Saturday, October 28, 2006

stitch'n time

i love my PS and his nurse
dr gayle and pam are people i would love hang out with
and that's what my nipple surgery was like
i was awake, parts of me were anesthetized, there was a sheet separating my head from my body, so we chatted and hung out
only while i laid there very still, dr g took a skin graft from inner thigh (well, not inner thigh - bikini line - right where the elastic hits) then make a circle and fashioned a new nipple.
i'm too tired to go into details right now but it is starting to look sort of realish
the gdamn skin graft stitches HURT tho - not on my numbed chest, in my crotch.
i screamed when i got in a cab this morning
yow. no sudden movement and not a lot of flexibility in the legs. plus the line of stitches is kinda lumpy looking. not super attractive. not that my bkini line is something i go around flaunting, but another scar on a perfectly fine part of my body just for a nipple?
yeah, it's nuts, but i'm glad i did it anyway.
big bruise next to the incision. very tender.
nipple is sewn like a little baseball, areola is purplishblack and sewn in place.
the way it works is, a circleof skin from breast center is used to make nipple, the areola is formed from the dark meat of inner thigh, then cleaned up and sewn into the circle.
the nipple may take 3 mths to shrink to a normal size - it's a small gumdrop now.

Friday, October 27, 2006

Finito

yes, it's true
nearly one year later
i am rebuilt, better than ever...
got myself a new nipple and a 4 inch scar in my right groin to prove it
i'm a sewing sample
ok, will catch up tomorrow
sv

Friday, July 21, 2006

fallin' apart at the seams

july 20
it has been weeks since surgery
and i still have a gdamn hole in my boob
not the fake one. that is sewn up nice and neat. a water balloon inside a baseball (i'm thinking the stitching/not the shape).
the good ol' boob
the right breast with the right stuff
at the intersection of the vertical and horizontal scars, where the 3 seams meet up, the scab came off 3 wks ago after swimming etc. but it was pretty deep - like a plug keeping the inside parts of my body internal. when the scab came off, i had a tiny window into the world of pink flesh - other dermal layers that i obviously don't know the names of and most certainly do not want to see.
to be continued...
too tired at the mo

Saturday, June 03, 2006

Cosmetics and Cancer? Parabens, etc...

you know those emails you get in your inbox with subjects like SEND THIS TO ALL THE WOMEN YOU KNOW!!!!!!!!!!
then it's a long story about tampons containing asbestos or shampoo cleaning motor oil off garage floors, etc.
well, now i'm finally gonna find out the truth!
i've been talking/wondering about cosmetics that contain parabens (nearly all do - you really have to look and spend to find ones without 'em) but can only take in so many threats to my health at a time...
here's the info from
www.sharecancersupport.org

Date: Jul 19
From: 6:00 PM To: 7:30 PM

Marian Feinberg, Environmental Health Coordinator, For a Better Bronx, will discuss carcinogens and hormone discrupting chemicals in cosmetics and personal care products. She will also provide guidelines to help women research and evaluate items on their own. Of equal importance will be a discussion of the role that cosmetic companies play in breast cancer research and the breast cancer movement. Opportunities for advacacy around these issues will be presented.

SHARE Main Office
1501 Broadway
Suite 704A
New York, NY 10036

Phone: (212) 719-0364
Fax: (212) 869-3431
Directions: Between W. 43rd & W. 44th Sts.
Note: Please bring photo ID.
You must first log-in to enroll in this program.

the unveiling

nurse pam peeled off the tape on thursday to reveal....drum roll, please....um, bruising and some big scars.
well, what did you expect?
the funny thing is that the left side - la sinistra (sp?) - the ersatz boob - is the one that looks more normal to me.
i mean, "normal."
this is the start of a whole new normal.
or a whole new abnormal.
she casually mentioned that as the swelling subsided i'd be experiencing some strange sensations...oh, like say, an electric shock, sharp pain, tingling, etc. and symptoms can last for 6 mths to a year. HELLO? wanna mention that crap before the surgery? next time!
i'm kind of kidding, but it is hilarious and/or horrifying how the drs/nurses just toss off these lines...
i didn't even get a chance to ask what the little pin pricks were spaced evenly across the top of my chest. it also looked like someone dropped a scalpel on my breastbone cuz i had a crooked little cut there. OOPS! guess that eager young resident got all sweaty-palmed when it was his turn to play.

so i keep the sport straightjacket on until next thursday - that'll make 2 wks. then i can wear whatever i want, and i should start using silicone gel, tape on a silicone sheet OR use vitamin e 2x/daily to reduce scarring. i've heard the sheet thingy works best but isn't that just doing what i was trying to avoid? forcing my body to ingest silicone? oh, christ, at this point, just gimme the boobs and let's get this over with.

PSA- PUBLIC SERVICE ANNOUNCEMENT
i've gotten a few of these drive-by mastectomy bill petitions - sign it now and send to your friends. it only takes a second. believe me, you do not want anyone you know to have a walk-in mastectomy. i was out within 24 hrs of both my girls' births and my mastectomy and that was cutting it close.

Friday, May 26, 2006

mission accomplished

as expected, surgery in the am, home by the pm
drive by surgery is such a pleasure
quite a different scene from the first time tho
a beautiful sunny day - didn't have to leave the house in darkness
took a photo in the waiting room bathroom but this time it was to document the existence of the freakish expander and say goodbye to it - also, farewell to the right breast as i knew it - it served me and my children well, but in the interest of symmetry, it will be hoisted up to new gravity-defying heights.
purple dots have sprung up where the horrid port once was - dr gayle joked, "now you want me to leave IN the port, right?"
he drew dots and dashes on me in special sterilized purple marker while two young men looked on - a resident and an intern or something. whatever. i could take my shirt off in front on 14th st now if my dr. told me to. the more official of the two, said "she expanded nicely" or something like that. i guess the bigger the better in the expansion world.

already, i can tell i look much more normal...i still have the hospital bra on as instructed. but the skin above the bra line is no longer bulbous on the left side. this is worth it already.
my skin is crawling with itchiness tho - the velcro closure of the bra, the steri=tape over the sutures...worse than the pain which is not too bad. a vicodin this am and this evening makes it totally bearable.

thanks to all of you who've been sending good wishes, etc. i received them all very gratefully.

Tuesday, May 23, 2006

surgery thursday

been a bit preoccupied...
i'm working on a little article for BUST mag about cool British mags due by thursday since that is when i'm having the implant exchange and a lift on the other side (mastopexy). i don't know what time the operation is - i call in the nite before to find out. which reminds me that i have to find someone to sleep over here or send the girls elsewhere cuz it might be at 6 am again. damn. have not been thinking this thru i guess!

busy lately - tuck's been away, bday parties, tap dance recitals, therapists (mine and jo's new one - going well!), visitors, ICFF this wk. also, stopped drinking alcohol completely - too worried about health and too hard to just have 1 glass of wine once in a while (what is the point?!)

back to work...more when i finish this

Sunday, May 07, 2006

GO MOMMY GO! MISSION ACCOMPLISHED

Thanks to all of you for your support during the winter of my discontent and for the Revlon BC walk a wk ago saturday [sorry for lack of blogging - trying to do more "work"-ish stuff]
It was a beautiful day and so nice to be w/friends, family and 40,000 others - the power of purpose is really amazing.
Here I am crawling across the finish - a joke since we strolled thru it!
















Here are Faith and I - we went thru treatment at the same time but hadn't met until this morning!

Faith and i seemed to be the only recent 'survivors' - i saw only one woman with a scarf on her head who was obviously doing AC but that was it. lots of stares and the camera focused on my sign and my head - which i had temporarily 'dyed' with red hair goo.





This is my sister, Tracy - aka, Ray (Louisa Ray's namesake) - who came in from LI to walk the walk and talk the talk.

















OK, so CHERRIES IN THE SNOW is not the best color for me. Jo lends her sunglasses while Maya looks dismayed at my freakishness.



















How could the HOT MONKEYS team throw out their sign? It's my fave!

Monday, May 01, 2006

change of plans

have changed reconstruction surgery date to May 25
this allows me to get the results of my genetic testing on May 22
if i'm positive for BC gene mutation, i would get a prophylactic mastectomy on the right (and leave the expander in on the left, i guess)- and then take ovaries out at some later date
if i'm negative, i'll just do the reconstruction surgery as planned

the chances appear slim that i'd test positive so i'm not THAT worried - just a weeny bit

it's funny tho about these choices...pros and cons carry different weights for everyone
the woman that i met on line who also used my PS had stage 0 BC. she got a bilateral mastectomy - BOTH! her dr. sent her to talk to a shrink he thought it was so nuts. but she said she never wanted to worry again. then she got silicone implants - which is something i totally worry about.
me, i'd rather keep my real breast a while longer and just be vigilant about checking to see if i ever get a new cancer, but skip the silicone cuz i'm afraid of some other ill effects.

BTW, it's considered a second primary cancer if you get it on the other side - it's not that the cancer metastisized to the other breast - when cancer metastisizes it goes to other places like bones, liver, brain, etc. so if i do get a new cancer on right, i'd go thru the chemo etc. when it/if it happens.

Wednesday, April 26, 2006

"Stop Blogging, Start Writing"

That was the title of the slate.com podcast that changed my life.
[Well, not really, but I haven't been blogging much, have I?]
The podcast was the sorrowful tale of a Bklyn lass whose ambition was/is to write the great American novel, but her faithful old blog turned on her, forming a roadblock between her and her dream.
She had to choose.
I think her name was Sophie - let's call her that anyway.
So she killed her blog.

Wow. I know - it's a heavy story. Why do u think I've been gone so long?

The original purpose of MY blog was to create an open forum in which to discuss my boobs - oh, and breast cancer....
But my unemployment checks have run out and it's time to make these fingers dance on the keyboard for money.

"But SV," you say, "Do you, the mother of two children, really want to prostitute your digits that way? That is a long hard row to hoe, Ho (ho ho ho)."

I know, but Mama's got a shoe habit -- I ain't willing to "Payless." Besides, didn't you see "Weeds"?

Saturday, April 22, 2006

loser

as in, i am such a
actually had something to do on a friday nite and FORGOT
just sat in my pjs and emailed and then watched part of that revolting movie 'requiem for a dream'
ugh
why do people like those kinds of movies? why do they make them? why did i watch it?

meanwhile, i missed michael shelley's show at Lakeside Lounge - ck out his site and buy his cd's all lovers of pop rock ballads.

got the new paper magazine today and was bummed to see an article about Tord Boontje - the designer of those lacey, flowery lites. he was my roommate in bklyn about 15 yrs ago and i wanted to write about him 2 yrs ago, so naturally i am annoyed that someone else wrote it for paper (i used to be a frequent contributor).

which leads me to the podcast from slate i heard yesterday entitled, "Stop Blogging and Start Writing" - not that i even blog that much either. i just don't feel like i'm getting much accomplished...especially now that the weather is nice, i'm not even cleaning my closets anymore!

it's supposed to rain this wkend, but i've been reading "Freeing Your Child from Anxiety" and feel that i've let jo's avoidance go on for too long, so i WANT to take her on the subway. somewhere/anywhere.

Wednesday, April 19, 2006

SPONSOR MY TEAM FOR REVLON RUN/WALK!!!

OR JOIN MY TEAM!
GO MOMMY GO!
that's the name of it
here's the link
my bib # is 13099
if you want to join the team, you go to the home page and register, then put my team # in... it costs $25 to register.

i did this race back when i trained for the marathon and it is so crowded that you HAVE to walk, unless you're really pushy and try to get up front.

there are prizes based on how much money you raise (like a free plane ticket) but the real prize is, well, you know - ME!

if you don't like walking or waking up early (gotta be there around 8 i think) then just give me your money! this breast cancer thing is getting ridiculous.

and GO GET A MAMMO if you haven't had one in the past year. and even if you had a mammo, do monthly self exams (i would have found my lump much earlier if i had bothered to do them)
here's a thorough explanation - watch it
http://www.komen.org/bse/

Monday, April 17, 2006

brave new body

i did it.
i made a date with my new boob.
may 11th is D-day - well, more like B-day

i cannot convince myself that silicone will not leach into my bloodstream and eliminate the brain cells that have all the lyrics to my favorite 70s songs memorized. therefore, i am getting the fake-looking, fake-feeling, sloshy saline implant. sounds attractive, no? i tell everyone it's fake anyhow for christ's sake.

i thought, since they're cutting me open again, why not have 'em remove a few ribs and a couple inches of beef?
now THAT'S what i call an hourglass figure!

Tuesday, April 11, 2006

tamox

DAMN! this makes the 3rd day in a row i screwed up and didn't take my tamoxifen!
i dropped it off sunday, then forgot it
today i went to get it and it wasn't filled - involved calling the dreaded DIONNE at dr. bromberg's office.

got home too late from beth's house tonite to pick it up. SHIT!

this, in addition to running out of my folate/folic acid supplements AND drinking a few glasses of wine each of the past few nites, makes me feel that i am a fertile petri dish -- setting the scene for rabid new cancer cells.

i think the info overload is getting to me

PUMA plays with monkeys!

it's really slow but the puma site has some amazing kicks:

mongolian shoe bbq
awesome alexander mcqueen freak sneaks
a goofy philippe starck character the kids can toss around
and a printable monkey mask!

ENJOY SHOPPING!

Monday, April 10, 2006

re-construction and genetics

just to make my monday REALLY exciting, i scheduled back to back appts w/the plastic surgeon, then the genetics folks at msk.
actually, if the PS weren't 2 hrs behind schedule it would've been leisurely.
here's what he said:

too little fat to do the DIEP flap operation (fat tissue from stomach cut away using microsurgery - moved to boob) but he COULD do an old school style pedicle TRAM - an operation he doesn't really do anymore. however, in my case he would use the muscle to build the breast. then add an implant.
FORGET IT
the point of one of those autologous operations is that you wouldn't NEED an implant.
but the nice man was thinking of a way to rid me of my unsightly elephant abdominal skin AND give me a new boob. all for one low, low price.

i have to admit, it is very tempting to get the washboard ab that mother nature has denied me for well-nigh my entire life, but my attitude about myself and elective plastic surgery has always been: if i fix something, the next day i'll get run over by a crosstown bus. could be my catholic guilt acting up. and reconstruction IS elective. i don't feel the world owes me a new knocker just because i had a defective one. people who have lungs or arms or other parts removed don't always get a new one...this is a bonus. and with it come some minuses.

so, i could do a saline implant : problem here is that they're not offered in as many flavors as the silicone sisters. he'd have to compromise on shape/projection - meaning old style wide, high, and probably too full. then, the other side would be way off kilter so he'd tighten that up which would shrink it a bit (fine), but in the end, they might still be uneven and i'd need a little implant on the good side to even em out.
DAMN!
i wasn't clear if that would definitely occur/if it would happen in 2 operations, etc.

silicone - of course, this is every PS's choice! they love it. the new gummy, cohesive gel implants have not even been around a year, i think. they have many difft types based on 2 criteria - volume, projection, height - w/out going into detail, it would be a better match and i wouldn't need a fixer upper implant on right side - just the mastopexy or breast "lift"
safety? his argument is that heart valves and knee joints and lots of other med devices are made of silicone - and they actually have to work whereas an implant just hangs there.
meanwhile, i've been reading the studies on the manufacturers' own website and that does not inspire confidence at all! something like a 30% approx rate of replacement or rupture in 5 yrs? there's a lot of maintneance on these. not to mention, what does having silicone leached into yr system do to you 20 yrs later? how do you even notice a small leak?
lots of questions, i know.
i just can not rest easy. how can i be sure the silicones are totally safe altho tons of people get em? i mean, the drs handing out thalidomide also thought they were "doing no harm". it's not like drs and the scientific community never make mistakes.

ok, i'm falling asleep as i type. no offense to anyone - i'm just paranoid about these things (remember, i cried in high school after i got my ears pierced.)

OH WAIT! i had such an insane dream last nite- i was being chased...some bounty hunter woman wanted to capture me and bring me to this leader. i tried to injure myself to get out of it, splashing acid on me.
i told a friend to throw a rock at my boob so that it would deflate.

there was a giant ship out at sea. it was filled with 17,000 pounds of lasagna!!!!!!!!!!
get it? the lasagna (brought to the recovering patient), inflicting injury on myself (elective surgery), being brought to the leader (who was black like my plastic surgeon), etecetc
eyes are really shutting.,..........

Saturday, April 08, 2006

vegetables and surgical procedures don't mix

i don't like to eat lunch
the meal annoys me
i wish i could just take a pill - like in willy wonka or star trek - and just be done w/it.
i DO enjoying going out to lunch, where i am served something that i am way too lazy to make
so some days it gets pretty late by the time i figure out the lunch thing

last week i ate lunch at 4 at Poochie's - such an unfortunate name (but perfect for someone with a stomach like mine) for the health food joint that's been there forever on 6th betwn 14 and 15. i was reading a book by a boston BC survivor/doctor...Living through BC.
previous to my hiatus in LA, i'd had a stomach of steel when it came to reading about the details of reconstruction surgery. i had to close the book though just to get down my steamed cabbage, broccoli and carrots.

similarly, i just googled "pedicle tram problems" and read some horror stories about this operation going awry. no matter how saggy my gut is, i don't think this is the way to go.
ok, at least i crossed that one off the list.
maybe if i gain weight some day i'll do it.
or if i have an extra $4500 (and change my thinking about "vanity surgery") i'll get a tummy tuck.

[and, yes, i know that all surgery has its complications and that i will find some tortured soul blogging about the agony of a split end if i look hard enough]

Friday, April 07, 2006

so little time...

chatting takes up a lot of time, yet is so vital to our lives
this is how the 5th grade documentary reel in my head runs...the above line is spoken by a man w/a deep, buttoned down voice.

and the film is playing merely to introduce the fact that i am woefully behind in recording many factoids of my recent and continued existence! yet i am rich in conversations - been catching up w/the nyc crowd, school/camp issues, doing post-vacation laundry. but wait, i'll try to backtrack and add some scintillating details:

we return to NYC sat nite, April 1 - as in "Ha Ha, you DON'T have a view of the ocean, a lemon tree in your yard (or even a cactus) or even a yard! APRIL FOOL, sucker"

Sunday the 2nd is a beautiful springy day in NYC, but all i can think is 'big fat f(*^ing deal! now the sun is shining on the concrete and soot! and there is like one flowering tree around - how delightful. we go to washington square park, where my days of actually enjoying myself ended about 5 yrs ago. i decide to go pick up some groceries for dinner at Trader Joe's. little did i know that while i was away, the denizens of NYC became even MORE INSANE than ever, quietly colluding to actually line up outside the store. i turn around in disgust and go buy a few things in Whole Foods (Whole Paycheck, as my pal, Michael Shelley calls it).
Please tell me none of you lined up for TJs? i can't handle the idea of begging to be let into a store to buy groceries. that's just too depressing, when i had just been at the Santa Monica famrer's market a few days earlier buying artichokes as big as my head and sampling 4 different kinds of dates from the date farmer dude and buying dried persimmons and jujubes, etc.
and i finally got in a ruainy tuesday am. by the end i was getting a bit impatient but i had such sweet help - the bagger guy asked where i was from.
"Um, Long Island" i say
"Oh, I thought you were from Israel or something because of your scarf"
nope - nothing exotic - just a little chemo-induced head accessorizing!

Tuesday, March 28, 2006

LA LA LAND

having such a fab time in LA that i couldn't sit my butt down to blog
some highlites thus far:

we arrive after 6 hrs of blissful TV watching (thank you Jet Blue) at the cutest little fisher price airport - Long Beach
we walk onto the runway, the sun is shining and THE BAGGAGE CAROUSEL IS OUTSIDE!!!
i just can't get over that
plus, the rental car place was ACROSS THE PALM-LINED STREET - just a few feet past the Koffee Kona shack and the birds of paradise!

ok, that alone was enough for me to come out here - remember, you seasoned, jaded travellers, that i have been in an endless loop of 13th st to E. 64th for the past 6mths.

[speaking of which - all my eyebrows over my right eye came out last nite - well, i was sort of pulling on them to test my theory that all the old hair folicles are really dead and that they're just sort of hanging on. oops - i was correct! no eyelashes left at all. however, my head is a fuzzy peach. sort of looks like the scary flesh of a baby mammal - kind of sweet, kind of grotesque. jo makes sure i wear my scarf all the time]

so we drive to Pacific Palisades and have a blissful reunion with Violet, Willow, Kirsten and Ed in their yard with lemon, orange and apricot trees. from our bedroom and the living room, you can see the ocean just down the bluff a few blocks away. amazing. the yards in the neighborhood are full of rononculus, poppies, all sorts of interesting cacti and succulents, citrus trees dripping w/fruit ready to eat, and all sorts of other flora etc. that i can't name.
i am in complete and utter heaven at the farmer's mkt in downtown Pac Pal. berries and citrus and tamales and babaganoush and stuffed grape leaves and fresh pomegranate juice and white honey and baby asparagus...a cornucopia in the land of milk and honey

and that was all the first day-

• sunday - la brea tar pits (the hill is great for the kids to roll down) then meet kate, cort and bill at the farmer's mkt - another happy reunion but with jet-lagged kids. the girls get their beloved Crocs (bright rubber shoes) at the Grove mall there.
• monday - take willow to her little dolphins by the sea, her preschool amongst the eucalyptus in a woods nearby, watch her ballet recital, go to santa monica pier - (too cold and overcast to really enjoy that). jo hates santa monica as she sees homeless people there...
• tuesday - amazing time running around the getty, dinner w/lorraine, john and anna and coyne-saxons in w.hollywood
• wednesday - go to Paradise Cove in Malibu and explore the tidal pools, kirst and i go to abbott kinney and find some bargains at Heist and some other little shops
• thursday - went to Eames house just down the hill from here (met the daughter and grandaughter of the late/greats - reminded me a lot of bev - so sweet and grateful that we visited the shrine of modern design!) and then to the neighborhood beach. a few kids are in bikinis sunbathing but otherwise just a handful of people hanging out in the sun
• friday - drive to desert hills mall, buy too many excellent bargains, drink the most delicious date shake from Hadleys Fruit Orchard (sounds weird but is the best thing ever), drive to 29 Palms Inn, arrive in time for dinner. i was miffed at first that they messed up our reservation and gave away our cute little cottages - we stayed in the owner's guest house a block away so it wasn't as easy to let the kids run off. but the good news was that it was FREE! they didn't charge us at all for rooms! the prada jacket is paid for! there is a god.
• saturday - kids go swimming in freezing pool while we drink coffee and eat fresh date bread in lounge chairs. climb amazing rock formations in Joshua Tree Nat Park - i take a little jog from one site to another to shake off some funky mood i developed from friday nite (post-shopping trauma combined w/kiddie freak out).
• sunday - more hanging out, then off to Palm Springs to Indian Canyons which was so incredibly beautiful. a waterfall carved into a huge rock, an oasis stream and palm trees in the bottom of canyon. from wandering barefoot in stream in tshirts, we take the aerial tram up to the top of mountain where people are sledding and snowboarding. insane! couldn't play long as it was getting dark and it was COLD. crazy combo of climates all in one day.
• monday - go to hamburger joint in Santa Monica to ck it out for a rockwell project, then explore Venice canals a bit - very cool. climb trees and practice cartwheels in afternoon at park. dinner at the house.

kids are having a blissful time. jo loves this little village - violet's school is 3 blocks away, there's a little center w/kids' clothing stores and ice cream...i could just hang out here and be happy taking walks or going to nearby beaches, parks...
but today it's raining in earnest - kirsten and i are going to Third St to shop and meet Kate and Bill. unfortunately, i've already blown a wad at the outlets so i'll have to curtail spending...

kisses from the coast

Thursday, March 09, 2006

high anXIETY

does this title ring a bell, mel brooks fans?

went to the support group today w/two other BC friends, meredith and natalie - we were the larry, curly and moe of bald pates.
one of the main topics was the crippling anxiety that sets in post-treatment.
this isn't just neurotic, too much time on yr hands worry- as per my usual.
it's 'I just finished chemo -yippee! and oh SHIT!'

the feeling translates as "the drs have stopped poisoning me w/chemo/radiation, etc. and now i am a living, breathing breeding ground for evil errant cancer cells hell bent on my ulitmate destruction." ok, perhaps that's a little dramatic but didn't it sound kind of cool?

apparently, there had been a woman in the group who went thru treatment like many of us - then 4 yrs later, had a backache that turned out to be cancer in her bones. ugh. not what you want to hear. i think she got transferred to the metastatic support group...

another thing that people said was that it was isolating when their friends didn't understand the lacklusterness of ending chemo. (not that any of you have treated me this way). but this is a really hard mindset to grasp unless you've walked the post-treatment walk.