes things can not be seen as well and there are many factors including the tech doing it but none of these things can negate the fact that after the last year I am on edge and very much sick of it all!

Now we wait.

So long 2012

With the end of the year approaching, everywhere you turn you see recaps.  I did a medical recap not too long ago and quit honestly am not too interested in reliving this year.  Instead I am looking fully forward to what I hope will be a better year.

Making a statement like that always makes me pause for a second because of how close I was to cancer (according to the pathology reports).  I had the bilateral prophylactic mastectomy to prevent cancer since I was high risk but until we received those results showing cancer markers, well we had no clue just how close I was.  So, with that said the end results made 2012 a good year I suppose and I guess I should recognize that good.

The hope for 2013, well they are filled with no surgery, no medical scares and good times with my family.  I do need to get through the follow-up Ultrasound next week to check on the complex cyst.  Hopefully that shows that it took care of itself and onward we will move.Disney Trip October 22-29, 2011 627

One super bright spot that we have all been looking forward to for some time is our trip to Disney World!  We are in the home stretch and can begin an official countdown in the next week or so.  My girls do love official countdowns :-) .  We are all really looking forward to this trip!  We are staying at The Animal Kingdom Villas-Kidani, right over the Savannah.  How thrilled with the girls be seeing the animals come close to the balcony.

My crew in Animal Kingdom October 2011.

My crew in Animal Kingdom October 2011.

Since we are staying in Disney we also did the meal package.  It is nice going and knowing that almost everything is prepaid.  We will be dinning with the Princesses, Mickey and crew, Chip and Dale and at the new Be Our Guest Restaurant.  Planning this trip, making the dinning reservations were a nice distraction while I was recovering from surgery.  Finally coming close to the actual experience  knowing how much we are all looking forward to it, well what can I say that Disney does not?  It is the happiest place on earth!

Work ethic or lack there of…

I have such a headache!  The insurance company has denied coverage for the colonoscopy.  Funny how no one is ever in a rush to address anything as long as the bills are not going to them.  Although it would seem that the insurance company is the evil being here, reality looks more as if it is the hospital and how they coded the procedure.  Now it has been escalated to a supervisor blah blah blah as I sit waiting for thousands of dollars in bills. No biggie though, I mean it is not their money.

Today I also spent close to two hours on and off the phone with our cable/internet/phone company. It is a long story but one that proves that allowing companies to get so huge leads to shitty service for all.  My time today is second to the almost two and a half hours spent on Tuesday, broken up only by the times in which I was disconnected or transferred.

My recent hours on phone hold have left me with an overwhelming feeling that there is absolutely no work ethic left in this country.

I just feel down.  I have healed nicely from the latest surgery but I am not “discomfort” free.  I can not call it pain because it is not but soreness, discomfort does describe it.  I am tired of it if I am being honest.  I feel like I have not had a “discomfort free day” since before the mastectomy. Six months are a long time and starts to wear on you.  Alone I can deal with it.  Add in apathetic or plan pathetic service from outside forces and  the wear and tear I feel just escalates.

Tomorrow is another day, and hopefully a better one.

 

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.

Use the force

For the last several weeks the girls have been interested in seeing Star Wars.  I guess the interest came along side the download of the Star Wars angry birds app.  They love those silly birds and the new one has them all decked out with different abilities including one who uses a light saber.

So with the holiday and my limited activities, a few days off from school and our first weekend soccer free, it seemed like a perfect time to rent the movies.  We have a Netflix membership but I was surprised that it was not available.  I checked Video on Demand and apple TV to find the same result.  I actually own the original trilogy on VHS but no longer own a VCR.

This morning I called a friend  and neighbor who has a son.  I know he loved the movies.  They must own them on DVD.  The next thing I know their teenage daughter knocks on my door with a bag and a VCR.  They have the newer movies on DVD but figured they could solve my VHS issue.  Very exciting!

I hooked up the player and turn to reach for a movie.  Madison, in her short 6 years does not remember ever watching a VHS tape.  ”Can I put the movie in Mom?  How does this thing work?” If that was not bad enough, it was followed by “I saw these things on TV”. She inserts the movie with a giggle as if it is now the coolest thing she has ever seen.

I remember the first time I saw a VCR.  It was the size of a small car and had a pop-up door on the top so you could not put anything on the thing.  I guess I looked at it with the same amazement Madison did today.  The only difference was my amazement was due to the super cool technology.  Madison’s was more of child standing at a display in a museum wondering how we ever survived.

We settled in with mugs of hot chocolate and microwave popcorn.  That is our thing…it all helps make Bailey girls movie time special.

Me and my girls on Thanksgiving

Now, what really makes this all very interesting, is after all of this I start flipping the channels tonight to find a special airing on Television.  Tomorrow is The Empire Strikes back and Monday The Return of the Jedi.

Strange sometimes how things work out!

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.

Looking back, Moving forward

So with my next and hopefully last surgery next week as well as Thanksgiving, I got to thinking about what this year and a half has been like.  A bit of a roller coaster to say the least.

  • March 2011 mammogram and breast ultrasound; lump confirmed
  • June 2011 needle guided biopsy
  • June 2011 surgery to remove the lump due to “abnormal” pathology results
  • August 2011 Breast MRI
  • Doctors appointments with specialists
  • early 2012 abdominal CT to ensure I was  DIEP candidate
  • Blood work
  • more doctors appointments
  • July 2, 2012 Bilateral Prophylactic Mastectomy and DIEP flap
  • More blood work
  • more appointments
  • August 24, 2012 Breast reconstruction and revision
  • More blood work
  • more doctor appointments
  • November 7, 2012 Pelvic Ultrasound
  • November 9, 2012 Colonoscopy
  • November 19, 2012 Breast revision Pt 2 **Pending**

In between Birthdays, Holidays, back to school nights, summer break and normal daily activity because the reality is, doctors, scans, tests  and surgery have been normal daily activity for me for a many months now.  I have tried to keep a good attitude but there is a stress that hangs over the family since it is on going.

What have I learned?  Shit happens and most of it can not be controlled so, relax.  I will not say I do not have my moments but as a whole, I am more relaxed.  I am enjoying my family and our time together.  I am putting “us” first.  I am more thankful for what I have!

And with Thanksgiving around the corner, what am I thankful for? These are easy…first although my list looks long and obnoxious, I do not have cancer!  I am thankful that I did not wait to take action.  I am extremely thankful for my health.  I am in the best shape I have been in for years. I am Thankful for my beautiful family. I am also so very thankful for concerned doctors who continue to go the extra effort to ensure that we check everything.

My list is not finished yet.  Surgery next week and follow-up appointments after.  I will have to repeat the pelvic ultrasound and hope the cyst removed itself, if not it will need to be removed.

So although there is more to go, I sit here so very thankful for a wonderful year.  A beautiful family and good health, what more can you ask for right?

Black Friday, Christmas Decorations, More surgery and a Happy Birthday

The day after Thanksgiving for years was a huge headache for me due to my years in retail. Many that I worked with love the day, I dreaded it!  Arrive in the building somewhere between 3 and 6 am after eating enough to last a week and then work 12-15 hours. I am first to admit I am not exactly a “people person” and the crowds of crazy, pushing people who are annoyed that tens of thousands of other people had the same idea to shop, does not help my feelings toward people. The lines are longer than any other day of the year, yet many seem annoyed and openly want to share that annoyance with any and all who wish to listen.   Now many stores are opening on Thanksgiving which I find ridiculous.  IF they are only having employees working who volunteer to do such then fine but my many years lead me to believe that people probably working for minimum wage or close to it are not given a choice to keep their job or spend time with family.

But I digress.  So once I left retail, Black Friday became Christmas decoration day for us!  I have more Christmas stuff than I do normal everyday knick knacks.  I collect statues of Santa Clause.  I have the cheerful soul in many occupations, fireman, golfer, pirate, toy maker I even have a wall street santa, (don’t tell the occupy folks!)  I have them in Lenox and cloth, big and small, standing and seated and I love them all!

It hit me Sunday that this year that may not be possible since I once again have surgery Monday.  The breast revision, revision. Although it should not be too earth shattering, I do expect that I will have lifting restrictions and soreness for a bit.  Next weekend we are swamped and then surgery so the decorating had to get done this weekend.  It took the better part of yesterday and a few hours today but everything except the Christmas tree itself is up inside the house.  Frank is in charge outside.  Just like before each of the surgeries, going through my checklists of everything that must be handled before my forced down time.

The best gift ever! Took me 6 years but I finally did it!

Saturday was Madison’s birthday party.  It was a nice day.  The kids all had a great time at the karate school party.  The family also seemed to have a nice time back at the house.  Madison was thrilled with her gift, Baby butterscotch.  She is one spoiled child!  I can not believe my baby is six.  Time flies!

My baby and I with a giant Hello Kitty Balloon. Can you guess the theme?

Just another day

One week after Superstorm Sandy, we are in the midst of another (much smaller) nor’easter.  For my area it brings an early snow.  The roads are still too warm for it to lay but it is enough to cause stupidity.  I was driving to my radiology appointment earlier and was the third car in line at a red light.  All three of us were waiting to turn left.  The light changed, the first car started through the intersection just to be broadsided by some young girl who either was not looking, on a phone, a terrible driver or caught up in the “sky is falling” early snow syndrome that hits so many in my area the first few times the white stuff shows itself.

So once I was able to continue on my way, I made it to my much-anticipated pelvic ultrasound.  I quickly downed my 32 ozs of water int he parking lot and headed in. The tech was a very nice young woman who was very chatty.  I guess many woman come in nervous.  After years of biopsies, two child births, a miscarriage and the mastectomy this was just a few minutes of inconvenient time for me.  I was pleased that the appointment was timely and really pretty quick.  Can’t ask for much more than that I suppose!

I did think of how funny it would be if my husband or any man for that matter were to have to switch places with me (or any woman) undergoing these procedures.  Don’t get me wrong, Frank has been wonderful with me during this entire process, but I could not imagine what he would be like if we had to switch places.  I mean the common cold is earth shattering.

Tomorrow I start my Prep for Friday’s colonoscopy . Today my instructions were to stay away from fruits and veggies, nothing was said about the girls bowl of halloween candy :-) !  I find it somewhat amusing the it is called Moviprep.  On a quick glance you may think that some great film may start playing as you mix up the fine concoction.  At closer glance it stirs images of other types of moving.

I think in my mind I will hang onto the first!