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lianne_brca2
01 December 2008 @ 03:34 pm
MASTECTOMY & BREAST RECONSTRUCTION:
  EXPANDERS TO IMPLANTS


ATTENTION:
To read in order; start at the TOP of this page and read down (new entries at the bottom of Journal). 

So you are not surprised, I will warn you that I have posted pictures of the healing process. 

Thank you for taking the time to read my story.  Please pass this on to anyone who you feel may be interested.

If you have any comments, questions or suggestions...  I'd love to hear from you, send me an email: 
lianne135 @ hotmail.com

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lianne_brca2
04 December 2008 @ 09:18 am
A BRIEF HISTORY

Okay, So here it goes.  I am a woman, a wife and a carrier of the BRCA2 mutation.  The 'breast cancer' gene.  I'm okay with that. In fact I feel it is a blessing to know.. this way I have the opportunity to DEAL with it before it potentially develops to something more.

As it stands, I have up to 87% chance that I will have breast cancer sometime in my life.  (they call it an 87% lifetime risk)  I learned of my mutation in 2003 and have been going for yearly tests to make sure if something is starting we will catch it early.  MRI, mammogram, ultrasound and clinical  breast exam. 

Last August, I received a call at my home 2 days after my MRI. They said they found 'something' in my left breast and wanted me to come back for a second MRI.  I did. To make a long story short, they took a biopsy and it was clear.  But it scared me.  Those 3 months, from the call to the results, were one of the most stressful  times of my life.  I decided then  that I will not go through that again.

~SO I'M HAVING SURGERY~

PBM. Prophylactic Bilateral Mastectomy with First Stage Reconstruction. In other words: preventative removal of both breasts; they will begin the reconstruction at the same time as the mastectomy.
  It will be a 6month (or more) process before its all said and done and I have my new permanent implants.   It begins for me... Jan 23rd 2009.  (Just over one year after making my decision to have the surgery)

I will post my thoughts and photos as well... I must warn you in advance; some may be graphic.  I'm not fooling myself to think this is going to be easy. But I do think it's important to document it.

You see when I started my research (and I've done hours of it!) I really wished it could have come across a website that had given a step-by-step walk through. Especially with photographs. (I'm a very visual person)  It was very hard for me to find pictures; and most of the ones I did come across were awful...  showing complications of all sorts.  I decided at that time that I would document my progress not only in words but in pictures as well.

I actually met with a friend of mine who agreed to do a photo shoot and take some really lovely 'before' photos.  I'm really glad I did. I will always know what I 'used to' look like.  She has agreed to take photos during the the healing process as well.  Once all is done, we will have another formal shoot to take some 'after' photos.  Perhaps I will share those with you. :)

I hope that reading my experience will be some sort of help or encouragement to you.  Even if only to take away some of the mystery.  I am surprised at just how much secrecy and mystery is still behind breast cancer awareness, breast cancer and breast surgeries.  I hope this will help.

I hope you'll learn a little something about the BRCA mutations and what it means to those of us who are carriers of it...  Most people I come across have never heard of it, and have no idea of what it is or what it means.

 
 
lianne_brca2
06 December 2008 @ 04:50 pm
WHAT IS BRCA1 & BRCA2


BRCA1 and BRCA2 are human genes, that are involved in the repair of chromosomal damage and belong to a class of genes known as ‘tumour suppressor’ genes. Everyone HAS the BRCA1 and BRCA2 gene.   But only very few of us carry a mutated or variant of that gene (about 1 in 800). 

 

Because our ‘tumour suppressors’ are compromised, the lifetime risk of developing breast cancer is estimated to be up to 87%. The risk of developing ovarian cancer is also elevated up to 44% for the BRCA1 mutation, and only 25% for the BRCA2 mutation carrier. The big problem with ovarian cancer is that is nearly undetectable… Once you start experiencing physical symptoms, the cancer can be quite progressed.

 

This up to 87% lifetime risk of breast cancer is incredible if you consider the average woman has a 7-12% risk of developing the disease. That being said, inherited breast cancer accounts for only 5-10% of all breast cancer cases.

 

So we as carriers are quite special!  :) 
 

I have heard people refer to the BRCA mutations as the “BReast CAncer gene”.  It makes the explanation of my situation easier to explain. For some reason I find when I tell some on my risk is 87%, they don’t blink an eye... but if I say I have the breast cancer gene which means my risk of developing cancer is up to 87%, they ‘get’ it.


up to 87% risk

What does that mean?  Here's another take on it.

Pictures this: You are told that the car you are about to drive has an 87% chance of being in a car accident.  The accident may or many-not be fatal; you many or many-not be seriously injured in the accident.

Would you drive the car? 

Now, if you were told that you could have the car serviced, it would look and work the same as before, but it would reduce the risk of having an accident by 90% or more... would you have the car serviced?

That is the choice I made.


BRCA ~ BLESSING OR CURSE?

 

Without a doubt a blessing.

OK, perhaps having the gene mutation is not a blessing, but the KNOWLEDGE of it, absolutely.

By looking at my immediate family, breast cancer does not appear to be a very valid threat to my health. 

All the health questionnaires ask about your ‘first degree’ relatives; sisters, mother, aunts etc. For me the closest member of my family to have breast cancer is my Paternal Grandmother. A strong woman, who loved her family with a passion, loved to laugh and fought both breast cancer as well as ovarian cancer. All in an age where cancer was a killer, not something you survived. 
My Gramma had 9 kids, 7 boys and 2 girls. My Dad is one of those kids. To my knowledge, my dad is the only one to have inherited the mutation. And now it has become my story.  I was named after my Grandmother and only hope I can do her justice, if I can borrow some of her strength by having her name… I’ll take it.

 

If I was not aware of my BRCA2 mutation I would live my life being blissfully unaware that there was an 87% that this monster (breast cancer) would get me. Probably at an  age that that I was not expecting it of course who ever expects to get cancer – is there an age that we should be ‘ready’ for it?

How did I find out about our family’s mutation?

Well here’s were it gets complicated. I learned of it through my Dad’s cousin. There were 4 sisters in this particular family. Three sisters developed breast cancer, they were in their 40s which is young for the ‘average’ breast cancer. (I have learned through my research that 40 is not young at all for people with our mutation) One of the sisters thought this was very odd indeed. She opted to have genetic testing done. It took months to get the results back. 

The lab that does the testing has to check all of the 13th and 17th chromosomes (that’s the chromosomes that the BRCA1 and 2 are found) They found a mutation on her chromosome 13. (
2558insA) is the exact name of the mutation that is in my family; ‘ins’ means ‘insertion’ some BRCA mutations have ‘del’ in the name; it means they have a ‘deletion’. I am by no means qualified to really explain the whole insertion/deletion thing, but I do know that the normal BRCA gene has neither.  :)

 

Once this cousin found out she tested positive for the BRCA2 mutation she informed the family.  A very brave move on her part.  Some people want to know nothing about this.  I am forever grateful she chose to share.

Now we have to make a few assumptions (to be proven shortly). Her father was my Great-Uncle; my Gramma’s brother. My grandmother had breast cancer and ovarian cancer.  She passed away years ago, so there is no way to really KNOW if she had the mutation as her brother did. BUT we can assume so, since the chance of developing both cancers is actually quite rare. (Outside of the BRCA community)

 

SO, Gramma we think, had the mutation. Every child she had, (there were 9) had a 50/50 chance of inheriting that mutation from her. So, if my Dad had it; there was a 50/50 chance it was passed to me as well. So when we first learned of the whole deal there was a 25% chance I would actually carry the varient gene.

 

My Dad was tested, he chose not to tell us his results, or even if he had went to get his results. He didn’t want to influence our choice to get tested. I chose to go ahead and do it. I figured, I’d rather know and deal with it, than always live wondering.

It is all done by a simple blood test.  Because they knew were to "look" for the mutation (based on my cousins result's)  It only took a month or so before my results were in.  

 

I remember when my husband and I went to the Genetic Counselor’s office to pick up my results. Her first words to me where “OK, it’s not good news. You have the mutation."

I was okay with hearing that.  Really.  I know some people break-down and see it as a death sentance.  I don't.  I see it as a 'heads-up'.

 

I will forever be grateful to this cousin. Not only for her strength and bravery to have the genetic testing done first, but to be open enough share it with others. It’s not easy. It’s not an individual thing, it affects the whole family. Those of you who have this mutation in your family know exactly what I mean. Because of her I have a chance. I have a chance to fight cancer and beat it, before I even SEE it!


 
 
lianne_brca2
20 December 2008 @ 05:08 pm

SCREENING/SURVEILLANCE IS AN OPTION!!

This is something I have come to think very strongly about.  I feel as though learning of my BRCA mutation does NOT mean a date with a surgeon.

There really ARE other options.  The only issue here is… Are YOU willing to live with  these other options.

In my case the answer was yes.  I learned of my BRCA2 mutation in 2003.  I was given the name of a woman in Toronto who was conducting a study group...  The study would consist of yearly screening, including MRI and Mammogram.  There was also a clinical breast exam, done by a DR.

I am VERY thankful that this option was presented to me when I was given my BRCA results.

Going for screening every year was quick and painless.  It took a day of my life and I was ensuring that if I did develop cancer, at least it would be caught early… very early.

I was able to go for my scans, get them done and go home… never really give it a thought or worry again, until the next year. We’d set the appointment and start over again.  No news is good news; they would only call me if something showed up that was concerning to them.

I think I would have continued this route, happily, for many years if it wasn’t for last August…

2 or 3 days after I had gone for my ‘yearly scan’ as I came to call it; I got a call saying that they had found a change in my left breast.  They called it a ‘non-mass’ and it was 7mm in diameter (I think)...  They asked if I would come back for another MRI??.. OF COURSE!!  So I had a second MRI, sure enough it was still there… So I had to go back a 3rd time to have a biopsy done.  Because the ‘thing’ was so small they had to do what’s called an MRI biopsy.  So half way through the MRI they pull me out and place needle where they had just imaged the spot… put me back in to check to make sure they have the correct spot, then pull me out and perform the biopsy.  Pretty cool stuff actually.

But the 2 or 3 months between the phone call saying they had found something; and the time when I got the results from the biopsy (which were TOTALLY clear) was incredibly stressful.  It was during that waiting period that I made my decision to go ahead with the surgery.  I decided that no matter what the results were of the biopsy, the action I would take would be the same.

I’m extremely pleased that it wasn’t a cancer diagnosis, and that I have this opportunity to go ahead and take this step in preventing breast cancer in my life.


A WALK THROUGH A BREAST MRI

I’ve had 6+ over the past few years so I’ll walk you through my process.

First they had me disrobe and put 2 hospital gowns on … the first one on like a coat (open in front) and the other front to back. That way when I go into the machine I can take off the top one, expose my breasts and still be covered in the back.

Then they sat me on a gurney and went through a questionnaire, allergies, etc. They were very concerned about any metal that may or may not be there, piercing etc. Absolutely NO metal allowed. They even asked if I had ever welded, and if it were possible that I might have a small piece of metal in my eye. This is when they offered me the Ativan. The fist time I did take it, it’s about half the size of the tip of a pencil eraser, and it dissolves under your tongue in seconds.

At that time they put in my IV. So that they can inject a contrast dye about half way through the procedure.

I was walked to the MRI room, which is kept quite chilly (when I asked “why so cold” they said ‘the magnet’ likes the cold, it will shut down if it gets too warm) The technician asked me to take off the first robe, then she handed me two vitamin E tablets with tape on them. I was to tape them loosely to my nipple (it gives them a reference point as to where the nipple is during the scan). Then I hopped on to the machine and laid on my stomach. They get my breasts centered in the holes with plastic plates on either side. Once you are situated they move the plates together to immobilize your breasts (nothing like a mammogram! And should not be painful at all) Then they covered me up with blankets, they even put a pillow under my feet. They gave me earplugs and the ‘emergency call’ button, in this case, was a rubber ball that they put in my hand. Then they wheeled me into the machine. They can talk to you through this microphone … I heard them VERY clearly. They can also hear me (I was sure to check that out when I first laid down)

My first MRI, the lady said to imagine myself on a beach and there is a cool breeze passing over… That helped, because there was a breeze during the whole procedure. Unfortunately because of the Ativan I was pretty relaxed and kept forgetting I wasn’t supposed to move. They had to keep telling me to be still!

Even with my being claustrophobic, I have not taken the Ativan since that first time. I am able to relax and think of something else (I find the rhythmic clinging of the magnets soothing)… Actually I’ve noticed I am so relaxed I always seem to drool!!

The whole thing is not done all at once... they take a series of pictures. Ranging from 30sec to 2min in length, with a small break in between when the tech will speak with you.  You mustn’t move throughout any of it.

For me when the dye was injected, I felt a rush of cold go up the inside of my arm (the IV was in my hand) almost like cool water dripping UP my arm, weird feeling, but not at all painful.

All in all I like the MRI experience and of course its amazing just how much they can see with that technology now.

There is always something to bear in mind when talking about an MRI scan:

The GREAT thing about MR is that they see EVERYTHING. 

The BAD thing about MR is that they see EVERYTHING!

So like me, you may get a call about a ‘false positive’; it’s when the machine is too accurate, it finds things that are of no concern at all, simply a change from one scan to the next.

 
 
lianne_brca2
21 December 2008 @ 12:38 pm
CHOICES I AM WILLING TO LIVE WITH

That is really what this whole Journey from start to finish comes down to for me.  Decisions I am willing to live with.  Perhaps the other side of “choices I am willing to live with” is RISK.   In fact perhaps they are not on opposite, but the same side.  These two go hand in hand.

What risk am I willing to live with vs what risk am I not willing to live with?

I am no longer willing to live with the up to 87% risk of breast cancer.

There are other options before considering mastectomy surgery.  There is of course surveillance, there is a drug called tamoxifen which is said to reduce risk by up to 50%.  Other women choose to have their ovaries removed which is also said to reduce our breast cancer risk by a good amound. At this point in my life I am not willing to live with any of these options.

That brings us to surgery.  According to some experts, having healthy breast tissue removed may be the most appropriate preventative approach for those of us carrying the BRCA mutation.  It will reduce my risk by 90%.  That is something I am willing to live with.


TYPES OF SURGERY

I will make it really basic.  Essentially there are 2 ‘kinds’ of reconstruction surgery. Tissue 'FLAP' surgery or Implants.  Within both of these options there are many different surgeries.

FLAP surgery.  It is when they use a tissue flap from your own body to reconstruct the breast(s) that was (were) taken.  They can take these tissue flaps from your abdomen, buttocks and even your back. One of the wonderful things about these types of surgery is that the final ‘breast’ is very like the original.  Because it is made from your own fatty tissue, feels and even moves like a normal breast.  It is also a permanent fix.  There will be no need to change it out 15 yrs down the road.  On the flip side, it means not just one surgery (mastectomy) it means a second major surgery to collect the flaps, these are done at the same time.  Generally the surgery will leave quite a large scar at the donation site.  The recovery time from this kind of procedure is quite a bit longer and more difficult than other options.

This is not a surgery I was willing to have.  I did not want the extra scars, the more complicated and more painful recovery or the ‘real feeling’ breasts.  As odd as it may sound I am very much looking forward to being able to wear whatever I please without having to wear a bra!

This brings us to Implant reconstruction;  when they place an implant to replace the breast tissue.  There are different ways of doing this surgery too.  There is what they call a One-Step with Alloderm, One-Step Expander/Implants and Tissue Expander w/Implant.  Every Dr. will have their favourite.   Most Dr’s don’t do more than one of these surgeries. 

There is a wonderful book that I highly recommend reading, it gives a brief but very informative breakdown of each surgery.  The book is called "The Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery" by Kathy Steligo.  It was the first book I picked up when I decided to do the surgery and was by far the most useful as well.  This is the website: www.breastrecon.com/index.html

I chose to go with the Tissue Expander and Impant.  The there are really two reasons why I did.  First, is that the Dr I wanted to go with did this kind of reconstruction (unless I wanted the flap surgery).  Second is that the other two ‘ways’ are still fairly new.  I wanted to reduce my risk of complications as much as I could and for my peace of mind; it meant going the ‘traditional tissue expander’ route.

The choices I made were the right ones for me.  They are decisions and choices that I made and are willing to live.  Are they the same choices you should make?  I cannot say.  I know that you must make the choices that are right for you; they may not be the same ones I made.  YOU must live with them.


RISKS

Before going ahead with the surgery I went over in my head the worse case scenarios.  Hopefully none of these would be an issue, but at least if I consider them before hand, there will be no surprises after surgery.  It may seem morbid, but I had to do it before going on.  

Here’s my list of worse case scenarios as far as surgery and recover go.
  • I die.  Yes.  That would be the WORSE thing that could happen. The chances of that happening are VERY slim.  I didn’t look up the statistics, but I can assure you it is very unlikely.  :)  Even if it did happen; I have the blessed assurance of knowing where I will be spending eternity.
  • I have to remove one or both expanders and be flat.  Sometimes a person’s body just cannot adjust to a foreign object.  Maybe it will be infection or other complications that will cause this to happen. Considering my risk of breast cancer will be reduced by what it will be – would I be able to live with a flat chest?  The answer is yes.  If I was not comfortable being flat, there are many prostheses available to women today.
  • I have complications.  The healing takes MUCH longer than expected.  Necrosis, seroma, infection. There are many things that can go wrong during the healing process...  I have just reduced my risk of breast cancer by 90%, would dealing with these issues be worth it?  Yes. It may take time, but we can DEAL with them as they come.  Much better to deal with these complications than with a cancer diagnosis.
For me it takes the scariness away when I see and consider the ‘bad’ things that can happen.  Now that I’ve seen and considered them, I can now let it go and stop worrying/obsessing about them.

Not that I am wishing or hoping any of these things to happen.  I’m not.  But I am aware they can happen.  To go in blindly and expecting all to go well, for me, was not an option.  I know the things that can go wrong and we (my husband and I) will deal with them as they come.   

Whatever could go wrong would be worth it; compared to doing nothing and perhaps having to fight cancer later.
 
 
lianne_brca2
23 December 2008 @ 05:12 pm
THE SURGERY

The surgery I am having done is called Prophylactic Bilateral Mastectomy with First Stage Reconstruction.

In other words: preventative removal of both breasts with immediate start to reconstruction.

I will have two Doctors.  The first will be a Breast Surgeon; his job is to remove as much breast tissue as possible.  Breast tissue is not only in the breast but reaches up to almost your collar bone and around the side to the armpits.   

Once he is done, he will stay and assist the Plastic Surgeon who takes over.  She is going to insert “tissue expanders” under the muscle in the chest wall.  Over the next weeks and months, I will visit the Plastic Surgeon for what is called a ‘fill’ or ‘expansion’.  This is when she puts a needle in the tissue expander and adds saline solution.  This will literally ‘grow’ me a new breast mound.

                 
      

Kind of like a woman’s belly who is pregnant and her skin expands and makes room for the baby.  It’s a gradual process.  So is this.  In this case not only will the skin be stretched but the muscle as well.  It takes time.

The reason this whole process in necessary, is that during the surgery the DRs will remove my nipple as well as some of the skin around it.  They place the tissue expander under a layer of muscle, there would be not enough room to insert a permanent implant right away.

After the expansion process is complete;  I go in for the second surgery. The exchange surgery.  This is when they will exchange the tissue expanders for permanent implants.  These implants should last 15 yrs or more.  Chances are, I will have to change them at some point.

Then comes the optional final stage.  Once the permanent implants are in and are given time to ‘settle’ I have the option to go in for the third surgery, the finishing touch.  The nipple.  The Plastic Surgeon can re-create the nipple using a skin graft from another part of the body then tattoo it to be the right colour.  

DONE!

I hope to have the exchange surgery some time in May/June (if all goes well with my healing)


PICKING A DOCTOR or TEAM OF DOCTORS

I met with 5 different Doctors before making my choice.  I realize I had the blessing of having TIME on my side.  I did not have a cancer diagnosis and so had time to meet with different Doctors speak with them and go see others for their opinion.

Do we pick them because they are ‘the best’, because they have great bed-side manner?  OR do we NOT pick them because they are arrogant, or have no interpersonal skills whatsoever?   

Is the Plastic surgeon the most important choice – do I meet with them first?  _After all, I will meet with them after surgery and I have to live with what they create for me; the Surgeon is only there for a few hours of my life.  

Is the Surgeon more important – pick them first? _ After all, the whole reason to do this surgery is to reduce my risk as much as possible, remove as much breast tissue as possible; I can always go see a different Plastic Surgeon after the fact for a revision if I do not like the final product.

**(We have to realize that it is impossible to remove ALL breast tissue – so there is always a RISK that breast cancer could develop)**

I don’t think there is a RIGHT WAY you pick your Doctors.  For me, I put more emphasis on picking the Surgeon.  Who I picked came down to who was I most confident in.  Who did I trust?  It was less about pictures and experience (although, all the Drs I met with had plenty of both) it was who did I trust with my surgery.  Who would do a good job?  And most of all what choice was I willing to LIVE with.  That’s the bottom line.  I made my choices based on the reasons I listed above; perhaps you will choose your Doctors differently.  

It came down to trust.  Based on my Dr’s experience (many years); his gentleness and his knowledge and understanding of the BRCA mutations are only some of the reasons why I chose him.  We actually spoke of other non-surgical options the first time we met.  Because I had such trust in him; I had to believe that the Plastic Surgeon he chose to work with must be pretty good (she is).   

When I met with the Plastic Surgeon that my Breast Doctor worked with, I was really nervous.  I wanted her to be good.  She is.  Again, it’s important as well to know that the Plastic Surgeon has experience and knows what they are doing.  I was very fortunate that someone from my family came with me to every appointment I went to.  We were then able to go over things afterwards.  For me again, it was less about what was said.  I have done my research and ‘know’ what they are taking about; I watched how they interacted with their staff, were they respectful, did they order them around..?  I asked the lady at the reception counter about my Plastic Surgeon.  She said she was amazing, has a real passion for breast reconstruction and that I am in ‘very good hands’.  For me, that carries a lot of weight.   Again, these are my choices; this was very important to me. 

Another thing I found helpful to keep in mind is that Doctors will recommend a procedure they like or are familiar with.  I saw 3 different Plastic Surgeons; all very qualified and well respected in their field.  I was recommended 3 completely different reconstruction procedures.  Not ONCE was I told; "I don't do the procedure that would be 'right' for you; you go see Dr.____."  That's not going to happen.  Every one of them has a procedure that would work for me.  I have to pick the one I want.

It is not easy to pick a team.  Bottom line is we have to live with the choice we make.  Make one you are comfortable with.

 
 
 
lianne_brca2
30 December 2008 @ 06:43 pm

PRE-OP APPOINTMENT

I had my pre-op this morning.  I went in for 8am and was done around 11am.  I think it went really well; no surprises.  I met with a nurse first, we went through all our paper work / consent forms..Then we went through a hand-out that we were given "Patient Education : What you should know about Your Mastectomy Surgery".  She showed us (my husband and I) the Jackson-Pratt drain and how to empty it.  She gave me a small square of the bandage tape that they use to put on my arm to 'test' it.  I have an allergy/sensitivity to some tapes.  I am to leave it on for 24hrs and see.  I hope there is no reaction.
 
I then met with someone to draw blood, painless procedure, I am a regular blood donor and the needle they used was TINY compared to the ones I'm used to seeing! They also gave me a sterile cup for a urine sample for day of surgery (they said it was to check if I was pregnant).
 
I was then sent to the physio department where a woman (Physiotherapist) went over in detail the exercises in the booklet we were given.  I was given exercises for 1-5 days post surgery (or as long as the drains are in); a different set of exercises for after day 5 (or after the drains are out); and another set for 10 days post surgery.  Of course 10 days is best case scenario... I hope that I can do as well as that!
 
After meeting with physio, I was done!   I did not have to meet with the Home Care people because I will be having out of Province Home Care (nurses).  They faxed the 'requisition' over to them.  I called them directly to confirm they received it... No problem but they actually need a different form; to be filled out the DAY of surgery and fax to them at that time.  Weird.  But I'll do it their way. :)
 
So now I have simply to pack my hospital 'overnight' bag and I'm ready.  I will print up a few questions that I want to ask the day of surgery...I have 3:  First for the anesthesiologist, to request a pain 'block' or 'blocker' it was recommended to me from someone who had this procedure... from what I am told it is similar to an epidural.  Second; I want to confirm with my surgeon that he will NOT be touching my lymph nodes (a sentinel node biopsy - unless of course he sees something suspicious during surgery).  Third is to confirm that they send the fax to the appropriate people to set up my Home Care Nurse.
 
Now I'm ready to put all of this out of my head for 2 weeks while I enjoy my CRUISE!  There is nothing more I can do here to prepare.  I have a hospital bed being delivered on the 22nd (day before surgery).  It was recommended to me by someone who had the surgery, they say it is much easier to 'get comfortable' in them.
 
Oh yeah, one last thing.  I have to get a nursing pillow!  How ironic that I need a nursing pillow when I will no longer have any breasts... ?!  Again it was recommended to me for the shape, to have the pillow behind my back and lean on will raise my arms to a comfortable height (apparently - I'll let you know a bit later!).
 
Toys R Us here I come!
 
 
lianne_brca2
12 February 2009 @ 08:40 am
BEFORE GOING TO THE HOSPITAL

When I got back from my WONDERFUL cruise I had ONE day at home before going in for surgery.  That day was filled with a whole lot of laundry!!  I knew that it would be some time before I could do laundry again so I almost enjoyed it.  Almost.

Before I left for the cruise I had started packing my ‘overnight bag’ for the hospital.  I had printed a list of items to bring, put it in the bag. So all I had to do was go back to my bag, unzip the top, pull out my list and finish packing what was missing.

Here’s my list:
  • pajama bottoms X2 (never wore)
  • socks X2 (never wore, bare feet for me!)
  • underwear X2 (yup)
  • crocs (yup, great for walking around in hospital – slip on, and good tread *plastic slip on shoes*)
  • iPod / earphones (great to block out nurses noises at night when I’m going to sleep)
  • deodorant (never wore)
  • hair elastic ( yup, or something to get your hair off your face/neck)
  • baby wipes ( a MUST; to wipe down my face, neck and body, since I knew I couldn’t bathe)
  • lip balm (yup, for me a MUST)
  • eye drops (again for me a must)
  • note pad / pen (nice to have by my bedside, drugs due funny things to your head, so if I thought of something I could write it down, then not have to worry if I’d forget to tell/ask someone about whatever it was)
  • tooth brush/paste (yes)
  • hair brush (yes)
  • surgical bra (my plastic surgeon told me to bring a bra that closes in front to surgery)
  • book (never read/ didn’t really want to, I had my iPod)
  • sweat pants (I wore to the hospital and home)
  • sweater ( I wore to the hospital and home)
  • button front shirt (I wore to come home – can’t lift your arms)
  • bike shorts (I wore cotton bike shorts under my gown, they covered my underwear and never got bunched around my knees or anything like pants could - perfect)
  • kids sippy cup (so that I could hold it upside down without dumping over me; I found one that was for kids 18mo or older instead of the baby ones.)
I can tell you I didn’t ‘wish’ I had brought anything more.  I saw tons of different ‘lists’ before I made my own and the common thing to read after is that you don’t use half the stuff you bring.  TRUE.

So I packed all I could except my clothes for going and then  I could rest. Knowing I had done all my planning ahead of time I didn’t have to worry.

I also printed a list of things before leaving for my cruise and left it in my bag too...  These were things that I wanted to confirm the DAY of surgery, things I did not want to forget asking my DRs.  I printed them, put them in my ‘overnight’ bag and now I don’t have to worry that I will forget them!
  • Confirm no lymph node dissection
  • Ask anesthesiologist about blocker
  • confirm fax requesting home care is sent
 
 
lianne_brca2
19 February 2009 @ 04:19 pm

DAY OF SURGERY (19 February 2009)

This is how my surgery day went down.   I was told to call the hospital the day before and they would tell me what time to come in for surgery. I called and they said I would be first in the Operating Room for the day.. Be at the hospital at 630am and I would be in the OR for 8am.

The walk from the parking lot that morning with my duffle-bag over my shoulder was kind of surreal. I had a real peace. In fact even in the days leading up to surgery I was calm.  I asked my husband more than once "shouldn't I be freaking out right now? My surgery is in _days!" he said no there was no need for me to lose it... I was already ready for the surgery... I made my choice over a year ago. He was right. I think that's why I didn't feel the need to write here either. There was nothing new to report: unless you want to hear about my holiday-which was amazing :)

Once we had "checked-in", I confirmed the fax was being sent to the Home Care people.  I was separated from my husband almost immediately after we checked-in. The lady gave him a number to call at 10:45am to check in... I should be done by then; I was lead to a room where no family was allowed. My husband gave me my last hug with my old breasts - he held me longer than needed to pray for me and the surgeons - again what peace I had!

I was led into a room with 8 different curtained off areas, each with a gurney.  I was told to disrobe and wear nothing but a hospital gown. The nurse went over a list of questions with me... Was I wearing contacts, nail polish etc? I was wearing red toe polish, she sent me to the washroom with wipes to take it off; I guess checking your toe nail is a way they can see if your blood is flowing properly.

They stored my ‘overnight’ bag and boots, labeled with my name on it.  My Plastic Surgeon asked me to bring a front closing bra with me to surgery… I dug it out of the bag and kept it by me on my hospital bed (gurney).  I found the bra at Wallmart, nothing fancy, just cotton.  I did by one size bigger than I normally would.  Normally I’m a 38 so I bought a 40, I figured I’d be swollen after surgery.  I was.

The nurse set up my IV with a saline solution as well as an antibiotic that was requested by both my Drs as a precaution. The nurse made sure I was comfortable and we waited for both my Drs to come for a visit.

The fist Dr to arrive was my Breast Surgeon Dr M.  He was wonderful; made sure I was doing well and asked me if I had any questions for him.  I re-confirmed with him that there would be no lymph node dissection.   That was a concern of mine because of what happened to a friend of mine.  Because I did not have cancer, there is no reason to take a lymph node. (that’s one of the ways they check to see if the cancer has spread)

Next came my Plastic Surgeon. Dr T.  In her usual no fuss way, she asked me to sit on the side of the bed and lower my gown.  She drew all over my breasts and chest with a blue marker, drew around my nipple, marked all sorts of stuff, she had a measuring tape and everything.  Once she was gone, I asked the nurse to come in to take a picture of all the markings she drew.  I will not post them here, they are my old breasts, you are welcome to see and share with me my NEW ones!

They wheeled my bed to the OR, where there were about 3 or 4 people already in the mirrored room.  All had hospital scrubs and gowns on, most had face masks in place.  They asked if I could move myself to the OR table from my gurney, I was able to do that (there were the same height) The OR table was quite narrow; they got me to sit on the edge of the table.  A nurse was chatting with me.

I met the anesthesiologist.  Dr. A, he was really good, asked me if I had any questions about the medications.  I mentioned that I would like to have a ‘blocker’ it was something that was recommended to me from a girlfriend that had just had the surgery.  DR A said it was called a BLOCK not blocker.  :)  The block is essentially an epidural, but much higher on your back, starting just between your shoulder blades and up.   He started messing around behind me.

Someone administered something in my IV to help me relax; actually I can’t really remember exactly when this was done for sure.

I do remember Dr A said he had to prepare the needles for the block, all 10 of them.  TEN!! You’ve got to be kidding me!?  No, he said he wasn’t; 5 needles on both sides.  He got me to lean forward; the nurse told me that although good posture is normally important, it’s not now… Lean over and curve my back.  I felt the DR poking my spine, quite aggressively actually.  I learned later that he was drawing on my back with that same type blue pen the Plastic Surgeon had used.

Below is a picture taken the day of surgery later to show the markings the anesthesiologist made for the block.




To distract myself from the 10 needles that I was going to be receiving I started chatting with the nurses.  They were so kind.

Then I woke up.

AFTER SURGERY

I wish I had this dramatic memory of falling asleep.  I don’t.  I remember talking with the nurses while Dr A was poking my back then I remember waking up.  They said, “It’s done.”  I said, no it’s not!  :)

I figured I must have fallen off the table and the nurse caught me before I hit the floor… I know this because I checked for bruises.  :)

When I went to see my Dr two weeks after surgery, he told me that in fact I was TALKING the whole time before surgery.  I was telling everyone how my husband and I met.  He looked at me and asked, “you don’t remember that, do you?”  Nope.  He said my eyes were pretty glazed over as I spoke. (I guess I was pretty animated because Dr M said he was doing paperwork before the surgery and put his pen down, turned around to listen) ….  Now I know for sure I never fell off the bed!

The time following the surgery was a bit of a blurr.  In fact I remember very little about the recovery room.  I do remember a nurse asking how I was doing… my throat  was sore, she gave me ice chips.    I do remember looking down and seeing my chest flat… the first time in many years.  I liked it.  I also know that I was not in any pain.  

You see, probably one of my biggest fears going into this surgery was the waking up after and being in pain.  I saw a loved one wake up from surgery in agony once; that stuck with me.  It was a COMPLETELY different kind of surgery, but the image stuck.

I had NO pain.

They wheeled me to my hospital room from the recovery room; I remember asking for my husband, they said they would call him and tell him to meet me in my room.

I remember sitting up in bed and thinking, man, this really isn’t bad at all!!  In fact I remember standing up almost immediately upon getting to my room to put on my underwear and bike shorts… NO pain.

I was in my room just after noon.  My husband tells me when he called at 10:45, they told him I was already in recovery and that the surgery had gone very well.

The rest of my family arrived around 1:00pm.  I remember sitting up and visiting with them.  I don’t know that I ever slept but I did rest my eyes a coulple of times.

The nurses came by every few hours to give me my antibiotic and pain killers.  I only had one IV injection of pain killers, after that one time; they then gave them to me orally.  Which was fine, I really didn’t have any pain.

I remember when doing my research that it was recommended by Drs and patients alike to stay on top of your pain medication at least for the first 3 days after surgery.  I am a firm believer that a body can heal better if it is resting comfortably.  I never turned down a pain killer when it was offered.

The first time I had to go to the bathroom the nurse brought a portable toilet for me to go by my bedside.  They were worried about my balance.

They took my blood pressure every few hours as well, but because I had bilateral surgery they had to take my pulse off my LEG!  They got this giant cuff that they wrapped around my thigh, just above my knee.  The stethoscope went behind my knee.   They did say if it had been a single mastectomy they would have simply used the unaffected arm.

My arms felt heavy,  I kept them by my side the whole time.  I had very good mobility and surprisingly, no pain.

I was able to stand and go to the bathroom the next time I needed to go (with my husband or nurse by my side "in case").  I did just fine on my own until the end.  I was able to get my underwear on my own but not my bicycle shorts. I had no strength to do it.

My throat was dry and sore at times.  I drank lots of water and the nurse brought me Cepacol lozenges, they were wonderful! They didn’t taste like cough medicine, which I hate. :)  They REALLY helped with the sore throat. I was unable to ‘pop’ them out of the package so I had someone ‘pop’ a few so I could have them as needed.

My work had sent flowers and I asked my husband to call and thank them.  I believe I even called a friend of mine and spoke with her on the phone.  Again, my memory of those first few days is rather blurred.

Before my husband left I had him help me with a few things.
  • Bring me a cup of water so I could brush my teeth
  • Give me my baby wipes to wipe down my face/neck, I was able to do that on my own.
  • Ensure that my iPod, earphones, note pad, pen, throat lozenges, lip balm, eye drops and drinking water were within reach
  • Make sure I could reach the call button comfortably when the bed was in a lying down position
  • Have the nurse stop by before he left, we asked for a sedative to help me sleep; not usually a problem but with the noises in the hospital it can be difficult.
I had the drains pinned to the inside of my hospital gown.  I had to remember they were there when I got up to go to the bathroom.  I pinned them to the side of my bra for a while but the nurse said not to do that… They needed to be lower… Gravity I was told,  plays a part as well as suction for the drains.


GOING HOME

I really slept quite well in the hospital.  I awoke feeling very rested.  I was anxious to get going.  Check-out was 10 am.  My husband and sister came around 8.

I needed help to put on my pants, socks and of course boots.  I needed help putting my button blouse on too…  But before I did, I wiped down every spot I could reach with a baby wipe.  I felt very FRESH after!  I tried to keep my arms still and by my side.



Before we left, I had a photo taken, this was actually taken DAY of surgery.. about 3:00pm. If you look you can see a drain on either side of me.

We got a wheel chair and my husband brought me down stairs to where the car was waiting.  They put me in, I put the seat back a little so I wasn’t sitting straight up.  They had brought a pillow from home to put between me and the seat belt. PERFECT.

The ride home was not fun, I felt the bumps of the road; not painful but definitely uncomfortable.  It was nice to get home.

Once we were home they settled me in the hospital bed I had rented.  Before I put my sheets on (the day before surgery) I took disinfectant wipes and gave the whole thing a good wipe down.  Especially the bed control and the cord; I didn’t want anyone else’s germs in my house!   It was actually quite dirty; my little wipes did a good job.

My care givers were diligent in giving me my Percocet every 6hrs.  Every time they gave me my drug, they wrote the time and drug down in a note book.  VERY IMPORTANT.  That way no one is giving me a ‘double’ dose and we can monitor how much I am getting and what time the last dose was given.  I could not be trusted to remember and it was REALLY easy to forget.  I was also given antibiotics to take 4 times daily for a week.  I took a Percocet and Antibiotic at the same time.

The hospital bed was WONDERFUL.  I don’t think I would have done as well without it.  I would HIGHLY recommend renting one if you are able; especially with bilateral surgery.  I would arrange myself to be partially sitting up with my knees bent a bit.  My arms stayed by my side.  I really had no desire to move them.  When I needed to get up.  I would simply push a button, it would raise my head to a sitting position and I could slide my legs off the side and to the floor.  I cannot say enough as to how much I found the bed helpful.  (I kept it 2 weeks)

My sister would also empty my drains; she would mark how much drainage there was in the same notebook as my pill intake… as well as the time.  It is very important to keep track of your drain out-put.

I was very thirsty and my throat was still sore throughout the day.  I kept taking the Cepacol lozenges and drinking tons of ice water.

The first night home I made sure I could reach my water (sippy cup), lip balm, and lozenges.  My sister spent the night on the couch beside my bed.  She walked me to the bathroom every time I needed to go (maybe twice – I was drinking tons!).  I thought at the time I was fine to get there and back; but looking back I’m really not sure.  I was half asleep and high on the Percocet… It was nice to have someone by my side "in case". 

I shuffled around, no sudden moves.  I found it hard to push the soap dispenser pump to wash my hands after… I had to bring it close to the edge of the counter to push down.  Also. putting my hands together under the water to wash and rinse them also was difficult. I would feel the soreness across my chest.  That was difficult for at least 3-4 days.


 
 
lianne_brca2
20 February 2009 @ 01:00 pm
Day 3 (26 January 2009)

I asked a girlfriend of mine who is a photographer to help me document this whole thing in photos.  She graciously agreed.  I’m sure it will be obvious to you which ones are hers and which are mine.

This one was taken the day before I went in to see the Plastic Surgeon.

         


You can see the famous Jackson Pratt drains (JP drains) which I have clipped to my bra for the sake of the photographs. 


I was informed by the nurse in the hospital to keep them pinned lower... The drains work combining suction and gravity as demonstrated in the following photograph.

     


The fluid in the drain at the moment is quite clear; at first, it was pretty much all blood coming out of them.

They were not painful or even as uncomfortable as I had expected them to be.  I did have a slight itchy spot where I assumed the drain entered my body.


Day 4

Today I felt good I had my appointment with my Plastic Surgeon. She took all my bandages off and I got my first peek at my little "foobs" - (fake boobs) I love that expression!

Surprisingly the tape came off quite well.  I peeked down and was very pleasantly surprised. As you can see from the picture there is not much swelling and not much bruising either. I had expected much of both!

     

Then she took my drains out.  Where the drain enters the body there is ONE stitch or suture to keep the drain in place, she had to cut the stitch then pull out the drains.  I did not have any pain when she did it .. In fact I did not feel a thing - at least on my left side; on the right I felt the tubing being pulld out, not painful but weird none the less. She covered the site with a Band-Aid.  She said I could shower in 24hrs.

When I got home I felt good enough to make the switch from the big painkillers to Tylenol.  Big move!  

I really expected more bruising and swelling… even some blood, but there was nothing!  They did a good job of wiping me down after surgery too, very little iodine staining either.  You can see the band-aids on either side where the drains were.

The Dr said to keep wearing the bra 24/7.  It will help with the swelling.

Also she did say there was a seroma on the top left side. Seroma is a fluid build-up under the skin; very common and not painful at all.  I had felt the fluid and just thought it was the saline in my expander.  Not the case, it was far too loose to be in the expander.  The fluid was reabsorbed without assistance
within a week or so. (sometimes the Drs have to drain it) 

She said she put about 75cc's  (75ml) of saline solution in each side at the time of surgery.  We set an appointment for 2 weeks from today to our first 'fill' or expansion.  I asked her about the tape across the incisions. Will it still be there in two weeks?  She said yes.  OK.  I'm off! 

 
 
lianne_brca2
20 February 2009 @ 03:57 pm
Day 5

I've had more discomfort today than ever. Maybe it was all the activity yesterday.. Maybe it's because the drains were taken out. Never really anything too painful ... But once in a while I feel kind of a piercing pain in what feels like the incision sight. But it passes quickly. Even though I was allowed to shower I did not feel up to it.  I just lay in my hospital bed with my arms by my side. That was the only really comfortable position.

I also feel swelling under my armpits near were my drains were taken out they are tender there.  Like a big bruise on either side.

Today I chose to take a Percocet I just did not feel comfortable.


Day 6

I slept well last night. When I woke up I felt good. I took a shower today as well. The Dr said it was fine as long as I kept the water from falling on my chest directly. It was more complicated than I had hoped.  The good news is I have been on only Tylenol today. I still have those sharp pains every once in a while but they pass quickly; for the most part I feel good I am trying to do the exercises that the hospital gave me but I don't feel like doing it.


Day 7

Sore ... And sick of being sore.  I'm back on Percocet to get rid of the discomfort.  I am getting tired of being sore on a constant basis.

I actually left the house to go to my work for a visit.  I just couldn’t stand being in the house.  It was really good to get out and see something other than my house.

For the car ride I had a pillow across my chest, as well as two smaller ones to prop my arms up.  The car ride wasn’t bad; after being out for a couple of hours I was exhausted again.


Day 10

I had my friend come for a visit and take a few photos.

       


Again, I think my foobs look much better than I ever thought they would so soon after surgery.
 
 
lianne_brca2
20 February 2009 @ 04:00 pm
2 WEEKS

I cried. For the first time, I cried. (Not that I have never cried before, I have.)  But never about this, never about my choice to have the surgery, never about my BRCA status.

I was lying in my bed, talking things over with my husband and I started to cry.  I was tired.  Fed up.  All, of being sore.  I had lived the last two weeks being constantly aware of my chest area.  Never having any real pain, but always a feeling of being uncomfortable and sore.  I was tired of feeling that way.  There is a word in French that really captured what I felt: tanné; - (fed up, sick of it). Just fed up of feeling this way.

I said to my husband, if this is what I am going to have to live with... I’d rather have no shape at all.  I'll call the Dr, have the surgery to remove both expanders, heal and be done.  No expanders, no more surgerys, no more this constant feeling of something being different; nothing more for my body to get used to.

I kind of like my flat look.  I like the change of not having breasts; I literally feel lighter, my posture is better.  The constant feeling of tightness and soreness really got to me that night.

My husband was wonderfully supportive.  He knows me so well and always seems to know exactly what to say to make me feel better.  He reminded me of the whys.  Why we chose to have this surgery.  To prevent this terrible disease from ever taking hold of me (or at least my breasts!)  He also reminded me of how much we have to be thankful for. There are so many woman who learn of their BRCA status too late (they already have cancer).  We don’t have to fight that battle.  I am blessed to know in advance, to have been given a choice to take action.  On my terms. I have MUCH to be thankful for.

He was right.
 
 
lianne_brca2
20 February 2009 @ 04:50 pm
2 ½ WEEKS

2½ weeks post-op I went in to see my PS (plastic surgeon) for my first ‘fill’ or expansion. The Dr used that trusty blue pen to mark on my skin where the ‘port’ was on the expander.



She then takes a little butterfly needle attached to a giant syringe filled with saline solution and sticks the needle into the port.  It didn’t hurt at all.. I thought  it would.  I barely felt the pin prick of the needle.

These photos were taken after that first ‘fill’, 150cc's in each expander.  Next time she plans on putting in 100cc's in each expander.  That means I will nearly 'double-up' with one visit.

    


After meeting with the Dr I asked, if I had to continue to wear a bra all the time.  She said no. I was VERY thankful.  I have begun to be hypersensitive to the clothes constantly rubbing my skin.  In fact it was getting very painful.  I got home and simply wore a loose zip shirt so that nothing would touch my skin.

I know some women find they have no feeling.  I did not have that problem.

I was also anxious to exercise again.  She said I could walk, but no strenuous exercise.  No heavy sweating.  I suppose it's because the incisions are not closed completely yet.  And of course no matter how good I feel I am just 2 ½ weeks out!  Patience!


My stitches are still there.  I forgot to ask when they come out.  I'm guessing she'll take them out in 2 weeks at my next appointment.

If you notice from the photo the stiches are internal, they are not visible.  It's actually one long thread... woven in and out on both sides, on the inside.
 
 
lianne_brca2
21 February 2009 @ 09:00 am
3 WEEKS

I was in the car with some of my family; we had just finished doing some sightseeing.  "I have an announcement to make.” I said from the back seat, were I was sitting next to my Mom.  “I feel normal!"  Needless to say, no one knew what I was talking about. It may seem like a strange thing to say, but really, it's not.  

For the past 3 weeks I have been constantly aware of my chest. The feeling of tightness, soreness or feeling my expanders; perhaps not 'feeling' them, but always aware they were there, that ‘something’ was different.

In that moment, sitting there in the car; I felt nothing, was aware of nothing... I felt normal; like I used to before surgery. 

So feeling 'normal'.  It's a big deal.  I’m getting used to the new me. 


4 WEEKS

These photos were taken 4 wks post-op.  I have still only been for ONE expansion. (About 150cc's in each side)  You can see the changes since my last set of photos:  A lot of the swelling has gone down; there are a whole lot more wrinkles.  Also the incisions themselves look much better, most of the small scabs have fallen off and the incision appears to be completely closed.

I am anxious to see the Plastic Surgeon in 4 days.  I hope she will take out the stitches and the fill will go well.  Maybe fill out some of those wrinkles.  

I will also ask her about going to work.  I hope to go back at the end of next week.  That would be FIVE weeks post-op.  I feel good but I would like the OK from her.

 
      

      

As you can see in the tank-top; I do have a bit of shape in clothes.

So far I am very happy with how I am progressing.  I have no pain of any sort.  I still feel a bit tight across my chest at times but with my exercises I'm sure that will subside.

 
 
lianne_brca2
21 February 2009 @ 05:38 pm
COMPLICATIONS

Okay, my biggest fear going into to this surgery was not the surgery its self but the recovery afterwards.

I wanted to do all in my power to help avoid any complications.  There are some complications that we, as patients, really have no control over.  For instance seroma (A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery) or even necrosis (Necrosis is death of body tissue. It occurs when there is not enough blood to the tissue).  The research I did, and I did LOTS, let me know that these types of complications I, as a patient, have NO control over.  I could not even blame my DRs.  We know going into this surgery there is a risk involved.  These two things are part of that risk.

Infection was the other worry for me.  I was really afraid of this.  As a precaution these are the things I did.  Perhaps some, or even all of them, would not have changed anything; but they gave me peace of mind.
  • I washed my hands obsessively.  (helps stop the spread of any germs I may have come in contact with too)
  • I never touched my incisions, and only touched my breasts if my hands were freshly washed
  • Every time I took my bra off, I put a fresh/clean one on. (I had 3 – it was nice to change the friction points on my body too)
  • I never wore the same top twice.  Pajama tops, buttons shirts whatever it was I only wore once, than in the wash it went.
  • I bought organic, all natural, UNSCENTED soap; I used that on my body and my incisions. I was told the unscented part is the most important.
  • I bought a whole bunch of face cloths, washed them and kept them aside. After a shower, instead of using my towel to dry my chest off; I would use a fresh face cloth.  A new towel for my body too, only once, to the laundry it went.

I don’t know if any of those things helped me at all, but I seemed to have come out okay (so far– wk4)

I did other things based on my research and advice others gave me I’m sure they helped as well.
  • The first 3 days after surgery, I kept fully medicated.  My Doctor advised me of this.  My body needs to heal; it will heal better if I am not in pain. 
  • The first 2 weeks after surgery I did very little.  I made sure to keep my hands by my side.  Tried not to do too much movement or lifting.  I’ve read many stories of women who feel really well the 2nd week; do too much and are then very sore in week 3.
  • I really didn’t force anything.  I would try to lift or move a certain thing, if it was uncomfortable… I didn’t do it.  (I realize I am very blessed to have a family around me that was more than willing to help.  Trust me though; asking for help any time you want to re-fill your water bottle, for example, gets old.)

I really think the key is to rest. You know our bodies are working hard.  Healing.  The best thing I can do is rest and let my body do its work.

 
 
lianne_brca2
21 February 2009 @ 05:58 pm
FOOBS vs. BREASTS

You know I can’t seem to bring myself to call the bumps on my chest ‘breasts’.  They are not. They never will be.  They don’t (and won’t) look the same, move the same, feel the same… ever.  My breasts are gone.  I’m not sad, I’m glad not to have them anymore.  But what I have now, well, they are not breasts.  Nor will they ever be.  

So, I have coined a phrase that is often used by women who have gone ahead of me in this process.  FOOBS.  It’s really a combination of two words.  Fake and boobs.  Fake boobs. Foobs.  I love it.  I really feel I can identify with having foobs.  I no longer identify with having breasts.

I am okay with breast mound; I am ‘growing’ two new breast mounds.  After they reach the size that I would like my foobs to be; I will stop the expansion process and have my exchange surgery.  I will then have my permanent foobs!

Perhaps this is a little quirky or odd.  I’m okay with that.

 
 
lianne_brca2
25 February 2009 @ 07:41 am
4 ½ WEEKS

The second fill.  I was worried about what the Dr said last time about putting in 100cc’s of saline.  I was afraid it would be too much, too soon.  It wasn’t.

My sister came with me to this appointment.  Before Dr. T starts anything she must get ready.  She gets four 50ml syringes and fills them with saline solution.   My sister took photos through this whole visit.  (Thank You)

As she was getting prepared, she looked at me and said I looked really good.  I asked her if I was ‘good to go’.  She said absolutely.  Running, rowing, whatever I wanted to do I was free to do… except maybe sit in a hot tub.  She did not recommend that.  I asked about my plan to start work next week.  Go for it.  Hurray!

These two photos are of the syringes and the empty bags of saline she took the liquid from.  

    

I assure you there is no pain.  On the right side I feel the pin prick of the needle and then pressure as she pushes down.  On the left, I have less feeling. (since even the surgery, my left side has been more numb) I did not feel anything except the pressure of her pressing on my foob.

When she starts to inject the saline, she goes pretty fast.  The first syringe full, I did not feel any different…  Although looking down, I can see my chest growing!  Pretty neat.  The second syringe about ¾ of the way through, I started to feel tight.  By the time she finished the syringe I felt really tight, and hard.  I told her so and she assured me, as she took the needle out, that if it was too tight we can easily remove some.   By the time she had gotten ready to do the other side; I no longer had that same really tight feeling.  It’s amazing how quickly your body can adjust.

Again the picture below documents the Dr. expanding the first side.  The following photo shows me after one side is done and the other not!  Funny!  

    

I asked her about the ‘dents’ on the top side of my expanders, she said that would be fixed at the time of the next surgery (exchange surgery).  She actually didn’t use ROUND expanders; she used horse-shoe shaped ones. (which I can see, now that I know)  I asked why, she said she finds they have less chance of moving/shifting.  Speaking of moving and shifting, do I need to be worried about that now as I start back to my exercise program?  No.  At 4wks post op, most of the risk has passed.  (I’m still not going to do any bench presses or push ups!)

Here is the type of expander she used.



I see her again for my next fill in 2 weeks.

She said that I may be sore; and I may want to take 2 extra strength Tylenol before going to bed.  She asked if I still had any Percocet from the surgery; I do.  She said I may even want to take one of those.  I decided to try to see how I would do.  I took 2 Advil around 9pm; its 9am and I haven't taken another pain killer since the 2 Advil 12hrs ago!  I had the bottle of Advil and my Percocet by my bedside in case I woke up sore.  NOPE!  I did wake up a few times, but I just changed my position and went back to sleep.  I was even able to sleep on my side for a bit.

I am also able to start using my scar cream.  I have one called Mederma.  I also asked about breast masssage; she said I could start that too.  Just massage in circular motions the skin on either side of the insicions.

I asked about my stitches.  She will not have to take them out.  They will dissolve on their own.  Just one more thing to be thankful for.
 
 
lianne_brca2
27 February 2009 @ 08:32 am
WEEK 5

Just a few days after having my fill I had these pictures taken.  As you can see I am beginning to 'use' some of that wrinkly skin and fill out a little.

             

I have more shape!!


TIRED (28 Feb 2009)

For the first 4 weeks after surgery I could barely do anything without getting tired.  It was very frustrating.  Especially in the 3rd and 4th week; I felt good, really good.  So I would make plans and go out; only for a few hours at a time.  But after that outing, I was would come home exhausted.   Just a few hours out and about and I was soo tired!  Most days all I need was to sit down and relax for a while, then I would feel better.  There were a few days when I must have over done it because I needed to take a nap when I got home.

I think, well I know, I did too much on day 14.  Two weeks post-op and I felt great!  I decided to meet a friend for coffee.  I drove myself; I was out for maybe a total of 4 hours.  We were sitting most of the time and walked around for a half hour or so.   When I got home I was exhausted.  I went up and slept for 3 or 4 hours.  Looking back now, it was too soon for me to be driving on my own.  I had to pull the chair really close to the steering wheel so I wouldn’t have to reach.  I think perhaps I should have had some one drive me.  I would not have been so tired.

I can say that between the 2nd and 3rd week is when I was really OK to drive on my own.  I would go out for small outings, never more than a few hours at a time.  I was never in any pain, but I came home tired every time.
This seemed to be the routine until just a few days ago.  In fact I would say almost 5 weeks to the day, is when I started feeling like most of my energy has returned.

Now I am due back at my work on Monday.  It will be 5 weeks and 2 days since my surgery.   I think to go back any sooner would have been difficult.  My mom reminded me that although I may feel well; my body has been working very hard in the back-round…. Healing.  

I feel ready.


 
 
lianne_brca2
04 March 2009 @ 08:16 am
BACK TO WORK

My first day back at work was felt really long.  Of course I do work 12hr shifts (8am-8pm)! aybe that’s why it felt so long!  My job actually is really great; I work at the Airport.  I help political VIPs through the airport process.  I often have down time between my activities; when I am able to rest.

I felt like a little girl on the first day back at school after summer vacation.  I was nervous, anxious, spent extra time on getting ready, wondering if anyone would notice how I had changed.  It went REALLY well.  My husband told me it would!  Those who knew I had the surgery commented on how well I looked, those who didn't just said 'I haven't seen you in a while.'  No funny looks at all!

For me the hardest part was being away for 13hrs straight! (travel time and all)  When NOON rolled around I was ready to go home.  I thought to myself, OK I’ve been here long enough! :)  I suppose that may take some getting used to again.  The afternoon went really well (easier than the morning), by the time I was done at 8, I was tired but not exhausted.

I drove home, had a bite to eat and went straight to bed.  I slept a blissful 10 hours!!  

I’m glad I was off the next day to recoup.  I only work 3 days a week and my next two days are back to back Thursday and Friday.  I’m sure by then I will have more energy.  I really do find that every day I get less and less tired.  

My friend asked me last night what % I feel better..  I would say 90-95% back to normal.  That is not just based on how I feel (I felt almost that good in week 3 and 4) but now my body backs me up!  I can go out for the day and not have to sit and take breaks! (I was doing that even at 4weeks post-op)  The good thing is that when I did feel tired, I just needed to have a seat and relax for a few minutes; I didn’t need to sleep to feel recharged.


SLEEPING

I have never had issues with sleeping through the night before this surgery.  Of course, I was also the type that needed a solid 8hrs of sleep every night to feel human.

Since the surgery a couple of things have changed.  First is that I sleep nearly 10hrs every night.  I’m fortunate not to have to get up to send the kids off to school or anything like that.  (I know a woman who did, what she would do is just take a nap throughout the day when ever she could sneak one in).  I’m thankful I am able to get all my sleeping in at night.

That being said, I cannot tell you the last time I slept through the night without waking up.  I wake up at least 3 times in the night. Not that I’m really awake and want to start my day; but I wake up, have to change positions and I fall back to sleep.  Pre-surgery I would fall asleep on my side and wake up where-ever; usually on my back.  Now, I wake up every time I have to change positions.  I’m not in pain, just uncomfortable, I move and fall back asleep.

I have been able to sleep on my sides, for a short amount of time, for a few weeks.  That is really good for me because I love to fall asleep on my side.  I have also found I am able to lie on my stomach for a bit too! (my bed is one of those soft/spongy ‘tempur’ mattress – I’ve heard stomach sleeping is easier on those)

Again, every day that passes I seem to wake up less and less.  I'm also able to spend more time on my sides before I feel that  I need to change positions.


 
 
lianne_brca2
07 March 2009 @ 03:37 pm
WEEK 6

I had my first week back at work.  It was definitely harder going back then I thought.  I think that it was because I was gone for so long.  My mid-day the second 12hr shift; I was exhausted!  I pushed through and slept really well last night.

Hopefully next week I will be even better.  

I go for my next fill in 4 days.  In these photos I have about 250 cc's of saline in each expander.

         


Like the last time, I am really looking forward to my next fill.  It's one step closer to being done with it all!


 
 
lianne_brca2
09 March 2009 @ 10:26 am
Well I do know... I like the jeans/genes.  Or at least I think they look really good on me!  This drawing was done by a breast cancer survivour, who although did not test positive for the BRCA mutations still felt it important to document.

Perhaps there will be more mutations found later ...  a BRCA3 or BRCA4.  We do know that there are still women who have a strong family history who got breast cancer at a young age and DO NOT have the BRCA1 or 2 mutations.  Perhaps there is another we do not know of yet?  Or maybe not.  

I for one, will be forever great-full to have this 'rear view'.  I could have still been wearing this pair of jeans, and just not known it until it was too late to take preventative actions.

 
 
lianne_brca2
10 March 2009 @ 06:18 am
HURRAY!!!!  I’M  DONE!!!!

I’m 6 ½ weeks out of surgery.  I went to have my last ‘fill’ today !  The Doctor put in another 100cc in each side.  This was by far the most fun expansion I’ve had.  I think it made the most difference!!  I was particularly happy to have my sister with me this time; we were able to laugh about how funny my foobs were looking and just how fast they were growing!!

My wonderful sister even agreed to take pictures for me. I was very thankful she was there with me and share in my excitement.

This first photo is when the Dr is holding the ‘stud finder’  :)  It’s actually the device she uses to find the port on the expander.  It is magnetic, when the magnet is pulling straight down, she is directly over the port; that is where she places the needle.   We are off to there races!!  You can also see my incisions seem to be healing really well.



The next photo is when she has finished filling one and just before she starts the other.. They look HILARIOUS!!!  It is extreamly noticeable now that my expanders are NOT round!



Next is Doctor adding the last 100cc to the left side. It happens so fast, and was really a lot of fun to watch this time because there was such a difference between the size I was going in and the size I was going out.  If you look just behind my left shoulder you can see the 'stud finder' with the magnet.



The final photos after both expanders were done.  There is now 350cc in both expanders.  Dr says that’s as big as the expanders are.. I can over inflate them if I want to go bigger.  I think I will be happy with this new size.  I  will let things be for a few days, try on some of my old cloths and go from there.



Hurray!


 
 
lianne_brca2
11 March 2009 @ 07:22 pm
A BAD NIGHT

Before going to the Plastic Surgeon yesterday, I took 2 Advil; around 1:00pm.  I did not take any more until about 9:00pm when I was thinking about going to bed.  I was starting to feel some real tightness on my left side.  I decided I would take a Percocet; if nothing else it would help me sleep.

It didn’t.  I woke up often and had to change positions every time.  I would lay on my back then my two sides.  Every time I moved it was difficult, and painful.  I felt a real pulling across my chest, it hurt to use my arms to move.  I had an especially hard time moving from my back. I actually woke my husband up a couple of times to have him push me to my sides.  I could generally move from my sides on my own.

Not fun.  But even when I got up this morning (much earlier than I wanted) I thought to myself…  This is SOO worth it!  I almost celebrated the fact that I have this last milestone to get over…  Because I’m done!!  I’m done!!  It really is amazing.  Any pain and discomfort is worth it.  I know it will be better within 2 days.  Sure those two days will not be fun, and if it gets too bad, I’ll call my Plastic Surgeon and have her remove some saline.  I don’t think it will come to that.  If there is something I have learned throughout this whole thing is just how fast the human body adapts or deals with a new situation.  Very Neat.

I took some time today to apply some lotion to my foobs and massage them, gently, it hurt to touch them.  Not really to touch them, but to press on them, I felt my muscle.  So I spent a good 10 minutes or so massaging them.  I think it helped... If nothing else it helped me mentally.  It was nice to feel a full round(ish) mound again on my chest.

It is now 7:00pm, I feel much better, I just woke up from a nap on the couch and feel good.  I think I will still take a Percocet before going to bed tonight again, just in case.
 
 
lianne_brca2
11 March 2009 @ 07:27 pm
FINISHED FIRST STAGE

Friday, January 23 2009; Surgery; 75cc of saline in each expander.
Tuesday, January 27 2009; check up with Plastic Surgeon. 4 days post surgery. Took out drains.
Wednesday, February 4th 2009; check up with Surgeon, pathology results clear!
Tuesday, February 10th 2009;  first expansion, 75cc’s of saline added to each expander, total 150.
Tuesday, February 24th 2009; second expansion, 100cc’s of saline added to each expander, total 250 in each
Tuesday, March 10th  2009; third and FINAL expansion, 100cc’s in each expander.

Dr. T told me after we had finished the last fill to call the office set an appointment to go see her in May.  We will do the exchange surgery in June.  She wants to let my body finish healing as it is now.  She always leaves at least a month between the last fill and the exchange surgery.

47.  Forty Seven Days from start to finish.  OK,  granted it’s not the ‘big’ or final finish, but at least I’m done for now!

I’m not gonna lie, I am looking forward to having my final foobs.  The ones I have now not only look hilarious but they are rock hard!  I can touch my foob with my finger and there is ZERO give.  It’s like you are touching a rock!  It will be nice to have nice mushy ones again.

I try not to look ahead to much.  My mother once shared something with me when I was young.  They were words of wisdom that have stuck with me through the years and I try to live by.  She said it was important not to constantly be looking ahead.  Stop focusing on the next event or milestone in my life.  Stop and enjoy were I am now, in this moment.  This moment will not come a second time. On the other hand there will ALWAYS be something else to look ahead and be anxious for.  Enjoy living each experience fully, because there is always something else coming.

She’s right.  For example: last week I was looking forward to being done with my fills, now I am looking forward to my exchange surgery, then I’ll be looking forward to the nipple reconstruction, then I’ll be looking forward to what my foobs will look like once they are done healing.   It’s always something else.  So I will live in this moment and be thankful that my surgery went as well as it has and that I can CELEBRATE the stage I’m at.  

I’M DONE WITH EXPANSIONS!!!
 
 
lianne_brca2
13 March 2009 @ 05:49 am
48 HOURS

So it's been just over 48 hours/2 days since my last fill with the Plastic Surgeon and I am pain free!!  I had my fill Tuesday afternoon and felt fine, Wednesday I was really sore, Thursday was better but still uncomfortable.  Friday when I woke up... nothing!!   Pain free!   I feel comfortable once again.

I have said it before and will say it again; it is simply amazing to me how our body's are able to adapt to new situations!

I am still not sure if I want to go a little bigger or not...  The choice is proving harder to make than I thought.

 
 
lianne_brca2
20 March 2009 @ 05:53 pm
WEEK 8

These photos were taken two days shy of my 8 week post surgery mark.  It really is incredible to look back and see how far I’ve come.

       


I have been pretty consistent with putting my scar cream on in the morning and before bed, I don’t often do it during the day (it says up to 4 times a day).  I also have been trying to massage my breasts on a consistent basis as well.  I use Palmers cocoa butter and rub that over both sides.  It really is odd because for over 60% of my breast mound I still have no feeling, especially on the underside and the outside.  I seem to have more feeling on the inside between my foobs.

I also decided I would go for one last fill.  I have been trying on my “old” cloths and I think I will be more comfortable just a little bigger.  The Plastic Surgeon said I may lose a bit of projection at the time of the exchange surgery, I’m don’t think I would be very comfortable being smaller than I am now.

I see her again in 2 weeks for that next fill; I also requested we go over the final surgery at that time as well.
 
 
lianne_brca2
27 March 2009 @ 01:24 pm
2 MONTHS – 9 WEEKS

I am back at work full time; I have been for a few weeks.  I feel really good.  I really feel quite the same as I did before my surgery.  I’m so thankful that my surgery went as well as it did.  I still sometimes wake up in the night but it is nothing significant and I am able to fall back asleep after I change positions.  

There was a time last week when I was getting to be more 'afraid' of my exchange surgery.  Everything has gone so well for me; I was afraid by having a second surgery it may 'mess' things up! :)  I was thinking maybe I can just live with my expanders forever!  That was until someone sent me a picture (via email) of what they looked like after they had their permanent implants in.  WOW, they were beautiful!   I am really thankful things have gone so well for me and I like the way my foobs look (in cloths anyway.) Those photos really gave me something to look forward to!  I can hardly wait to have squishy foobs!

I have been very diligent over the last week or so to massage my breasts both in the morning and at night…  I can assure you I will never want to use cocoa butter ever again when this is done!  (It smells like foobs!)

I think the massage has helped the skin relax… my foobs do not feel anywhere as HARD as they did when I got home from that last fill.  I still have to wait just over 1 week until I can have my next fill (my DR is off for a week), I’m looking forward to having that done and over with now too.

I have been trying to remember to use my scar cream too… I put it on in the mornings for sure, sometimes I forget at night.

These photos were taken today.  9 weeks from surgery.

      

Even this far out from surgery once in a while - maybe once a week I get a muscle spasm across my chest, it stops me in my tracks, it is a sharp pain that goes away almost as fast as it hits.  I just had one yesterday; I flinch and it’s over.  My husband looked at me and said “Still?”  (as thought to say, you are still getting those pains).  I said yes, but totally worth it.



 
 
lianne_brca2
07 April 2009 @ 02:10 pm

SURGERY CONSULTATION / FINAL FILL

I met with my Plastic Surgeon again.  My goal was to get one last fill.  Not that I do not like the size that I am.  I do, however I have been informed that after the exchange surgery I may loose a little bit of projection.  I was not comfortable with that idea; so I thought we would have to go bigger.

When I met with Dr. T we went over how much saline I already had in each expander… 350cc.  Then she had a chart where she compared the size of the expander placed and the compatible implant sizes. Then she took a measuring tape and took a few measurements. 

This is when the ‘art’ comes into the whole deal -  the second surgery.  That’s when the Plastic Surgeon gets to do “their thing” and make them beautiful!

She told me she could replace my expander with ____ implants (certain name and size – that I can no longer remember) it would fill in the dent that I have now as well as be wide enough to fill my chest, I would loose about ½ cm of projection.  I have about 6cm (2.36 inches) of projection as is stands now. She knows this based on the size expander she put in as well as how much saline is already there.

When I shared with her my concern about not being comfortable with loosing any more projection and that I would rather have more than less.  She consulted the comparison charts again.  You see you can’t just pick ANY implant, it has to FIT.  That depends on many things, size of expander, how much skin is available, how wide is my rib-cage ect...

After a bit of checking numbers I was advised that we could use a different implant that would still fit and yet give me just a little MORE projection 6.5cm (2.55 inches).  She also told me that because I have enough skin we will not have to do another expansion.  At the time of this surgery she would also take care of that little pucker that I currently have at the top of my incision.  A little ‘nip’ and one stitch should do it.

The second surgery will be preformed by making an incision at the IMF (inframammary fold), under the 'breast' and proceding with the exchange.  I love that the incision will be done there!   I will not see it at all!!

I was also given my surgery date.  June 4th.  The hospital will call me the day before to advise me of what time I need to be at the hospital.

The scheduled OR time for the exchange procedure is 1 hour; unlike the 2 ½ hours for the original surgery.


 
 
lianne_brca2
10 April 2009 @ 04:56 pm
2 ½ MONTHS – 11 WEEKS

I noticed today after my shower that my incisions seem a little irritated.  There is dry skin around too…  Both seem very unusual for me.  I will stop the Mederma and Cocoa butter treatments until things clear up.   I have an OIL that I will use instead.  

There is no pain, just a bit of redness, I took a couple close up pictures too so I can keep an eye on things.

       

On a brighter note, check out the shape!!  I like the side view; can you just imagine how nice they will be once those DENTS are gone!!!  

I really am trying hard to take things day by day but it will sure be nice once I have my exchange surgery...  Squishy foobs!! 
 
 
lianne_brca2
15 April 2009 @ 06:02 pm
RUNNING

What a FEELING!!!

I just got back from my first long walk and run since my surgery.   Let me set the record straight I am not a big runner perhaps I am more of a casual jogger.  

It was a beautiful day so I decided to strap on the running shoes and see what I could do.  I defiantly couldn’t jog very far but WOW, what a wonderful feeling!  I put on just a plain t-shirt over some light pants.   Obviously no need for a bra!!   It was wonderful!  I loved it when I caught a breeze and I felt the wind against my skin under my shirt.  So free!!   

I think I will really enjoy jogging this year.   It is so much less of a hassle not to have to squeeze into my ‘good’ sports bra to keep everything from moving.  WHAT A CHANGE!

Truly a wonderful experience.


SLEEPING


I can tell you that for the past week I have been sleeping through the night without waking up at all!   That too is quite an accomplishment.  I can hardly believe it.  I had resigned myself to the fact that I would not be able to sleep through the night until after my exchange surgery.  

I was wrong.  :)


 
 
lianne_brca2
28 April 2009 @ 09:36 am
MOURNING THE LOSS
 
Honestly, I never thought I would feel the need to mourn the loss of my breasts.  I thought I had prepared myself well enough (mentally) before the surgery that I would be fine with it all after.  Don’t misunderstand me, I’m okay, I just feel a little sad.  In no way am I regretting my choice or wishing I had done anything different.  I wouldn’t change a thing.  I just see other women with their natural breasts and consider that I will never have that again.

Perhaps it is because of the warm weather starting and women beginning to wear less and less but over the past week or so, I have been obsessed with looking at other women’s breasts!  I look at them and I admire the way the fall, the way they move.  I was at the Pharmacy yesterday and the woman serving me was wearing a beautiful scoop neck shirt and her breasts were just lovely – I almost told her just how beautiful I thought her breasts were!!! :)  It makes me sad to think that I have lost that movement that I used to have.  The natural way my breast used to be.  

Then I read a post by a woman that called her expanders ‘turtle shells’.  That’s what they are!!! Little turtle shells!  I have been more conscience also of how it must feel to be on the receiving end of a hug from me.  They must feel my ‘turtle shells’…  I never really gave it much thought before.  I am a ‘hugger’, I always have been and I think people do not touch each other enough.  I love giving hugs and I love receiving them; it was one of things I missed the most in those weeks after my surgery.  I missed hugging my husband! (Others too)  When you get a hug from me you can be sure you will feel some love (and I guess for the moment you will also feel my expanders).

Once I have my exchange surgery I will have some softness to me once again, I’m not gonna lie, I’m looking forward to that very much. I know they will not move like my 'old' breasts but at least I won't be as self conscious about touching people as I seem to be now.  Strange that it never really bothered me until this week.  

I’m quite sure that this too shall pass.

 
 
lianne_brca2
02 May 2009 @ 09:01 pm
3 MONTHS / 14 WEEKS

So I wanted to share with you some up to date photos.  Here's a twist, in some of them I have CLOTHS on !!  I wanted to show you that expanders are not bad to deal with... even in the summer.

Here goes..

   

Of course as usual, here are my foobs.... au naturelle...

   
   

As you can see the redness that was showing last time is gone.  I think it was the combination of the cocoa butter lotion and the mederma scar cream that cause the reaction.  I have been using BioOil since then and I really like it.

 
 
lianne_brca2
05 May 2009 @ 07:12 pm
POSTPONED

I got a call from my Dr's office today telling me my surgery date of June 4th has been canceled due to an emergency.  We re-scheduled for the 25th of June.  I am not overly upset, just disappointed.  It delays my healing process by almost 3 weeks, I wanted to be 'all done' for the summer. 

The part that was the most frustrating for me is that I had arranged with work to have the time off, got all my shifts covered and now I have to change it all.  I hate that this has to affect other people and not just me.

The other thing is that Dr T wants me to come for a Pre-Op appointment on June 1st.  I thought we already went through everything.  Maybe not, or maybe we did and this lady that called didn't know it.  Either way I don't mind going to see her again, I am doing all my 'implant research' right now.  It will be nice to go over everything with the Dr one last time before surgery.

 
 
lianne_brca2
11 May 2009 @ 12:42 pm
STUCK IN BED

Every once in a while I get STUCK in my bed.  I wake up, and I cannot move.  It happens when I sleep on my stomach.  I am normally a 'side-sleeper'.   Sometimes I move to my stomach, like this morning; then I wake up and I find I can't move.  It feels like the muscles across my chest are completely frozen or stiff.  It hurts.  It feels like I cannot move.  When it happens, I usually wake my husband up and have him take me by the shoulder and roll me over.   I am able to do it on my own, it takes a lot of concentration and effort; not to mention it hurts.  As soon as I am no longer lying on my expanders the relief is immediate.

I hope this will change once my permanent implants are in.  Or maybe it will pass over time.

I should mention it doesn't happen every night.  One of those weird side-effects of having the surgery.

 
 
lianne_brca2
29 May 2009 @ 03:40 pm
FORCE
www.facingourrisk.org/

For those of you who have not heard of the FORCE I would like to share with you.  I came across this website when I was just about done my research in regards to going ahead with my mastectomy.   FORCE: Facing Our Risk of Cancer Empowered is website set up by a breast cancer survivor (she is so much more than that too, if you have a chance to get to know her).  FORCE's Mission is: To improve the lives of individuals and families affected by hereditary breast and ovarian cancer.

It has really been an invaluable tool for me from the time I found it.  There is a message board where we can post questions, seek others counsel or just vent our frustrations.  It really is a BRCA community.  Statistics say only 1 of every 800 people have the BRCA mutation, on FORCE we all do.   All of a sudden this 'unreachable' 1 in 800 is at our fingertips (literally).

As wonderful a resource as it is; it does not give me the excuse to not do my OWN research to find answers to my questions.

To all my FORCE friends reading this; I thank you from the bottom of my heart for all the support and wisdom you have given/continue to give me through this journey.  It would have been a very lonely road without you.


 
 
lianne_brca2
07 June 2009 @ 03:09 pm
PRE-OP
 
I had my PRE-OP appointment last week.  My surgery is still scheduled for June 25th.  I have booked a follow up appointment for 4 days later.
 
With just about 2 weeks until my surgery I am very anxious to have it done!  I just want to wake up and have it over with.  Perhaps it is the knowledge that I will soon not have my expanders but I have been noticing just how uncomfortable they really are... 
 
I am feeling more nervous about the surgery as well.  I find my surgery seems to be always on my mind.  I am worried more this time about the post-op pain.  With my initial surgery I was able to have a spinal 'block' (an epidural of sorts) and I really think that played a big role in why I had so little pain after the first surgery.  How does one 'get ready' to be in pain?  I'm not sure... I guess maybe to acknowledge it is coming at the same time not dwell on it.  I was given a prescription for pain medication, I will fill that before the surgery and be "armed" with it when I hurt.  I still believe that I would rather heal 'high' and pain free than not take any medications and have discomfort.  That being said, I guess I AM ready for the pain.  :~)
 
Compared to the first surgery (according to those who have had this done already) this one is supposed to be much easier.  All the 'work' is done.  The mastectomy is done the expanders have been placed and filled, the 'pocket' is made.  So this surgery simply means making an incision and doing the 'switch'.  Sounds easy, right? 
 
Dr T will be going in UNDER my 'breast' near the IMF (intramammary fold).  I will end up with what they call an 'anchor scar' or breast reduction scar.  So the incision will be bellow my current one and she will change my expanders to my permanent implants.  She will also 'fix' the extra/loose skin around my foob as well.  There is a small pucker at the top of both my current incisions and I have asked her to deal with those, she said she would.
 
I am trying to prepare myself mentally for what what will be happening.  I am not sure if I will have drains or not (I forgot to ask).  I am also trying to prepare for the shock that I will have at the change of my appearance.  As unattractive as these expanders are, I am used to them.  They are me.  I know what they look like, not that I think they are NICE, but it could be worse.  Now it will change... I've had 6months with my expanders, will it take me 6months to get used to my new implants?  Time will tell.
 
I must admit I am looking forward to giving my husband a hug and not having these 'turtle shells' on my chest when I do it!!!  I keep repeating to myself... "squishy foobs, squishy foobs, squishy foobs.." 

 
 
lianne_brca2
09 June 2009 @ 03:12 pm
IMPLANTS  (09 June 2009)
 
So how did I pick my implants??   I didn't want to get into this too early in my journal but I have known what kind of implant I am going to have since almost the very beginning.

First, I should say there is one BASIC choice when choosing permanent implants.  Saline or Silicone.  Within both saline and silicone categories there are MANY different shapes, sizes and consistencies.

Here is a quick run-down of the two:

Saline.  Many people chose saline implants because they are afraid of using silicone.  I want to mention here that even saline implants have a shell made of silicone.  A real benefit of using saline implants is that if ever they rupture (leak) it is completely harmless;  your implant will deflate and the saline (salt water solution) will be absorbed by your body.  Obviously it is very easy to tell if a saline implant has ruptured.  The flip side of the saline implant is that they can be hard (especially when compared to a silicone implant), also they come in a variety of sizes and their shape is generally round.   Also, the incision to place the saline implant can be quite small because the Dr can "place" it when it is empty and then FILL it once it's in the pocket.

Silicone.  People still fear silicone implants due to the experiences with them back in the 80/90's and rumours that they caused different auto-immune diseases.  As far that goes, 'they' say there is no proof to link the two.  Either way - it really isn't an issue for me today.  The silicone used back then and today's silicone are completely different.  Ruptures can occur with silicone implants as well and in years past that would mean a slow 'seeping' out of silicone, people would have migrating lumps of silicone in their body.  Often seen on their chest and arms.  That does not happen anymore.  Even in the case of a rupture, the 'new' silicone what they call 'highly cohesive silicone' does not migrate, in fact it doesn't move at all.  The fact that the 'gel' does not shift will also help prevent 'rippling' which can happen with saline or some less cohesive silicone.
 
The two big breast implant companies carry this new silicone; Allergan (Inamed-formerly McGhan) calls them the "Style 410."  Mentor calls theirs the "Contour Profile Gel or CPG." www.mentorcorp.com/global/breast-augmentation/contour-profile-gel.htm  The style 410 and the CPG are widely known as 'Gummy Bear' implants (I'll go into that in a bit).  Currently the Gummy Bear implants are only available in the US through Clinical Trials but are widely available in Canada, Europe and other Countries as well.
 

The implants I will be getting are by Allergan Style 410. Their official name is Natrelle Highly Cohesive Silicone-Filled Breast Implant (Highly Cohisive Shaped).  Allergan's breast implant is made by Natrelle.  They make different 'kinds' or styles of implants, the 410 is just one option available: www.natrelle.ca/options.asp  For a complete list and size of Allergan products (including these implants) check out their catalog: www.allergan.com/assets/pdf/natrelle_catalog.pdf


NATRELLE STYLE 410 ( ALLERGAN 410)
 
The 410s (as I will refer to them) were developed with the industry’s highest level of cohesivity.  When it comes to Silicone Implants.... it all comes down to how cohesive they are.  This is how any silicone implants are different.  Cohesive is a word used to describe how well the silicone 'sticks' together.  This style (the 410 as well as the Mentor CPG) is also being called the 'gummy bear' implant.  When you have a gummy bear and you cut it in two... does it leak?  No.  Such is the case with these implants.  They are so cohesive that when the are cut there is no movement or leaking of the silicone gel.
 
These are a couple of pictures to show the difference...

   

As you can see the first photo 410 vs. standard round gel - both look fine lying on their sides.  The second photo: 410 vs. standard round gel - cohesitivity is about maintenance of shape and freedom from folds.

   

As you can see, even when the implant is cut... the 'semi-solid' gel goes nowhere.


MORE ON IMPLANTS - STYLE 410
 (20 June 2009)

The 410 implants that I am getting sometimes get bad reviews, people do not seem to like the way the LOOK when they have them; a common complaint is that they look flatter or smaller than other implants or even our expanders.  This is because of the SHAPE of them.  

First you must understand how an implant is sized or measured: All implants have 3 sets of measurements which determine the size of the implant.  Height (that is the bottom of the implant to the top - vertical); Width (from one side to the other - horizontal) and Projection (back to front - how far it sticks OUT from the chest wall).

A combination of these measurements determines the size.   For example: my expanders are
14 cm WIDE,
8.5 cm HIGH and
6.0 cm PROJECTION. 
This expander holds 350cc's of saline solution.  Imagine if they were round?  That would mean the HIGHT would be 14 cm too... Do you think that with 350cc/s of saline it would have the same projection?  Of course not.

The same goes for implants.  If my implant is 14 cm WIDE and someone else's is 12 cm wide, the same 'amount' of fill will lead to VERY different results.  I am a fairly large person; a 12cm WIDE implant would look tiny on me.  Our chest size (diameter really determines what size we can fit)

The plan is to change my current expander to an implant that measures
14.5 cm wide (that means a little wider than I have now - I will ask her to place them a bit closer together)
13.2 cm high (that will fill the 'dent' that I have now) and
6.7 cm projection. 
That will be 550cc/s of silicone.

The REASON the 410 have developed the reputation of being 'flat or smaller is because their PROJECTION is at a different spot on the implant.  I have created a drawing to demonstrate what I mean. 

We will assume first of all that BOTH of these implants are
14 cm wide,
13 cm high and
6.0 cm projection. 

Can you see how DIFFERENT they will look?  Their sizing is the SAME and yet will look very different.  Their PROJECTION happens/occurs in very different places.

I have to realise that my implant will be slopped and as such may give the impression of being 'flat'.  I am aware they will look different and I am ready for that.



STYLE 410MX = MODERATE HEIGHT / EXTRA FULL PROJECTION
(11 Sept 2009)

These are the ones I had placed.  The 550g size.  At the time of surgery Dr T said she ordered several different sizes, I asked her to place the largest one she could.  I would rather end up "too big" than feel too small.  As it turns out the implants I have are .5cm wider than my expanders.

I think it worked out quite well.

www.allergan.com/assets/pdf/natrelle_catalog.pdf

 
 
lianne_brca2
24 June 2009 @ 08:47 am
6 MONTHS POST OP - DAY BEFORE EXCHANGE  (24 June 2009)

Here we are.
 
I went to the Hospital Monday morning to get some blood work done and of course the requisite urine sample.  Things have been so busy at work recently I haven't been able to think (or worry) too much about this surgery.  In fact I just realised last week that I had not filled my new prescription for my pain meds.  I picked them up this weekend.
 
I have also compiled a list of things to buy/prepare/bring for my surgery.  Since it is only a 'day surgery'.  I do not need to pack overnight stuff.
 
To bring:
  • front closing bra (as requested by Dr. T for after surgery)
  • lip balm
  • eye drops (I get dry eyes)
  • hair band
  • crocs (non-slip at hospital and comfy)
  • pillow (for the ride home)
  • front closing light shirt (it's supposed to be warm)
  • comfy pants
  • socks (incase I get cold feet)
  • iPod
  • camera (have a photo taken before exchange)
  • bike shorts (for under hospital gown)
 To Buy:
  • unscented/all natural soap (for when I am able to bathe)
  • baby wipes (for UNTIL I am able to bathe)
 
Prepare:
  • put fresh sheets on the bed
  • make sure my button front shirts are within easy reach
  • pull out my favourite movies
  • start taking stool softener a couple days in advance (anesthesia & pain meds will constipate)

So I think I'm ready.  I need to get my house in order today; get some laundry done, change sheets and set up a 'comfy spot' for me in the living room.

Of course I must include photos with my last post before my exchange. :)  Over-all I am very happy with the way they look.  I think my scars have faded nicely.

         

I have a few things to ask/mention to Dr. T before my surgery...  I seem to have some 'loose' skin on my left side.  This next photo shows what I am referring to.  I have also included one with my arms raised... the 'dents' of my horseshoe expanders are very clear...

    

Aside from the extra skin on the left there is a small pucker at the top of my current scars.   I do not like them.   So, I will ask Dr. T to remove any extra skin on the left and also to deal with the little pucker.  Not a huge deal, but something I would really like to see gone.

So there you have it.  I'm ready.


EXCHANGE SURGERY  (26 June 2009)

I made it through.  It is the day after my exchange and I cannot believe how good I feel.  I wonder how much of it has to do with feeling good emotionally as well.  It is such a relief to be DONE!

This is NOTHING compared to the first surgery.  Even without the block the pain is VERY manageable.   My husband has been giving me my pain killers every 4 hours; we will continue that for a good 24hrs post surgery.  I am a big believe in not trying to 'push' through the pain; I think I will heal better if I am not suffering.

This is how my day went down.

Hospital called to ask me to come in for 8:30, surgery was scheduled for 10:00 (or 10:30).  I was too fast from midnight the day before.  We leave the house in plenty of time and there at 8:00am.

The nurse very kindly brought us to a semi-private room (which we had to ourselves all day).  Gave me a gown and told me to strip and put the gown on.  She came back, took my vitals and temp (all is well).  She asked me if there was any change in my health and did I have any jewelry/piercings or any other metal on me?  (In case something goes wrong during surgery and I need any other care -MRI- they do not want to have to worry about those things)

She advised me when the time came; someone would bring me down to the OR.  I would meet briefly with my surgeon before going in and they would put the IV in when I was brought into the OR.

We waited and waited.  They didn’t' even come to GET me until about 1100am.  I left my husband with a kiss and a prayer and off I go.

They wheel me to a waiting area with about 4 other beds.  We were pretty tightly packed.   The pre-op nurse came out to go over my information: confirm my DR and my surgery.  Asked me if I had any questions, I didn't.  I waited some more.  I actually rolled to my side and fell asleep for a bit.  I woke up around 12:15.  My 'roommates' were coming and going during this time (there were 4 OR rooms in operating order).

Dr. T came to see me and I showed her my expanders for the last time.  She had her blue marker and the first thing she went to mark was the pucker on both sides of my expander.  She had a look at the shape and marked the incision line for this time.  UNDER my 'breast', I will have what is commonly known as an anchor scar or breast reduction scar.

She asked me if we wanted to create my nipple at this time as well.  I said no.  I would like to wait (I'm still not sure if I will do anything at all in the way of nipples... maybe simply a 3-D tattoo)

We discussed using the largest implant we had ordered and she mentioned to me, that because of the way they are shaped they may seem flatter than my expanders.  I understand (more than she realizes I think).

The anesthesiologist came out to introduce himself as well.  I mentioned about the block that I received last time (at a different hospital).  He was familiar with it was but has not done many and would prefer not to do it.  I think if I had insisted he would have.  He asked if I had any reactions to any of the sedatives the last time and how I was feeling over all.  Very good.

Then someone came to get me and wheeled me into the OR.  Big room with about 4-5 masked individuals.  I transferred myself from the gurney to the table, I met a nurse, and a second anesthesiologist who started the IV (she actually numbed the area before inserting the IV - nice) I can't remember who else...

I started feeling a little dizzy, like the room was spinning.  I mentioned this to whoever was listening and the anesthesiologist mentioned he had given me something to help me relax...  sure enough, the dizzy feeling went away and I felt very peaceful.  The nurse put an oxygen mask on my face and told me to breathe deeply, it was just oxygen she said, the other meds would be administered via IV.   I breathed then I guess I fell asleep.

When I woke up I felt really sleepy.  I thought about falling back to sleep but I had pain...  I felt a very strong pressure on my chest.  The nurse was by my side and asked how I felt. I told 'I hurt' she immediately gave me something via IV.   I suppose a couple minutes passed the nurse never left my side; I mentioned I was still having pain.  She gave me another shot of something.  Almost immediately I felt relief; almost as though all my body muscles were able to relax.  (I didn't realize I had been tense)

The very next thing I asked was if the nurse could pull my gown down so I could have a peek at the new me.   As soon as I looked down, I smiled.  Yup, I have foobs!  They looked HUGE to me!   No more dents!

I asked when I could go to my room; she could tell I was anxious to get out.  She asked if I had people waiting for me... I said my husband, my sister and my Mama.

I noticed right away that I had quite a bit of range of motion in my arms.  Not that DEEP tissue stiffness I had after the first surgery.   The first surgery although I did not have much pain, I was STIFF and my muscles were sore.  I remember walking to the bathroom all hunched over and unable to press the soap dispenser.  NOT this TIME!!!
It wasn't long before someone took me back upstairs to my room.  My family was in the hall; as soon as I saw them I reached up and pulled my gown down... "Not bad, eh?" is what I ask.   Smiling, they agree.

The nurse came to get take my vitals and told me I could try to get up (with help) in a half hour.  They were concerned that I would be dizzy.  I chatted with my family and called a friend.   My husband took this picture for me in the hospital.  First impressions...  not bad!  :)



I was told I would not be allowed to leave until I had urinated.  After the nurse came back to take my vitals again, she said I could get up and go to the bathroom.  I have to say at this point just HOW DIFFERENT it was standing up for the first time when I compare to my hospital stay post mastectomy!   INCREDIBLE!  I made it to the bathroom with support (just in case) and had gone to the bathroom without difficulty.

So I am ready to leave, I want to leave.  I wanted to go home.  Under ONE condition... VERY important, I wanted to make sure my pain meds were CURRENT.   I did not want it to be time to take another pill in the middle of my drive home.... what if we hit traffic?  The nurse came back in to check how things were going, I said we were ready to go but wanted to check on when I could take my next pain medication.  As it turns out I was due.  I took my pills, we waited 30-40min to make sure they had 'kicked-in' then off we go.

I had a pillow with me for the drive home, between my body and the seatbelt.  I couldn't help compare the drive home to the first surgery, I remember feeling every bump and jostle after my mastectomy.  I felt NOTHING this time.  Nice.

I got home and settled onto the couch.  I was starving.  My hubby gave me toast.  Those were the tastiest pieces of toasts I have ever had!  Then I snacked on veggies, then dinner, spaghetti.  I was hungry.  Of course I drank, drank and drank more water.  I want to get the anesthesia flushed out of me.

I'm not sure what time, but I fell asleep on the couch.  I woke up around 8:50 and my husband helped me get to bed.  I brushed my teeth and off to bed.   One thing that has not changed since the first surgery is the need to sleep on my BACK.  Wasn't a fan then, still not a fan now.

Good news is that I can actually get in and out of bed without my husband's help!  Again, BIG change from the first time.

 
 
lianne_brca2
26 June 2009 @ 09:45 am
DAY 1

I woke up feeling a little stiff this morning.  Once I was up and moved around a bit I felt better.

Despite being up for a couple hours in the night I feel very well rested.  I bushed my teeth, washed my face and wiped myself down with baby wipes.  FRESH!

Then I hurried downstairs to get my husband to take my Day 1 pictures.  Here they are:

         

I think they look pretty good!  I really understand what is said when they say they 'look' flat.  So far I am very pleased with them.  

Dr T said if I wanted to I could shower on Sunday or Monday (surgery was Thursday).  Again, no direct water flow on the chest and I must be sure to dry off well, we have a VERY warm weekend forecasted.  Maybe I'll just sit in the tub, water to my waist.

The plan today is to stay in, watch movies, make a few phone calls.  I feel well enough that I could go out, but then I reason with myself and think how foolish that idea is.

REST... REST... REST... how many times are we told this?  Too many, and yet when we feel good, it's one of the hardest things to do.

When I take a deep breath I feel soreness across to 'top' of my chest.  Dr T said this would happen because she had to create space for the implant up there, remember how low my dented expanders were?

I feel soreness across the muscle going to my arm pit, especially on the right side.  My range of motion is good I can lift my arms straight in front of me 90* easily, the side too, although I feel a bit of pulling to the side.

All in all, very encouraging.

*****

Day 1 for me ended badly.  OK, perhaps not badly but worse than I thought.  I seem to be having a lot of muscle pain across the top of my chest.  Dr T mentioned I may feel this because she had to create room for the top of the implant.  I feel a tightness from shoulder to shoulder.  

As long as I am moving everything seems to be okay.  After an hour or so of lying down or sitting in one position;  it HURTS to get up, I feel gravity pulling at my foobs and a tightness all across my chest.  The good news is it lasts for only for 5-10 seconds, then once I start moving again, the pain goes away.

I want to describe it like the day after you have done WAY too much exercise and all your muscles are stiff;  you wake up in the morning and it HURTS, then you get up, get moving and it works itself out.  That  seems to be how it i
s.

So I want to keep moving so I don't feel sore, but I know my body needs me to rest to heal.  So I must.  One thing is for sure, I am staying on my 4hr/pain med schedule.

 
 
lianne_brca2
28 June 2009 @ 09:16 am
DAY 2 (28 June 2009)

Good news is I slept a full 10 hours!  Even with being woken up every 4hrs for my pill I slept 10 hours!  Wonderful!

However, when I got up I was sorer than I was on Day 1.  I think that is odd, and yet when  I consider the way muscle pain seems to work, it always does seem to hurt more the second day after your big exercises.

I still had that really sore muscle feeling right across the top of my chest.  It took a few minutes of being up and standing for that to pass.  Then I would feel fine.

I lay on the couch and watched movies in the AM, when it was time to get up I would always hold my breath, and stand very still till the pain passed, not long, just a few seconds.

I took short walk down our street and all of a sudden was exhausted.  Not sure if it was the walk (it was SHORT 1/2 block) or what it was but I was tired.

I went to bed around noon and slept the rest of the afternoon away.  My girlfriend came over to take me out in the evening, a 'girls night' BBQ and swimming (no swimming for me of course).  She came a braided my hair (I think I will go to a salon to have it washed Day 3), and drove me to our friends place.  I took my pillow in the car to have across my chest, but the ride was surprisingly easy.

A good night out too.  Of course I was not the life of the party but I was able to sit and enjoy good company and good conversation.  It really was good to get out.  I remember after my first surgery at DAY 7 I was going crazy having not left the house.  This was very good for me.  I was very careful not to overdue anything.   It was hard for me not to help with the setup / clearing of the table, but I think my friends understood! :)

I did leave earlier than the others I got pretty tired all of a sudden.  My husband came and picked me up, took me home.  

We decided after my pill at 11pm if I could try sleeping through the night without waking up for my 3am dose.   Sure, we'll try.  I slept until 6am!  Then I asked for a pill.  Not bad!



DAY 3 (29 June 2009)

I woke feeling quite rested.  Getting up this morning from my bed hurt about 50% LESS than it did yesterday.  That's nice.

My hair is dirty so I may get my husband to drive me to a local salon to have it washed.  I have been doing pretty well with my baby wipes on the rest of my body.

I am really looking forward to be in 'unwrapped' tomorrow!!  Hurray!

I chose not to take any of my presription drugs during the day.  Down to 2 regular strength Tylenol.  (= just over 1 extra strength).   After waking up at 6am and taking the Percocet I was able to wait until 12:00 noon, before taking Tylenol again, then I waited till 5pm for the next dose of Tylenol then about 10pm for my Percocet (I will continue that at night for a couple days I think, it helps me sleep)

The day was long, puttered around the house, I would still have the pain across my chest when I stood up, on a scale of 1-10 it only every got up to about 5 or 6.  

My incisions are starting to itch; I lifted my bra and peeked!  They look good and I suppose itchy means healing, of course I must resist to the itch even with freshly washed hands, fingernails are gross. :)

My husband did take me out for an hour or so in the afternoon, I was looking for a salon to have my hair washed.  We went to 4 different places, not a SINGLE one was open!!  I guess hair shops are closed in my city on Sundays; I never knew.

When we got home I was tired so lay on the couch.
I rested but never really slept throughout the day.  

Took it easy for the evening.  Went to bed around 10pm.


DAY 4 (29 June 2009)

I slept through the night.  I woke up at 6am (my normal wake-up time) and took two Tylenol.  When I stood up to go to the bathroom, I waited to for the pain to hit me.  I would say on a pain scale of 0-10 it peaked at around 2 or 3 when I got up this morning.  What a great improvement!  Not bad at all, not only did it not hurt to stand up like it used to but I do not feel as stiff either.  Good way to start the day.

I actually drove myself to the local mall to get my hair washed.  The lady charged me $5.00!  Not a bad, she even added a bit of product and used the dryer to take some of the dampness away.  I was only on Tylenol, and I felt good enough to drive.  I still kept a small pillow between me and the seat-belt.   There was absolutely no pain or even discomfort when driving.  Not when turning not when shoulder checking (that's the two things that hurt the first time).  I even went to a friend's house for a visit before going home and leaving for my PS appointment.

My husband and I arrived a little early but did not have to wait long before going in and seeing the Dr.  She cut open my bandages and said it looked quite good.  I said can I peek?  She has a floor length mirror and I had a look.  I think they look AMAZING!    Just imagine, I think they look this good now...  wait till I give it some time!!

She said bra every day 24/7 for 3 weeks, showering is ok.  However no direct water on the front, so water on my back, dripping over my front is ok.

I asked about risk of infection and necrosis, she said it probably would have presented itself if it was going to.  Good news.
Next appointment in 2 weeks.

Now for the pictures!  I took a bunch; I want to document how they change over time.

         

I think they look awesome!  I am so happy with them.  The next few are just more detailed pictures.  I'm sure with time they will look a little different.  I am SO happy she was able to fix the 'pucker' on both of my foobs!  If you look closely on the left side near the top of the foob you can see the long string that is the stitch; it looks like fishing line.

       

The left side seems to have a bit more 'loose' skin, Dr said the healing should correct that.

One more photo to include today.  This is me in a bra.  I have the little gauze pads between my bottom incisions and my bra. 



The look is very different from the 'old me'.  I knew it would be, I just need to adjust to seeing the new me.

I finished the day without a nap. By the second half of the day I was taking regular strength Tylenol every 4hrs.  My body tells me when the time is up for sure, but nothing really bad.

I decided to wait until day 5 to shower, I don't feel gross and I like to give my wounds an extra days healing before wetting them again!

I decided to take a Percocet to help me sleep during the night.  I won't do that again, I woke several times and had a couple really bad/sad dreams.  No Thanks.


DAY 5   (01 July 2009)

After my night of sad dreams I did not feel rested, after I woke at 6 or 7, I took a Tylenol and went back to bed.  I slept till 10am!  

I took a shower today too!  It was wonderful!  I feel so clean and fresh now.

 Made it through the day without a nap or even wanting one.

Still on regular strength Tylenol every 4 hrs.

Still feel the stiffness in the muscles across my chest.


DAY 6

I woke this morning feeling rested despite the fact I took only 1 regular strength Tylenol before going to bed.  I am very happy about that.

I'm trying to do some of my post-mastectomy stretches to help be rid of the tight feeling and improve my range of motion.  Still no lifting for me.  I carry my purse but that's it.  I'm afraid to overexert myself... This is my last surgery...  I don't want to do anything to mess things up.  I want things to HEAL in the right places.  :)


DAY 7 - 10 (05 July 2009)

Feeling good and strong.... still trying not to do too much with my arms.  Off all pain medications but take a Tylenol when I happen to feel any discomfort.

Like after my first surgery, I get these stabbing pains in my incision sites.  Very strange, just one quick pang and it passes.  I flinch and it's gone; ever any warning as to when it will hit.  I could almost point at the exact location on my incision where it came from though.  I remember I had this after my first surgery too.


ITCHY

Oh, am I itchy!  Only at my incision site, perhaps it's because I am healing, perhaps because it summer and I am sweating more or maybe it is a reaction to the tape that is there.  I have skin issues with different kinds of tape before.   It seems to bother me when the tape gets wet (after shower, sweating etc).  I'll give it some time, if it doesn't get better I will go see Dr T.


DAY 10

I do not expect to see a major difference between day 4 and day 10.  The bruising I had on my left foob is gone...  maybe the shape is a bit better too, by shape I mean the skin around the implant looks better.

         

Still another week till my next follow-up with Dr T.  I will try to take pictures every week. 



Day 12  (07 July 2009)

The day the tape came off!  I called my PS office to check to see what could be done about the tape that was making me so itchy.  I realise it is normal to be itchy were the incision is, you know what they say, it means it's healing.  My itching was around the sides of the incision, under the tape... it was driving me crazy.

I got a call back from the PS office saying to go ahead and remove the tape.  Do it while in the shower so the glue is wet.  Pull gently and not quickly.

DONE.  No problem at all.  I waited until the end of my shower, brought a mirror and pulled slowly and gently.  I was expecting to remove all the scabs but next to nothing came off with the tape.  Now of course I have this sticky residue all over, I tried to wipe some off with a clean swab.... AROUND my incision not across.

Of course me and my picture taking, I couldn't resist taking one to share. 



I am really impressed at just how small the incision is!!  The best part is, when I look at myself 'straight on', I can hardly see it at all.  I know with time, this scar will be barely noticeable at all!

There is still a bit of wrinkling/puckering going on near the sides of my foobs.  I am convinced that will correct itself with time; if it doesn't, I am willing to live with them the way they are.

 
 
lianne_brca2
13 July 2009 @ 02:03 pm
ADJUSTING TO THE NEW ME (13 July 2009)
 
I'm finding it weird.  It is not that I am unhappy with my results, I am pleased; or at least I know I should be.  I'm just finding it strange to know that this is me.  This is what I am going to have to live with from now on my new shape.
 
I have always known that my final result would be very different from my original breasts, I never expected otherwise.  I also never really pictured what the finished product would look like.  Sure, I looked at photos but I never really imagined what mine would look like.  I figured that way I would not be disappointed with the outcome.  They will turn out however they do and I will live with the result.  

During the whole expansion process, I really didn't care what they looked like either; I knew the expanders were there to serve a purpose -to expand my skin in order to place my permanent implants-.   Now, I need to accept that this is what I will look like.

Perhaps it will be easier once I am out of the 24/7 bra wearing stage.  Not fun having to wear one all the time, not to mention a sports bra kind of limits my choice of clothing as well.  Once I'm healed and OK to go with out, it will be fun to try on different shirts and see what my foobs really look like.

The Dr has not cleared me to exercise yet either... I'm anxious to to get going, I've gained about 10lbs since this whole thing started in January and I am looking forward to loosing that weight.  Almost like turning a new leaf.

I'm also finding it difficult to realise that I'm done.  I'm done.  My surgeries are done and I don't need to worry about breast cancer... ever.  Of course there is still a small risk but I was facing an 87% giant before this surgery; that giant is dead and I'm left with not needing to worry about it ever again.  Its a very strange thing to be faced with.  Breast cancer has been such a real threat to me and now I need to adjust that the fact is that threat is gone.  It is proving harder to do than I first thought.  I almost find myself asking "what now?".



3 WEEK POST-OP (16 July 2009)

I went to see my PS.  I went on my own, armed with a note paper with my questions.

While in the waiting room I met a lovely woman who was buying a surgical bra from the Dr's Office, I mentioned that my favourite bras were from Walmart... BESTFORM, they hook together in front and cost $10.00.  Can't beat it. In fact, in most of my pictures (with a bra) it is a BestForm bra.  I also shared my journal with her.

The Dr called me in and made a comment about me just holding a big poster board with my information on it.... (I tell anyone that will listen about my surgery, the BRCA gene and my journal)... I told her that's not a bad idea!! :)  I want to raise awareness anyway I can.

Dr took a look at my foobs and proclaimed they were healing very well, a "very good result".  I would say so!  She cut any of the stitch strings that were still visible (the ones inside will dissolve on their own).

I asked her about the bumps that I have below my left foob, tender to the touch.  She called it 'cording' and said it was very common with breast augmentation patients as well.  She compaired it to the marbleing that go through a piece of meat.  The stiches can play a factor too... with time it will go away.  I've put a 'box' around the area that has the cording.  It feels like rope under my skin.  As you can see by the next photo, it is not visible unless I am stretching up.  It doesn't hurt and thus doesn't bother me.

    

Now for my list of questions: What about exercise?  No problem.  Swimming? - Sure, but how bout waiting till the weekend (3 1/2wks).  Lifting restrictions? Nope.  Bra 24/7?  Not necessary... ever.   (hurray!)  Oh yeah, and I wanted my "Implant cards".  Information with my implant Make/Model/Serial/Lot number.   -Can't help but think of CSI and that now my body will now be identifiable by my implants!-  :)  It was just a small piece of paper with a sticker with all the information on my implants.  That way if the manufacturer ever has any information regarding their implants, I can know for sure which ones I have.

The PS office has opened a sort of 'side business' where they do laser hair removal, facials, ect.  They are in the process of getting a tattoo artist there (to do permanent makeup and nipples).  I already told my PS that I do not want to reconstruct my nipples but may consider doing a nipple tattoo.  The tattoo artist will be in contact with me once she is set up.  PS said I could do that as soon as 3-6months post-op.

So I've been given the 'all-clear'.  Its really nice to have that assurance actually... she asked me to set an appointment for ONE YEAR from now!  Wow!

NIPPLES or FIPPLES

It seems so strange to me that I am writting about nipples.  I could not have dreamt at just how fast I have made it to this point... wow.

Fipples is another made up word that those of us who are living this are familiar with... think Foobs.  It's the same idea.  It's a combination of two words as well. Fake and Nipples. Fipples.  Love it!

There are several ways to reconstruct a nipple, including one called 'nipple sharing' which only works if you have one nipple and need to reconstruct the other (they are my favourite ones).

This is a great website that goes through the whole nipple reconstruction process and all the different options: www.breastreconstruction.ca/nippleareola.htm  There are event different ways of creating a nipple using the FLAP reconstruction.  The FLAP procedures seem to be most popular.

Nipples seem to be a very sensitive subject when it comes to breast reconstruction.  Women feel very strongly about their nipple reconstruction.  Many see it as the finishing touch and cannot imagine not having one.  It is seems ridiculous to them NOT have nipples done... perhaps it is because once it is done it will truly give to impression of a real breast.  Here's an example to demonstrate the difference... let's say there is a group of women topless in a change room, at first glance one would not notice anything different from one woman to another if there was a breast mound with a spot of colour, however my 'naked' breast mound would most definitely stick out as different!  Something is missing.

Yes, something is missing....  my NIPPLE is missing!!! :) I'm not sure why that thought doesn't bother me...

Maybe it's because I have been so open about the surgery.... I would be more than happy to share my story with anybody who even throws a puzzled look in my direction!

Maybe it's because I don't consider these my 'breasts' anymore; they are my 'foobs' so why make them look like something they are not.  (again this is how I see it, MANY woman see things very differently - I do not mean to offend anyone)

Maybe it is that I have NO desire to ever have to wear a bra again.  My fear is that my fipples would be visible through my cloths and I would have to wear a bra to hide/cover them... You see they would not react like normal nipples; of course there would be no feeling but they also would not change, react to touch or cold... they would stick out... all the time.

I think of course naked, my foobs would DEFINITELY look more natural if I had my nipples reconstructed (I have seen some beautiful results).  For me, I am comfortable in my nakedness and frankly I wear cloths more than I don't, so that is my biggest concern.

THAT being said, I am not completely opposed to what they call a 3-D tattoo.  That is a nipple tattoo that LOOKS three dimensional.  It gives the appearance that the nipple is raised around the areola (this is done with the use of different colours and shading - much like a 3-D drawing).

Another idea I am considering is having a tattoo done... not a nipple tattoo but ART tattoo... I'm thinking a vine, with flowers and a humming bird.  Not sure how it's all going to come together but I have thought of this long before my mastectomy was even done.  For me, the hummingbird would be the most significant part of the drawing... a hummingbird in my mind, is the epitome of perfection.  Beautiful and complete.  I love the idea of putting that picture on my foob.  Perfection.  I know my foobs/breasts/chest is not perfect, it's scared and changed from what it was meant to be... but to me, it's perfect.

Now I just have to find a drawing I like and more importantly an Artist I would trust to do it.  If ever it happens, I will most definitely post pictures.



BACK IN FULL SWING!

I really feel like I am done.   I would say I feel 95-98% recovered from my exchange surgery.  I was doing a large load of groceries, lifting cases of water and boxes of food today.  No problem.  I didn't even feel like I was straining myself!  Sure I feel some tightness across my chest area when I reach my arms straight up or when I try to move them in an arch from my sides to the top of my head (like a jumping jack).  It doesn't hurt and I know if I make a conscience decision to stretch everyday it will improve faster (it did after my first surgery).

I've actually joined an exercise class that starts next week.  I am going to learn how to dance an Irish jig!  The sign read "why jog when you can jig"  PERFECT!  :)  I have put on between 10-15lbs since my surgery in January.  I must loose this weight or I'll have to buy myself a new wardrobe for work!!  Much cheaper to lose ten pounds then by new suits!

I will try to use my exercise ball to stretch my chest muscles out too... I sit on the ball and use my feet to roll my self forward until the ball is behind my shoulder blades.  GREAT stretch, then when that 'stops' stretching, reach my arms out strait to the side... wow what a stretch!  I did this after my mastectomy too.

All in all I feel great, I'm not getting tiered like I did after the first surgery either.  For weeks/months after the first surgery I found myself drained after work; not so this time.  

Yay!

CLOTHED (20 July 2009)

So now that you have seen how my foobs look naked, lets show you what they look like covered!

The photos do not due them justice.  I am very happy with the way they look and even my 93yr old Grandma told me I had a lovely shape!  How nice to hear... then I got to tell her I wasn't even wearing a bra!  

         

So there you have it.  Even in a bathing suit... not bad.


PERFECTION  (24 July 2009)

 


I’m done my surgery.  I would say I have had no complications (maybe a little something here and there to be concerned about– but nothing like what can happen).  I have very good results.

Yet here I am, looking at myself in the mirror picking out things that are not ‘right’.  I wish this…. I wish that…. I wish this wasn’t/was there…  What’s wrong with me!?

I look for things that are not perfect.  I wish my scars were not as visible. I wish I had mentioned to my PS before my exchange about the little pucker on the bottom of one of my scars (which at the time didn’t bother me because the pucker at the top was so obvious).  I wish they were bigger (they looked better right after surgery than they do now - they were swollen then).  I wish they were softer.  I wish I had more feeling.  I wish my scars were horizontal.  I wish… I wish… I wish… RIDICULOUS!!!

I caught myself and told my husband what I was thinking, he reminded me of something: My breasts (before surgery) were not perfect, why should I want these to be?

More importantly, I feel like a superficial fool for being worried about these things when I consider the ‘big picture’.   I chose to have this surgery because I wanted to reduce my risk of breast cancer.  I did no have this surgery to get great results.  I knew going in that no matter what my results were, it would have been the right choice.  Yet here I am.

What am I doing complaining about this and that when I’ve just made a decision that will (hopefully) save me from facing that horrible disease Breast Cancer!?

On the other hand, I have made these choices and I have a ‘right’ to be happy with them.  Do I?  If I had just battled and won my fight with Breast Cancer would I really be concerned about the little pucker or would I just be happy to have my life…?  I pray I will never know the answer to that question.

I made a deal with myself before going into my second surgery.  I decided that not matter what my result, I would wait 6 months before making any decisions in regards to changing what I end up with.  After 6 months of being in expanders I thought of skipping the exchange and keeping my expanders for ever (and they looked ridiculous)!   The deal was I would wait 6 months before making any change, and I will.

I am so frustrated with myself for not being happy with my results.  Let me clarify, I am happy with my results, I just want to make them better.  With a little tuck here, a pull there, they’ll be perfect.  Or so I think.

This is the reality… my reality:  Before the surgery I had a 87% lifetime risk of developing breast cancer.  I chose to have a double mastectomy knowing full well of the possible complications and setbacks that may happen.  I went in knowing that whatever happened I would chose to be happy with my results.  It’s a choice.  It’s perspective…  Given the result I have ended up with it should be easy.

I just have to keep reminding myself of the big picture and my reality.


4 WEEKS - 1 MONTH POST EXCHANGE (25 July 2009)

Here I am, 4 weeks out from my exchange surgery.  The scars are fading very well.  I plan on doing some breast massaging this week.  I was very worried about doing that before my incisions were completely healed/closed.

They appear to be now.  I am very impressed at how good my exchange scars look (under my foob)… so small and straight compared to my vertical scar.

       

You be the judge here.  I feel as though they have ‘shrunk’; must have been the swelling from surgery.


6 WEEKS - COMPLICATIONS  (10 Aug 2009)

I figured if I made past the 4 or 5 week mark with no issues I would be 'in the clear'.  I was wrong.

About 4 days ago (exactly 6 weeks post exchange) I notice something funny looking on the top of the incision on my right foob.  It looked like a small pimple with a white head (sorry for the gross description)... there was a bit of redness around but the actual white spot was not raised above the incision.  It looked internal.

So I put some Neosporin/Polysporin on it, covered it with a band-aid and let it be.  Last night after my shower I noticed that it had opened up.  There was a little bit of clear/white discharge and some blood.  We are talking a tiny amount of anything that came out but it still freaked me out.  I put polysporin on in again and kept it covered over night.

I spoke with my PS office today, I gave the info to the woman who answered who asked me if I was running a fever, if the skin around the area was warm, if the discharge was green or yellow.  She called me back after speaking with the DR.  They said to clean it off with hydrogen peroxide and keep a thin layer of polysporin on it.  If it changes colour or starts leaking something, if I run a fever, basically if anything changes to call them again and they will set an appointment.

So far I'd say it's looking good.  I'll take a picture later today to have for my records.

The most unfortunate thing about all of this is ....  I'm wearing a BRA again!  Horrors!!

I have a real sensitivity to tape and even the band-aid glue irritates my skin.  Instead of using a band-aid I just put a clean gauze pad over the area with polysporin, to hold it in place... a bra.  Yuck!   Actually I am not finding it so bad at all.

I feel like I am holding my breath all over again.  The recovery after surgery is one thing, but I could not breath easy until my incisions had compleatly healed.  For me that was when I would no longer worry about infection,necrosis,ect,ect...  Now I have an open wound again.  Granted, it is is maybe 1mm in width as big as a pimple, but still, it's open and not healed.



I'm holding my breath again.

RELIEF  (14 Aug 2009)
 
I'm fine.  What ever it was that caused that little spot, went away.  I cleaned it with peroxide and covered it for 2-3 days with neosporin.  All redness is gone and there is a tiny little scab on it now.  Hurray!
 
I was so afraid I would have some sort of giant complication... infection or something.  After thinking I was 'out of the woods' its good to know I am once again.  This time for how long?  It's hard not to wonder if anything else will pop up... 2 weeks, 4 weeks down the road.  I try not to dwell on things like that but I suppose it is good to be aware that they can happen.



3 MONTHS  (5 Sept 2009)

I will post these pictures first then comment on them later.  I find it's been hard to keep up with my journal like I had planned.  Life has continued and I have moved on.  I have tried to sit and write and update a few times then I get distracted and never finish.  I think I have 3 saved emails in my draft folder that I have been working on!

Here are a bunch of pictures, I think my results are good. 

They are not perfect.  The last few pictures will show that...

       

Notice the flat part on the last photo. 

Now on to the others, I wanted to show how squishy they have become as well as how my incisions are healing.

         

All in all not bad.


SQUISHY SQUISHY (17 Sept 2009)

I am nearly three months out from my exchange surgery.  I am amazed at just how much 'give' my foobs seem to have now.  They were really very HARD after my exchange, with time they seem to have softened a bit; more than I ever thought they would actually.  I had prepared myself mentally to expect really firm foobs; I knew that the peace of mind I would have with the gummy bear implants would have a 'down side'.  I figured compared to the expanders these would be squishy enough!  What a pleasant surprise to see that they continue to change and soften.
 
I find the shape as changed quite a bit.  They seem to be a lot smaller than they were after surgery,  I didn't realize just how swollen I was.  There is a term that is used that says that implants 'fluff out'.  In my case, the implant itself certainly seems to have changed: softened and perhaps even 'fluffed out'.  However the whole SIZE seems to be smaller.  If you look at my most recent pictures and compare them to the ones taken just after my exchange... what a difference!!  I didn't know.  I am reminded of something my breast surgeon told me close to a year ago.  He told me I could have swelling for up to a year after the mastectomy.  Sometimes I forget just how big a surgery I had.
 

MUSCLE SPASM

I must mention that as recently yesterday, I get a sharp pain on my chest.  It is a sharp almost stabbing pain that often catches me off guard.  I would describe it as a sharp muscle spasm.  It mostly happens on my right side, on the very side of my foob, I have found that if I apply a constant firm pressure with my palm or fingers and it seems to help a little.  It passes within a few seconds (3-15seconds).  It doesn't happen often... once every couple weeks maybe.


COMING TO TERMS
 
I find I am adjusting well to the 'new' me.  I don't feel different from the way did before I had the surgery.  The best part about it all is that I am able to move on; I don't dwell on breast cancer anymore.  It was never far from my mind before I chose to have this surgery.  I find I am able to LIVE with out worry/obsessing about it.
 
I still notice other woman's breasts, sometimes I still feel sad that mine don't look the same as theirs anymore.  I try to remind myself of the upside.  I cannot tell you how much joy it brings me not to be 'bound' by my bra (both literally and figuratively)!!!

BRAS - SHOPPING FOR BRAS (25 September 2009)
 
I have been asked over and over from all sorts of women, 'what size are you now?'.  I never had an answer for them.  I didn't know and it really didn't matter to me.  However I figured I should probably get measured so I could have an answer.
 
I also read a lot about women who after their mastectomies and reconstruction when bra shopping and bought something 'pretty'.  So I decided to go shopping and see what I could find.
 
I went to a fancy lingerie store; the first thing I did was ask for help, I explained briefly my situation and let her know I was looking to try on a few bras but had NO idea as to my current size.  She measured me through my cloths.  I'm a 38C.  I was a 38D or DD before surgery and my 'goal' after surgery was to be a C.  Success.  That was nice to hear.  I explained that because of the type of implant I had there really is not much movement.  She collected about 3-4 bras (which turned into 8-12bras) and I went into the change room.
 
To make a long story short, none of them fit.  I left the store depressed and on the verge of tears.  Up until that time, I had never felt that my foobs were ugly.  But seeing them in these bras made them dimple and ripple and they looked awful!  I was so sad that nothing fit.  I had thought that because I was a smaller size I would find something.  The bras were shaped and molded, all they did was try to shift/lift my implant that wouldn't be moved!

The sad thing is, I really didn't miss wearing a bra... I'm not sure why I went to try.  Perhaps its because I've seen/spoken with other woman and for them a bra was very important.

After we left the store my husband suggested I not go bra shopping anymore.  What's the point?  I don't really WANT a bra and the process was making me depressed.  He's right.  No more for me.


4 MONTHS  (01 November 2009)
 
It has been 4 months since my exchange surgery.
 
There are a few things I have noticed.
 
First is I really am not concerned at all with my my scars.  In other words, I don't apply any cream/oil or scar lotion of any sort.  I was rather obsessed with it after my initial surgery. I'm not sure why they don't bother me anymore.  I suppose I recognise that they will fade with time; with or without my help.  That being said when I do think about my scars I realise I probably should do more to 'help' them out.  I don't even do any massage at all.  I really think the reason I don't do any of these things is because I've already moved on.  I don't worry about my foobs anymore, I no longer obsess about the next procedure.  I'm done.  So in my mind I've pretty much dismissed them as being complete.

BRAS - round 2-

I found a bra.  After my last bra shopping experience I was somewhat hesitant to try again but I did.  I learned from my first experience what would work and what wouldn’t.  I went in, told the sales woman.  I need a bra with no underwire, no padding and no molded cups; she found one!   I bought the blue one and a white one as well.   I don't wear them often but it's nice to know I can. 



I also wanted to show you a few photo of the 'not so pretty' side of implants.  The implant is placed under part of the pectoral muscle (your big chest muscle) as a result if I flex, the implants move.   I had my husband take a picture while I was flexing... 



Funny, eh?  So when ever I strain to take the lid off a can (something a struggle with a whole lot more than I used to) my foob probably looks like that under my cloths.  Nice.

Now some more to show the squishiness as well as how they are healing.  I don't know if you can see but  I am pressing quite hard on my foobs... look at my knuckles.  

    

As always, I am not very happy with my left foob.... that flat part drives me nuts!!

         

 
SCARS
 
I don't see my scars.  I don't think they are terrible.  I've met/spoken to/read of other woman who see nothing BUT their scars; as they get in/out of the shower and they catch a glimpse of themselves in the mirror it's all they can see.  Not me.  Many of these women look forward to getting their nipples tattooed as well because it will help hide the scar.  Not me.  To me my scars are not ugly; to me, they tell a success story, one of strength, overcoming obstacles and facing fears.  They are a mark of strength, endurance.  If ever I doubt myself and what I can handle, I just need to look down at my scars and am reminded that I can do anything.  Are they beautiful?  No, I suppose they are not however I do like having them.
 
 
lianne_brca2
20 January 2010 @ 03:13 pm
PUBLIC POOL  (20 January 2010)
 
My foobs had their fist public appearance last night.  It went well.   My husband and I went to the local pool for public swim.  I’m not going to lie, I was a little nervous to be naked in front of other women in the change room; what if they noticed my lack of nipples and my scars?  My shape is not glaringly different but the look certainly is.
 
I decided that I would not try to hide them.  It went very well.  My thought is this; if someone notices my foobs, it’s a good thing.  I can educate them (without words) of what a mastectomy and reconstruction looks like.  For so many of us, when we think of mastectomies, we think our butchered mothers or grandmothers.  That is not the case today.  I figure if they can take home a memory of ‘that woman at the pool’ who had reconstruction and it looked … pretty good/not bad/not scary… and noticed that I was comfortable with myself; maybe if breast cancer ever strikes close to home, they can recall ‘that woman at the pool’.  Perhaps that is giving myself too much credit.  Maybe nobody noticed; if they did, maybe they were grossed out by it.  I kept my eyes to myself and focused on getting ready.  When I went to leave, I did see one woman give me a shy smile.  Maybe she did notice after all.  :)
 
It was an ‘adult swim’ time, I considered if I would do things differently if it was a ‘family swim’.  Would I try to cover myself more in the change room?   Would it ‘traumatize’ a little one to see me?   Should I be hiding myself?  What if a little noticed I was different and asked her Mom.  “What’s wrong with that lady?”   What would I do?   I figured I will say something along these lines “it’s OK (to the mom); I’d explain that I was sick on the inside so the Dr’s took out the parts that were sick and replaced it with good stuff, that’s why I look different.”  I don’t have children, so I wonder if that would be enough or too much?   I supposed depending on the age of the child…
 
It brought up more issues for me than I thought.  It has been almost a full year since my first surgery.  I have chosen to share my story with as many people as I can through my online journal.  I would/still do a ‘show and tell’ to anyone who shows any interest in what I’ve been through.  Before showing them, I always ‘brief’ them on what they will see… “OK, I don’t have nipples, I have a 5inch scar that runs from the top to the bottom of my breast ect.”; this was different.  It was somehow more personal,  I was exposing myself to women who were not ‘ready’ to see my scars. 

I had to decide BEFORE I went, that I was not going to be embarrassed or ashamed of my body.   In my private life, I have chosen to see my scars as strength of character, proof of what I have gone through and a reminder that I can do anything.  I am not ashamed or unhappy with how I look in private, why should I let this instance be any different?


ONE YEAR  (24 January 2010)

I wonder if it is strange that I want to CELEBRATE my mastectomy date?  Perhaps it is strange; Happy anniversary to me non-the less!  One year.  It is hard to believe one year as already passed since that first surgery.

I feel good.  I still get muscle cramps across my foob; in fact I had one this morning.   They are few and far between now though, maybe once a month.  I really do feel done.  I do not plan on making any tattoo decisions in the near future.  I do plan to meet with a local tattoo artist to discuss doing 'artwork' instead of a  nipple tattoo - although I have still not completely discarded that idea yet.  I do know for sure I do not want nipple reconstruction.  I like the way I look now or perhaps I have simply gotten used to it?

I have been trying to remember to massage with oil like I did after the first surgery, I just have not been disciplined in that.  I also bought some silicone strips to put over my scars - they are supposed to help reduce their visibility; again, I have not been constant with that either.  It seems I have really moved on. 

I try to check in with the on-line group that I was so attached to but now I just seem to be frustrated by what I read.  Most of what seems to be asked or discussed is the same stuff we when through 6-7months ago.  When did I become so impatient?  I do still meet with a group of local women who are all at high risk or have had breast cancer, I do not tire of that; perhaps because it is face to face.

Once in a while I receive a 'thank you' note from someone who has read my journal.  I do appreciate those letters.  It's nice to know that my journal is doing what I really wanted it to do.  Show others what this surgery can be.  Although we may all will have different experiences with our DRs, pain management and healing; we are going through the same process.

I have included some photos too.  I have gained about 15lbs since last year, my goal is to loose that weight before my 2nd anniversary.  I am happy with the healing for the most part until I look closely at my left side....there is still a very FLAT part where I think it should be round.  I even notice it through cloths!  Perhaps when I meet with my Plastic Surgeon (for my 1 year follow up this summer) I will ask her if there is anything that can be done about it.

       

I have also come across some wonderful blogs while working on this one.  I will post them for you.  We all have a different story to tell, a different experience, sometimes its just nice to know we are not alone.

http://brca2blog.wordpress.com/
http://www.onestepscoop.com/
http://brcaismy4letterword.blogspot.com/
http://sandradginzburg.typepad.com/imamutant/
http://itsinthegenes.wordpress.com/
http://myblip.wordpress.com/
http://goodbyetoboobs.blogspot.com/
http://thebreastsonmychest.blogspot.com/
http://lisaschoice.blogspot.com/?zx=73f55d7390a298f8
http://jenn4011.livejournal.com/
http://boobnoophbrca1.blogspot.com/
http://www.bridgesgirl.com/BridgesGirl/
http://brcajourney.blogspot.com/
http://mmargsnow.blogspot.com/
http://thebrcablog.wordpress.com/

Enjoy.

The SCAR Project
   (March 2010)

A photographer has taken on the passion/responsibility of photographing women after mastectomy and breast surgery.  What an undertaking!  I wish I could remember where I first came across his website, perhaps Facebook.  As soon as I looked at his photos I was inspired!  Have a look for yourself:  http://www.thescarproject.org/  As soon as I found the site, I wanted to be part of it.  I wrote the photographer, told him a little of my story and he said he would love to photograph me!  He asked if I could join him for his photo shoot in New York City next month (that means a bit of travel for me).  Before agreeing, I discussed it with my husband.  Having a blog is one thing, exposing myself from the waist up, no face; posing topless for a photographer is another. :)  I explained to my husband just how important I felt this opportunity was for me; from the very start of this process I have always planned to have 'after' shoots taken; this is an opportunity I did not expect...  After discussing it with my husband, I agreed.

Next month I will be making the trip to New York with a friend who has agreed to come with me.  This friend has been a great support to me during this process, I am looking forward to sharing this with with her.  I am anxious to take this next step although nervous at the same time.   I have shown the photos from the website to several different people and have received quite mix reviews from people, some find the photos "hard to look at", someone even mentioned the word "butchered" .... ouch.... It hurts me to hear that.  Maybe because I have lived through it, I don't see it that way at all.   Although it may not be mainstream beauty, I think these women are stunning.  What I like the most is the photographer's style, I find he really captures the woman he is photographing; each one is so different; strength, sadness, victorious...

 Before I go for the shoot the photographer asked me to write a bit of an intro about me, here's what I wrote:

"I am not a breast cancer survivor; I have never had cancer and yet I chose to have a bilateral mastectomy.
 
Here's why: I have one of the two known "breast cancer genes|", otherwise known as the BRCA1 and BRCA2 gene mutations.  Everyone has the BRCA1 and BRCA2 genes; however some people inherit an abnormal (mutated) one.  The women who inherit this abnormal gene have up to an 87% risk of developing breast cancer by age 70; they are also at increased risk of developing ovarian cancer.  It is important to note that most breast cancers are not genetic; the BRCA mutations only account for 5-10% of all diagnosis.
 
Instead of living with the risk and waiting for cancer to strike; I decided to be pro-active and remove both my healthy breasts in order to reduce my risk by over 90%.  No, I am not a survivor but I do consider myself something else; a previvor (pree.VY.vur), someone who is not diagnosed with cancer, but has a higher risk of cancer due to a certain genetic mutation [blend of pre and survivor].
 
When I was researching my options for surgery, I found it very hard to find good, clear, useful information about mastectomies.  It was then I decided to be very open with others about my surgery.  I even kept an online journal documenting my progress in words and pictures with the hope that my experience may help others have an idea of what to expect; http://lianne-brca2.livejournal.com/ 
 
I want women to know that this surgery is not as scary as we imagine it, nor are we left looking terrible when it is done;  that is why I feel so blessed to be part of The SCAR Project.  I share my story to raise awareness of the BRCA mutations but more importantly to show that women can still feel beautiful, even after this surgery."

JUNE  2010

First of all I must apologize for not updating my blog sooner.  I have been meeting to write the following entries for some weeks,  I just find that I have moved on so much from my surgery it is hard for me to get back into blog/breast mode, to focus on really expressing myself when it comes to my foobs.  It's hard for me to 'go back' because I feel like I have come so far. 
 
LAST DR'S APPOINTMENT (March 8, 2010)
 
I wanted to meet with Dr T again to speak about a couple issues that I was not happy with.  I still struggle with seeking perfection/ the endless debate of shouldn't I just be happy to have shape? why am I seeking perfection? On the flip side, I've chosen to have this surgery, I have a right to be happy with the results.  Will I ever be really happy, they will never move like they should?
 
Back to my appointment.  I wanted to ask her about two things specifically.  First is the flat part on my left foob, it is still there and I still don't like it.  Dr T basically said there was nothing she could do about it, it has to do about the shape of the implant. Strange because the other side is just fine.  Then she suggested a procedure she has not preformed before.  She would take some fat from my belly (liposuction) and inject it under the skin where the flat part is on my foob.  The injected fat would fill out that flat spot.  She has not done it before, however I am more than happy to let her try this new procedure on me!  
 
She said she would order the equipment she needs and will get in touch with me.  No news yet.
 
MY BODY IS MY OWN
 
I was sitting down watching TV with my husband one night a few weeks back and rubbed my hands over my foobs and I realized something... my foobs feel like PART of me.   I will try to explain what I mean by that statement...  My foobs they feel like they always have, in other words, I don't remember what touching my 'real' breasts felt like.  What I was touching/feeling.... was me.   Some time ago (3 weeks after my first surgery) I announced that I was feeling normal - I no longer felt like I had foreign objects in my body.  Now, not only to I feel normal but my hands and mind are telling me that this is normal - its me.   I hope that I am making myself understood.  It is harder to put into words than I had imagined.  
 
Basically I feel whole.  My body is my own and I am complete.  It's a pretty good feeling.  I hope you understand what I am trying to explain. 
 
NIPPLES
 
I still do not feel the need or desire for nipples.  BUT.  A friend of mine, who I met through this whole experience was sent nipples as a GIFT for her birthday!  That's right nipples, in fact she was sent 2 sets of nipples.  Silicone, stick on nipples.  They are available online in the US at www.sears.com  you can buy them individually or as a set http://www.sears.com/shc/s/search_10153_12605?vName=Health+%26+Wellness&keyword=nipples 
 
This friend of mine offered me her spare set!  Truely one of the coolest things I've seen. (Thank you Laura!!)  Stick on, reusable nipples. They come in a small plastic case, reminds me of my contact case.  Take them out and try to place them, the first time I put them on I did not like them at all.   I have been so used to seeing no colour on my chest even the small circle of light pink/brown was disterbing to me.  Then I got used to the idea a little.  I now take them out on special occations!  Once in a while I'll even wear them to work!!  I haven't been flashing my foobs in quite a few months, but when I have these nipples on... I want to show them off again!  The toughest part is the placement of them... I'm sure I have them on crooked most times, I don't mind. 
 
I find this has solved something I had be struggling with.  I think my husband would like me to have nipples tattoos, I still really do not want them.  Do you see how this has solved my issue?!  I can put temporary nipples on!   No lifetime commitment of colour/shape.  I am a very happy camper and am suprised at just how much fun I think these nipples are!

     
             
THE END  (01 June 2010)
 
Tomorrow I am flying to New York City to be photographed by David Jay, a photographer that has been working on something called The SCAR Project.  He is photographing young women who have had mastectomies in order to raise awareness of this terrible disease Breast Cancer.
 
When I first decided to go ahead with this surgery, about 3 years ago, I met with a friend of mine (locally) who was a photographer.  I wanted to take pictures of my breasts, I wanted to make sure that I could look back (I haven't, btw) and see what I had given up.  That is also when I decided I would document my journey in words and pictures; for me that also meant taking the 'before' photos.  Even when I met with this friend for the photo shoot, I knew I would be posing at some point for the 'after' photos.  Now, this opportunity to be part of The SCAR Project has come along and I have come to see it as the completion of my mission.  The last thing left to do.  I am truly excited to be given the opportunity to be photographed by a professional and to be part of such a Project. 
 
I do feel it does in some way mark the end.  It all started with my posing for before photos, then surgery, more photos, more surgery, more photos.... now this. 
 
Now that it is here, I am surprised at the significance of this moment.  Not only being part of The SCAR Project but this trip to New York as well.  I am flying down with my sister and a friend.  Two of the strongest supports to me though-out this whole experience.  My sister, who slept on a love seat for a week after my surgery, who set her alarm every 4 rs to give me my pain meds, empty my drains and document it all, who wouldn't let me get up to walk to the bathroom on my own, who helped pull my shorts up because I couldn't do it myself, I could go on and on.  My friend, who has always been there to support me, who never once doubted or questioned any of my choices, even when I brought the idea up for the fist time, who has truly always 'had my back' through this and everything I have faced, one of the strongest women I know.  In addition, both of these women where with me when I went for my MRI biopsy, the event that was really the trigger for my doing this surgery.  That MRI biopsy meant a 4 hr road trip with an overnight stay at a hotel.  This time, a 2 day trip with over night stay.  I feel like I've come full circle in some way.  It all started with these two women and now, it ends.
 
Perhaps I am being overly dramatic about this.... maybe I am.  Maybe not. 

SURPRISING PAIN  (21 December 2010)

It is winter here again.  I have been doing very well.  So well in fact, that I have not felt the need to write.  I will however add a couple things that have been on my mind lately after this post.... more on  nipples and tattoos.

Back to the snow.  We moved this summer, now we have a large back patio deck and our driveway is quite a bit larger too.   We  haven't had a crazy amount of snow fall, but enough that it should be cleared off the patio and driveway.  There was about 6 inches of snow, it was quite light though so off I went; I grabbed my shovel and started shoving the snow off the balcony, shoveling the snow off the steps and throwing it off the sides.  Once I was done with that, I took out the snow blower and did a bit of work with that out front on the driveway.  All in all I must have been out for maybe an hour or so.  Not much more than that;  the sun was shining it was a beautiful day and I felt great.  Until Midnight.

My husband and I had gone for dinner and decided to stay at a hotel for the evening.  The pain woke me about midnight.  I was in so much pain, I could not tell were it hurt; from my waist to my shoulders front and back.  I thought maybe it was food poisoning or the flu.  I lay on my stomach and felt that all too familiar pain across my foobs to my shoulders.   I took two pain killers and tried to get comfortable; I could not.  I decided I would try a bath, maybe that would relax my muscles.  (a luxury we are are not afforded after a mastectomy)  As soon as I got in it did give me some relief, we put a towel in the tub and covered my chest with it while I was lying down and when I sat up, we put the hot towel on my back.  I was on the verge of telling my husband we had to go home because I needed something stronger for the pain that Advil, thankfully the warm bath did relax me some, I was able to fall asleep.

For the following 2 days I have been taking 2 Advil every 4hrs.  If I forget, the pain returns.  I tried taking only one pill; it was not sufficient.  It is Tuesday and the pain it Saturday.  I was able to go without any pain medication till about 11am today; then back to the 2 Advil.

This is the most pain I have experienced since the mastectomy itself.   The biggest difference is my arms were not sore, nor did it hurt to take a deep breath; just a deep, dull muscle ache.  Monday, it hurt to put any pressure at all on my foobs; I took a warm bath with Epsom Salts before going to bed and that was wonderful.

I would like to be able to describe the pain for you, all I can say is it was 'mastectomy pain'.   A soreness unlike any other, one I was familiar with and did not like at all.

What now?  Does this mean I never shovel again?  I'm not going to lie, the idea scares me a bit now;  I do NOT want to go through this again!  This has thought me that although I did not realize I was doing it; I have been 'babying' my chest muscles, going easy on them.  I must not do that!  I must use them!!  I know women who go back to kayaking, body building, push-ups after their mastectomies.  I need to do more.  I do not consider myself to be all that out of shape, however I need to do more.  Maybe some light weights, push-ups?  I must figure something out.

I will keep shoveling, however I will set myself a time limit 20minutes at a time; maybe that will help to build up those muscles again.

TO NIPPLE OR NOT TO NIPPLE

Yes, that is still the question.   I have good news, there are more options available to us than I first thought! 

There is of course having nipple reconstruction; that normally consists of a tattoo for colour and a small surgery under local anesthetic to recreate the nipple.

Next of course, is the silicone nipple.  The one I mentioned in a previous post; sadly it appears that SEARS is no longer carrying them.  I will try to find another place were we can get them.

Most recently I received an email from a woman who came across my blog from the FORCE website.  This woman told me of a new product.... RUB-ON Nipples!!!!    That's right _temporary_ 3D nipple tattoos!   For people like me who have no desire to commit to a nipple tattoo; this will be a very nice option!  I have ordered a set and when I get them, will post pictures for you all to see.  In the mean time, the website were I got them is:  http://tattooednipples.com/?page_id=333




Now for the last and very exciting option, not having to do with nipples at all really.  A henna tattoo.  For those of you who are not familiar you can google henna tattoo, you will see many images.  I have a colleague where I work that is an artist, she paints.  She has been a wonderful support to me throughout my process.  Always supportive and interested to be part of my 'show and tell' in the ladies bathroom.  It escapes me exactly how the subject came up, however she mentioned she would like to paint me.    We spoke of it again recently; I have purchased some henna and we hope to meet up soon to give it a try.  I had mentioned to her how much I like hummingbirds and I would like to have that incorporated somehow in my tattoo.

I am very much looking forward to meeting with her and getting this done!  The most wonderful thing about it, it will be temporary!  We can try a design and it will wash off in a few weeks!  Then we try again.  Here are the photos.

         

Pretty cool.


TWO YEARS   (23 January 2011)

I can hardly believe it has been two years since my surgery.

I had my husband take pictures to really see how things have progressed... I think that they have.

I feel as though my foobs are really a part of my body now, it appears as well that the scars have faded quite a bit;  You be the judge.

       


 
 
lianne_brca2
19 March 2012 @ 02:15 pm
Three Years Later - They are not perfect... but they are mine  (March 2012)

I know it is hard to think as you are living this journey that there will be an "after" - there is. There comes a time where you are not obsessed with Drs appointments, procedures, implants, cc's, surgery; There is life beyond all that..... and life is 'normal' once again.

I am not completely free of reminders of my surgery... in fact I still have muscle spasms from time to time so I have to be careful. I realize I have not focused enough time on rebuilding the strength in my pectoral muscles. Most recently (about 2 months ago) my husband and I were sitting in the front row of a concert at a local church when my left foob started to spasm! (I had been doing some pretty heaving shoveling of snow earlier in the day) So there I was sitting in the front row grabbing my left foob. The muscle felt tight and sore, I was able to find some relief by pressing with my palm open firmly on my foob. -nice view for they band on stage!!- Thankfully I had a scarf and was able to hide what I was doing from those who would happen to glance my way - I hope.

They're not perfect but they're mine; as my 'old' breast were not perfect, I no longer expect these to be.

Over these years I have been blessed to meet others in my area who are facing the same choices those of us who cary this mutation are faced with. Some have chosen to have the surgery.... and I've noticed that their results seem so much nicer than mine. I'm OK with that. My foobs are not perfect but they do feel like they are my own.

I am not as quick to do a 'show and tell' in a public bathroom as I was so eager to do soon after my surgery, nor does the subject of my mastectomy come up in daily conversation nearly as much as it used to... Again I think it's simply because I am moving forward with life.

I am so happy to find there are so many more resoures out there than there were even a few years ago. One site I have found to be packed with really wonderful information including fact sheets, sample leters of how to tell ones family about the BRCA mutation as well as other usefull information: http://www.inourgenes.ca/

It is hard for me to believe it has been 3 years from my initial surgery; it seems like just yesterday and yet at the same time it feels so far away, almost another life. I know that I went through those things ... I just don't "feel" it any longer. I'm not sure if I am making myself clear, I'm just not sure how to better express it.

Before I sign off again I would like to take a moment to say thank you for those who write. Please know I value each letter.

Blessings to you all,
~Lianne