Saturday, October 29, 2005

MSK onco

so i met dr. jacquie bromberg for literally 5 minutes and liked her again.
will do some compulsory tests next wk - heart scan, pregnancy test (as if), blood work and SAT's (joking) - then start chemo either the 4th or 7th
she only sees patients on fridays so if that schedule is not good and i feel too sick over the wkends, i can see larry norton on mondays (he's a big shot there - "maybe i've seen him on TV?")
i'd also have to give MYSELF A SHOT [of neupagen/neulastin] on saturdays if i see her on fridays. i don't see that happening. volunteers?

the chemo area is pretty decent - has an atrium, you can shut the door to your little room or open it, watch tv, etc.
the pervasive smell of really bad coffee has me a tad worried tho as that was a major nauseating factor when i was pregnant.

chemo lasts 4 mths
4 treatments of adriamycian/cytoxan [these are the baldy drugs] every 2 wks - takes an hour ea. time
4 treatments of taxol every 2 wks - iv takes 3 hrs

forgot to ask about getting a port or not.
there are other details i'll discuss w/her next wk like steroids, anti-emetics, etc.

it was funny going to meet her. i starting thinking about all these good signs i'd had recently (whatever works, you know) like that a white feather floated out of the sky right to me the other day (even tho it was probably from a dirty old pigeon), that a little white fluff like dandelion down floated up to me on the 3rd floor outside louisa's classroom yesterday, that i passed some pipes on a bldg that had a tiny little plaque that said SV right at eye level...
then i thought about how a bus on first ave. had nearly just clocked me w/it's side mirrors while i was waiting on the sidewalk for the light to change.sigh

i got to the famous MSK Evelyn Lauder bldg at the address the dr. gave me - but it's called the Bristol bldg so i pass it at first, then the doorman has never heard of bromberg and she's not on the directory [she mostly does BC research], but another mentally-handicapped doorman knows she works w/norton, so they send me downstairs to a reception desk where the woman doesn't seem to know dr. bromberg and i am not in the computer (which is about to shut down in 5 minutes and is causing panic among the staff), so she sends me to another desk and receptionist who knows bromberg but i still don't exist...
anyway, i get in as you've already read.

Tuesday, October 25, 2005

ketchup

i'm trying to catch y'all up with all that happened last week.

dr. swistel said that overall, the pathology was favorable.
[her2 negative - herceptin does not apply to me (in case you were wondering)
estrogen and progesterone positive
2 positive lymph nodes besides sentinel node]
doesn't think i'll need radiation

re: how i'm feeling
i'll summarize by saying, the most reliable antidote to pain is ....surprise - shopping!
that's what kirsten and i did on friday after PT (physical therapy).
we kept looking at items in barneys and saying, "hmmm, this pretty sweater... or a consultation w/an oncologist? i can't decide which i need more!"
this, after i found out the recommended onco's consultation fee was $400-$700.
turned out the dr's fee was ONLY $600 (no insurance, thank you very much) but his new assistant charged me...
ONE THOUSAND DOLLARS. to talk. and to ck my boob or lack thereof.
that said, i thought the guy was really great - bernard kruger. especially after he called me up (himself) to say that i was overcharged. what a bargain!. no, really, he was a doll. but his office was a rabbit warren of cubbyholes - i thought i saw a very pregnant woman with an IV in one of the cramped corners. not such a nice spot for chemo i thought. plus, that little detail of no insurance. lovely man, though.

made a bunch more appts today w/other oncos, but not for another wk or two.
then i spoke to dr. at sloan kettering - thru a friend's connection - and she can squeeze me in friday for a consult and friday the 4th for my first chemo.

gulp.

AC +T (rec. by both drs.) every two wks (T follows the AC) then tamoxifen or something like it for 5 yrs...etc.
there are more details to this but if you understand and want to know more, you can ask me.
and yes, i will be bald. or wigged. bewigged. or wiggy. wigged out.

time to rest my corpuscles.

Wednesday, October 19, 2005

reach, really really far, to recovery (wed/th report)

my volunteer called last wed nite from reach to recovery - when i started writing this.
very sweet but not what i was hoping for.
52 - didn't have the reconstruction i want (had implant and problems with implant) - doesn't live in ny (no hospital/drs in common). overall did not inspire much confidence. maybe i didn't ask enough questions. anyway...

thursday
had my 2nd wk ckup w/PS (plastic surgeon) nurse, Pam. told her i wanted a break from everything - no saline fill up please (this is where they pump saline into the tissue expander in my chest. it stretches out the skin so that one day i can have recon done w/my own tissue (aka, fat). But since my drain was still draining out too much liquid - the deal was no saline, keep the drain. So I chose what I thought was the lesser of the 2 evils.
The saline fill up didn't hurt going in and the drain didn't hurt coming out.
But for nearly 48 hrs i felt like someone had beat me up - in just one specific area.
I will continue to enjoy this sensation every thursday for several wks as they stretch the muscle in my chest.
Otherwise, i feel pretty ok - sometimes i look in the mirror in a moment when i forget my current state and get a shock. but it is less shocking each time.

i am constantly trying to fend off nagging doubt - should i's and what if's
like that i feel bionic and totally unnatural and people should not have plastic crap stuck inside their bodies (did i already tell the story of 7th grade when i got my ears pierced and cried for hours because i felt like i'd done something wrong to my body? got over that way before my ted muehling phase)
and if i'd only done the mastectomy i'd be pretty much healed and not in pain by now and wouldn't have to do other crap the same time i'll be getting chemo
and i had a friend who lost an arm to cancer and he didn't use a prosthetic so why do i have to rebuild a useless boob when all my friends know it was cut off - why do i have to be symmetrical and pretend?
of course, the flip side is i don't think i'm ready to lead some one-boob brigade -- it's one thing in the winter for me not to put in some falsey but tank tops in the summer?
the middle ground would be no recon - special bras with a little pocket and insert. now this is sounding so sensible that i am lamenting what i've done. but i have this thing in and it can't come out now. and i can't convince myself that i definitely don't want the recon/tummy tuck operation later. there is something to be said for coming out of this and looking virtually unscathed. so i'll try to push all worries aside and continue to inflate. just in case. i can always get rid of it all in the end.

maltese falcon

i'm enjoying google blog search - reading about BC in Malta and other places that were not mentioned in humphrey bogart movies. http://maltagirl.typepad.com/diverse_ramblings/2005/10/october_breast_.html

i agree with HEY I'M COUNTRY (http://journals.aol.com/trickeytricky/CountryMyKindaLivin/)
"You can take the girl out of the Honky Tonk, but you can't take the Honky Tonk outta the girl!"
that you should click already on the free mamograms.
I also agree with her that she should "Introduce [myself] to the grocery checkout clerk and start calling her by name"

but then there are the sites that tell you SHOULD BE DOING. and they are a bit alarming.
like that chemicals found in common household cleaning products are carcinogenic [and dry cleaning and probably our furniture, carpeting, etc. which we all sort of know but don't want to know] hence, the state of my estate.

ugh, should not be reading this stuff. need to call more oncos tomorrow and find out what exactly those path results mean in english - and maltese.

pathology

here's what my surgeon just sent:

path is fine as far as i am concerned....
there were 2 more [lymph] nodes [positive, in addition to the sentinel which we knew about], but all of the upper ones were clean...
as expected there was more areas of tumor in your breast which of course makes the concept of removing all that bad stuff a smart idea....all of it is clean and i do not anticipate any need for radiation...
you do need to see an oncologist and please call for names...
hope you are recovering well...
your dr. s.

i'll explain this more later, but right now i'm getting on the phone. not bad news is what i'd call it.

sv

this one's for deb

here is the crazy thing about all of this:
that all this great, funny stuff happens in spite of/because of the cancer thing. [i already have a hard time saying "i have cancer" because i figure that since the operation, i don't]
like the day after i got home from the hospital two of my sisters were here to take care of me, along with tucker, and my sister-in-law had the girls so we made popcorn and ate Jacques Torres chocolate while watching 'the eternal sunshine of the spotless mind' IN THE MIDDLE OF THE DAY! i was like, "whoa! this is worth a unilateral mastectomy!"
sorry, really, it was very memorable

Tuesday, October 18, 2005

in case you're feeling sorry...

i was just sitting here in my pjs eating some incredible handmade chocolates and worrying that i would get my new little white G4 ibook all messy! y-me?

another great name

i already trashed the Y-me.org but ONLY for its name - not because they are not an excellent organization.
it just makes em sound like whiny babies.

but how about this one? www.menagainstbreastcancer.org?
somehow it implies there is a rival organization "men FOR breast cancer" and that they get together for softball games or ultimate frisbee and kick butt. wonder what the cheerleaders look like. [no, no, i will not sink THAT low.]

Monday, October 17, 2005

y-not me?

i really didn't want to ck out this site because i think the name is offensive
http://www.y-me.org//coping/supporting_loved_one/guidance_family_friends.php
but maybe this link would be useful to friends/family -
not that you aren't all doing a FABULOUS job already. really. thank you thank you thank you.
and for those who have seen "the effect of gamma rays on man-in-the-moon marigolds,"
"my heart is full"
or whatever it was the joanne woodward slurred (i think i was 11 when i saw that)

anyway, y-the hell NOT me? y-not anyone? y-not wynonna judd (name of a judd's song)?
y couldn't you be in my shoes right now (well, besides the fact that i'm not wearing any shoes at the moment, but that's irrelevant) and vice versa (i mean, if i like them and all - you know, all those yrs of sigerson morrison do change a girl)
if tsunamis and hurricanes and earthquakes and mudslides and lightning and 5 million other horrific, random events (i don't think i need to list em all) can happen to "those people" why not me/us/you/i? just stands to reason. ain't no brave thang.
i am a big baby who wants attention which is why people write blogs i think (but they are too shy -or sensible - to become thespians) only now the BC has caused me to throw caution to the wind. well, i actually was a karaoke enthusiast before this happened so i actually have no excuse.

so the y-not me has a 24 hr hotline for patients and family and a write-in-yr question section. useful.

oh, if i hear that phrase, "pity party" again i'm gonna puke. chemo or no chemo.

Saturday, October 15, 2005

holla back y'all revisited

i just read this and looked at kids and tucks schedule
too crazy
i think i have to slow down the socializing a bit or else i'll never have time to read all my research materials.
plus, i wake up at 5 every day and have trouble getting back to sleep
xo

did i mention my first outing was on wed. in the rainy wind with the lovely eva and my sister susan?
the main mission was to buy a giant soccer mom-ish calendar (but it's not dry erase so that's ok, right) to keep track of my family's new busy social schedule.
unfortuately, i relied on my flimsy memory and forget who is stopping by this coming wk.
if we have a plan, can you give me a call and make sure u don't hang up til i write it down?

mon 17 - open?
tues 18 - appt at 1pm then open
wed. 19 - booked
thurs 20 - booked all day
fri 21 - open?

many thanks

oh, and i just remembered another funny detail about pre-surgery - a nurse wrote YES in magic marker above my left breast so there was no room for OR error (you can't spell error without "or"). i took a photo but i don't think i'll be posting it to the site anytime.

NO ROOM IN DA FRIDGE

thanks all for the many delectable treats that have arrived at casa svboob and co.
my fridge runneth over.
really...
i can't fit anything else in there and tucker is going a little nuts with the bounty of leftovers.
pls fill out the fridge availability form at the bottom of this message to check space and delivery times.
ha ha - i mean, just send an email, ok?

i just noticed the dates have been wrong on my posts - whatever.

it's saturday am and i'm experiencing a not-unfamiliar 5 am wakeup anxiety thing. but now i really have something to worry about (compared to the rest of my so-called life). i mean, relatively speaking.

but first a wkly recap:
no pathology report yet -- holidays set them back. will post when i know.

had a ckup w/plastics on thursday in which bandages were removed (ouch! gasp! etc), drain was checked (do you really want to know about this?), and a schedule was established for tissue expander inflation.

translation: "Ya! Ve ar going to PUMP you up"

this part never appealed to me, to say the least. however, i thought that since i was advised against doing the reconstruction of my choice (in short, using my stomach to make a new boob) at the same time as the mastectomy, this seemed like a sensible option. i could save my skin (literally and figuratively) and do the recon after chemo and possibly radiation (the radiation would cook my new "big belly" boob into a hard shriveled mass - i imagine like those weird shrunken heads that i made w/a friend in 5th grade out of dehydrated apples).

the problem is that i HATE this implant thing!

i don't wanna go in every wk and get shot full of saline. i hate needles. i don't wanna do something cosmetic that hurts when i know i'll be doing something i REALLY need - chemo - in a few wks. that will not be so much fun either.
i'd rather have a lopsided frankenstein chest (pls, no disrespect meant to my sistas wit scars) that can just heal and be left alone for a while.
at least, that's how i feel at 6 am.
this may change - so no need to worry. i'm just complaining.
maybe it's also due to the fact that nurse Pam told me to go off the vicodin and onto 9 advil a day. just ain't the same.

[sorry if this is too much info for friends and family - if i'm upsetting anyone. it's therapeutic to write about it.]

but that reminds me of the news the other nite in Pakistan - all these wounded children in a tent w/no water, drugs, etc - screaming. now, THAT, is suffering. not that this is a contest or anything.

So, at the risk of seeming like some kind of martyr ("ooh, isn't she so selfless and brave,") or some kind of control freak ("just who the HELL does she think she is telling me where to put my hard earned dollars!") instead of sending flowers etc., maybe you could consider a weensy donation to a charity redcross or something that is helping out there or in guatemala or one of the many other hellholes on god's green earth.
or at least make sure you have some coins ready Oct. 31 for "trick-or-treat for UNICEF."

Monday, October 10, 2005

FAQs about SV's BOOB

dear friends and family,
many of you have shown an interest in the particulars of my treatment/recovery, so i thought i'd do a little FAQ section here:

Q. how are you feeling?
A. fine, thanks, and you?

Q. single or doppo?
A. left side only w/some lymph nodes. right side was 'clean.' aka, "no foam"

Q. how did surgery go?
A. well, most of the time i was asleep so i'm can't really say.

but first, i was awake. nurse bernice walks me down the silent 'corridor of death' (the charming name that other BC patients gave it) past other ORs. on the right is a lovely view of the East river. my eyes are streaming tears. she tells me it's ok to cry. jesus also wept. that god is mighty. that she was in the very same operating room w/a huge tumor yrs ago and she's still here. her faith is very reassuring - not alienating. this still surprises me (oh me of little _____)

then bernice knocks on the OR door, like we are there to borrow a cup of sugar. another nurse comes out and they joke about keeping us waiting out in the hall. ha ha. . then i'm invited in to meet the gang. this is so and so and so and so - i do not manage, "oh hi guys! how's it going?". i just keep crying and say hi. the new nurse tells me not to feed the so and so's. ha ha. i wonder if they don't notice i'm crying or if this is OR protocol for despondent patients - ignore and SMILE, SMILE, SMILE. like a vaudeville act. i meet 2 or 3 other masked avengers. one puts in my IV and says this is the only pain i'll feel.

dr. swistel comes in and tells me that he cracked up when he read my last email asking if he'd still respect me afterwards. i'm still crying tho.

Q. how did you find this?
A. don't really remember - just felt it myself when i was lying down - couldn't miss it. waited until one period passed by to see if it changed, then we went on vacation etc. so i'd say i waited about 2 mths after i'd felt it.

however, my advice is to go immediately upon feeling anything. why did i wait at all? denial i guess. not that the drs though it changed anything for me since this cancer grows fairly slowly. but why wait?

Q. how can i help?
A. a huge help to me is to NOT ask a lot of questions - you could read what i've written about my cancer, treatment, etc. and then go to www.breastcancer.org or www.acs.org. or even call their 800 #...
i have too many questions of my own to have to tell everyone all the upcoming details unless you are a dr. or a BC patient yourself, you dig?
also, you could write to tviemeister@redrockwell.com first for the lowdown on me, then once you've got your notes prepared, we can talk.

Q. do you enjoy emails?
A. yes, immensely so - way better then phone calls whether i'm ill or not.

Q. may we send cards and gifts to your children?
A. well, i guess so. i mean, something much smaller than what you'd send an actual patient, i suppose.
really - forego the flowers to me and send them something instead! a gift to them is a gift to me.

Q. don't you think you're kind of hung up the "gift" aspect of your situation? you mention it a lot.
A. no comment

Q. if you are so ill, what are you doing taking yoga?
A. that was a joke

Q. do you think it is appropriate to disseminate misleading/false information when people are concerned about you?
A. this interview is over

Sunday, October 09, 2005

OPERATION Radical Modified - a not-so Modest Proposal

operation radical modified is pronounced a modestly ratified success
-yes, i'm taking painkillers-
but it went well i am told - get the pathology results in about a wk. that determines the next step. the breast surgeon Swistel stopped by my hospital room for a social call (charming man that he is), but i don't actually HAVE to see him again for a year. we'll talk about the pathology results tho. that's it? he takes my breast and it's over? sheesh.

my follow up visits will be w/dr gayle, the plastic man. and then with an oncologist.

i go to Gayle on thursday. for the first saline booster shot. hopefully drain will come out then. inconveniently poking out of my armpit. sorry to be so graphic - but i figure you want all the gory details or you wouldn't be reading.

i'm walking around and talking on phone and, yes, blogging. it is strangely manageable and not so dramatic.
i took a "basic" yoga class instead of "advanced" today.

margot's friend, Liz, said you can get used to anything. i know this is the case about what is under the cotton, velcro-closure bra and gauzey lumps but i think i'll keep popping my denial pills a little bit longer. just a warning in case you want to visit - don't know when i will be up to showering.

keep writing here and checking those comments

HOW TO USE THE BLOG

for all of you blogging initiates, pls check on the comments in orange underneath my post - then you can see what everyone else is writing.
the advantage is that tucker or other family/friends may be updating y'all on the many fascinating details of my recovery (i.e., "she threw up twice last nite!" OR "she's taking a nap!")
if anyone knows how to get other people's comments to show up on the big screen, please enlighten me.
thanks for all the emails and calls and flowers and diamonds - oh, wait, none of you sent diamonds (yet)
xoox

Thursday, October 06, 2005

HOSPITAL INFO

just a few more hours left to be intact as the day i was born
can't exactly complain about keeping ole leftie as she has been aiding and abetting the enemy, but it is too damn bizarre to think i just go in and...sayonara. Dr. Swistel promised me he will play taps.

have to go to @5;45 AM! - operation is around 2-3 hrs i think.

i don't think i'll want many visitors at hospital since i'll only be there one night. just in case;

cornell - nypresbyterian
525 E. 68th St.
3 WEST [not a typo - the building is somehow called 3 west. i've never been so can't explain]
the Greenberg Pavillion

i dunno visiting hours or anything as i don't know where i'll be
Drs. Alexander Swistel and LLoyd Gayle

i'll be home Sat. nite or Sunday (if i beg and plead and promise my first born son)
then i've got my sisters scheduled for several days of care - evenings might be ok times for a few visits but i may also be warn out, so stay tuned.
also, i left a sheet so that those kind chefs among you can drop off food at difft. times [not so much room in fridge] - tuck will have to fill this in in order for it to work.

if you do visit, please pay more attention to Jo and Louisa than me (gifts for them will, of course, be most welcome - i'm sure they'd like to register) it'll be good for them and take some pressure off me!

i know that there is at least one person reading this.
can you pls post comments to site? thanks! tuck got me a new laptop so i'll have it closeby...

love on y'all - go get those colons and breasts checked out now!
xoxo

cancer circus

thanks to the lovely eva mcg for sending me the link for www.circusofcancer.org

i don't need any lance armstrong bracelets but some of the advice seems appropriate.

also, i'll try to set up a "caring bridge" website that would allow everyone to write in etc.
http://www.caringbridge.org/cb/buildPageStep0.do

the advantage of this site is that everyone can write in it - not just me - so you can all talk amongs yourselves.

Tuesday, October 04, 2005

BOOBLOG UPDATE

Stop the presses.
All plans have changed.
I have new doctors/new hospital/new operation on the horizon...

B-Day is this Friday. A day that will live in infamy.

Probably very early - will return home Saturday eve.

Switched to Dr. Alexander Swistel - dir. of Cornell Univ. Weill Breast Center / NY Presbyterian Hospital (the one east of York Ave.)
His office is under the Roosevelt Island tram and next to the Colonial Dames of America building! Plus some other revolutionary museum. Gotta bring Jo for a true "American Girl" experience.

The plastic surgeon has the fanciest shmanciest office ever. A gorgeous mansion a la Age of Innocence. The waiting area could be rented out for weddings. spiral marble staircase, etc. I thought he'd be an old waspy dude but he's youngish and too dark-complexioned to be rate waspy and has a 2 yr old. His sweet ole secretary, Doris, kissed him hello when i went for the appt sat. am (he had just gotten out of surgery). He's gotta be a good guy if his secretary gives him a peck on the cheek like she's his auntie.

I'll have a modified- yet radical- mastectomy (the medical community will no doubt fail to see the humor in this absurd title) w/tissue expanderimplant(if you really MUST know). This will allow for the many joys of chemo (a given) and the possibility of radiation (hope not). Then, if life gets dull and I'm itching for more surgery and home-baked lasagna and lovely cards that make me teary-eyed from friends and family, I can go under for the reconstruction.

I am a bit disappointed that I'll only be in hospital one night. That's just not substantial enough for the loss of a breast that fed two little infants. etc. etc.

I mean how can i REGISTER FOR GIFTS at a major department store or jewelry store or furniture store if I only have 24 hrs in hospital???

Life is so unfair. I mean, it's like the hurricane refugees in the Houston Astrodome and Barbara Bush -- those folks were enjoying the Texas hospitality!

So I wanna get to enjoy the CANCER hospitality. You know, people picking up my dry cleaning, peeling me grapes, popping bonbons into my mouth whilst fluffing up the pillows under me.