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'!