The 'C' Word

Help Save The BOOBIES!!

2010-03-12T10:05:00.000-08:00

We're getting down to the wire for David's first fund raising event!! He's halfway to the $5000.00 commitment he made to donate to the Fred Hutch Cancer Research Center and to get himself an opportunity to summit Mount Rainer!!

Please consider giving of yourself... your time... your ART!... YOU! :)

For more information on the event and to see a list of our sponsors, please visit David's Blog:

climb4cure.blogspot.com . I've been hitting up friends from Daniel Smith for donations of their artwork and hope to procure some amazing, original art for the silent auction!!!

Icing on the Cupcakes...? !

2010-03-10T09:58:00.000-08:00

A year ago today, which would have been one month out from having my breasts removed... the idea of 'someday' being ready for tattooing seemed like a 'dream' to me. Now that I'm here *shrugs* it just seems like a reality... not unlike other realities that get taken for granted or just plain overlooked. I would have thought that at this point I'd be on the edge of my seat, waiting for the day I finally got to to back to Dr. Miles' office, giggle with Cheryl, pick out some ink that matched the photos we took of my breasts prior them going into the 'toxic waste heap'...

I think that what this really all amounts to, is the fear of something else going 'wrong'. Not that there's any great risk associated with tattooing... hell, check out the rest of me ;) but I have a fear of pushing things too far, for the sake of vanity ... and having something go completely awry. After all, this isn't a hair cut or anything... it won't just grow back for another try, and it isn't a cupcake or a daisy chain or even a leg worth of swirls... it's just trying to get back what I wish I hadn't lost... and I'm not sure that's within the realm of reality?

BTW... for anyone reading this... this is a prime example of why I don't post here often ;) I 'try' to abide by the internal rule that if you have nothing good to say... say nothing at all ... nuff said ;)

YOU are NOT Alone...

2010-01-04T11:04:00.000-08:00

What do you see when you look at this photo? A group of women, smiling, close, happy, enjoying each others company. What you can't see by looking at this photo... Breast Cancer. These are the women (some of them!) of the Seattle affiliate of the Young Survival Coalition. What you can't detect in the photo is various stages of surgeries, chemotherapy, radiation... fear, hope, trials, tribulations... you cannot see any of that, but you can see the LOVE, the WARMTH, the SISTERHOOD :)

We come from every imaginable background, from one end of the spectrum to the other. Various beliefs, education, financial status... some married, some not, some mothers, some not, some at risk of (or already beyond) losing the ability to have children as a spin out result of their Breast Cancer...

What we all do have in common is a diagnosis of some type of Breast Cancer and what we have as a group is a force beyond any other I have ever encountered. We all have different stories, different realities... I like to say "We're all in the same ocean, but have boats entirely of our own"... but in our daily struggles of keeping afloat amid the often tumultuous waters of treatment, we have each other. The bond, the strength, the hope that spreads with this commonality is one that continues to amaze me, and one that I'm very grateful for. Hearing the words 'You have Breast Cancer' throw you into an undertow where you may feel alone and drowning... I'd like to throw out a lifeline... one that I can't imagine having to have gone through this without.

To contact the Young Survival Coalition:

Email: yscseattle@youngsurvival.org
Direct phone: 866-541-1972 ext 4
Website: http://www.youngsurvival.org/seattle

To learn more about YSC National: www.youngsurvival.org

364 Days Ago...

2009-12-23T07:40:00.000-08:00

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!!

2009-12-15T18:17:00.000-08:00

... 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...

2009-12-15T17:19:00.000-08:00

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...

2009-09-03T08:21:00.000-07:00

(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 !

2009-07-24T09:45:00.000-07:00

... 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...

2009-07-16T12:28:00.000-07:00

... 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!

2009-06-21T18:20:00.000-07:00

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 :)

2009-06-11T11:41:00.000-07:00

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"...

2009-06-09T14:24:00.000-07:00

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...

2009-05-26T12:31:00.000-07:00

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!

2009-05-09T10:55:00.000-07:00

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...

2009-05-04T14:37:00.000-07:00

(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...

2009-04-23T08:11:00.000-07:00

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...

2009-04-15T10:50:00.000-07:00

... 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...

2009-04-03T11:01:00.001-07:00

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?

2009-03-10T12:38:00.000-07:00

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...

2009-02-24T11:20:00.001-08:00

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...

2009-02-23T15:01:00.000-08:00

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...

2009-02-18T22:18:00.000-08:00

... 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?

2009-02-17T07:42:00.000-08:00

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...

2009-02-14T12:41:00.000-08:00

... 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...

2009-02-09T12:32:00.000-08:00

... 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! :)

2009-02-06T15:44:00.000-08:00

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...

2009-01-29T17:02:00.000-08:00

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...

2009-01-15T14:48:00.000-08:00

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 ...

2009-01-13T07:24:00.001-08:00

... 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.

My Breast Surgeon is 'Stuck' in California...

2008-12-24T08:32:00.001-08:00

and I'm sitting by a heater... watching the snow fly... again!

Monday/Dec/22 was supposed to be the day that I would meet with Dr. Lee and initiate the plan to have my bilateral mastectomy and reconstruction with breast implants. Three days before this, I sat and read through the 'Timeline For Expansions' given to me by the plastic surgeon. I got about half way through and it struck me like a lead hammer... 'This is actually ME this is all happening to and this is going to go on for months'... I panicked!! My brain screaming 'WE CAN'T HANDLE ALL THIS'!!! I mean really... there must be some kind of a 'cap' or threshold on what people are supposed to be able to manage in any given period of time. The past 14 months have had enough 'LIFE' in them... for any one couple... to have lasted 14 years! And this is just the beginning of this 'slice of life'!

With the weather as it is and Seattle seeing the most snow/worst conditions in 10 years... public transit is a mess and I was getting ready to try to make my way to Cherry Hill on Monday morning, about 4 hours before my appointment at 3pm. My head was a blur... I was thinking 'I'll tell her I've decided against the mastectomies... no reconstruction... no implants! Let's just do the lumpectomy and biopsy the other area... no radiation... no drugs... no nothing. I need to get this out of me and get back to living my life... get a job... be a productive part of this family... be 'myself' again. Then my phone rang and I was informed that Dr. Lee was stuck in California due to weather in Seattle and wouldn't be able to see me until after the New Year.

...

*shakes head*

Okay, so I have a small nervous breakdown. My sister Tanya tells me I should have at least one a day! 'Just hang a sign that says "Having Nervous Breakdown... Be Back When I'm Done", then let it all out, give yourself a kick in the butt and get back to looking after whatever needs to be looked after'. Probably good advice, I'm sure the 'explosions' would be smaller if I had lots of them instead of saving them up for a 'Grand KaPow'.

Yesterday I got a copy of the letter that Dr. Resta (the geneticist) sent to Dr. Lee with his findings on my BRCA testing. In the letter he states that even though my results were 'normal' that with my current Cancer and my family history of Cancer that he feels it is the best course of action for me to have a mastectomy. And again I'm reminded of the severity of the situation I'm in and that I need to do what is best for me medically... not just opt for the simplest procedure only to find myself back in a similar (or worse) situation in another year.

I've decided that it's probably for the best that my appointment with Dr. Lee was canceled and I'm going to go 'HOME' and spend some time with my family... with my Mom. Since my eyes well up with tears... just at typing that... I'm pretty sure it's an indication that I really need to go. I guess there is no age limit on needing some 'Mom Time' :)

Tissue Transfers & Implants & Tattooed Nipples... Oh My!

2008-12-18T07:37:00.000-08:00

My friend Greg said to me a few weeks ago "I've never seen someone Blog an event so quickly"... referring to my posting about my biopsy, propped up in a comfy chair, doped up on percocet, just after we got home from the hospital. Seems things have changed a little over the past few weeks and my rush to share my news has slowed to a crawl. It's difficult to share something when you're really not sure what it is... or what to do with it... or who wants to hear it?!

There's no real 'bad news' ... well, not other than the fact that I have to deal with this at all and there's even some 'good news'. Good news is that my genetic testing came back as 'normal' (I've always thought of 'normal' as a dryer setting!). This means that my ovaries aren't of any concern to me now, which is a very welcome load off of my mind/plate. Even more importantly, this takes some pressure off of my siblings and their children. It doesn't mean that they don't have the gene mutations... but my tests being normal takes off the glaring spotlight that it would have thrown on them had the results been different. The whole concept of 'Genetic Testing' is just a quagmire of 'what if's and what fors'... I get that it does have a positive impact in some situations to have this information but for the most part, to me it just looks like it leads to more confusion.

Our first meeting with Dr. Wandra Miles (one of the Plastic Surgeons recommended by Dr. Lee, my Breast Surgeon) went well. I'm very glad I've been doing lots of reading and educating myself on various types of reconstructive surgery, it certainly makes these conversations much easier to navigate and has us coming away feeling more confident and informed rather than overwhelmed and confused. Before seeing her, I had decided (if possible) that I would opt for DIEP FLAP surgery, in hopes of using my own tissue and taking a more organic approach as well as eliminating the future necessity of surgeries to replace implants. According to Dr. Miles I don't have the amount of excess tissue that would be needed to create new breasts so it looks like I will be getting implants. There are lots of pros/cons on both sides and if tissue transfer isn't in the stars for me... I'll have to make the most of what is.

The surgery itself will be skin sparing which means that they conserve all of the natural skin aside from the areola/nipple and original biopsy incision area. (don't even ask about the areola/nipple conundrum... that seems down the road and far away to me right now... but if you're interested... Nipple & Areola Reconstruction . And even more strange, many women opt for tattooing ! If I was going to get tattoos on my breasts... I think I'd get Daisies :) but like I said... that's waaaaay down the road and my head is already full! It's kind of interesting though. When you think logically about how insignificant breast nipples are (unless you're planning to breast feed... it seems ridiculous that you'd go through surgery or tattooing to replace them?! Here's an explanation of immediate reconstruction with tissue expanders (which is what I'm planning on doing) along with some photos that might make you think differently about 'breasts without nipples/areolas'?!

One of the 'pros' of going with implants is that I won't have to deal with losing the loss of muscle in another area of my body. When tissue/muscle are transferred from your abdomen, there is a risk of hernia as well as loss of core stability... I'd like to become a 'real runner' (or at least stick to a decent running regimen someday) so having my core muscles in tact is very important to me. I got a very good 'vibe' from Dr. Miles as her primary concern (after ridding my body of Cancer) was to make sure that I understood the options to allow me to continue to enjoy activities that are important to me.... after I've had my surgery.

My next appointment is back with my breast surgeon, Dr. Lee on Monday/22nd. This will be to let her know I've made my decisions on the type of procedure and reconstruction. Since both surgeons work with patients on the same day, with the plastic surgeon coming in right after the mastectomy has been completed, everybody will have to be available on the same day. They do this stuff everyday so I'm sure scheduling won't be an issue. If it can happen... I'm looking at having the surgery in the first two weeks of January. Talk about a way to start the New Year!

The insurance issues continue to daunt me. Thankfully Susan (who looks after the insurance stuff for David's company) has been and continues to be very patient and helpful to me. I think in the grand scheme of things this won't get to a point where it financially ruins us. The onus will just remain on me to track all charges and make sure they are being processed properly. If the information I've been getting is correct... after we satisfy the individual deductible of $2500.00 and pay the out of pocket cap of $3000.00... the insurance 'should' pay 100% of all 'eligible' expenses as long as the provider is 'in the network'. That's great news for us... now if we can only make sure it actully works out that way!!

And how am I? ... good question... calm & frantic... I think I spend so much time worrying about how I'm going to get back on track of being a productive part of society, that I spend little time worrying about possible complications with my surgeries. Maybe this will be one of those things where I gain 'super-human strength' from going through all this crap and take life by the horns after this is done. Sounds like a good scenario... you know... grey clouds and silver linings and all that jazz?! :)

PS... I'm considering David as an applicant for SaintHood! We always knew we worked best as a couple under pressure.... but he's shown me a love and understanding that I had no idea was even possible. David... ty :)

The 'Resta' The Story...

2008-12-04T13:11:00.000-08:00

Notes from our visit with Dr. Robert Resta- Geneticist, Dec/04/08.

I still can't believe I'm saying/thinking this... but I have decided to have a bilateral mastectomy with breast reconstruction. Dr. Resta, after having gone over my family history, agreed that this was a wise decision and the primary reason for my going ahead with the consultation with him today was not regarding the fate of my breasts, but to learn whether I should be concerned about future Ovarian Cancer and also to learn if my siblings should having genetic testing done.

I'm very grateful to have spoken to Aunt Noreen this week who was able to give me the best information I could have to offer to the Geneticist today regarding our 'family medical history'.

My $29.95 Sansa MP3 player paid for its worth by allowing me to use the 'voice recorder' to save the conversation we had today. These are some of the pertinent points of information gained today.

After asking me a litany of questions regarding my medical history and the history of my 1st & second degree relatives; he then asked and proceeded to check my hands mouth/tongue for signs of something called 'Cowden Syndrome', thankfully it's one of the things I don't have... and don't have to worry about!

He then went on to 'start at the beginning' of explaining stats/probabilities of Cancer:

* If you are born Female, in the US the lifetime risk that most women face is about 12%

* Of all of that Breast Cancer, 90% is NOT genetic

* What causes this 90%, no one knows

* At this time there are 6 specific genes that are known to be directly linked to Breast Cancer. The most well know of these are BRCA1 & BRCA2 . (I didn't gain any insight on the remaining 4, as Dr. Resta explained that since I did not show signs of Cowden Syndrome, which are apparently directly linked to these 'other 4', this wasn't necessarily a concern for me). Yes... I'm confused too!!

* We all have 2 each of the BCRA1 & BCRA2 genes, we all receive one of each from our Mother and Father. It is 'mutations' in these specific genes that they look for.

* In his experience, about 1:4 women with my history and having an 'early onset, diagnosed Breast Cancer' will test positive for a mutation in either the BCRA1 or BCRA2 genes, and that those numbers warrant my going ahead with the testing.

* If I test positive my likelihood of developing a second Breast Cancer (not a recurrence of the one I'm dealing with now) would increase from 5% to 40 - 50%. A possible, secondary Breast Cancer may not be as 'kind' as my current DCIS. (I am more thankful every day that things aren't any worse than they are!)

* Another implication is my increased risk of Ovarian Cancer. Average women have a 2% chance of Ovarian Cancer in their lifetime, a positive BRCA test increases the risk to 20 - 40%. Since there is no current effective screening nor treatment for Ovarian Cancer, all women who test positive are strongly recommended to have their ovaries removed within 6 months of this finding.

* Other concerns move on to my family members.

* If I have a positive BRCA1 or BRCA2 my brother/sisters have a 50:50 chance of also being positive. What this means would depend upon their gender and which gene (if either) showed the mutation. BRCA1 has no particular risk for 'Male Cancers' but men can transmit it to their children. If the 'parent' does NOT have the mutated gene and is not diagnosed with a Cancer, it would not be deemed necessary for their children to be tested.

**** (A thought from Me) : What I understand all this to mean is... I am taking the responsibility on to be 'the first' in my family to have genetic testing done. If I do not test positive for the mutation in these genes it does not mean that my siblings do not have the mutations and it would be up to them (with the knowledge of having the same family medical history as I do... and adding me as a 'sibling with Cancer') to decided whether they should be tested. The reason for having the tests would not only to be aware if they were at increased risk of future Cancers... but also to know if their children should be tested. For instance, if a young woman (such as one of my nieces) has tested positive, her Breast Cancer screenings would begin at age 25, giving the opportunity to catch a Cancer in its earliest stages should she develop one. ****

* If there is a mutation in the BRCA2 gene this could effect the 'male' members of the family with higher likelihood of Male Breast Cancer (yes... sadly there is such a thing) and also higher likelihood of Prostate Cancer.

* If my sister is tested and is positive for the BCRA1 mutation that would mean that she has a 70% likelihood of developing a Breast Cancer in her lifetime and it would be recommended she have her ovaries removed. Her Breast Cancer screening would elevate from just regular, annual Mammograms to MRI Breast Screening. It would also mean that her children should be tested and if found to have mutations, should undergo additional, regular Cancer screenings.

Dr. Resta was also very thorough in detailing how the various insurance companies handled all of this 'genetic testing business'. It used to be that people worried about testing 'positive' then not being able to find a company to cover them in the future. This is no longer so, as law passed (here in the US) stating that 'insurance companies cannot refuse to cover individuals based upon genetic testing/findings'. That's all kind of 'moot to me' because the insurance companies already don't like me because of my DCIS (I wonder if that changes in the future, after I have my breasts removed?).

So... we decided that I would have my blood drawn today. It will now go to the only lab in the US that does gene testing Myriad Genetics. A third party insurance company will be responsible for doing the due diligence with our insurance company to find out how much of the cost/if any they will cover. Total cost of the blood screening is $3,100. The third party will contact me if the total cost billed to me will exceed $375.00. It would then be my decision whether or not to proceed with the screening. (I'll let you know when/if it comes to that). Test results general take 3 weeks.

To balance all of this out... as life often has a way of doing... when David & I got home from the doctor visit today... my Green Card was in the mail. "Welcome Lisa, you are now a Permanent Resident of the United States of America" :)

Next step is on to see the Plastic Surgeon on Monday/Dec/15 to find out what the best type of reconstructive surgery will be for me. We've both been doing lots of reading and right now it looks like a TRAM Flap is the best option if that is available for me. Some of you, if you're still reading... may be thinking this all sounds like I'm dealing with this too well and that I should be *shrugs* more upset or angry or something. Trust me, I'm plenty of everything and doing my very best to keep my head. If anyone thinks I'm handling this any differently than I should be or making decisions they wouldn't dream of... *looks down at her shoes* ... the only way you'd ever know what you do if you were 'in my shoes'... would be to actually be 'in them'... and I hope no one I love (or anyone else for that matter) ever is...

Can't Argue With a Cutie Pie!

2008-11-25T12:04:00.000-08:00

... And The Beat Goes On...

2008-11-25T10:45:00.001-08:00

I had decided before I left for my visit with the surgeon yesterday that my post here afterwards would be 'short & sweet'... I'm not sure this will be either?! My mind has done 'flip flops' since this all started and when I woke up yesterday I was convinced that I had one more day surgery ahead of me (one lumpectomy and one excisional biopsy... both on my left breast)... then a few weeks of radiation... followed up by a couple of years of taking Tamoxifen... and Bob would be my Uncle... Turns out Bob isn't even remotely related to me...

The good news remains that there was no Cancer found in my most recent biopsy. And since the area in question has already been excised... there is nothing more to do on the right side at this time. Other good news is that the incision is healing really well and I was told that even though it's still quite painful that there's nothing to be concerned about. Now if the rest of my body is still up for it... I can start Running again :)

The bad news is... I have several strikes against me regarding my left breast:

(1) I have DCIS as well as ALH (in two opposite areas)

(2) I cannot and will never be able to have an MRI for follow up (that means that if anything suspicious shows up on a mammogram in the future should I opt for the breast conserving surgery, I will once again be subjected to biopsies to study the area(s)

(3) I have Cancer on both sides of my family (my Father's side is riddled with it) including Breast Cancer on both sides.

(4) If I opted for conservation and there was reason to have the breast removed in the future, there is a high possibility I would no longer be a good candidate for reconstruction due to damage to skin cells from the radiation.

Dr. Lee asked if I had gone to see the Geneticist and plastic surgeon she had recommended. We spoke at length about the genetic testing and she strongly suggested I go to meet with Dr. Resta to learn more about the process and to find out if I would be a good candidate for the BRCA testing. About the point in the conversation that she mentioned the possibility of having to have my Ovaries removed... I think my muddled brain went in to a conservation mode of its own. But I do understand that the gene testing can help in answering some very difficult questions.

I asked Dr. Lee to 'pretend this is your Sister you're talking to' and she replied by saying "I wouldn't tell my Sister she 'needed' to have a mastectomy... but I would tell her that I thought it was the best treatment in her case".

This morning things look different to me... though I'm doing my damnedest to try to keep a positive spin on all of this... It could certainly be worse... If You're still here to say it could be worse... that's enough proof to make it so... And so the beat goes on... and I will arrange to meet the Geneticist and then the Plastic Surgeon... and we'll take things from there...

*The rest of this is mostly for Rebecca, my dear friend who regularly takes time from studying to be a doctor at Stanford... to check in to see how I'm doing* :) Pathology reports so far...

So far I have had 3 biopsies, 2 x stereotactic needle guided @ 12 and 6 o'clock on my left breast and one wire guided (3 wires) excisory on my right.

Right Breast = Breast Tissue:

- apocrine metaplasia and columnar cell change, cysts, focal florid usual type epithelial hyperplasia, nodular and sclerosing adenosis, and fibroadenosis;

-scattered foci of atypical lobular hyperplasia;

-microcalcifications associated with columnar cell change

-no evedince of DCIS or invasive carcinoma

12 o'clock on Left Breast = Breast parenchyma with:

- atypical lobular hyperplasia

- fibrosystic without atypia, columnar cell change without atypia, cyst formation, apocrine metaplasia, duct ectasia and sclerosing adenosis.

- Targeted calcifications associated with complex sclerosing lesions, columnar cell change, benign epithelium, and atypical lobular hyperplasia (ALH in block designated "No calcifications").

- No evedince of in situ or infiltrating carcinoma.

6 o'clock Left Breast = stereotactic guided core biopsy:

-Ductal Carcinom in-situ identified, cribiform and solid types, intermediate to high nuclear grade with associated microcalcifications; no necrosis identified

-Adjecent foci of flat epithelial atypia (columnar cell hyperplasia with atypia) and atypical ductal hyperplasia focally with associated microcalcifications.

- No invasive carcinoma identified.

- Small benign intraductal papilloma with associated florid ductal epitelial hyperplasia of the usual type.

- remaining breast tissue showing fibrocystic changes wiht stromal fibrosis, adenosis, cysts, focal apocrine microcalcifications associated with benign breast epithelium (adenosis) noted.

- Additional Findings:

ER: 90% of tumor cells positive for DCIS

PR: 0% of tumor cells positive for DCIS

Full Circle!

2008-11-17T15:49:00.000-08:00

As some of you already know, I received an unexpected and very welcome call from my surgeon on Friday of last week. I didn't hear my phone and she left a voicemail, the news was good news... but I wish I could have actually spoken to her to get more 'clear' information... I guess the clarity will come on the 24th when I have my follow up visit with her.

The message said... 'Nothing'... 'they found nothing in the samples they took in my most recent biopsies'! By 'nothing' I'm not sure if that just means no Cancer... or really... nothing... as in not even any ALH as they'd found in my first biopsy?! If it really is 'nothing'... I'm assuming that means that no further action is needed on my right breast at this time and that it will be closely monitored with Mammograms over the next months/years!? This also means that in the past two monhts I've pretty much come 'full circle' and I'm right back where I was when I was supposed to feel fortunate that I only had DCIS!?

*laughs... shaking her head... only slightly bewildered* !

The other 'great news' is that the insurance company is finally covering some of my current medical bills! I have no idea what they'll cover or how I figure any of this out... but at least it looks like they've lifted the dreaded 'pre-existing' status off of my account!

Seems now is about the time I pull up my bootstraps... kick myself in the butt and get back to life! I'll have (I'm assuming) one more day surgery ahead of me in the near future for the biopsy on the AHL and the lumpectomy on the site where the DCIS was found (both on the left side) and now that things have taken a positive turn... I'll shoot for the stars and hope I don't even need radiation or medication!

I could probably make a list of 'things I've learned' since all this started... top of my list would be how I (and my fellow Canadian friends/family) should never take for granted the health care system provided across Canada. I realize it varies from one province to another... but from where I'm sitting now... it all looks pretty good to me!

This Post is Brought to You By...Percoset ;)

2008-11-11T15:32:00.000-08:00

Before I get to my 'update'... I would like for any of you who wonder what this 'feels' like (psychologically ... not so much physically) ... to have to struggle with making decisions on how to choose a course of medical treatment for DCIS... Please read this Dana Farber Article 2002

Even though the article is over 6 years old... in my knowledge much remains the same today. This doesn't even factor in the financial quandary... *let's out huge breath* I promised David (and myself) today that I'm going to do my best to remove the $ from my thought process in making decisions regarding my future treatments for Breast Cancer.

I patiently waited for today and was even what you could call 'chipper' as David & I made our way to Swedish-First Hill, in the darkness and rain at 5:30 this morning. We got parked, found the right building, checked in, got me changed into some fancy, XXL hospital gear, walked over to the Breast Center (with an escort)... and from the moment we sat down in the waiting room... things got a 'little weird' :| It was still quite early (about 6:45) and we were told by our 'escort' that someone would be expecting us. We could hear at least two people in another room in the offices... to me it sounded like it was a 'heated discussion'. We sat... looked at a great book of National Geographic 'wide angle photos'... joked about whether anyone actually knew we were there (I was already really glad that David was with me!).

At 7:10 another couple came in, similar situation, the woman in fancy hospital gear... accompanied by her husband. Big difference was that someone came out and greeted them and asked if she had signed in?! She signed in and almost immediately, someone came out to escort her into another room, explaining to her husband that he couldn't accompany her and that she would be taken back to the pre-op waiting room in about half an hour. David & I just shrugged and went back to looking at the book. FINALLY... an odd (hmmm... quirky... imagine a slightly scary kindergarten teacher?) comes over with a clip board, gets me signed in and tells me that they're ready to start.

I'm by no means writing this to make a 'mammogram' or any other medical procedure sound scary... but this was a bit of a circus! 'She'... it turns out is the technician and the 'Doctor' aka radiologist was equally as strange... the conversation between them was (in my opinion) inappropriate, unprofessional and to say the least made my experience with the two of them just that much more unpleasant. *And could someone please help me understand why, during such procedures, someone is always trying to 'keep you covered'?? Is this a 'modesty' issue?? Does it make sense to stop at nothing to keep my left breast covered with a hospital gown... to protect my privacy... when my right breast is either just sitting in the wide open or squished between a couple of plastic plates?*

Picture this if you will... Me standing on my tiptoes because for some reason they had to have the machine at a level that was beyond my ability to have my heels on the floor, right arm stretched over the metal machine arm hand gripping the machine to keep steady, right breast pressed between the plates, head twisted about 50 degrees to the left with part of the machine digging in just behind my right ear... The Doctor is sitting at the control panel for the machine, looking at images and the technician is standing behind me... slightly to my right, felt marker in one hand and her left hand grappling to keep my left breast covered, her entire body pressed against mine... I'm really not sure why... but I came to think it was to comfort me :/ Trust me... it wasn't having the effect she was hoping for! Somewhere around this point they started a conversation as though I wasn't there... saying to each other "Well, she's a much better patient than that woman yesterday... she just wasn't normal"... *shakes head* I just told myself to 'hang in there... be still and get this over with'!

The doctor was telling her coordinates on my breast where she was to mark for him to insert the wires that would guide the surgeon in the Biopsy to the areas in question. There are measurements on a grid on the side of the machine plates and it turned out I would need not one wire inserted... but three. The radiologist says "first mark @ A - 10, second between B & C @ 9, third between D & E @ 9". The technician seemed frantic between trying to keep the light on on the machine (having to continue to press a button to turn a light on that seemed to be set on an auto off time function), pressing her body against mine, grappling with her left hand trying to keep my left breast covered and couldn't for the life of her get the coordinates straight!! She'd say "okay, okay, I think I have the first one @ A 10... and let's see... you said the next is between D & E on 10"? and they went back and forth with him resorting to saying Bravo Charlie... etc etc... AND it still took her another ??? 5 min to get it straight! He was getting agitated... I was wondering if I should ask to leave ... Finally I told her the coordinates!! No... sadly I'm not kidding!! Keep in mind this whole time I'm still on my tiptoes and my poor breast is still clamped in the machine!!

I was in there with them for well over an hour and this continued for some time. I finally asked that the technician not press her body against mine, as she was making me very uncomfortable. I had to have several more images done after I had the three guide wires put in place... (THANK GOODNESS I had had a local anesthetic!!!) the blood on the clear plastic plates of the machine (and me) made the situation that much more unpleasant... At one point I actually piped up and questioned the need to keep me in place, pressed in the machine if they were unsure if the last image that was taken would work. The reply was in a whispered tone from the technician... who told me 'The doctor is a very, very smart man... we have to stay quiet and let him do his work... believe me, he knows exactly what he's doing'. The entire time the doctor was mumbling about how tiny the area was that he was trying to localize and how extremely difficult a case this was.

I actually let a few tears slip out when I saw David's sweet face... I was so happy that he was there... and also very happy that I was SURE that would be the worst of my day... and it was. I told David later in the day that during the worst of the wire placement fiasco... I was breathing deeply, focusing on the wall in front of me and thinking about he and Gavin on the weekend... laughing uncontrollably and rolling around on the living room floor :)

I was wheeled back over to the surgical wing with David following closely behind me and quietly stared out the window I reminded myself of how fortunate I am that this Cancer is not going to kill me. I really mean that! I thought about how lucky I am that I'm not having to deal with the fear of going through Chemotherapy... not having to worry if this is going to make me waste away to nothing...

Thankfully the rest of the day was a very different story. Even the IV needle in the back of my hand went off without a hitch! The freezing was wearing off that I had for the wire insertion and it was becoming very apparent that the pain was going to be a lot worse than after the previous needle biopsies I had ... and I was very much looking forward to meeting my new friend... the Anesthesiologist!! :) David sat with me (so close one of the nurses had to smile and ask him to move to allow her room to get close to me :) and I looked through a Bon Appetit magazine... talking about things I'd like to try for Thanksgiving or Christmas... He fixed my drip on my IV when it got twisted up... I told him last week that I wonder if the 'reason' I was handed this Cancer was to make me realize how really 'good' he is and how much we really love each other... he said "No.. it's just something crappy" haha...

The anesthesiologist came by and explained what he would be doing, the nurse came back and attached an antibiotic syringe to my IV bag saying "Dr. Lee always likes her patients to have this"... and finally Dr. Lee came and sat with us for a bit. She cleared up some things for us. The most important being that the 'samples' she would be taking today were as small as those extracted with the needle in the two previous biopsies I had done. We both were under the impression that she would be taking a larger section of tissue. I was quite concerned that this surgery would disfigure my breast but the scars will likely be nothing more than slight 'puckers' in the skin, as I have now on my left. The downside is that if there is any problems of any kind found in pathology... I will have to have further surgery on the right side, even if the 'problem' isn't Cancer. I was wrong in assuming that the area that I had biopsied today was the same as the first diagnosis on the left, which was ALH (which will have to be fully removed... one way or another). My assumption of course makes no sense upon reflection... they have never been able to get any tissue from the area... so how could there be any diagnosis?? In discussing this with my Mom earlier today, we agreed that the initial diagnosis of ALH pretty much slipped out of my mind and off the radar, when I got the second call telling me the second needle biopsy came back with DCIS.

While speaking with Dr. Lee, I explained that I wasn't sure why I was there today... if it were up to me (which it actually is) I'd be going ahead and having a bilateral mastectomy with reconstruction... she looked at me quite blank faced and said 'If that's how you feel... we should have had this conversation before now'. I was a little weepy and said that I had made my decision... I just wasn't sure I trusted my own judgement or the reasons why I had come to the decision. We spoke a little about how difficult the emotional/psychological aspects were of this whole process and agreed that I was where I should be and that there would still be a lot of decisions to be made, based on what was found today. I told her the best advice I've had lately came from my brother Billy yesterday. He said "well you're smarter than most people... listen to your heart... not other people's opinions". Dr. Lee said her brother never said anything quite that kind to her... Thanks Bill :) I hoped that I would have some 'real news' regarding today's surgery by the end of this week... but Dr. lee made it quite clear that it would be most likely that I would be given all of the information in my follow up appointment with her on November 24th. She explained that she wanted to be the one to speak to me herself as she feels that this type of information (which could range from 'nothing to more ALH or more DCIS... or Bacchus forbid... something worse').

So... More waiting... I plan to use the time wisely and find out as much as I can about pros and cons of radiation, possible effects of taking Tamoxifen for up to five years (just did a quick check on possible side effects: depression, lowered libido, blood clots, endrometrial Cancer) :| As well as the realities of mastectomies and choices for reconstruction. All the while... doing my best not to make the price tags a part of my thought process.

On the subject of 'price tags'... the most recent communication I've had with the insurance company has sounded positive. Though the meeting that we had with the rep that deals with David's employer didn't seem to go anywhere, I have been contacted directly by the 'team lead' from the claims department of PacifiCare in PA. She has assured me that all major insurance companies in the US are aware that Canadians all have 'some type' of Federal Health Coverage; all she needed from me was a signed letter stating the 'begin and end' date of my coverage in BC. **The end date (as some of you know) is another 'crappy part'. When I contacted MSP (Medical Services Plan) of BC to cancel my insurance AFTER my coverage started here with David's plan, they told me I would be refunded all premiums paid back to the last time there had been a claim by a caregiver on the account. I thought it was great that I would be getting a $600.00 refund... little did I know that would make it appear on paper that my coverage had ended in the spring of 2007 (back to the date where they had refunded me).

Most insurance companies (here in the US) will not cover a person who had a 'lapse in coverage', saying that the individual did not get medical treatment they needed because of having no insurance and kind of 'saved up' their illness to dump it on the coverer when they did get insurance. Because I have no 'official letter' from my previous insurance company, PacifiCare have been rejecting all claims thus far, from the initial Physical Exam and everything else thus far regarding my current health issues.** I carefully crafted a letter to PacifiCare stating "the begin date of my coverage with MSP of BC as April, 2000 and continued up until I canceled in April, 2008, after my coverage began with PacifiCare and when I felt it was appropriate to do so". Now I'll just wait and hope that will satisfy them. If it does and they cover me... perhaps all this will add up to us owing $40,000.00 instead of $200,000.00 (completely guessing at figures) and I'm reminding myself that if it goes that way I'll have to consider myself 'lucky'... I've already started seeking out organizations that assist in paying for medical bills.

If this Breast Cancer isn't going to kill me... I see no reason to let it ruin our lives... :)

Lisa xo

What Do You Say To Someone With Cancer?

2008-10-21T19:46:00.000-07:00

{Lunch at Lake Ann, North Cascades, WA}

... how about...

How was your weekend?

How about that Barack Obama?

How about those Seattle Seahawks? (well... *cringes* maybe not that :p )

I think in my last post I alluded to the fact that the next thing I was going to write here was going to be a 'rant' of some sort... or at least a 'steam blowing session'. Maybe the rant has passed, maybe it's just on hold... I'm pretty sure the latter is true.

I've been thinking a lot and talking to some people about how difficult it is (on both sides of the situation) to know 'what to say'. When the truth is, things don't really have to be much different than they were before as far as ongoing 'chit chat' goes. I certainly don't expect that every time I speak to someone that they have to 'inquire' on my physical/mental status regarding my Cancer. *Doesn't it suck when someone says the word CANCER out loud... or even in text!?* Nor do I want others to expect that I have to give them a full report every time we converse. It's just a FACT... a part of the picture... not the whole scene. (on second thought... maybe this is the rant... or one of them? :p )

I've had people coming out of the woodwork (no offence meant) and people that are usually around staying away (again, no offence) since I first got this diagnosis and though I find it odd, upon introspection... I guess I do the same. I tend to shy away from people in difficult situations and am guilty of contacting someone I know to have had (and successfully dealt with!) Breast Cancer recently, whom I had not contacted in ages... so I guess I've worn all the shoes myself. But this is the first time I've worn these shoes in particular. And having done so I now know... this is one of those things that you have 'NO IDEA' of until you are 100% in the shituation (no, that's not a typo!).

I've got people downplaying this saying "Well at least it's not Cancer-Cancer... it's only Cancer" and people upselling it acting like they are afraid I'm at Death's Door... in the meantime I feel like this is just a FACT... something that falls into the 'Life Happens' category and I have no alternative but to deal with it. I see this as neither trivial nor monumental (well... sometimes monumental) and realize that I will get through this... I will 'Live Through This' (I think that's what I'll call that book I'm going to write someday?!). It's not the end of this that's going to hurt... it's the getting through it.

At first I was always waiting for the day the 'other shoe would drop' and I'd know what's really going on. The day I'd have the information put before me and it would all become crystal clear what the treatment would be... now I'm not sure that day will ever come... or not any time soon anyhow. This all seems to be a series of this leads to that and changes this and wait and see what becomes of this to sort out what to do about that.

Right now I'm caught between wanting to take each and every step to know exactly what's going on and saying let's just cut to the chase and get to the cutting. I now fully, completely understand why some women, even with only gene testing and no testing that shows growth of specific Breast Cancer of any sort, to decide to go the route of the mastectomies. If they (I) decide to go the minimal route and opt for lumpectomy with radiation (if that's even going to be an option)... then there is always the chance of the same type of Cancer or a more invasive type in the same breast (or the other one) in the future (% of chance of having a future diagnosis of Breast Cancer down the road increases if you've ever had one). If you've had radiation and then later need to have a mastectomy... the chances of a successful reconstruction is reduced due to the damage done to the tissue (radiation burns/damages cells and after having treatments the skin doesn't stretch as it did before). Not to mention... how many surgeries do you want on one breast in one lifetime... especially when your breasts are as 'dainty' :) as mine?!

Left up to me (which in actuality it is)... I'd say let's do the whole thing right now bilateral mastectomy and take me down to a 2% chance of ever having another Breast Cancer (go figure, even with no breasts it can invade you!)... yet here I am awaiting a biopsy. Why, you ask... because I think that's what is what would seem like the rest of the world would expect me to do. To me it seems like if I decided on a more radical approach, I would seem ... well ... radical. Some days I wish the diagnosis was worse and that I was just being told what had to be done... instead of the one responsible for making all the decisions. I know... I should be thankful that things aren't any worse... in reality (rationally) I am very much so.

And the other reason I'd like to just get it all over with now and get it done for good... the taboo subject... $$!! Funny that it's so crass to talk about money and health in the same sentence; after all... your health is much more important than any amount of money. Well... currently the insurance company is rejecting every submission from any and all care givers I've seen thus far. Between August 13th when I had my first 'Full Physical Checkup' in the US and yesterday that had amassed to the tune of about $15,000.00 and I haven't even had a 'surgery' yet!! Every time there is a doctor visit (about $300.00 a pop) or a needle biopsy ($7,200.00) or an excisory biopsy ($I'm scared to even find out)... it all adds to the pile. David has scheduled a meeting with the rep from the insurance company on this coming Thursday morning and hopefully it will be decided that this is not a 'pre-existing' condition and at least 'some' of this will be covered... but still, it's all going to have to get paid for someday. All those 'collector item Pearl Jam posters'under the bed might come in handy for a 'virtual garage sale' someday soon!!

*I think my steam engine just ran out* :p

So... I don't know what you say to someone who has Cancer... but that's probably a full heaping helping of what someone with Cancer would like to be able to say to the world. Most days it's just business as usual, some days... when it's been a little while since there's been an doctor visit or a test or a statement in the mail... it almost feels like this isn't really happening at all. We just spent two days being dazzled by Mother Nature's landscaping skills in the North Cascades and I enjoyed one of the best weekends of my life. I know there's going to be some physical pain coming at me in the future... if I'm lucky, it won't be too bad... for some people it's not that bad at all and I'm pretty good at biting the bullet when I know it's going to be over at some time or other. For right now I feel physically fine and am taking advantage of it.

Anyhoo... the weekend was awesome! Obama is much less scary than McCain, I hope he gets into office and I wish I had the right to vote!! The Seahawks... um... ask David. On second thought... scratch that ;) Maybe my next entry will be called: 'What Do You Say To A Seahawks Fan'? :p

Happiness Is...

2008-10-16T08:34:00.000-07:00

{A Day At Camp Long/Oct, 11, 08}

Perhaps it's my 'wake up call' with my health on the line that brings everything into such sharp focus sometime... but for whatever reason... I love the three people in the photo with me so much it hurts... In a good way of course! :) If there are any of you reading this that put off having regular medical checkups (mammograms or otherwise) out of fear or neglect or any other reason... try looking at it as something not for yourself but of everyone that loves you. It is your responsibility to do all you can to make sure you take care of yourself! Someone out there needs you! :)

I've got some other 'real feelings' bumbling around inside of me (which I will get to) but for the 'facts' of where things are now...

I finally got someone to talk to me regarding the next steps and have my wire localized excisional biopsy scheduled for 10:15 am, Nov, 11th. It is a 'day surgery' with normal pre-op preparation; no food or liquids you can't see through after midnight (does White Wine count? ... just kidding!) ahh... next on the list is 'No Alcohol' ... that answers that! Nothing at all ingested three hours prior to arrival time (which is scheduled for 6 am... so no problem there as I generally don't eat/drink in my sleep... at least I don't think I do?!) After the biopsy is done, they will hang onto me for a couple of hours and since I will only have a local with sedative and not a general anesthesia, I hope that I'll feel okay! (generals tend to make me feel really nauseous). I'm glad it's on a Tuesday as the results usually take about three days to come back; if this the case we'll have them on Friday and I won't have to wait over the weekend.

All of the following steps will hinge on the results of this upcoming biopsy. If it's negative for Cancer in my right breast then I'll call myself 'lucky' and follow the footsteps of Sheryl Crow, having a lumpectomy on the left (as well as an additional excisional biopsy for the second area of calcifications on the the left). If it comes back positive... I'll still dig down and call myself 'lucky' *laughs at herself* ... well... let's just get through this part first!! :)

That's the 'update'... how I really feel to follow!

No Matter How Much I Try To Deny 'IT'...

2008-10-06T22:17:00.000-07:00

I have Breast Cancer... :(

When I first started learning about DCIS, I was very confused to read women's stories, telling others that they felt 'wrong' about shedding tears and worrying themselves and their families so much over something that wasn't even really 'Cancer'. They would talk about how some people referred to DCIS as a 'pre-cancer' or how they were told by a doctor or read somewhere on the Internet that it was a 'Cancer of sorts... but not one of the big bad ones' and they should feel lucky that was all they had.

I couldn't imagine how anyone could possibly be trying to deal with an illness and at the same time feel like it would be something they would have to make light of. Over the past few weeks, I have come to understand first hand what these women were talking about and I have felt the pain and confusion. I go from not wanting to tell anyone about this to wanting to tell people I don't even know. When the checker at Safeway asks 'Would you like to donate a dollar to Breast Cancer research'? it almost seems as though she should be able to look into my eyes and see the answer.

Today David & I met with the breast surgeon. The first thing she said (after saying 'hello' to me and introducing herself to David) was... 'You may have heard some people wrongly refer to DCIS as a 'pre-cancer'. It is a Cancer, it's not a type that's going to kill you ... but you have to do something about it. We went over all that's happened so far, discussed the fact that I'm not now nor likely ever going to have an MRI so we have to go about gathering whatever information there is without one. I thought today was going to be a day of 'answers' but it really just opened up more questions.

One thing that was presented to us is the option of having genetic testing done to find out if I carry the BRCA1 or BRCA2 gene. I still have lots to learn on the subject but from what I understand, knowing whether I carry one or both of the genes could help me decide what form of treatment to opt for. IF I don't carry the genes... and IF the excisional biopsy (which I will be having soon on my right breast comes back as negative for Cancer)... then a lumpectomy on the Cancerous site on the left side and an additional excisional biopsy on the second site (where there are microcalcifications and have had a needle biopsy but no Cancer was found) would be done with follow up of radiation and possibly medication. IF they can't get clear margins on the lumpectomy or IF they find additional DCIS in the left breast... then there would be no question as to whether I should have the left breast removed. IF I have the genetic testing done and it comes back positive for either or both markers or if the biopsy on the right side comes back as positive for Cancer... then the conversation will move to a bilateral mastectomy.

There are a lot of 'IFS' in my life right now and I've never been a big fan of 'IFS'. One thing that was made very clear to me today is that I do have Breast Cancer. I don't want it, am not sure how to deal with it but I know I have to. I can't try to hide this and I certainly don't want to try to hide behind it.

So... sitting in front of me I have a folder filled with information on the biopsy I'll be having soon and contact information for a gene specialist and a couple of plastic surgeons. I've already closed my eyes a few times and tried to wish it all away... but I just opened my eyes again and the pink folder with the ribbon is still staring me in the face... no matter how much I try to deny 'IT'... this isn't just going to go away...

This is Dr. Okorn... Lisa are you okay?

2008-10-02T10:03:00.000-07:00

My phone rang at exactly 9 this morning. The number showed as 'restricted', when I said 'hello' the voice on the other end said 'This is Dr. Okorn (my family doctor, whom I've seen once)... I've been looking through all of the reports that have been coming back since I saw you and I just wanted to call to make sure you are okay'. We had a very nice conversation and I took her through pretty much all that's happened. I was feeling like I was talking too much and that she probably didn't have time for 'chatter' ... then she'd ask me another question :) She not only asked about the care I was receiving and if I fully understood all that was happening, but how I was handling all this emotionally... asked if I have someone I could talk to... asked if I was sleeping okay... eating enough. She suggested I join Gilda's Club (created in memory of Gilda Radner) and I believe I will. I know that the best way to feel understood in a situation is to connect with others who have been there.

Anyhow... where everything is now... I attempted to have an MRI done yesterday and after I'd changed into 'hospital gear' was met by the 'head honcho' who operates the machine. He told me that after reviewing my medical history chart (which I had just filled out in the waiting room) that not only would I not be having an MRI (today or any day) but that he wouldn't even feel comfortable letting me into the room where the equipment is. One of the questions on the sheet was 'Have you ever had a arterial clip'? I checked it off of course, as I had brain surgery for an AVM when I was 15. He explained that all clips such as these are now made of titanium, where in the past they used stainless steel. Without knowing exactly what the clip is made from it is unsafe to put me in the machine. Or as he so eloquently put it "I don't want us to be in the paper next week" :|

*I'd like to elaborate for a moment on the interaction I had with this person*

I fully understood his concern and of course agreed that it wouldn't be safe to have the procedure. To put it in simple terms, the MRI is a gigantic magnet (apparently the one at Swedish is 'super duper'!) and if I have a metal clip on an artery in my brain which keeps it from rupturing... hence keeps me alive... The last thing I need to do is have it pulled off. He explained in somewhat graphic detail what could have just happened had they done the MRI and then asked what my upcoming surgery was for. When I told him 'Non Invasive Breast Cancer ~ DCIS'. He said "oh, well, no big deal. Some people choose not to even have DCIS treated... they just ignore it." He paused for a minute... thinking then said "On the other hand, my co-worker Anne just had a Bilateral Mastectomy done for DCIS" and shrugged. Sometimes I'm glad it's 'me' that people say these things to... even though it's entirely inappropritate.... I think I have the ability to sort that out without letting it throw me for too much of a loop.

*end of elaboration (aka RANT!)*

The closest I could come to finding information on what type of surgical procedures/equipment that would have been used in Eastern Canada in 1980 was to contact the Neurological Department at Dalhousie University. I now have a good line of email communication going with someone there. She has all of the information I could provide her and is actually going to be on site at the Children's Hospital this coming Monday. She will fax any info she can find to my surgeon.

So... that means that right now I'm kind of back at 'Square ? 2 maybe'? I have an appointment scheduled to see Dr. Lee (surgeon) on Monday/Oct/6 and will at least get to find out where her thoughts are on all of this. As I said to Dr. Okorn this morning My biggest fear right now is not knowing whether the surgeon is going to say "let's just do a lumpectomy and maybe follow up with rads & medication" or "let's whack everything off" :( Dr. Okorn replied "I think it's going to be somewhere in between. She's a great surgeon and a very good person and I think the two of you are going to have a lot of talking and decision making to do together".

Am I okay... ? I don't know that there's an option? :)

Thin Skinned & Thick Breasted... but Light Hearted :)

2008-09-24T13:36:00.000-07:00

{Flowers and sweet wishes from Barbara in London}

I was considering not keeping up with this Blog and instead just sending out brief email updates but I've changed my mind (it's a woman's prerogative after all!) and will continue on with my journal here. I had cause to wonder if what I was writing here made me come across as though I was being overly dramatic and I allowed those ponderances to make me feel very poorly. After some reflection, a day with my beautiful husband escorting me to various doctors offices and some very in depth conversations with medical care givers... I think I'm doing completely fine with my expressions... and so I shall (as I usually do) go on :)

I had an additional appointment scheduled into my day yesterday due to the level of pain/swelling/and general 'thickness' still in my left breast as a result of the needle biopsies. I was told all of this should have passed within 24 hours of the procedure, and though I'm generally very quick to heal... this was still a problem. I was booked in to see a doctor at the Breast Clinic at Swedish first thing in the morning and it was a good thing I went. She told me that there may have been some bleeding internally after the biopsies (nothing to be concerned about) but that doing an MRI yesterday would be senseless as they wouldn't be able to see what they were looking for. I'm really glad this was discovered before I had the test done! Better than having someone tell me next week that the MRI was 'inconclusive'. They have suggested I have the MRI done in two weeks (around Oct/8th) with a follow up with the surgeon on the week of the 13th. And so I shall ...

The next stop on our day was with the Optomotrist/MD to have a look at these eyes of mine. Being 43, I'm at that place in my life where my eyesight is starting to get a little strained and this was making me worry about my field of vision loss from my brain surgery in 1980. My 'funny' for the day was when the technician asked during my field of vision test... 'Are the lights not flashing at all ... or can you just not see anything'? haha... After an hour of tests and another 30 minute consultation with the doctor he told me I have 'perfectly normal yet highly comprimised eyesight' :) He doesn't think there's any need to worry about my field of vision diminishing over time as my eyesight degenerates naturally, which is great news. Unless I have Glaucoma on the right or something down the road... my reply to him... with a big toothy grin... was 'Don't even go there' :p

We got to go to the new 'James Tower' at Swedish to visit Dr. Desai (Cardiologist)... it's a lovely building and David & I got to discuss fixtures and finishes in the 'posh' waiting room and thankfully the doctor was equally (or even more so) lovely than the surroundings! We went over my medical history and he started shaking his head and frowning at me around the Celiac Disease diagnosis :p When we got to the part where he asked 'Why are you here now investigating your heart murmur... what is the surgery they have scheduled for you'? I told him I had just been diagnosed with DCIS, he looked at me very kindly and said ... 'well, I'm not sure how you feel... but I'm glad I'm sitting down'. He said that he thinks the heart murmur may have been caused by an internal abscess I had several years ago, for which I had several surgeries? Somehow the infection may have caused this but he's really unsure. The good news is that he believes it is very minor and since it does not seem to affect my daily life that it shouldn't be an issue. I'm scheduled to go in on Monday for a Echocardiogram

and a 'heart stress test' and that should allow them to both rule this out as a problem and give the surgeon the green light to do her thing.

As an 'interesting aside' on the day. I had taken an application for a 'Disabled Permit' from Metro Transit to the Optometrist's office to have him fill out for me. Since I cannot drive due to my loss of vision, this makes me eligible for 'reduced fares' on public transit. I'm now a proud 'card carrying member' of the invisibly handicapped :) I should have done this years ago! What actually stopped me was not having the insurance to cover the eye exam... but now (and for the rest of my life in WA State) can ride the bus till my heart's content and beyond... for $9 a month :)

We topped the afternoon off by picking up some Gluten Free cookies at PCC then going over to Freshy's Coffee (just around the corner from our place... but we'd never been there) and reminding ourselves and each other of why people like to hang out in coffee shops. *Smiles* It's great to take the time and sit with a good friend and I realize my great fortune in having married mine. It was the perfect end to the otherwise regimented day, to giggle and talk about everything and nothing... having a cuppa joe :) Sometimes we lose ourselves in the everyday humdrum and or drama of life... but with us we always come back to center. When there is an occasion to rise to we always do it together and this will be no different...

You Can Only Hide... Crying In The Shower...

2008-09-22T13:24:00.000-07:00

'till the hot water runs out. Then you have to get out, blow your nose, dry off and get back to real world.

I really know now what Ed Vedder was talking about when he wrote 'The waiting drove me mad...' only I'm not waiting for 'you'... I'm waiting for 'answers/instructions'. Kind of like dreading a trip to the dentist and you're not sure if he/she will say 'Yeah, let's go ahead and take out the molar on the upper right and that should do it' or 'Gee, looks like we're going to have to yank 'em all out' ?! Yeah, I know... bad analogy but you get the picture.

Anyhooo, the line up looks like this for Thursday:

10:45 Eye Exam (don't ask, it just happened to be on the same day)

1:20 Cardiologist

3:30 MRI

I learned a little more about the MRI process today. It involves injecting a dye called Gadolinium through the bloodstream, which shows up on the scan. Since Cancers require a higher level of blood supply than would normally be found, they can be detected by the elevated amounts of dye in the area. They do the first couple of scans without the dye, then an injection (which should be painless) and then additional scans with the dye in your bloodstream. Hopefully this will give them the information on the right side that they weren't able to access through the needle biopsy as well as (but hopefully NOT) finding anything else hiding in there.

Then it's a follow up with Dr. Christine Lee on Monday, Sept, 29th (who I have been referring to as the Oncologist... I just looked at her card and I'm not sure that's the case?) Christine Lee, M.D., FACS ~ Diagnosis and Treatment of Breast Diseases. I just found out the FACS stands for: Fellow, American College of Surgeons ... so whatever her title... it looks like she's done her homework. I guess she's the one that makes the recommendation to the surgeon?? So, if all goes as is now scheduled... I should know what the course of prescribed treatment should be by this time next Monday.

I tried again today to get some better information regarding what our insurance will or won't actually cover and got no where. Seems that the only way to get info is call the 866 line and every time I try I keep getting the same guy I talked to on Friday (who had an accent somewhere between Charlie Chan and Inspector Cluso... and sounded about as interested in informing me on insurance benefits as he would be in having his fingernails pulled out with pliers) and if I have to talk to him again it's going to play out like Jules & Brett in Pulp Fiction :p so I just keep hanging up. It's a major insurance company ... somebody else must work there?? And as far as how all this will get paid for... I really don't know... right now I'm nervous as hell about what it is they're going to do to me ... that I'm going to have to pay for!

And I hope the waiting doesn't drive me mad... I'm a mess already ... and I can only shower so many times a day...

Eyes Open...

2008-09-21T10:39:00.000-07:00

Funny thing when you have absolutely no idea how to deal with something, how to absorb it... how much you allow it to absorb you... Something gets presented to you, becomes part of you and you have to keep it from becoming you. Within the confines of this amazing mind of mine; the words 'Ductal Carcinoma In Situ' have rattled around a million and one time in the past three days. In fact they're still knocking around in there right now as I try to paste my thoughts together.

I promised myself that I'd use the Internet as a tool and not a weapon (against my already overloaded and befuddled mind). My initial plan was to read only information that was written in the past 18 months and only from dependable sources, no 'chat rooms' or 'survivor forums' to further add to my confusion. Well, that lasted for the first two days and even when only sticking to the 'real' information... it ranges from 'walk in the park' to 'hell on earth' so I decided to find out what the 'real people' were experiencing. When I did venture into some user forums last night and chatted with some people coping with Breast Cancers of various levels of severity, I was a little overwhelmed. I was asking about reconstruction after mastectomy and one woman replied 'mine turned out great... want to see them'? Um... no thanks! :p

I was taken aback by the number of women who were at first diagnosed with DCIS and within days/weeks of that original diagnosis, learned that the situation was much worse than they had anticipated. To complicate matters even further for me, I'm learning that many women chose to go the 'radical route' and have their breasts removed to prevent having to deal with any future Cancers. Kind of like getting ahead of the disease by removing the parts... so the disease can't have them! *A La Christina Applegate* I do realize that the real 'success stories' aren't going to be the women that are reaching out on Internet chat sites at 1am so I will keep my wits somewhat about me :) I still am standing by that place in my heart/mind that says this could really be the 'best of the worst' and that it could all be over as quickly as it began... but I think allowing a little 'reality' in there to keep things on an even keel is warranted as well.

One good thing I learned in my reading/interacting last night is that MRI is apparently the 'best' way to see everything that's lurking within the body, so I'm grateful that's what's next for me. I've always said that if you're afraid to find out what may or may not be there... don't even look. My eyes are wide open.

Congratulations! You have Breast Cancer...

2008-09-20T15:52:00.000-07:00

Congratulations! Seems strange to say that word in connection with cancer, but I’ve been diagnosed with a type of breast cancer DCIS (Ductal Carcinoma In Situ) that latest statistics show is 98% to 99% curable. (And sadly, “cure” isn’t a word that’s heard in connection with all breast cancers.)

I am writing this blog for several reasons; to keep anyone who wants to know what's happening informed, to keep information straight for myself and to get some release through keeping a journal. To get things started I'll backtrack over what's happened over the past couple of weeks and include links that will help explain what the medical terms mean.

This all started with my finding small lumps close to the surface of my right breast a couple of months ago. Thankfully I finally had medical insurance through David's coverage and was awaiting my appointment with my new doctor (Dobrina Okorn) at Swedish Medical Center just up the street from us in West Seattle on August 13th. During the exam the doctor & I discussed the lumps, which she examined and agreed that they should be better looked at and that I was long overdue for a Mammogram. The Swedish Breast Cancer Center called me with my appointment for September 2nd.

It became evident on my first visit to the Breast Cancer Center that they look after matters very quickly. What I thought would be an hour for a Mammogram turned out to be about 4 1/2 hours. They actually have Oncologists on hand to view images as they are taken and when they saw my first films it was decided that I should have 'Microscopic Mammograming' done. After those images were viewed I was called back in to have Ultrasound done. During these scans I was informed that the lump I was initially concerned about was a harmless cyst but they had found Microcalcifications in my left breast. I found this slightly ironic, but in retrospect had I not been concerned about the lump, who knows if what turns out to be the 'real issue' would have been found? It was explained that calcium deposits are very normal but that when they cluster together it becomes a signal that something could be wrong. One of the first concerns is that Cancerous cells could hide inside the clusters. It was decided that I would have a Stereotactic needle biopsy on the site of the Microcalcifications which was scheduled for two days later on Sept. 4th.

The most painful part of my first needle biopsy procedure was actually not the procedure but the situation (I'm sure a Man designed the table the procedure is performed on :p ). You have to remain very still with your breast dropped through a hole in the table for about an hour. Since my delicate little breasts don't drop very far, I couldn't afford any 'pillowing' under me so not the most comfortable situation. They elevate the entire table and work from below you with a Mammogram machine. They make a very small incision at the site they have marked and insert the needle which draws the samples. I found this pretty uncomfortable but it didn't last very long. A small, metal clip was left in the site as a 'marker' that would show up on future Mammograms to allow them to locate the exact area where the samples were drawn from.

Other than a slightly sore breast and a moderate level of concern on the outcome of the biopsy, I was sure this was going to be just an inconvenience and a reminder from the Universe to thank my lucky stars for all I have in life. I received the call with the results on Monday, Sept. 8th and was very relieved to learn that they had found no Cancerous cells in the biopsy. (I'm already fuzzy on when/why I was instructed to make the first appointment to see the Oncologist? so it's a good thing I'm going to try to keep better track of this!) I was to meet with Dr. Lee on the following Monday, Sept. 15th. When I met with her she told me that although the site biopsied came back as negative for Cancer, she had found two other sites (one in my right breast and a second in the lower, left of my left breast) of Microcalcifications in the images from my mammos/ultrasound that she wanted to be biopsied; this was scheduled to be done on the following day Sept. 16th.

The second round of needle biopsies didn't go as well as the first. They were able to easily get images on the area on the left breast but couldn't achieve the same with the right. The radiologist made the decision that they would only biopsy the left at that time. Her reasoning was that if the second area on the left came back negative (as the first one had) that they would just keep an eye on the site in the right breast with a follow up mammogram in 6 months. On Thursday, Sept. 18th I received the call with the results of the second biopsy... Ductal Carcinoma In Situ :( I realize it's the 'best of the worst' ... but really not the information I was hoping for ... nor was I expecting. Reality is a bitch sometimes... but it is what it is... and has to be dealt with.

The next steps from here are to see a Cardiologist to find out what the story behind my Heart Murmur is? It is something that has been mentioned to me several times over the years by doctors but I'm not sure anyone ever investigated to find the cause or type? It is something that needs to be uncovered prior to having a sedative necessary for whatever kind of surgery is ahead of me.

I was also to have a follow up consultation with Dr. Lee (Oncologist) on Monday, Sept. 22nd which was canceled yesterday as she would like me to have an MRI done prior to seeing me again. I'm assuming it will allow her to better plan what our next steps will be.

So... Long story long :p and hopefully it won't become epic! From the reading I've been doing there is great success with Lumpectomies with DCIS and that Chemotherapy is not necessary. There is often follow up with Radiation which I understand isn't painful and is often said to feel like a 'sunburn' on the treated area. Most people who undergo radiation treatment continue to work... so all this may not even interrupt my job search :p :) I'll keep posting here as things transpire so that you can check into see what's happening if you like. I am very thankful for all of you and truly treasure your love and support in all of my life's trials and tribulations!

Lisa xo

*Post Edit Jan/30th/2009*

Somewhere along the way I remembered that I had referred to Dr. Christine Lee as being an Oncologist... which is incorrect... she is a Breast Surgeon. Rather than just edit the text I thought I'd post this note for anyone who starts reading this from the beginning :)

The 'C' Word

Help Save The BOOBIES!!

Icing on the Cupcakes...? !

YOU are NOT Alone...

364 Days Ago...

David's Taking the Challenge!!

Filling up the empty Canvass...

Booby Prize...

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

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

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

Cording

Change in sensation

BoobCakes :)

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

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

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

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

Bee Girl... Be A Girl...

Back On Track...

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

Does Fear Hurt?

The Laughter In Between...

The Other Side...

Biggest Decision Of My Life...

Do You Have 5min 21 sec?

If You Want To Be More Loved...

Ready Or Not...

No Flower Zone! :)

You've GOT To Be Kidding...

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

*Deep Breath* ...

My Breast Surgeon is 'Stuck' in California...

Tissue Transfers & Implants & Tattooed Nipples... Oh My!

The 'Resta' The Story...

Can't Argue With a Cutie Pie!

... And The Beat Goes On...

Full Circle!

This Post is Brought to You By...Percoset ;)

What Do You Say To Someone With Cancer?

Happiness Is...

No Matter How Much I Try To Deny 'IT'...

This is Dr. Okorn... Lisa are you okay?

Thin Skinned & Thick Breasted... but Light Hearted :)

You Can Only Hide... Crying In The Shower...

Eyes Open...

Congratulations! You have Breast Cancer...

Deep Breath ...