Saturday, July 25, 2009

This is it --, yes, ok -- well, maybe

This may be my last entry before surgery. I am going to the Big Hospital as planned Monday morning but depending on what occurs with the doctors before I hop up onto the operating table I may say no thank you.

Yeah, nothing like deciding at the VERY last possible minute, huh?

An interesting phone call last night made it all clear to me that this was okay to do. A woman from surgical admissions called to confirm my arrival time and, well, one thing led to another...she seemed like a caring soul, I was I unburdened myself, explaining my dilemma between the two hospitals and the two teams of docs, the whole enchilada. I asked her how badly I would mess things up if I canceled at literally the last minute. Her answer was true gold, the kind of thing that you carry with you forever: "You will not mess anything up, this is all about you. You need to do whatever it takes to heal."

Goddesses walk amongst us.

So, if I don't put up a new blog post by Monday evening that means I decided it was a go and will have the mastectomy at Big Hospital.

If that be the case, until I am home again and well enough to resume blogging Michael will post updates in the comments section of this entry. You may not hear anything for a few days as he and my mother will have their hands full between the kids and me. But hopefully he'll be able to put at least a few words up by Tuesday sometime.

I had planned to say a few things that were important to here they are:

From the start of this blog I have been gratified by the goodness of my readers. As a new, fledgling wardrobe diary of sorts I received encouragement and advice from a whole bunch of lovely women right from the beginning. As this blog broadened and I ended up starting two more, I “met” other bloggers with varied talents and interests…so many amazing people have crossed my path because of this little corner of the blogosphere.

But perhaps most deeply touching is the support I have received since the very first moment I blogged about finding the lumps in my breast. All three of my blogs became an emotional lifeline in different ways.

My poetry blog became a place to reflect the deep pain I was experiencing dealing with my cancer diagnosis, the kind of emotions it’s hard to put into traditional words. You can say things differently in poetry, paint pictures with language in a different format. Poems can pour out like tears or tumble like giggles…they can throb with pain or gasp with joy. I am blessed to have a space for my ruminations and people to read them.

Ironically I was wondering what direction the narrative arc of my novel-in-progress would take, what would be the catalyst for change with either Kate or Nola…then it became all too clear that Kate would also be diagnosed with breast cancer. Her journey and feelings about it are often vastly different than mine, surprisingly, but it has been personally cathartic to explore how something like this effects not just one person but a family that unlike mine is already in turmoil. I look forward to returning after my own surgical saga to see how it inspires Kate’s choices and find out what happens to young Nola…and even Graham, too.

Last, but by no means least, that brings me back to this blog.

I originally chose the name "Fashionably Later" because I felt that as a middle aged woman it was a bit later in life for a renewed interest in style --but I wanted to celebrate that. I’ve been a late bloomer in some other areas of my life, too. I married Michael at 30, had my kids at 38 & 43. I also felt that I had found my voice after a lot of lost years due to various life circumstances. I once regretted…in fact mourned, all that forsaken time. But I have come to realize that time is what it is…and everything that has happened or not happened contributed to me becoming the woman I am with the life I have. I kinda like me and I love my I’m okay with being fashionably late…or later as the case may be.

Sharing the whole breast cancer journey here has been invaluable in so many ways. I have been supported, loved, advised, cared for and enlightened by my readers, both regulars and lurkers. The comments and emails are precious to me, even tho I’ve hardly had time to respond – I read them all. I believe in my heart that the decisions I’ve made and my very fate in this fight have been a result of having this place to come and write, of having my little audience of dear readers to listen to me. You’ve been my compassionate sounding board and cheering section…and even those of you that are quietly in the background wishing me well have contributed – I feel your presence too.

Of course some of you have become dear friends to me, always there to buoy my spirits or just extend a virtual hug. To you I offer my deepest gratitude…you’ve touched my life immeasurably.

Thank you to every single reader of all my blogs. I feel connected to you all and my family and I will carry your warmth and strength with us as I soon step into the next chapter.

Till then...see ya!

PS: gee, now that I've gone all gushy it will be really anticlimactic if I postpone the surgery, huh? I'll have to come up with another swan song and everything :) Oh well, lol...

PPS: snapped a pic before the day was over, thought I should have one up since it might be the last one for a while.

Friday, July 24, 2009

Conservation is not conservative enough

Yesterday was tough, today perhaps is even tougher.

I am waiting to speak to the two different doctors from the two different hospitals -- each conversation has the potential to change the course of my life. I am also anticipating either or both of these men possibly getting annoyed at me. Not that I personally care at this point, but frankly I don't want to base my choice in any way on which doctor will put up with answering questions....I'd rather base it on skill, on expertise. Yet if one of the docs is short on patience the last thing I want to think about is them wielding a knife over my breast and me waking up with any surprises (or at least any surprises I don't already know might happen).

Yesteday we saw three different doctors from two hospitals. Two of the docs were from Big Hospital, the breast & plastic surgeons respectively. Plastic surgeon is the one I've liked from the beginning (the only woman in the whole batch)...Breast surgeon is the new one and this was 2nd visit. These are the doctors that want to change incisions...going across the surface to one side and perhaps even under the areola a bit. I'm not happy and their explanations sort of made sense but really, what do I much research can one woman do?

Not to mention the doctors at Little Hospital seem to have no problem going underneath the breast, in fact, it was their own idea, not mine.

If I go with Big Hospital I'll be having the surgery Monday. MONDAY! That alone makes me want to go with the Little Hospital, which is no good reason I know. Little Hospital will be on the 7th. (Clearly I've decided to stop being vague about dates).

Anyway....the main thing I wanted to blog about was the third doctor we saw. She was very nice, competent, and from a completely different hospital then we've been to for all this cancer stuff. As I previously blogged about I wanted to look one more time at conserving some of my breast. I needed to be sure that mastectomy (regardless of where the incision gets placed!) is the best option.

It is. I'm finally convinced now. This woman was very knowledgable and since she knew we were not choosing her as a surgeon it was as if she had nothing to gain or lose by being clear, direct, and informative without trying to convince us to do what she wanted. I felt a keen trust in what she told me and she pointed out some pathology issues from my biopsy that no one else explained to me.

Mastectomy is, I believe, 99.9% the right choice for me. That's about as sure as I'll ever be.

Of course now I'd like to be sure of the how, the who, the when and the where...

Stay tuned!

Thursday, July 23, 2009

Incision indecision and tissue issues

A play in who the hell knows how many acts

The cast of characters:

Dr. M -- Breast Surgeon from Big Hospital
Dr. C -- Plastic Surgeon from Big Hospital
Dr. K -- Breast Surgeon from Little Hospital
Dr. P -- Plastic Surgeon from Little Hospital
Me -- Confused Cancer Chick

First Scene, Big Hospital:

Dr. M has changed his mind about the incision underneath the breast and thinks going laterally across the side on the surface will be better, claiming suddenly this is preferable to get to all the cancer -- even tho at the last visit he assured Confused Cancer Chick that the incision decision would be up to her. Dr. C thinks that the TRAM flap may somehow cause a bulge if an inframmarary incision is made and while she's not pushing it, she can see Dr. M's point and would also now prefer to do this lateral breast incision instead of going underneath.

Meanwhile at Little Hospital....

Dr. K and Dr. P are totally on board with making the incision underneath -- no questions there, much to Confused Cancer Chick's relief.

But wait...what's that? Why, it's the sound of ominous music coming from stage left.

Dr. K from Little Hospital claims that re-testing the removed breast tissue for all the hormonal receptors and cancer classifications is unnecessary. Yet how on earth will Confused Cancer Chick be assured that all three of the tumors are the same cancer profile? Not all of them were originally biopsied. Clearly this is necessary and important, right?

Scene Two: Back at Big Hospital...

Dr. M proclaims that all removed tissue must be tested, it's practically unscrupulous to suggest otherwise.

Fade to black....Confused Cancer Chick takes center stage, spot light on her...she finally speaks:


Confused Cancer Chick's head explodes. Curtain falls.

The end? hospital I will have no scar on my breast but insufficient pathology, the other I get a scar across my boob but the necessary testing to insure proper cancer analysis. My task before noon tomorrow is BY PHONE to either convince Dr. K at little hospital to do the pathology I need or convince Dr. M at big hospital to do the incision I want. And then to believe that any of them are accurate enough to have faith in.

Depending on the answers I'm either having a mastectomy on MONDAY(!)....or the first week in August.

There's not enough Xanax or chocolate in the world.

Wednesday, July 22, 2009

Bravery is in the eyes of the beholder

Lest anyone think I am braver than brave after my last post, I assure you I am as terrified as a woman could be. But more disturbing -- I am second guessing my choices right up to this last minute. I actually STILL have two mastectomies scheduled at two different hospitals – and one of them is next week…the other about a week after that. I’ve only met one of the doctors involved once and my second meeting with him is Thursday. I will have to decide after that.

A small part of my indecision is no doubt the sheer fact that I don’t want to do any of this at all, anywhere, anyhow. Who would?

However I also keep questioning myself on another front-- since I finally got somewhere on the nipple sparing after nearly giving up, maybe I should take a few last shots at conserving the breast in some way? Although that process is less clear in terms of simple solutions, have I tried hard enough to figure it out?

See, I could pick up the phone, call a doctor’s office and ask if they did nipple-sparing mastectomies without wasting my time with the ones that don’t. (a HUGE piece of advice for ANY woman facing this btw – even if you think you won't need one or aren’t a candidate you just never know and should have the option available from the start)

Anyway, to even attempt making a last ditch effort at breast conservation is not quite as clear-cut, sorry for the pun. There’s no one obvious surgical approach in my case, no simple question to ask with a phone call to hasten the process of elimination. It would be (and has already been) a time consuming effort of pure trial and error to find a doctor willing to consider it and then also willing to do something in a way that is acceptable to me – a combination I’ve not found or we wouldn’t be having this blog conversation AGAIN. I’d like to think that in and of itself gives me the answer…shows me that this is sadly just not a great option for me. But then I remember that if I’d given up on nipple sparing based on the same criteria I’d be having a vastly different procedure than I now have planned. And so I continue to wonder.

Right now there are two breast cancer surgeons I saw back at the beginning who would simply take almost a quarter of my breast and “rearrange” the remaining tissue as a solution. That just sounded vague and not very promising to me, which is why they were taken out of the running. They thought I was worrying needlessly, or a control freak, or not accepting reality -- take your pick.

The plastic surgery options for fixing any deformities after breast conservation are complicated, largely by the absolute need for radiation – if you conserve breast tissue you HAVE to have radiation.

(FYI, mastectomy alone is equal to conservation w/radiation in terms of survival, hands down, cold hard fact -- conservation w/rads only potentially raises your risk for local recurrence, and mastectomy doesn't elminate it, just reduces it.)

Radiation can affect cosmetic outcomes significantly or barely at all and there is often just no way to know – it’s the luck of the draw. The only thing clear is that if I were to need a mastectomy after all some time in the future the cosmetic outcome of that would very likely be compromised. Irradiated skin often doesn’t respond as well to the larger process of whole breast reconstruction.

Plus, about 40% of the time after they excise the tumors they find they don't get clean margins of cancer free tissue and have to go in again -- in the case of a wide excision like mine that could mean either major deformity or resorting back to a mastectomy anyway.

Bottom line – conservation, if possible for someone like me with multiple, albeit small tumors, has a variable outcome cosmetically. I don’t generally do well with vagaries like that, psychologically speaking…I’m guessing I’m not alone in that.

But then there is that one HUGE caveat that keeps me wondering if I gave up on it too fast, if I should try and roll the dice and see if I feel lucky – that caveat being I would likely have normal nipple function if I managed to conserve my breast. Not guaranteed…but likely. My breast could be disfigured to varying degrees, but it potentially would feel things, you know, in that special way.

Although maybe it’s an over simplification, from my perspective this has been like choosing between feeling good or looking good. Which is really more important? If I was devestated or self conscious about my breast’s appearance would it matter to me that it felt things…quite frankly would I want it touched, would I be inclined or able to enjoy it? Yet conversely, will looking sort of normal but feeling nothing always be like some sort of fake-out, a second-best facsimile that leaves me with a constant sense of disappointment or loss?

Yeah, I know, neither sounds all that hot to me either, but it's all I've got.

My husband will love me & want me no matter which way I go…it’s really about how I feel and what my reactions will be. I’m not sure I know myself well enough or can imagine the outcome clearly enough to answer these questions. And perhaps that is where the problem really stems from. After years of hiding behind obesity trying to ignore or distort my body and then finally coming to a healthier weight and state of mind by making peace with it, now I have to decide between marring it’s appearance or losing a pleasurable function. All while I face a potentially terminal illness, nonetheless!

And on that front -- you may be wondering where cancer comes into the equation and why it hasn’t more often. You may be thinking this is crazy, it’s gone on long enough – aren’t I scared the cancer is spreading its microscopic nastiness at this very minute while I write this???

No, I’m not. Breast cancer like mine (IDC, ER/PR+ HER2- no suspected lymph node involvement) is the type that 70% of all women who are diagnosed with breast cancer have, and it can take anywhere from 8 – 10 years to even become detectable…a few months more isn’t going give it time to grow enough to make any considerable difference. Not that one wants to take much more time than I have…I’m at the outer limits here, but not unsafe. So I could postpone any surgery for a week or two more for doctor hunting if need be – besides, it’s become my new hobby, haven’t you noticed?

Believe me, if you're half as sick of hearing about this as I am living it, I understand completely.

I could just say that, as one doctor told me, “Mastectomy is NEVER the wrong choice,” and take the next step as planned. I could choose to look better and be aggressive in my cancer treatment at the same time, eliminating the wild card of radiation, reducing possible local recurrence. It's very likely I will do that.

But every other minute I decide something else. In between that, frankly, I’m either crying or cleaning…sometimes both. It’s a brand new skill I’ve developed that I didn’t know I had, I can clean and cry my eyes out at the same time.

Yeah, okay, you know what? After reading this maybe I am brave…I’ll give myself that after all. I'm fucking hugely brave. Take that, cancer.

Monday, July 20, 2009

We can rebuild her, we have the technology...

For those too young to know, the post title was inspired from the 1970's TV series, “The Six-Million Dollar Man” ...though perhaps it’s offspring, “The Bionic Woman” would be more apropos in my case.

This post will be about the actual procedure I’m having and go into alot of detail. So be forewarned if you are uncomfortable about surgical stuff or bored by the whole technical side of things. (There are some links at the end if you want to see some photos)

I wanted to put a comprehensive blog entry out there with all the specifics for a few reasons: in case anyone following this is curious...or unfortunately really needs the information because they have breast cancer...and also because breaking it all down scientifically helps me to both face it and deal with it. Strangely enough it calms me to convey this information.

I'll be having a unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction. Yes, it's a big impressive name when you put it all's also a big impressive surgery so I’ll divide it up into the separate parts…

TOTAL SKIN SPARING MASTECTOMY -- when this term includes the word "total" it usually refers to preservation of the nipple areola complex (NAC) and the outer skin of the entire breast. They simply take out all the interior breast tissue, all the way up to the clavicle, and leave what they call an empty envelope of skin, to be re-filled immediately during the same operation in the reconstruction phase of the surgery.

In order to access all the inner breast tissue for removal they make an incision in the inframammary fold, that crease right under the breast that really doesn’t show. It should be about 4 inches long and won’t be visible unless I lift my breast up (and at my age trust me, there’s enough droop to hide the scar!) ***I ended up going with a different incision in order to ensure the surgeon had better clearance to get clean margins, cancer-wise. The incision was on my breast to the side of my areola by my arm. It also gave the surgeon access to my lymph nodes so no seperate incision was necessary for a sentinel node biopsy.
To see if nipple/areola preservation is possible they will sample the back of my NAC by removing tissue and testing it for microscopic cancer cells right then and there while I’m on the operating table. If it’s negative for cancer cells then the NAC stays put. If there is cancer present then one of two things will happen -- depending on how pervasive the cells are they may simply remove my nipple and leave the areola (it’s technically just skin and not breast tissue)...and later I can have a new nipple created. Or, if the cancer cells are too near the areola surface, then they will make what’s called a circumareolar incision cutting around the perimeter of the areola and remove the whole NAC. What will fill in the circular hole then created will be skin from my abdomen that can later become part of what’s turned into a reconstructed nipple & areola -- as closely matching the remaining one of the unaffected breast as possible.

SENTINEL NODE BIOPSY -- A sentinel node biopsy removes the first couple of lymph nodes under the arm to test them for cancer cells. If they test positive then more are removed. It is possible to need all your lymph nodes removed. To locate the sentinel nodes they inject either a blue dye or a radioactive tracer right before the surgery (depends on doctor preference). They will make a separate incision under the arm to locate the first node(s) and remove them. The results of the sentinel lymph node biopsy is part of how they determine what stage cancer you have and how likely it is that it might have spread anywhere else in your body. IMO it is one of the most important parts of this surgery, save for removing the cancerous tumors themselves. To learn more about lymph nodes check out this link.

After all is said and done in all likelihood my entire breast will be rendered permanently numb from all the nerves being cut, tho it is possible to regain some skin sensation it is not usually quite like it was before. In terms of the nipple, it will not have sexual sensation but will react to temperature changes and maybe somewhat to touch. It is quite possible that the NAC or part of it will not survive the surgery due to lack of blood supply from all the tissue removal. This is known as necrosis (tissue death).

On to where they rebuild me…

THE PEDICLE TRAM -- The initials “TRAM” stand for Transverse Rectus Abdominus Myocutaneous. Simply put – they take a portion of muscle, fat, and tissue from the abdomen, then tunnel it all the way up under the skin beneath the chest and into the empty breast envelope from underneath – all the while the main blood supply stays attached via the pedicle.

All I can say is thank goodness for a self-activated morphine drip!

Anyway, the results for my abdomen will be like that of a significant tummy-tuck. There will be two incisions that meet at the ends, one an inch or so above my navel (which will be removed and relocated) and one just above the pubic region. Both incisions will be hip to hip, sort of like a giant ellipse. All the flesh, fat and whatnot between those two incisions will be removed except for the part used to fill the breast envelope.

In regards to the belly, I once read someone likening it to the effect of pulling down a window shade. After the pedicled flap is placed into the empty breast and the excess tissue discarded, the muscles will be sutured and the remaining abdominal skin will be pulled together taut to create a single hip-to-hip incision sutured below the bikini line. In my case, thanks to my major weight-loss, the incision will probably go about halfway around the circumference of my body. Oh, and at the end they will sew my old navel back on the new abdomen.

Eventually the long pedicle that encases the blood vessel running underneath my skin from my abdomen to my new breast will atrophy and shrivel so that the healthy vessel settles into it’s new home, but for a while I may temporarily have a bulge there until it does. I could also suffer from a hernia where the abdominal muscle is removed, which can be surgically repaired if need be. I may have to undergo physical therapy to encourage the process of other ab muscles compensating for the lost section of rectus abdominal muscle.

So, that’s the whole deal, surgical speaking.

Needless to say it again, but this is fairly massive surgery. Implants would be A LOT easier. However the benefits for me and my personal lifestyle are worth it, in my opinion. A breast created out of my own tissue will age with me, droop and fall naturally, be warm to the touch and never need to be replaced. Ostensibly if all goes well this reconstruction process is a one time only procedure…a revision is sometimes needed for final “tweaking” – however that is typically either comparatively minor surgery or even an outpatient process. Either way, unlike implants, once you’re finally done, you’re done for life. This is important because avoiding a future of repeated surgeries means minimizing risks of surgical induced blood clots...a necessary consideration with my genetic mutations. So, bigger risk/ordeal now eliminates risks in the future as I age.

My understanding is it can take months to recover fully from this, but everyone is different. I will hopefully be out of the hospital in around 7 days, depending. Because I will have a team of three doctors working on me at the same time, two plastic surgeons and 1 breast cancer surgeon, the operation will hopefully only take about 4-5 hours. Traditionally this procedure would take twice that long.

Well, okay...that’s IT, everything (and probably waaaaay more) you ever wanted to know about unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction, but were afraid to ask!

Here’s a link if you’d like to see some before and after pix I found online. None of them are nipple sparing but there’s nothing gruesome whatsoever, tho there is obviously nudity: TRAM reconstruction. And here's a general search page with many pictures -- some include graphic surgical images.

It is my hope that this info and following my saga might help others. When I make it thru and am done maybe another woman facing this same or similar daunting process will be able to learn even a little from my story...and see that in the end it will be okay. I've been HUGELY comforted by others who have shared their own tales and in gratitude this is the least I can add to the collective voices.

Saturday, July 18, 2009

I should be...

...writing down final questions for both doctor teams so I can choose. I actually have two mastectomies booked, one with each team. Clearly one needs to be canceled. But I can't seem to concentrate, can't seem to focus.


I should be preparing in other my bedroom for one. I'll be spending ALOT of time in here and it's a wreck. It's always the messiest room in the house. We can just close the door and forget it if someone rings the doorbell, you know? My house is a renovated cottage, kitchen, living room, dining room & two bedrooms -- 1 bathroom. Other than the basement, that's it. We're not going to talk about the basement.


I should be getting stuff ready for Meggie's 8th birthday. The timing here is awkward, with one mastectomy I'll be just out of the hospital and if I choose the other I'll be going in practically the next day. Neither is good. I don't have enough stuff for her. The older she gets the harder it is to shop for her. She's not into clothes, not into dolls, loves all things animals and adores caterpillars/butterflies. We got her a new bike -- she didn't ask for it but she's outgrown her old one. I got her some cool plush thing that turns back & forth into a butterfly/caterpillar. I'll also be ordering live caterpillars that you can raise to butterflies...but we've done it before and she needs help caring for them so she'll have to wait until I'm home from the hospital and things settle down. Other than that I'm drawing a blank -- she's not sure what she wants. Poor kid, she probably just wants her Mama back.

And that brings me to what I'm doing instead of all the things I should be doing. I'm crying, I'm panicking, I'm a deer in headlights.

I was rolling around on the bed today with Daniel (his favorite thing to do lately) and it hit me -- I may not be able to do this for a long, LONG time. Maybe so long that he'll have outgrown wanting to, maybe not ever. I'm not just having major surgery. Because of HOW they do the surgery I could be forever changed in some of my abilities. They take abdominal muscle, nerves are cut, blood vessels are rerouted. I may experience permanent changes in how I'm able to do basic things. I've heard horror stories, too.

So I started to cry and haven't really stopped. Here comes the pity party, don't say I didn't warn you...

I'm only 45, young in breast cancer circles. But I'm an older mom...that's not news to me of course. But until now it was just on paper. I never felt too old to be the mother of young children. Sure, I wish I could have had them when I first started trying...back in my early thirties. But that they are here at all is miracle enough and I never looked that gift horse in the mouth. I figured losing all that weight, quitting smoking, becomming a vegan -- all of it gave me a bit of extra insurance towards making up for the few years behind I was in terms of maternity.

Guess I was wrong.

I'm terrified of being some kind of invalid...or even if not quite that extreme, of just being limited in a way I never was before. I want to be an active, healthy mother. I'm too damn young to face this...not yet. That's what I keep thinking...not yet. I wake up with those words on my lips. Not yet to cancer. Not yet to losing a body part, most of all please...not yet to leaving my children behind because I fail to beat this. Not yet damn it. Please.

Which leads me to the last "should". I know on some level I should be happier, relieved, grateful even that I have potentially early stage cancer and a chance at a better surgery than the former mastectomy I was scheduled for. I worked hard to get this better deal. And I was happy...really, okay, I was some form of happy for a day or so. But that's worn off now and I'm just plain scared and sad. Deeply.

Suddenly keeping my nipple seems inconsequential compared to everything else. It won't feel anything anyway...I may be permanently numb in my entire breast, my armpit, part of my arm, my entire abdomen. It's hard to imagine. I think I haven't been imagining any of it -- I focused on that nipple still being denial, like maybe I thought somehow I'd be different and it would be in some way magically close to the same as it was. But nothing is ever going to be the same as it was before. Nothing.

I will once again have to find a new normal. I've done it before. Believe me, more than a few times. It sucks. I'm sad to say goodbye to my old normal. It was nice. I just want it to be nice again.

I should be reassured by all the times I've found that new normal again when I thought it was impossible. But I'm not. Instead I'm wondering if this time I won't be able to do it. I think that is the real fear at the bottom of it all. That this time I've been beat. Today I feel beaten. I should be stronger -- I'm a mom, my kids need me to be strong. But instead today I'm just me, alone, and I'm not anything I should be but sad.

Thursday, July 16, 2009

They're coming out of the woodwork now!

I went back to the NJ hospital where I'd originally scheduled my mastectomy, the one that wasn't nipple-sparing. This time I chose a different surgeon there, just got his name off the hospital website...and he absolutely thinks I'm a candidate for the skin/nipple sparing mastectomy (S/NSM) and would do essentially the same one that they are offering me in Westchester. I like him, and he trained at Sloan Kettering so he's got good oncological cred.

Suddenly there is a plethora of people willing to give me what I want, I hardly know what to do with myself!

So, if you're confused, here's how it stands now: I could have my S/NSM at either the original hospital I planned but just switch cancer surgeons, or I could go to the new hospital I spoke of in my last two posts. I like all the doctors involved, both the cancer docs and plastic surgeons at either place.

There are some differences but so far the main glaring one is between facilities. One hospital is a university medical center the other is a small (and I mean small) community hospital. The docs at the small hospital are renowned and people do travel there from around the country just to have breast reconstruction. But on the other hand being in a big university hospital, like the kind where they fly you in by helicopter if it's serious, well, that sounds good to me if something were to go horribly wrong. While I've never had a blood clot yet (knock wood) I do have two of those pesky mutant genes just waiting to potentially express themselves.

I truly can't decide...this is tough.

I'm going to make appointments to see both breast surgeons again ASAP. I'm fairly confident in all the plastic surgeons involved, so now it's time to concentrate on the cancer issues...things like sentinel node biopsy methods, clear margin measurements, DVT monitoring...all that stuff that is the important part of this ordeal.

As of right now, I could have the mastectomy in either facility w/in two weeks. TWO WEEKS! Time's moving VERY fast!

Tuesday, July 14, 2009

Wow, it gets even better...

...and quite frankly it's about damn time!!!!!

So I actually like the plastic surgeon ALOT, and he is more than willing to make me another saggy middle-aged boob to match the one I already have. He gets me, and he's a warm, caring & thorough doctor. You can imagine that after all this time of searching I am in deep shock now, lol. It almost seems too easy and I'm waiting for the other shoe to drop (or maybe that should be the other nipple?)

Anyway, there's some other good medical stuff here too -- like he works with a partner to do my kind of they all work together on me at the same time, two plastic surgeons and one breast cancer sugeon. This is super important for someone with my clotting factors because it cuts the time on the operating table in half -- instead of an 8 hour surgery they get me done in 4 hours. Yes this makes sense. No, I can't explain why even in the big city hospitals like Sloan Kettering they don't/won't do it this way.

I can't explain ALOT of things about some of the doctors I have seen!

It's scary when you think about it. I did everything "right", went to the top rated hospitals around. Sloan K., NYU, Hackensack Univ, to name just a few. These two new doctors are out of a small breast center in a Westchester County NY hospital that makes my local hospital look positively metropolitan. Yet they are doing state of the art surgeries, people travel to go there. I have to tell you, when we walked in I was honestly not impressed, I'm a bit of a medical snob, lol. In fact, I thought it was a royal waste of time by the looks of the joint. How wrong I was!

So, where did I find these two miracle docs?

For a moment I'd like to say a few words about some young women I often lovingly refer to as the "BRCA gals". These women are faced with a high genetic risk of getting breast cancer. Many of these brave young women do prophalactic mastectomies to save their lives -- as you can imagine a tough decision. But these are empowered, strong women I admire more than I can say. They also, I have found, know alot more about mastectomy & reconstruction than practically anyone else. It is from researching resources available thanks to these women that I found the two doctors I have just seen. I will always have a special place in my heart for these amazing women.

I'm going to cancel my mastectomy at the other hospital. Since I still love the original plastic surgeon I saw there I made an appointment with a different breast surgeon to see if they will match what I'm being offered in Westchester. If so, I'll have to choose. If not, I have my team in place and will schedule the new surgery in Westchester.

After 3.5 mos since first finding the lumps it strangely seems to be happening very fast now. My head is spinning a little. But I am truly more at peace with the sugical choices I have now. I'm so glad I didn't give up after all, that I listened to my gut. Even if in the end I lose my nipple it will be for all the right reasons and not just because of medical ignorance or arbitrary red tape.

What a relief!

Thank you S000000 much to all my readers for listening on & on to this endless saga, for supporting me, for encouraging me and for the oodles of comfort you have offered. This process would have gone far differently without all of you and this blog. Of that I've no doubt.

Blessings and gratitude to all!

Monday, July 13, 2009


Ok, I'll cut to the chase first and then explain after -- I found a breast cancer surgeon who will attempt a nipple and skin sparing mastectomy.

I think I'm in shock.

When you have breast cancer surgery, whether it's a simple lumpectomy or a full mastectomy, they test all kinds of stuff for microscopic cancer cells while you are literally open on the operating table...your lymph nodes, the margins of the tumor & surrounding tissue, etc. Well, in a nipple-sparing mastectomy they would just test the tissue behind the nipple in the same way. If there is any cancer there, then off the nipple goes -- it can't be saved.

So clearly this if very simple, right?

Yet I've been unable to find a doctor willing to do this ostensibly because one of my tumors is a couple centimeters away from the areola. That doesn't mean there's cancer in my nipple/areola, just that there could be. So why would you remove what might be a perfectly innocent nipple without just testing it first, why remove it if you didn't have to? Again, this seems VERY simple to me.

It's simple to this doctor today too :)

He'll biopsy the cells behind my nipple. If there's cancer, bye-bye nipple. Yeah, that'll suck, but what a huge freaking difference to mourn the devastating loss of a CANCEROUS nipple instead of one that might have been perfectly healthy!

Also, the nipple might not survive after surgery -- that happens sometimes. It would be very sad but again, at least it had a fighting chance.

After the surgery all the tissues removed or sampled are further tested more extensively...that could reveal there was cancer in the nipple after all. I'd have to go back and have it removed. That would be crappy as well, but again, I'd be saying goodbye to a CANCEROUS nipple, not a healthy one.

Finally, the nipple won't have the same sensation anymore. It will react to temperature and touch, but it probably won't do much beyond that. Sad, but better than nothing.

This doctor doesn't recommend trying to conserve my breast because he thinks it is too risky cancer-wise, so it's not like he's careless and willing to leave malignant body parts on me.

Now the trick is to find a plastic surgeon willing to resist the temptation to nip and tuck my boobs into smithereens so I can win a wet T-shirt contest, lol. I need a PS just like the beloved one at the other hospital who was willing to make me a saggy old ta-ta to match it's mate. In all seriousness, if I can't find a plastic surgeon to replicate my existing breast then that means I could end up with two non-functioning nipples after they get done messing with Lefty...kinda defeats the purpose of saving the right nipple. So while there's hope, I'm only halfway there.

But it's better than what I had just yesterday :)

Friday, July 10, 2009

UPDATE: so far, no good

(This post is a quickie little update to my previous entry.)

I'm still looking into a few possibilities but so far with disappointing results, mostly in terms of just getting accurate, reliable info. If I have to let go of saving my nipple I just don't want it to be for lack of trying...simply because I'm unable to find the right doctor who offers the appropriate, up to date treatment options, you know?

In any case, just wanted to put something up to let all know I'm still here, still going, one way or the other :)

Have a great weekend everyone!

Monday, July 6, 2009

One more last ditch effort...

…to save at least some of my breast. Well, sort of.

Yeah, I know, you were thinking I was all done with that. Not so much, apparently. See, here’s the thing…according to everything I’ve read there are a lot of false positives on MRIs. Yet that’s what we’re basing the final scale tip towards having a mastectomy on. It is possible that the suspicious lesions are nothing to be suspicious about at all and I just have my three original tumors. It’s possible they are all cancer, too. But I don’t like that question mark hanging over my head.

So I’m seeing the doctor one more time to discuss doing a core needle biopsy on these lesions. If they are cancerous and located far away from my other tumors then clearly I’ve made the right decision and that’s all there is to it. But if they are benign, or even if they are malignant but are close to the original three…then there’s some further discussion.

I’m not hopeful so much as determined to rid myself of as much ambiguity as possible. I might end up right back where I am, mastectomy bound. That’s fine…well, okay, not fine exactly but you know what I mean. No harm, no foul. I will be going under the knife in a couple weeks knowing there was nothing else I could do, or as close to that as is reasonably achievable. That would be a better feeling than what I have now.

Of course it’s also possible my case will never be as black & white as I’d like. I may always be left with a shade of gray and have to make my peace with it. If so I’ll learn to accept that and move on. But if I don’t have to, or if I could be a little more certain in any way, then I need to pursue it. Information is power, both in decision-making and reaching acceptance.

So, maybe don’t wish me luck; just wish me clarity…either way that would be the best possible outcome.

PHOTO: growing on me

After my first photo of the new doo I decided to take the marvelous advice of some commenters and try doing my hair curly. The good news is I kinda like it, the bad news is it required even more help from a curling iron than when it was longer! Without the taming effect of a few well placed curls I looked more like a Celtic version of Roseanne Roseannadanna. (Ah, Gilda, how we miss you.)

Anyway, not quite the easy maintenance style I was shooting for post mastectomy-wise. I'm thinking hats and scarves could make an appearance after the surgery before I even lose a lock to chemo. At least in the meantime I hate it alot less -- in fact, it's actually kinda growing on me and I also like it when I wear it smooth now, too. Funny how so many things take alot of getting used to...big or small, change can be a real bitch.

Hope everyone that celebrates had a GREAT 4th!

Friday, July 3, 2009

Hang on!

We’ve all probably heard various episodes of life described as being like a roller coaster ride, maybe even used the phrase ourselves at one time or another. Whether it be something positive or negative, many situations lend themselves aptly to that metaphor. You have building anticipation as the ride begins, then a sudden, rapid plunge to frightening depths only to be contrasted with the giddiness of soaring heights...there's speed, swift turns and twists, terror and elation all wrapped up into one extreme ride.

I went back and read all my blog posts since finding the lumps in my breast that have turned out to be cancer. This is clearly one of the wildest roller coaster rides I’ve ever been on. From one post to the next I am up, down and twisted inside out. I found posts where I seemed determined, brave, calm -- even humorous…and then in the very next entry I was plumbing the depths of near inconsolable despair – practically all in the same week. Understandable, of course, but nonetheless striking when you see it all laid out in front of you.

I seem to have reached a little plateau now as I wait for my surgery day. This is not to say I'm even keeled emotionally, just that I am bracing for what comes next. I can see there is a huge, sharp turn ahead and I know after that the car will plunge down faster & further than ever before. I also know that if for no other reason than the fact that what goes down must come back up, I will not crash when I hit bottom, at least not this time. Slowly, at a snails pace perhaps, the tracks will again climb the steep upward summit and who knows what will happen after that.

Hmmm, a loop-de-loop, perhaps?

Meanwhile as the anticipation builds I vacillate between moments of prepared resolve and complete panic-fueled doubt. I could second guess my second guesses right now.

I can't help but wonder, out of curiosity, what an outside observer thinks as they read my little but growing collection of posts on this subject...what over all impression they get from the big picture thus far. Even reading all the posts in order of their occurrence I find it hard to follow a common emotional thread, but then again I’m not very objective. I see things I wish I’d done differently, said differently, felt differently – not regret, just the birds eye view of hindsight.

In years ahead when I come back to this chronicle I wonder what will strike me then…what will I wince at, what will make me cry, what will perhaps even make me laugh. I wish I could fast forward right now, to skip the scary part. But I can’t. Instead I have to just hold on tight for dear life, maybe close my eyes sometimes…scream at the top of my lungs when I can't help it, and wait for the ride to end…or at least to get to the fun part again. I just have to hang on the best I can.

I hope all that celebrate it have a happy Fourth of July. Thanks for coming along on this ride with me, it's always so much nicer to have a hand to hold when things get crazy and the readers of this blog have blessed me with many, loving hands.