364 Days Ago...

I sat in this very spot, looking at the snow piling up outside our West Seattle window... through tear filled eyes... trying to get my head around what lay in front of us. Deconstructions, reconstructions, looking for Cancer lurking in other parts of my body... wondering how not only could I get through this... but if my Husband of just 10 months would be there with me... when I reached the other side.

This morning I look out at the green grass on the school playground... the sun rising, pink daylight... kissing the clouds 'Good Morning'... I think about all that's happened over the past year, the fear and hope and tears and laughter and realize with a sigh of relief... that we are almost at the end of this leg of our personal 'Amazing Race'. I know there will be other trials and tribulations... *shrugs* that's what Life is all about! but I don't mind admitting that I'm very happy to put this part to rest.

Do I worry that the 2% chance I have of having another 'Breast Cancer' in my life time... will it be the 100% of 2%? No more than I worry about getting hit by a bus... or lightening... or Cancer ravaging some other part of my body. We're all dying... we start dying the moment we are born. The trick is not to waste precious Life... pondering how we will (and we all will) one day lose it.

This Christmas I will be present... not worrying about the future... or regretting the past... just 'here' soaking in everything around me, truly realizing how rich my life is with 'gifts' every day. I have all I want and none of it could be wrapped in paper and tucked under a tree, I have the most precious gifts of all... Peace, Love, Health and Soundness in my heart... I wish everyone the same :) My wonderful husband is indeed not only by my side... but on my side! and I on his!! As we embark on the continuing journey that is our life together, he prepares for the challenge of climbing Mt. Rainier to raise money for Breast Cancer Research... and though I won't actually be beside him on the climb, I will be doing everything I can to make it all happen... and will always be on his team!

Lisa xo

David's Taking the Challenge!!

... and joining the Fred Hutchinson Research Center's 'Climb To Fight Breast Cancer'!! Click here

http://climb4cure.blogspot.com/ to visit his blog!! We'll be doing all we can to round up donations over the next few months and hope that you will be a part of him reaching his goal!

Yeah!! GO DAVID!!!! :D

Filling up the empty Canvass...

I generally start off a new entry here by having a quick read through the last one, sometimes it's difficult to tell without looking at a date... whether it was last week or last month... or in this case... over three months ago. I think one of the (many) reasons I don't post here too often is that if I can hardly stand thinking about this... it leads me to wonder who would want to keep reading about it?! I made a pact with myself to keep all of my 'woe is me' grumblings confined to my (oh I'm soooo thankful for) bi-monthly YSC meetings, and I intend to honor it. Nice thing is... most of my grumblings at the meetings aren't grumblings at all :)

As for an update in the world of my 'breast reconstruction'... it continues... but is going pretty well. Ten days ago I had an 'in office' procedure with Dr. Miles to create nipples out of my skin. DCIS is in the 'ducts' and therefore the Areola & Nipples cannot be spared in surgery, many surgeons say anyone who does leave them in an attempt for 'better' esthetic results, is pretty much defeating the purpose of the surgery in the first place. Since February when I had my bilateral mastectomies, I've been looking at an image of myself that before then had only been seen by me in photographs on plastic surgeon's websites. Though not a 'look' I'd ever aim for, I find it incredible what we can 'accept' when it becomes our 'reality'. A few months before my mastectomies (shortly after my diagnosis, when I was trying to decide what surgery I would have) looking at other women at this stage of reconstruction... literally made me feel ill. I knew that although it was only for 'Me' (and David of course) and that there was the ever present risk of infection... that I wanted to go ahead and have the job 'finished'. Get the 'cherries on the cupcakes' :) so to speak.

After about 2 hours of snipping, stitching and cauterizing... I had two mounds of what we hope will be nubs of scar tissue that won't completely disappear, where before she began her 'magic' were blank canvasses of skin & horizontal scars. This was a good time not to have any sensation, as with a few Lidocaine injections... I felt very little pain. I don't think anyone (other than women who have been in a similar situation) could ever understand the emotional impact (relief/joy/groundedness) of looking down and seeing something more familiar, more like her own body... than she's seen for a long time. I actually shed a little tear of happiness at the sight. Even through the macabre scene of the stitches and reality of the surgical procedure... I had no trouble seeing the beauty of it... the thought occurred to me that it must be what it's like to see a brand new baby :) all bloody and gunky and ... amazing and wonderful :)

This put me back on the grid of antibiotics/no exercise/no showers/daily dressing changes/etc. and as in the past with stitches with me... we'll just watch and see what happens. On my first visit back last Tue, when some of the stitches should have been removed I was told that everything looked 'okay' but that she wanted to give my 'thin skin' more time to settle and heal. I can't imagine why we'd try to rush anything at this juncture? ;) so everything is still pretty much as she left it. No signs of infection and everything seems to be healing! I'm being 'very good'! and following her instructions of no 'sweating/exercising'! That's okay... it's Eggnog time anyhow ;)

Gosh... so much more... I have a JOB!!! I'm working at an artist's supply shop in Sodo called Daniel Smith and really enjoying it! I make no money and have a terrible schedule (work every weekend!) ... and I still like it ;) I started off training in the Frame shop (something I've always wanted to know how to do) and lucked out to be working with one of the coolest people I've ever met :) Somehow the cosmic universe delivered me a 'low stress... there are no art emergencies' guy to train me in the shop and pass on the great skills he has in this trade. I can't imagine how differently this would all be playing out... if I was learning (or trying to) under someone who was stressed and demanding... I can't help but believe that I'm exactly where I'm supposed to be. I've had this feeling before and trust me... I don't have to be reminded to enjoy every minute of it! I am :) I have those 'internal flutterings' of knowing there's some real change happening for me... I believed from the moment that I heard the word 'carcinoma' coming at me through the phone... that this was going to be another one of those big, bad, hard to deal with but worth the pain... 'growing spurts'! Little did I know at the time... just over a year ago... that I would get to really appreciate what it means to 'blossom' :D

Lisa xo

Booby Prize...

(Wikipedia Entry)

A booby prize is a joke prize usually given in recognition of a terrible performance or last-place finish. A person who finishes last, for example, may get a booby prize such as a worthless coin. Booby prizes are sometimes humorously and jokingly coveted as an object of pride.

Booby prizes, however, may not be given just to those who just have a terrible performance. At times, booby prizes can be given to all non-placing participants of a competition.

It's been more than a month since I've posted here and I suppose I'd consider the in between 'settling time'. I was hoping (and continue to hope) that I will adjust and accept what continues to feel foreign to me. That's not really an accurate description of what I feel... because a big part of the problem is that I really don't 'feel' at all. With the DCIS/ALH/ADH that was removed from my body... along went the tissue, fat and most importantly, the nerve endings that allowed tactile sensation to travel from the skin of my breasts to my brain... sending messages of touch and temperature. Ironically enough, there seems to be no shortage of the sensations of pain I feel, not on the surface but deep in my chest wall... along with never ending 'pings and pains' in various areas of my breasts, which I keep trying to convince myself is signs of nerve regeneration. In actuality... I have no idea what causes it.

My breast surgeon had made it crystal clear to me that I would lose tactile sensation to my breasts and that it was part of the price paid to rid breasts of cancerous cells. That sounded like a fair exchange at the time and even now when I think of it in a logical sense, the trade is certainly a worthwhile one. The doctors did their jobs now it's time for me to do mine and move my focus to the positive aspects of having dealt with Breast Cancer.

This week my brother lost a good friend in a tragic car accident, the kids ventured back to school, I got to spend the weekend with my best friend, relaxing and enjoying great music... The big wheel keeps on turning. Time to thank the universe that I'm here to accept the 'booby prize'... adjust... accept... and carry on...

Lisa ox

Light(s) ;) At The End of The Tunnel !

... I just copied this from an email I wrote to my friend Dar this morning... this pretty much sums up today :) Soon I'll fill in the space that was the past week...

I am happy to report that I'm feeling more like 'myself' than I have in a long time... physically and emotionally! It's a tremendous relief to see (and feel!) that these new breasts of mine are very ... 'real' :) I was sure that after the surgery and for the rest of my days that it would be immediately apparent that I had a 'boob job' and had resigned myself to the fact that I was just going to have to deal with it. I worried about being defensive and feeling the need to explain myself... (as I have felt the need to do for most of my life... with no real gain to anyone... including me!). You know, 'Oh, it wasn't by choice... ' blah blah blah... Anyhow... from the way things look now I don't even have to give that a second thought! Everything looks proportionate and fitting and humanlike... and I trust if I take good care it will stay that way :)

That said... I'm off to find another sports bra that fits me so at least I have a couple to rotate for the next month or so. I'm on instructions of 24/7 with a sports bra & compression strap around the base of my new breasts... funny thing is, that might sound uncomfortable... but compared to bare chested with the expanders in there... this feels like A Dream Come True :):)

Lisa xo

No Matter What My Head Tries To Tell My Body...

... it seems to have notions all its own!

On a conscious level... I'm more excited than nervous about my exchange surgery tomorrow, but all week I've been feeling 'less than 100%'. Not really 'sick' but my stomach is queasy, I've got 'bad guts', heart burn, feel tired, and on and on... I toss and turn all night then feel wiped out in the morning. Of course, I understand it's my subconscious having its way with me... and hopefully this will all pass once I shake off the after affects of the anesthesia!

I've been somewhat active on a couple of different Breast Cancer message boards since I got on this ride 10 months ago. Going through the 'stages' one at a time, from pre-mastectomy jitters, to dealing with drain tubes, to fussing about incisions healing (or lack there of) and I've finally made my way to 'Exchange City'! With each step comes its own set of questions/reservations/hopes and I've learned that many women get totally caught up on this one. Will I be too big/too small, what if I don't like the implants, what if my implants are asymmetrical and I think the expanders 'looked' better... and so on... I'm going to take the approach of an 'expectant Mother' and say as long as all the right parts are in the right place... that's enough for me. I've seen results that could stand their own in a horror movie and know when to consider myself fortunate. It's very humbling to see/hear someone who has something to actually cry about when their reconstruction goes wrong for whatever reason... I have all the empathy in the world for these women and thank them for being brave enough to share their stories. It's really kept me in check, kept my perspective of the 'big picture' and where I fit in it... on a fairly level keel.

So... now I've done my duty as a friend and family member, assuring everyone that 'It's Okay... I'll be fine' and thankfully I have David to turn to for my necessary dose of reassurance where he tells me 'It's Okay... You'll be fine... it's almost over'. I smile at his strength and sincerity... my head agrees with him 100% ... and by this time tomorrow... I'm sure the rest of me (complete with tightly bound, new squishy breasts) will be on the road to feeling the same.

Lisa ox

Arrrrrghhhh! ... to... Ahhhhhhh! ... I Hope!

So... This gives you an indication of the vast departure from Tissue Expanders (left) to Silicone Implants (right). The big grey circles on the Tissue Expanders are the 'ports' This is the area where the needle is injected during expansion, through the skin, through the port, allowing saline to be added to the expander form. Thankfully mine are full and with clothes on... look almost like breasts... many are not so fortunate. David had seen enough photographic evidence (from my showing him) on the internet to know... I really am 'one of the lucky ones'!

And just *looks at calendar* 26 days from now, on July 17th... I will be getting Tissue Expanders out of my chest and having them replaced with squishy implants. I know I've been wishing the days away a lot over the past few months, willing the 'next phase' to come, but this is one I honestly can't wait for!

I've heard women in the same stage of reconstruction that I find myself now in saying "It's pretty much like having margarine tubs stuck under my skin" or "it's like what I would imagine (in a nightmare) that someone injecting cement under my skin would feel like". Within the confines of my bi-monthly meetings with the girls of the YSC (where I'm agreeably restricted from revealing any information given by our members... but I'm sure they won't mind my revealing) I hear that this is the 'worst' stage of reconstruction. NOT to be confused with saying that this is the worst part of Breast Cancer... or even DCIS or Crappy Results on a BRCA test!! But from what I understand, once one starts down the road of Breast Reconstruction... 'THIS' is the crappiest part on the roller coaster ride. Of course, that only applies if you're like me and very fortunate not to have any real complications!

I looked at myself in the mirror this morning, fresh out of the shower, as we were getting ready to pick up the kids for a 'Father's Day Breakfast' and thought... 'what I see now, would have made my knees buckle nine months ago, when I was originally diagnosed'. I think in all of his worries, David was most afraid of how I would react to seeing my body after surgery... thankfully my reaction was an accepting one. After living through the past nine months... and learning the reality of all that can go wrong, from being able to see and hear about other women's experiences with Breast Cancer... I looked at myself this morning and thought... actually ... I knew... 'I'm so fortunate to have gotten through all of this as well as I have... and I'm so happy I'm almost at the end of this part of the ride'!!

So... 26 days... 1 1/2 hours in the OR... maybe or maybe not an overnight at Swedish... (Great that Dr. Miles will okay a stay if I feel like I need it). And hopefully only a few days to feeling okay... myself... real... I don't know what I'll feel. Less invaded and more human I hope! I've told myself a million times that I can't expect too much from this surgery ... outside of basic esthetics and swapping hard for soft. I'll still have the aching pains across my ribs from the tissue being removed. I will likely never have any real sensation on the skin of my 'recreated breasts'. I still have to go through physiotherapy for the Cording on my left side. Which I will start next week. It's so insignificant compared to what other women I have met are dealing with... BUT... it is Mine... and we all have our own stuff...

Lisa

From BreastCancerCare.org/uk :

Cording

You may develop pain that feels like a tight cord running from your armpit, down your upper arm through to the back of your hand.

Cording is thought to be due to hardened lymph vessels and can appear six to eight weeks following surgery or even months afterwards. Cording usually gets better and the symptoms go away, though you may need physiotherapy to stretch the cords.

Change in sensation

If you’ve had your lymph glands removed you may temporarily experience a change in sensation running down the inner side of your upper arm.

This happens because the nerves running through the armpit often have to be disturbed to reach the lymph nodes that lie behind them. This can lead to a number of symptoms:

• loss of sensation or reduced sensation
• numbness or coldness
• weakness in the arm
• sensitivity to touch or pressure
• burning or tingling sensations.

If you’ve had a mastectomy you might have similar symptoms in your breast area.

BoobCakes :)

Show Me Your CupCakes ;)

This is what happens when you ask me to provide snacks for a YSC meeting :) Gluten Free BoobCakes... each with unique nipples! This is the 'frosting on the cake' that we 'reconstructioneers' all look forward to!

Keeping focused on "So Glad I'm Here"...

instead of 'How The Hell Did I Get Here"?!

David & I after finishing the Susan Komen 5k June/07/09

I expected it to be a surreal day... and it was indeed! Lots of mixed emotions, thankfully many of them good ones! This certainly isn't somewhere I'd projected myself to be a year ago... but what matters most is that I'm here and I've got some great people with me! David & I crossed the start line together and crossed the finish line just 20 seconds apart :) George, Yohko, June, Megan & Marshal were there to meet us!!

After looking for some time, I finally got to see a few of the women from the YSC group! We were scattered about with some of us running but most of the group did the Co-Ed Walk (Wendi did Both!! :) It was great to see some familiar faces and I have to admit, I found it more than a little unsettling to 'know' the eyes of every woman in a pink shirt :( ... yet also found comfort in the commonality of our 'sisterhood'.

My run was good, nothing spectacular... my time was 25:10 which is a nice, slow pace. I coasted through most of it, carried along by the adrenaline of the other runners. I did get a tiny spike of that 'runner's high' about 2/3 of the way through and thought for a moment how 'effective' it would be to strip away my top and bare my badge of justification for being there... but of course, I didn't and wouldn't. It's just that sometimes it's tough to 'look' fine and 'be' something else.

Hopefully the 1.7 million dollars (and counting) raised by this event... will be a part of the answer to finding a cure to Breast Cancer. So that someday we'll run for something else... and won't feel the need to bare our scars... to show the world the price that was paid for 'being here'...

I've Never Been On The Cover Of People Magazine...

Last night I watched a repeat of Christina Applegate's appearance on the Oprah Show.  I was glad that I hadn't seen it when it originally aired a few months ago.  It was amazing to feel so many different emotions... connections as I listened to her and the others on the program.  Nodding my head in all the right places, feeling my own lip quiver as I watched the eyes welling with tears on the screen.  

There were a couple of times that I was really disappointed in not only the lack of preparation on Oprah's part (she had no idea what Christina was talking about when she said she had 'expanders' in her chest) but also at the lack of open information on Christina's actual diagnosis (which I understand to be DCIS).  

My heart was filled with pain for her as I watched her describe how she first learned of her Cancer.  I squirmed in my seat as I felt her discomfort in explaining (what I saw as justifying') her 'Non Invasive Cancer Diagnosis'.  I felt pain for every woman who ever feels the need to explain her decisions, which may seem 'radical' to those who have never had to make the choices.  I mused at the thoughts of how we perceive 'celebrities', often thinking that they are some higher examples of ourselves.  I was ashamed to think that many would feel Christina's Breast Cancer was any more important than any of the audience members (or those viewing at home)... just because she is 'famous'.  

In the end though my feelings were more of gratitude.  Gratitude for Christina Applegate being brave enough to share her story, in hopes that other women will have more awareness, more access to early detection.  Gratitude for Nancy Brinker for devoting her life to her sister's memory in creating a foundation that changed the way the world sees Breast Cancer; Susan B Komen Foundation .  And most of all ... gratitude for finding the lump on my right breast and having it investigated early enough... to find that it was nothing but a harmless cyst... and also uncovering the DCIS in my left breast at the same time... 

Don't Be Afraid of the Big Bad Boobs... errr.. Wolf!

  It never ceases to amaze me that I continue to find myself in foreign waters, wading through this entire Breast Cancer/reconstruction trek feeling lost... at loose ends.  Every time I think that the questions and insecurity are behind me... I realize that I'm still spinning my wheels, trying to find answers, wishing someone else would drive this rig or at the very least, map out the trip for me.  

  I had resolved several months ago that I had to put my trust in my plastic surgeon and follow the path we had chosen and the instructions that went along with it.  Everything seemed to happen so fast when all those decisions were being made.  David & I sat nervously in the exam room, preparing ourselves for our first meeting with Dr. Miles.  One of the doctor's assistants, Candice, a tall, rigid, blond woman came in and spoke to us.  She had me remove my hospital gown and stand wearing my jeans, against the baby blue photographer's backdrop so she could take a photo to record my 'natural breasts'.  She mentioned something about not worrying about my face being in the photo, it would only be my chest/torso, for future reference for the doctor.  I remember wondering 'why would I care if my face was in it'?  She asked about our home; 'do you have pets, any cats'? and went on to elaborate on how cat hair in mastectomy wounds could be tragic!  We'd have to make sure I didn't get any cat hair anywhere near my body after my surgery.  My mind trailed off and from there I could only hear 'wah wah wah' ... How the hell was I going to keep from getting cat hair on me? ... It's unreal the things you worry about... when you have so many things to really worry about.  

  As soon as Dr. Miles came in the room I had an immediate feeling of 'Organic Calm'.  I'm not sure exactly what that means?  Just a sense of being in the presence of a 'real person'.  There was nothing fancy or 'plastic' about her.  She seemed to have a good balance of compassion and professionalism.  Her overall appearance was anything but 'plastic' and I for whatever reason found it very soothing to know I was putting my care in the hands of someone who made a living from making people look like Ginger... yet she chose to be a MaryAnn.  We spoke about my natural breasts, which she referred to as 'perfect' (symmetrically speaking)... well perfect, aside from the DCIS.  

  She took some measurements and from then on our conversations regarding breasts were no longer focused on the 'perfect' ones that Mother Nature had given me... but the 'new, exactly as I wished them to be' breasts that she was going to create for me.  We agreed that with my body structure, that having larger breasts would not only be flattering but also very well suited to my dimensions.  All these years I've been saying 'My ribs are too big'... turns out my ribs were fine and my breasts were too small.  And as fate would have it, that was about to change.  And finally someone was going to start making some decisions for me or at least help me decide for myself.  

  And now I find myself, almost 3 months after my mastectomies, wondering who is making the decisions and if in fact... who exactly is at the wheel?  With all of the frustration of my skin opening I think I fell off the program of putting my trust in Dr. Miles hands.  I started wondering if she really did know what was best for me.  As my shape started noticeably changing, I started listening to 'other people's opinions' and became unsure of my own feelings regarding our (mine & Dr. Miles) decision on our ultimate goal for size/structure of my breast reconstruction.  A week ago I told her that I wanted to deter from the plans she had laid out for me and stop the expander fills sooner than planned.  I was afraid of making the wrong decision, afraid of not being given the approval, that up until this point... I didn't even realize I wanted/needed.  

 I see now that in my haste to hurry up and wait, I had neglected to not only be sure I was doing what I wanted regarding my reconstruction, but also forgot to ask the questions that certainly needed answers.  I need to assure myself that I am educated well enough to take the best care possible during my 'settling time'.  Can I go swimming?  Will the same incisions be reopened for the exchange surgery?  Am I restricted from exercising my Pectoral muscles until (and beyond) the exchange surgery?   What kind of massage can I do to keep scar tissue from forming?  

  I suppose fear/insecurity is the wolf that's always at our door... it's up to us to feed it and have it hang around... or ignore it and shut it outside... keeping it at bay. Or better still, teach ourselves what we need to know to keep us from hearing the scratching in the back of our minds.  I think it's time to stop feeding the wolf and get back to nurturing myself. 

 

Done... Done... On To The Next One...

(Foo Fighters lyrics for those of you who aren't fans :)

  And All My Life is what it seems... done with one (fill in the blank) and on to the next one.  We were joking with the kids this weekend when they asked 'Are we there yet'?  Our answers string into a comical game of 'Here and There' between the four of us as we clock on another 200 miles in a weekend on David's truck.  

  'We are here' David will say.  I'll chime in 'When we were back there, we couldn't wait to get here... when it was there and there was here and now we're here and still wondering when we'll get there'.   We all laugh and the kids play along with the game... but upon (grown up!) reflection... I really would like to learn better to be 'Here' and enjoy it ... rather than always racing ahead in my mind to be 'There' only for 'There' to become here and find myself wanting to go 'There'.   :)

  That said... I've passed a Big Milestone in my reconstruction!  The expander fills are DONE!  and I will not have to go back to see my plastic surgeon until early August to have my exchange surgery done.  In the meantime I will be thankful that my skin has finally settled down and I'm no longer dealing with daily dilemmas of 'blisters/draining/and fear of infection' *huge sigh of relief*!!  I have been spending some time on a message board where members are able to share stories and photos of their journey with Breast Cancer.  I have learned beyond doubt that my situation could be far worse... in dealing with a similar diagnosis and far less success with healing after surgery.  I've seen some results and read some stories that make my experience look like  walk in the park.  I've taken the hit on the head and will keep my mind focused on my good fortune!  

  I now will spend the next three  months taking care of my still healing and 'expanding' skin.  I still can't even imagine how great it will feel to have the implants in my chest instead of what now is akin to 'turtle shells' (I think my friend Liz after a recent feel of my expanders, said they felt like 'plastic tubs' haha) ... but I'll leave that for when I get there... for now I'll be happy to be here.  To be well... and without fear of Breast Cancer.  

  I was inspired recently by a book called 'The Victoria Secret Catalogue Never Stops Coming... And Other Lessons I Learned From Breast Cancer' by Jennie Nash and have decided to start writing my first book :)  I had a few emails back and forth with Jennie and shared my gratitude and plans to put my story on paper.  She was encouraging and suggested that I might even like to take some writing classes at UCLA that she gives.  I thought LA would be a long commute for school... and in my general fashion... I like to learn more by the 'sink or swim' method... and so I shall jump in and see if I can keep myself afloat.  

  I believe my experience with Breast Cancer is just that 'My Own'... but I also know that if other women shared what they learned in going through these difficult times... the journey could become a little easier for others.  I hope that by telling my tale... that maybe someone else won't feel as alone.  Maybe I can help other women get 'There' ... while still being present 'Here'.  

Lisa :)

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

Do You Have 5min 21 sec?

  For me, the most valued action that someone who cares about me can undergo... is to take a few minutes to do a little reading, researching on your own... to try to 'get your head around' what this whole Breast Cancer shituation (no, that's not a typo) 'feels' like.  

  I fully realize that no one (even if you've gone through it with a friend/family member/loved one who has battled the disease) can ever truly 'know' how this feels unless you actually 'live' it... I (from the bottom of the beginnings of my newly constructed boobs) hope that none of you (who aren't already doing so) have to 'live it'.  But maybe in 5min 21 sec to watch the video on the main page of the Young Survival Coalition website ... you could get a better understanding of wearing the 'bright pink shoes'... that nobody wants to wear...

  It's already been wonderful for me to have found this group of women, even though (so far) I've only been to one meeting and barely got to say 'hello' to some of them and introduce myself, before going in form my Bilateral Mastectomy w/Expanders on the day that would have been my second meeting.  I feel I have found some true kindred spirits there, and though I'd wish this disease on none of us... very much look forward to getting to know them better, share our laughter, tears, bravery & fears.  Maybe in a little under 5 1/2 min... you can 'feel' some of that wonderful feeling too... 

  Lisa xo

PS... Mantra for today... in preparation for tomorrow's appointments with Dr. Lee & Dr. Miles... "Lisa... Clear Margins... Lisa... Clear Margins... Lisa... Clear Margins... Lisa..." 

  If you have the extra 'stuff' in you... perhaps you could toss in a "Lisa... Surgical Drains Removed... Lisa... Surgical Drains Removed... Lisa..." BUT only if you have the extra to spare :)  If you don't have the 'extra stuff' No Problem!  The first one is the only one that really matters!! 

Thank you all for 'Chanting' with me :)

If You Want To Be More Loved...

... Be More Lovable! :)

*This note is 'one size fits all' :) and copied from the one I sent today to the YSC (Young Survival Coalition) group that I'm thankful to have found here at Gilda's in Seattle. Please forgive the sloppy formatting but Blogger doesn't seem to like it when I 'copy & paste!*

Hello Ladies :)

 I'm very happy (on this day of Love) to feel well enough to write
you a short note and to send you all some of the overflow of my
'loving cup'... which is 'very thankfully' being filled to the top...
and then some.  David is taking great care of me, my Mom is here from
Victoria and my Sister is on her way (from Victoria) as well.  I can
honestly say 'I've never felt so well loved'... and am very happy to
let you know that I'm actually feeling pretty good :)

 The past few days have been good and bad... fuzzy and clear... but
for the most part... not as bad as I had expected (Wednesday/11 @ 6am
was my 'turning point'). POST EDIT* It's now Tue/Feb/16 and reading this I just now realized my 'worst moment' was actually Thu/12 @ 6am... after my first night back @ home!  Lesson(s) learned: 1) Set alarm for about 3am to take pain meds and do so until you don't need it! and (2) Make sure to take an 'Anti Nausea' pill with your Muscle Relaxer if you're supposed to!!* END OF EDIT FEB/12 My surgery (as you probably already know)
went 'perfectly' and my Sentinel Nodes came back 'clean'... fingers &
toes are crossed for the same news on my breast tissue on
Wednesday/18th... and then I will let out a HUGE BREATH ... and get on
to getting through the rest of this... and not 'back to' but 'on
to'... Being ME :):)

 Hope you are all feeling Love on this day... and looking forward to
(very gently ;) hugging you (at Gilda's and elsewhere) soon!

 Lisa

PS... now David is going to (carefully/without wetting my dressings)
give me a bath... and then Mom is going to wash my hair in the kitchen
sink... Did I mention I was being 'well loved'?? :)

Ready Or Not...

... here I come and there you go!  I never thought I'd have to say 'goodbye' to my boobs... but I just did!  I wondered how I'd feel at this point in the grand scheme of things... I think a lot of people wondered.  I'm happy to report I'm anxious but positive! 

  Today started off on a very great note with receiving the call from Dr. Jones' office this morning letting me know my pathology report came back as 'Benign' (my new favorite word!) for my tissue samples from my Gyn. surgery last week!  

  This afternoon I go to the hospital for my injection for my Sentinel Node Biopsy which will be done at the beginning of my Bilateral Mastectomy tomorrow morning.   The dye is injected in advance and by the time they go in to find the Nodes in surgery tomorrow... they'll be 'glowing' and easy to find!  Let's just hope they're healthy!!  The Node samples will be sent off to pathology while I am in the operating room and (fingers & toes crossed!) will come back without signs of Cancer having passed through.  I have already signed a consent for a complete Auxiliary Node Disection (which is the removal of any and all nodes that can be found) should the Sentinel Nodes come back as positive.  *My belly just did a little flip/flop at the thought.  Should this be the case... I won't even know about it until after I awake from surgery tomorrow afternoon... but I think I'll go back to the promise I made to myself weeks ago... and will worry about that when/if I have to.  If they find any Cancer during the surgery tomorrow that we don't already know about... I'm going to be wishing I could be where I am 'right now'!*  I won't have the pathology report back from the breast tissue until next week.  For now I'm trying very hard to stick to the 'one thing/one day at a time' rule! 

 There's no question that I recognize the level of importance of ridding my body of Cancer over going through the pains (emotionally and physically) to get there.  My focus now is on hearing 'No More Cancer' from my pathology report on my first follow up with Dr. Lee, which I'm already looking forward to on Feb/18th.  I like that I more so see myself 'beyond' the surgery and working my way back to 'Me'... rather than dwelling on the thoughts of what Dr. Miles explained as what will feel like 'an elephant sitting on my chest' for a few days :p  As long as the elephant gets up and moves on at some point!!   

  Once we get through the surgery and back home... I understand the Surgical Drains are the worst of the first week or so.  I think I'm going to have (yikes!) 4 of them :|  But... Like everything else, we'll deal with it in turn.  First things first... get through the surgery and get back Home :)

 Okay... Now's the time to start emitting all the "Healthy, Cancer Free, No Infection,  Fast Draining, Fast Healing" ViBeS you can put out... I've got a wide open, positive heart... ready to catch all of them :)

  Lisa xo

  

No Flower Zone! :)

  Everyone who knows me, knows I LOVE FLOWERS :)  But so does our kitty Lily!  I have to stay on my toes to keep her out of petals and greenery... it's quite amusing as it seems she's 'possessed by wanting them' but I'm not going to have the energy to chase her!  so I'd like to kindly ask that no one send flowers after my surgery:)  I have a beautiful Orchid that I recently received that should keep me supplied with beautiful blooms for weeks!  If you'd like to send a note or email that would be nice... If your bent on 'sending something' ... gift cards from Safeway are good for prescriptions/groceries/flowers :):):)  Of course, no need for anyone to send anything... just knowing you are rooting for me is all I need!!

  So... now we're down to the wire and counting days.  Funny how time can be tricky... want it to hurry - it crawls... want it to slow down - it slips away... in reality, we all know it moves at the same rate, it's just how we deal with it doing its own thing.  In 3 days I'll be getting my injections for my Sentinel Node Biopsy and will be 'radioactive' for a day.  In 4 days we'll be arriving at the hospital at 5:30am to check in for my 7:30 surgery.  I would have thought at this juncture that I would want time to 'stand still'... but actually I'm more of the mind to get it over with and get on with it!  

  Thankfully all went better than I had imagined with my gyn. surgery on Wednesday and I feel quiet well.  I won't know until Monday when I call Dr. Jones' office if they found anything out of the ordinary in my pathology report and I'm not going to worry about it either... I have enough to think about.  For now I'll just call that a done deal and move on to more pressing matters.  

  As far as my bilateral mastectomy and reconstruction, I think I've read and asked all the questions I could and am going into this as informed as I could/should be.  I've been thinking of it as a situation where someone has told me 'You're going to be in a car crash.  It's certainly not going to be fatal, but you're going to get hurt and it's going to take a few months to put things right.  You'll have some pain, it won't be fun... but someday it will be over and done'.  David told me recently that I seem to be very 'matter of fact' about all of this... I don't know how else to be.  I'm trying to accept all of this and be as positive as possible... focusing on everything going as planned (with no surprises!  No More Cancer found in my pathology!) and getting beyond it.

  I'm very thankful to have met and spoken to several women, with various diagnosis of Breast Cancer, in various stages of treatment over the past couple of weeks.  I honestly feel so much better, so much more secure in my decision to have not only the breast where the Cancer was found removed... but also the other breast (which isn't clear either, due to the ALH) and my Sentinel Nodes done at the same time.  I have too many strikes against me to leave this to fate and I do not want to have the dark cloud of worrying about future Breast Cancer to hang over our lives.  

  I think the fear of the unknown is much more difficult to deal with than the reality of discomfort and adjustment... we're just about to cross the bridge between the two... 

  Thank you all for your healthy wishes, thoughts & prayers... we'll keep you posted and hopefully have good news soon!

Lisa xo

You've GOT To Be Kidding...

Have you ever noticed when you say those words... "You've got to be kidding/joking"... that whoever (or whatever the circumstance) you utter the words to (or about)... is generally anything but a 'joke'.  

With that in mind... 

I have a surgery booked for this coming Wednesday (Feb/4th) for a matter totally unrelated (I hope) to my Breast Cancer.  While going through my list of 'woes' with Dr. Okorn a couple of weeks ago, we spoke about my continuing to have unusually heavy/irregular periods and much more pain than I'd experienced in the past.  She suggested I go to see a gynecologist to discuss the possibility of having an Endometrial Ablation.  I wasn't really sure I could handle (physically or mentally) taking on any more than I already had on my plate... but the doctor told me I really should at least find out what was causing this.

  So... I'll add yet another doctor to my list... Dr. Karen Jones.  I got in to have an ultrasound done on the day of my first visit with her on Jan/21st.  During the ultrasound the technician excused herself and said she had to have a doctor check over the images to make sure she had all she needed to send back up to the Gyn.   After waiting about 5 min, she returned with a doctor to check out something she was seeing that she was unsure of on the images.  She assured me it's not an 'alien' (thankfully :p) but we still don't know what the 'area  of concern' actually is.

  I had a follow up with Dr. Jones on Jan/28th and she explained that regardless of whether it's a 'good time' to be having another surgical procedure, we really have to find out what this is.  She explained that she won't know what it is until the tissue is seen and possibly still won't know what it is until results come back from pathology (usually four days after surgery).  Most likely is a benign fibroid (which I am hoping for!).  It could also be just an unusually thick area in the wall of my uterus, a benign tumor on the inside wall or... something worse... I'll leave that for when/if I have to worry about it.  

  Before all this came up... I was anxious about my upcoming consultation with Dr. Miles (plastic surgeon) for my final meeting with her prior to my breast surgery.  My meeting with Dr. Miles is scheduled for Wed/Feb/4/10:30am... Now I have to focus my thoughts on how I can get from one side of Swedish Medical Center (after seeing Dr. Miles) to check in at Patient Registration at 11:00am for my surgery with Dr. Jones which is scheduled at 1:00pm!

  Maybe this is the Universe's way of keeping me on my toes?? Perhaps in my next life I'll come back as a Prima Ballerina :)

I've Requested an Early Valentine's Day...

As my surgery is scheduled for February/10th @ 7:30 am!  I will be having Sentinel Lymph Node Biopsies on both sides at that time as well and will have to have the dye injected the day prior.  I understand the importance of removal of these nodes to detect if any Cancer has left my breast(s) but am a little uneasy about the potential complications and/or side effects of the procedure.  I think this is one of those circumstances where I need to 'educate' myself without reading 'too much'!

  The surgery should take about 5 hours and if all goes well (which I'm sure it will!) I should be able to go home the following day (a two day stay in the hospital at the most!).  I realize that everyone is very different regarding recoup time, but I'm hoping for the 'fast track' of recovery and hope to be up and mobile within a few days!  From what Dr. Lee has told me from her experience, I will likely be more 'tired' than 'sore'.  One of the most important things for me to do will be to make sure I don't try to 'overdo' it!  Many women (after mastectomies) feel so good they forget to limit their upper body movement and end up making matters more difficult for themselves. 

  I've been reading lots of 'helpful tips' on what to do ahead of time, like moving items I use regularily from upper to lower shelves, do some extra cooking/baking the week before surgery and have things ready to thaw/heat up easily, give the apt. a good cleaning, etc., etc...  I've also gotten back on track on walking/running and am doing some Pilates here at home to get my body ready for the ordeal.  Being as fit as possible going into any surgery is a great way to help your body get ready to heal :)  I've always been a really great/fast healer... so I don't have any worries in that area!  

  I had a very nice talk with my primary doctor, Dobrina Okorn yesterday.   I had called on Tuesday in hopes of getting in to get a prescription for something to help me sleep and was told she had 'absolutely nothing' available until next week.  I requested a message be passed along to her, simply stating my name and that I would only need a few minutes of her time.  Literally seconds later, her nurse called back and set up an appointment for the following day.  I expected to have an 'in and out' visit with a prescription in my pocket and instead had her undivided attention for about 40 minutes :)  

  We talked about all that's happened since we first met on Aug/13/08.  Though that was the only time we'd actually 'seen' each other, she gets copies of all of the reports sent to her and had called on a couple of occasions to see if I was okay and if there was anything she could do for me.  After talking for a while yesterday she suggested I take a mild antidepressant as well as a mild sleep aid.  The antidepressant is something that is routinely prescribed for people having trouble sleeping and as well will hopefully help my chemicals get firing on all cylinders to help me cope emotionally with all of this.  And since I've coincidentally, seemingly ventured into the beginnings of menapause (night sweats that constantly wake me up) the sleeping meds should help me sleep through the night.  *funny I feel pained by saying I'm entering menopause... I'm slowly getting used to saying 'I have Breast Cancer'... perhaps that will get easier to say too??*

E  X  H  A  L  E... 

  Right now it is actually a relief to have a date for surgery and to feel 'a little' more comfortable about accepting that this is all happening to me.  Like most things in life, the first steps are the most difficult... 

*Deep Breath* ...

... and *E  X  H  A  L  E* .... 

  Decision making can be very nerve wracking.  I have gone through it with others and have had many struggles myself over things like: Which flight to book, what laptop to buy, get married/get divorced, start a business/end a business, what nail polish color to choose, have the lamb or the halibut, Pinot Gris or Sauvignon Blanc...  I sat down yesterday afternoon with Christine Lee (my Breast Surgeon) and started our conversation by giving her a brief overview of the past 14 months of my life and some of the other 'decisions/situations' I've been faced with (I won't bother recounting the events here... most of you reading this will know some... I gave her a 90 second snapshot of pretty much the whole 9 yards).  She sat and nodded as I spoke, her face soft and eyes caring... and then we began to speak of the matter at hand.  

  We went over the notes from Robert Resta (Geneticist) regarding my results from my BRCA1&2 tests, agreeing that although nothing definitive... a (slight) load off of my siblings and a welcome departure from having to be concerned about my Ovaries (at this time).  We also talked about the meeting David & I had with Wandra Miles (Plastic Surgeon).  Dr. Lee asked if I was going to continue to meet with other Plastic Surgeons (in hopes of finding a 'good fit' for us) and I told her that I was very comfortable with Dr. Miles and saw no reason to look further; it was only after this that she made it apparent that she trusts and enjoys working with her (even making a joke about 'if there are any problems with your surgery it will be Dr. Miles' fault... not mine' :).  I found this a very becoming quality, as she seems to go to lengths to allow me to make my own choices throughout all of this.  

  I told her that I have decided that I want to schedule surgery for a Bilateral Mastectomy with Immediate Reconstruction, with Dr. Miles placing the expanders on the same day.  She said that although she fully understood the pressure I am feeling and the level of anxiety it is causing, that she felt confident that I was making rational decisions for the right reasons and fully agreed with my choice of procedures.  I should have the date for my initial surgery within the next couple of days and hope it will be sooner than later.  Dr. Lee explained that since I'm having the Immediate Reconstruction it will make scheduling a little more complicated as not only will both of them have to be available on the same day but a larger block of time will be needed for an operating room.  Now that I have the wheels in motion and am firm in my heart and mind about the procedures... I hope they call and say it's next week!  I'd really like to get started to be closer to getting finished!  

  I was well prepared with a (long) list of questions as well as a voice recorder and will post notes later on what I learned yesterday.  For now... this is the information I received from Dr. Miles a few weeks ago... the information that caused me to go into 'meltdown' when I first read through it.  It's still by far my 'favorite read'... but gets a little easier to handle as acceptance settles in... 

TIMELINE FOR EXPANSION

1. Surgery Day: Once it is determined that you may have immediate reconstruction, placement of the breast tissue expander is done immediately following your mastectomy.  This adds approximately 1 1/2 - 2 hours to your surgery.  After surgery you are in the recovery room for about 1 hour before being transferred to your hospital room.  It is common to stay 1 - 2 days before going home.  

2. Stitch and Drain Removal: You will see Dr. Miles one week after your surgery to have your stitches removed and dressing changed.  Sometimes you will have seen your general surgeon before this and she may have changed your dressings.  Your drains will be removed by Dr. Miles ( or your surgeon) based on the amount of output.  The goal is for your output to be less than 20 - 30 cc from each drain per day before removal.  

  You will also be seen by your surgeon (or oncologist if necessary) 1 - 2 weeks after surgery to discuss your final pathology and treatment plan if needed *Let's all cross our fingers/toes that we don't have to go there*

*and another Deep Breath*

3.  Two Weeks Later: First Expansion!!  Providing that your wound is fully healed, we will begin expansion of the tissue expander.  This is done by either Dr. Miles or her nurse.  Take a Tylenol or Advil 30 minutes before your appointment.  This helps with any pressure you may feel afterward.  It is not uncommon after these expansions to feel muscle spasms in your back (especially at night) for a couple of days.  You may use your muscle relaxer medicine that Dr. Miles prescribes or your pain killers.  

4.  Weekly Expansions: You may come in once a week to be expanded or you may space these visits as far as you wish.  How many weeks this total process takes will be determined by how large you wish your breasts to be.  Generally we aim for symmetry with the unaffected breast.  Patients having both breasts being reconstructed generally have the choice of size open.  

5. Done Expanding.  After we reach our determined size, then we wait a minimum of 3 MONTHS to let the skin and muscles settle.  You can begin contemplating upon a date for your surgery to exchange your expanders for permanent implants.  We will discuss this with you at this time.  

6. Surgery To Exchange Implants:  Great Day!!  This takes about 2 1/2 - 3 hours and is an Outpatient procedure.  You can go home on the same day but also have the option to stay overnight.  Generally we do not need to put in drains for this surgery.  

7.  Stitch Removal/Dressing Change:  In 6 - 7 days we will remove your stitches and change your dressings.  Now we will have to wait while the implant 'settles down' before we can create nipples.  

8. Nipple Reconstruction:  Three months later.  Yes, 3 MONTHS.  The breasts change as the implants settle, and belly out and the breasts soften.  Now we decide on where the nipples should be.  Let's book surgery!

9.  Nipple surgery:  This takes about 1 1/2 hours and after recovery, you may go home.  It may also be done as an office procedure.  Dr. Miles will discuss this with you.

10. Stitch Removal: One week later we remove some of the stitches.  We remove the remaining stitches one week after this.  

11.  Tattoo:  Usually one or two months later, we will pigment the areolar/nipple complex.  

LET'S REVIEW:

1. Mastectomies and insertion of tissue expanders (Inpatient Surgery).

2. Two weeks later, first expansion.

3. Expansions every week until target size reached.

4. 3 Months later, exchange tissue expanders for permanent implants (Outpatient Surgery).

5. 3 Months later, nipple reconstruction surgery (Outpatient Surgery).

6. 1 - 2 Months later, tattoo nipple/areola.

7. 1 Month later, check color match.

8. DONE!! DONE!! DONE !!

TOTAL TIME: Approximately 9 to 12 Months.  

... *and another ... DEEP BREATH* ... 

The top example on this page  (taken from a random Plastic Surgeon's website) is a very 'successful' depiction of the procedures and an explanation of the progression.