Bee Girl... Be A Girl...

Check Your Boobies! 

... "You know time is long, and life is short, begin to live while you still can

Believe in nothing, believe me, those who can be trusted can change their mind The anxious is the present, unwrap your gifts, take your time Everything you imagined, needn't be stuck in your mind Bee Girl, be a girl"

I'm going to be a 'B' Girl.  

  For years I have loved the song 'Bee Girl' by ... you guessed it... Pearl Jam!  I never thought my being a 'Bee Girl' would mean 'B Cup'... :) but I'm more than aware that life doesn't always turn out as you expected!  and so at this juncture of my Breast Cancer journey... my skin has finally decided it is ready to heal and move on, get back to the 'reconstruction' phase and I am indeed... going to have 'New, larger, artificial Breasts'!  

  The first person (and perhaps only person) who needs to truly accept this... is 'ME'.  

  I've learned along the way, since first starting this trek last September, that there are many stages of progress/regress in navigating one's way through diagnosis, acceptance and treatment.  With each step there seems to be a myriad of psychological emotion twisters.  And as I enter and recognize each step... figure out how to navigate the figurative 'road blocks'... I seem to gain a little more belief in myself as well as gratitude for the supportive relationships I have in my life.  The one I'm navigating now is how I will ingest and respond to people's reaction to seeing the physical change in my appearance.  

  So far it's been interesting for people to see me for the first time since having my breasts removed.  Even from the moment my initial bandages were peeled away, when fully clothed, I maintained a physical appearance very similar to what I always have.  With the immediate reconstruction started at the time of my mastectomies, the expanders in my chest created 'mounds' that were (although misshapen) close to the same size as my breasts.  For all intents and purposes... when covered by a shirt, obstructing the view of bruises, stitches, surgical drains, etc.... I pretty much looked like 'Me'.   Today, 73 days after the surgery, with 360 cc's of saline in each of the 'plastic sacs' in my chest (which will elevate to 450 cc's over the next 10 days... if all goes well)... I still look like 'Me' but it's an undeniably different shape than I've ever been before!  It is a physical change that I am choosing... and because I'm still in the process of accepting the decision myself... it seems I am going to have to work very hard at accepting other's perception of my appearance as well... so many lessons to learn :)

  I often like to come up with analogies to express the current situation in an easily digested manner.  For this one I was thinking that if it were a 'different... less sexually charged' area of the body... it would be perceived very differently by many.  Let's say it was my Legs.  I had a disease in my legs that dictated they be amputated.  For conversation sake let's say 'Leg Amputation and Reconstruction' is a common occurrence.  I'm told by my surgeon that after the amputation I'll be able to work with a Plastic Surgeon to create new legs as I would like them to be.  They'll never be my 'real legs' but the good part is that they will look/feel/function pretty much like my old ones... and I have the 'prize at the end of the journey' of being able to have 'the legs of my dreams'!!  I can't imagine I'd choose short ones with veins, cellulite and knobbly knees... I'm pretty sure I'd opt for the long, smooth, lean 'runner' models!  

  But it's not legs... it's breasts... and I've decided that since I had to go through the physical and emotional pain of giving up the ones that Mother Nature gave me... and now I've been given the opportunity to choose...  why not choose 'Dream Boobs' ?  :)   And it goes around and around in my head... as I again question myself... question my decision.  Defensiveness is born out of fear... out of questioning one's own choices.  

But you know time is long and life is short... begin to live while you still can... 

B Girl... Be a Girl...  ;)

  

Back On Track...

... kinda, sorta, not really... ?

  Yesterday was supposed to be my 'excitement day' at my Plastic Surgeon's office.  Finally... the skin seemed to be healing and I was hoping we'd just get back to where we are supposed to be... filling the turtle shells in my chest!  (for anyone wondering why I refer to the tissue expanders as 'turtle shells'... it's because they are hard and clumpy and totally unnatural feeling).  Anyhow... aside from a little oozing/bleeding on Easter Sunday... things were looking pretty good!  Then the mail lady came on Monday and there it was... I almost couldn't believe my eyes... a BILL from the PS office.  A BILL that we thought would be covered by our insurance company.  And once again, for me it was into the 'around and around' telephone calls to billing departments and insurance company reps... all of whom seem to have no HR skills.  

  The story now seems to be that the insurance company, who assured me when I did my due diligence in inquiries, that Dr. Miles is an 'In Network' provider (this means that any billing from her would be completely covered by our insurance once we paid the individual deductible and met the cap on out of pocket expenses (which we bypassed months ago) up until the year end calendar date which for us is May/31/09).  But now... according to Dr. Miles' billing department, she is in fact 'Not In Network' with our insurance company.  

  And this is where it gets convoluted... Dr. Miles is a provider with Insurance company 'B'... which was bought out by Insurance company 'A' (which is our ins. co.) and apparently because company 'A' now owns company 'B' they (the insurance company) are under the impression that all doctors that honor insurance for any of their 'sub companies' are also on board with them... I'm learning (the hard way) that this may not actually be the case.  I was actually put on hold while the insurance company rep called the billing office and when she came back to me she was completely IRATE... telling me to put everything on hold until this was sorted out.  Of course I still went for my appointment yesterday... and I'll go again next week.  I've been putting enough of my life 'on hold'... 

  Trust me, I'll fight the insurance company tooth and nail and I believe I'll win!  I actually had the staff in Dr. Miles' office running in circles saying 'OOohhhh... I can't stand *^%*&^# insurance companies'.... and 'go to your state representative in Olympia'... and 'get Jessie at King5 News!' :)  Cheryl photo copied the 'approval letter' they received from the insurance company, giving Dr. Miles and her staff  the 'Green Light' to go ahead with all any any treatment/reconstruction I needed and to this day our insurance company has her listed as an 'In Network' provider on their website.  For now I'll gather any information I can to make my case... and continue to go to Dr. Miles' office for my expander fills.  I was told that there is some kind of '3 Month Umbrella', under which Plastic Surgeon's reconstruction 'has to be covered' by an insurance company that approves 'breast amputation for Cancer'.  That gives us until May/09/09 to finish the fills.  Then in three months time (which I was told yesterday will likely be the time for my exchange surgery) I'll either go back to Dr. Miles... or to another Plastic Surgeon that actually is covered through our insurance company... that's too far down the road and far away for me to worry about now.  

  For today I'm going to be grateful to be back on track with the reconstruction... for having so many great people in my life that put up with all of this 'stuff' right along with me... and that my closed wounds actually dictate my being able to have an actual shower today :):)  

Slow & Steady... Like a Turtle... Relatively...

  I realized today that it's been almost a month since I've entered a post here.  That's probably got a lot to do with the fact that I try to live by the 'If you have nothing good to say... don't say anything at all' motto.  The past few weeks have been an effort in frustration for me with my reconstruction... as well as other areas of daily life.  I thought trying to sell myself to a potential employer was tough BBC (that would be 'Before Breast Cancer') but now that I'm unable to 'push/pull/lift' anything, it puts an other ding in my fender so to speak.  None the less, I plug away and know that 'something' will present itself... if I dig enough for it :)

  As far as my reconstruction goes... it hasn't been going anywhere... except perhaps backwards.  I should be keeping better notes for myself as I find myself staring at the calendar, wondering what happened/when?  Let's see, if Feb/10 was my surgery... Feb/18th was being deemed 'Cancer Free' and getting my surgical drains out... Feb/24 or 25 would have been getting my stitches out.  That would have put my first expander fill on the first week of March; 60cc's on the L only (I had zero fill on the L @ time of surgery and 60cc's in the R).  Mar/10 or 11 was 100cc's on both sides... followed by 60cc's on both sides on Mar/17.  That would put me at 220cc's and our aim is about 450cc's.  More than half of the race still lays in front of me and I'm chomping at the bitt to get back at it!

  I was learning that dealing with the pain of the fills and the shifting of the expanders in my chest were factors that could not be ignored and hoped that would be the worst of the entire experience... that would take me to the third week of March... when my incisions started blistering/opening/bleeding and led to about 8 stitches (4 on each side) on Mar/23rd.  Before the stitches I had been doing everything I could to keep the wounds dry/clean and in optimum healing mode... no showers (only baths & washing my hair in the sink), trying to fashion bandages that wouldn't touch the wounds (while keeping them safe and protected), cutting holes in t-shirts to wear around the house (to keep my 'parts' al fresco :) and reminding myself to cover up before going outside :), sleeping carefully/uncomfortably on my back (trying not to let the covers brush on me too much/trying to keep the cat from walking/pouncing/laying across my chest), trying not to sweat too much while exercising... All the while trying not to drive David (or myself) insane by allowing this to take over my every waking moment... speaking of waking moments... I'm weaning myself off of the sleeping pills I've been taking for the past two or so months... has not been pleasant...  The stitches finally came out yesterday and the incisions look good... as do the other two blistered areas that opened up through the week (but that's another matter entirely... and hopefully on their way to healing).  

BUT... other than that... I'm relatively fine :)

  I know all this will be over some day... well relatively over.  I'll get my wounds healed, get back to getting fills and fussing about the pain instead of the slow healing process.   Then I'll get to hope that the Plastic Surgeon says we can do the exchange surgery before the date of our calendar year end for insurance coverage at the end of May (which is highly unlikely at this point).  I'll get to have surgery to exchange these 'turtle shells' in my chest for squishy implants that (if all goes well) will look and feel almost like real breasts.  Then in another few months (if I choose to) I will be back at my Plastic Surgeon's office to have some skin pulled and twisted, snipped and stitched... to create some fipples (fake nipples) to top off my foobs (fake boobs).  And a couple of months after that (if the skin doesn't atrophy or become infected and actually heals as a mound of puckered skin) I'll be back again for tattooing to create areolas that look just like the ones I had two months ago!  And then if nothing goes wrong in between... I'll be back in surgery in about 10 years getting the implants replaced (nothing lasts forever!).  

  I sit and laugh, wondering if someone reading this would see this as 'self indulgent' and whiney.  In all sincerity... I suppose it is... BUT...  I'm actually relatively excited about the whole process.  I suppose like anything in life... it's the effort/stress/will power we put into something that makes the end result worthwhile.  My new favorite saying is "Plan for the worst ... and hope for the Breasts" :)

Lisa 

  

Does Fear Hurt?

I would have to say 'Yes, fear does hurt'.  I think that fear cripples us, stunts our personal growth, makes our muscles seize up, clouds our vision of events that often have a 'sunny side'... yet we allow our fears to swallow all the light... leaving us only the grey.  So far on this journey I never wanted to take... I have found 'fear' to be my worst traveling companion.  

  Right now I'm going through the 'tissue expander fills' stage.  This link will take you to an page on expansion that was passed on to me by my friend Dar and is the best explanation I've seen.  Thanks Dar :)

  My first fill was on Tue/Mar/3 and like so many other phases of mastectomy and reconstruction, I had read nothing but dread and doom about it.  Not once had I read or heard a woman say 'Oh, the fills aren't so bad'.  All I was hearing/reading was 'The fills are horrible, the pain is almost unbearable'.  So... I was scared beyond reason trying to prepare myself for my first fill... preparing for the (to me) unknown.  I think I slightly overcompensated and went in to the Plastic Surgeon's office telling myself 'this will be a snap'!  After all, everyone said the 'Drains' were hell... and I seemed to navigate them okay!  I was in for a wee bit of a rude awakening! 

  The 'fill' itself wasn't so much the problem... it's the muscle spasms and tightening that takes place for about 48 hours afterward.  Since the skin across the front of my chest (aka under construction and becoming my 'breasts' :) is totally numb,I don't even feel Dr. Miles (or her assistant Cheryl) locating the metal port with a magnet, that's on the expander, that's under my skin, that's behind the muscle that used to be attached to my ribcage!  I do however sometimes feel the needle as it penetrates the muscle!  The first time it almost made me jump out of the chair... but yesterday (when I had my second fill) I knew what to expect, the fear wasn't so overbearing... the pain was minimized... even though the experience was pretty much the same. 

  After some pretty heavy duty pain on the night of my first fill, I got the picture that this phase wasn't going to be 'a snap' and needed to be shown the respect (and pain medication!) it deserved.  All I hoped for was that 'fill #2' would be no worse than 'fill #1' and so far ... so good!  'They' say the fills get worse as you go along (I'll probably need 4 - 5) ...but I say... perhaps that's only if you're toting fear along with you?  For now I'll just try to take it one day (sometimes one hour!) at a time... all the while keeping my mind focused on those 'squishy, almost real feeling foobs' (foobs = fake boobs) that I love reading/hearing about that come at the end of this trip!  Some women actually call them 'their reward' :) ... I just think I'll be happy to get on with life... and call them 'My Boobs'! 

The Laughter In Between...

  My Mom (who I was so glad to have with me during my first week of recovery from surgery) pointed out that although she could relate to my feelings of woe at heading into reconstruction... that she felt a poignant chapter of the story had been left out of my Blog... the 'elation in between'... and I agree. 

  Once the initial shock of what my body had undergone had sunk in and I saw that I had made it  through... the euphoria took over.  Somewhere in the middle of our laughter and joy of having made it through the surgery, I realized how overwhelming my fears had been and the affect they had on me.  I felt that this was going to be the one thing that was bigger than me... after all the battles I've already fought in my life... Breast Cancer was going to bring me to my knees... crying and saying I just wasn't strong enough to deal with it.  

  Thankfully, I was mistaken... I was strong enough... I made the decisions that I didn't want to make but no one else could for me... and I rid my body of this horrible disease... hopefully for good!  We laughed until I was afraid I was hurting the muscles in my chest, we wrapped me in pink ribbons and took photos... declaring me 'Mrs. Survivor'!  My Mom (at a moment's notice) got on the Clipper ferry and walked into our apartment ready to do whatever had to be done... and then some! :)  My sister drove down from Victoria, filled with support and openness and love... and showered them over me.  David was here, in the kitchen with Mom & Linda; cooking dinners, doing the cleaning, laughing and swimming in the joy of having the surgery behind all of us.  

  I was so grateful just to have an itch scratched under my 'too tight' mastectomy bra, to be able to sit in the bathtub and have David wash my back, to be able to feel well enough to make phone calls/send emails to say 'I Made It'!.  My doctors were amazed at not only how well my body was healing... but at my wonderful, positive attitude... choosing to make this bad time into something positive and keeping my eyes on the end of this journey... focusing on beating this disease and getting back to being 'Me' :)  The day of my being announced as 'Cancer Free'... David, Mom & I drove out to Snoqualmi Falls & North Bend; two places we love... to share them with my Mom and celebrate... 'Life' :)

  Those great moments are certainly all a part of this journey... this roller coaster... I realize my blessings of being beyond Cancer... now I'm riding the track in this rickety cart, on this crazy ride... no longer in fear of free falling to my demise... just holding on for dear life and waiting for it to slow down to a stop... so I can get off... and stroll along calmer paths...

The Other Side...

  Going through the dark and fearful door... 

and emerging on the other side...

With barely an opportunity to catch my breath...

I stand in a daze, wearing my unwanted and slightly scuffed Pink shoes... 

knowing in my heart that I have many more miles to travel in them...

filled with twists and turns...

before I can peel them away from my tired feet. 

Realizing in one fashion or another... 

they will somehow become a part of me and stay with me the rest of my life.

  Temporary, foreign objects within me creating new and unnatural feelings...

pressure, pain, tightness, weight...  

and with them, bringing that all to well known feeling... 

Fear... 

returning to loom over me again.

I vow to myself as I lift my eyes to the new path before me... 

to do all I can not to allow it to lead my way.

  In a quiet pond by the roadside... 

I pause and see my reflection looking back at me.

My body a testament to the war I'm waging... 

the scars I'll bare the rest of my life... 

that the rest of the world will never see.

I do understand that I am to be grateful... as not all escape this battle with their lives... 

Yet I shudder in fear of the new unknown... 

the price I have yet to pay for making it...

here to the other side... 

  And so the Cancer is gone... I've been given a 'clean bill of health'... 

Now I slowly scramble down the rocks...

from the hill of elation the news had taken me to...

and shuffle along in my dusty Pink shoes... 

ill fitting and not a color or style I would ever choose... 

To the valley where I will begin my reconstruction...  

and set out on this leg of my journey... 

Here on the other side... 

Biggest Decision Of My Life...

... and I made the right choice :)  

  My breast surgeon recommended my left breast be removed due to DCIS & ALH.   Faced with a future of unsurity and coping with scans/mammograms/biopsies on my noncancerous breast, which showed several areas of ALH ... I made somehow found the strength to come to the decision to have a bilateral mastectomy.  Today Dr. Lee said she was happy (for the first time since I met her in September, '08) to tell me that she had 'good news' for us. 

  My pathology showed that no other Cancer was found in my breast tissue... they had clear margins of removing what was there... AND... that there was far more ALH in my left breast than she had anticipated.  Dr. Lee told David & I today that after seeing my path reports... she knew beyond a shadow of a doubt that I had made the right decision to have the bilateral.  

  I had already confirmed the decision in my heart and mind... hearing her say those words today still removed a weight from me that words could not begin to explain.  It was like a dark, cold, frightening blanket was literally lifted away from my body.  

  I sit here now and rub my weary eyes... for the first time in what seems like too long a time... recognizing the vast difference between a sigh of anxiety... and a deep, cleansing sigh of relief... 

  Maybe I'll actually sleep tonight... 

  Cancer is behind me... reconstruction and life... straight ahead :)

  Lisa xo