Monday, November 28, 2005

bald-headed woman

My father could not understand that 1970's BeeGees hit, "Bald-Headed Woman"
Why? he'd ask
Now I AM THAT WOMAN. More than a woman in fact.
as of last wed - the exact day the oncology nurse told me my hair would come out in clumps and to get ready (aka, shave it)
i've had 2 GI Jane comments...
Took the holiday away from email, in case anyone is wondering where i've been.
i'll fill in blog tomorrow. jo was home sickish today.

Sunday, November 20, 2005

2nd chemo down

and feelin' fine
i should be in bed now preparing for my evening of ROCK tomorrrow
Cathy does Cheap Trick followed by a Led Zep set - Arlene's Grocery - the magic starts at 9:30

i feel like a chemo cheat writing this. that i should return all gifts and well wishes. i am doing surprisingly ok. thus, i have more time on my hands than i thought, but yet not enough hours in the day still. could be that ear infection that cut into my schedule.

wait a minute. not so fast. i'm keeping the dog, Checkers.

i had a really crappy day on wed, remember when i was exhausted and reduced to tears several times due to idiots and insurance? and how bout this...
on friday i took half a vicodin cuz thursday was my LAST saline fill and it was so huge and grotesque and throbbing and i didn't think i should go into chemo in pain. it doesn't resemble anything human - kinda like amanda lepore.
then when i showed the doc she got freaked out (she also said GOOD GOD when she saw my valve for it 2 wks ago which was a weensy bit alarming but i have to remember that she's a researcher and doesn't see as many patients as the next oncologist).
she asked why i even have an expander when i'm getting a tramflap/DIEP which somehow i could not adequately explain, so she called a surgeon who said the expander was not necessary (you see where this is going, right?) so then she calls my PS office to ask Pam about it and SHE explains it of course, and says to send me over to leach out a bit o saline so i can be more comfy and less bulbous. this sets back the chemo time a bit. i finally go in a chemo room around 4 rather than 2:15 and as i am so accustomed to waiting for an hour everywhere i go (and beth is w/me and we're chatting) i end up waiting about an hour before finding out they totally forgot about me. we left at 5:30.

[did i mention that happened on Louisa's bday at the PS office too? that time, i even SAID HELLO to the receptionist, she waved Hi to me, i sat in the palatial waiting room of the renovated marble mansion - perhaps too far away - and she told Pam i had not shown up yet. When i asked how much longer the wait would be she said, "When did you get here?" RRARAAAAAAAARGH. i like her though. she was just tired that day. and not an idiot like SHE who shall not be named yet...

On Friday the onco and i had a conversation about Dionne - whom she referred to as a "bimbo" and a "booboo head" and said that she knows "zippo" about cancer (when i asked if she knew anything, etc). so i think it's time for a letter to her and the other top guy to take some action. other than the voodoo doll i've started, that is.

Many have asked so i'll give some chemo facts again:
it's an IV drip - takes an hour - every 2 wks on fridays.
the next day i go get a $4000 shot of white blood cell booster - causes some aches in major osso bucco areas like thighs, spine, sternum
the first 8 chemos are adriamyocian and cytoxan which make hair fall out
the second 8 chemos is taxol which takes 3 hrs to drip
the docs think i will sail thru nausea-wise but that the fatigue may be cumulative.
the social worker - who doesn't always say the most helpful things (see last entry) - said that if this part is easy, the taxol may be harder. THANK YOU VERY MUCH FOR RAINING ON MY PARADE.

my hair is due to start falling out right around thanksgiving. thus, in desperation, bought a 14th st wig today. the price was oh so right at 29.99 but i fear it kinda looks it. just tell me it looks ok. actually, don't bother.

On the Front Lines of Stella Mc at H&M

This is from my friend, Svenja, intrepid reporter braving the front lines of fashion...
Date: Thu, 10 Nov 2005 12:04:00 -0500
Subject: retail madness

So, on my way to the trendwatching seminar I am attending today, I figured I might as well live what I am about to be lectured about.
Today, as advertised everywhere (and worst of all, on daily candy-lines here I come) was the introduction of Stella McCartney's line at H&M. So, here I was, heading to the Harold Square store half an hour before the doors would open, of course there was already a line around the corner. Great people watching and listening in on conversations. Quite a few people were there with a similar intent as mine, just look and see what it's all about.

10am, the doors open. Women start running and pusing into the two
entrances.

Lesson 1: The merchandise was displayed up front.
Bring a friend or make friends or come really early to scope out what of the items are closer to what entrance.

Lesson 2: Upon entering, either step back and watch in awe or don't hesitate and start grabbing whatever you are close to,
multiples. Don't look or reason, just gather as much as possible. Again,for that it'd be good to be there with shopping partners to come in from all angles.

Lesson 3: After all those racks are empty and only then (2min after you entered the store), you find a group of people and start sorting through your things and offer bartering for what others don't want. Watch out for the 'I'll sell things I don't want on eBay crowd', no need to be close to them.

Lesson 4: If you didn't go in with a strategy, loiter around the cash registers, a lot of things are just thrown carelessly into the bins there, the last minute don't-want-it piles...

Lesson 5: Keep an eye on the sales people, they might have gathered some stuff and might put out some more accessories. Oh, and also just watch them,comrades in awe...

Lesson 6: If you do end up with some pieces, don't bather trying
them on, afterall you can always return them or sell them to your friends or sell them on eBay, go right to the top floor to the
cashiers and be friendly to people in line, they even take down your phone number, in case that coat is too big for their friend...

Lesson 7: Step outside and breathe in deeply, take
in what justhappen andwalk down the avenue briskly, swinging your Stella H&M bag: That's right, I was there, I did it!

So, in summary, I did end up with a few pieces.
Frankly, I'm not sure whether I really like them or whether they will actually fit. But hey, I couldn't help myself, got swept up by all the madness and desire... I wonder how many people feel the same...

One thing is for sure, it was worth the trip! A true immersion in NYC consumerism, 11 all the way!

Wednesday, November 16, 2005

ear/wigs

this has been the week of no sleep
lou developed an ear infection sun. nite. we've "slept" on the living room floor, watched one particular sesame street video 20 times (good tunes) -- and i'm feeling totally run down just in time for 2nd chemo tomorrow. [my chemo schedule will be every other friday]
yesterday, Heart and I went on a wig mission and came back hairless.
the first one i tried on at a very unglamorous joint on 31st was great but just way too itchy. if they can sew a lining into it i might be able to wear it for about 5 mintues without ripping it off my head and stomping on it. $250. it costs $5 to try on each wig in these kind of places.
next we went to a much bigger/more specialized office with a distinctly not warm and not fuzzy russian woman who would just go into some back stock room and pull out ugly wigs and stick em on my head and say that they looked good. the last one we troubled her for was the least hideous and only $595. the wig style name was Sarah.
insurance does not cover "head protheses" [what a surprise] but my flex plan does.
at least it was fun hanging out w/Heart.
Phys therapy was great as usual but the rest of the afternoon frustrated me to tears many times - no one at MSK seemed to have ever heard about getting a CBC [white blood cell count] before going to a plastic surgeon for a fill-up. i had to explain it to 5 people AND get Pam the PS nurse to call my dr's stupid asst to get any answers. When i called the ever-helpful Dionne and asked to have Dr. B call me back re: this matter, she told me "All's I can do is have the nurse call you back." I plot her death daily.
Can't MSK afford people who can speak English properly and perhaps tell you that they will TRY to help you instead of leaving you with the feeling that:
a. they have never heard of breast cancer before
b. you could rot in hell for all they care
i resolved it by going to get a prescription from pam, walking back to MSK and explaining myself 5 times (but first i went into the ladies room and nearly bumped into an older woman with a bad wig and a runny nose and a mouth covered in sores - that was the first time i burst into tears).
When i went to my first support group meeting (maybe my last?) last wk, i said that i don't really get upset about having this disease but that i get really angry about all the logistics/scheduling -- i.e., DIONNE. the social worker said, "oh, so you're the kinda person who goes home and kicks the dog." No, I just wanna kick Dionne - right off the staff. actually, i said the difference here is that there is a real reason for me getting mad. Dionne is not as smart as a dog.

Thursday, November 10, 2005

first

i've been waiting,
and waiting,
to write about the first round of chemo
because it just doesn't seem possible that i am feeling this fine
but i am.
no nausea to speak of
a bit of fatigue and bone achiness
just can't believe it
not that i'm expecting this every week, but it's been nice
nice?
i've just used the word "nice" while talking about chemotherapy
[it's nice to be nice to the nice, as frank burns once said.]

if you think i am being some kind of brave little trooper (or toaster), read this:
after my first chemo treatment on monday, tuck and i stopped in capezio to buy louisa some dance tights, then i went to tender buttons and bought a little wooden monkey as talisman to hang from a gold kilt pin. next i met friend for lunch at barney's, followed by shopping in the BG beauty basement for deluxe potions, unguents and balms. [have i mentioned the idea i have for another blog? it was GOING to be called "the nauseated shopper" - an index of everything purchased during BC treatment - but i think it will have to be the "nauseating shopper" because the support group gals will hate me for not puking!]

"the ladies who lunch" vs. "the ladies who LOSE their lunch"

Tuesday, November 08, 2005

knock knock knock on wood

like you know you should.
so far so good. feeling weird but ok. keeping very busy.
will fill in real story tomorrow but just wanted to thank you all from refraining to call the house at times when the kids are home and awake (i really don't want to talk about chemo stuff in front of them more than i have to)
also, the phone adds a weird dimension w/one-sided phone calls that cause anxiety etc. etc.
thanks

Saturday, November 05, 2005

the kids are all right

the girls are doing pretty well w/all this...
lou has a lot of meltdowns and jo has made it clear she never wants to see me bald or even talk about it.
i've forced them to listen to the talking points the social worker and a therapist gave us:

-this is no one's fault that i got cancer
-no one can catch it from me
-they can't get it now
-the medicines are really strong - chemo will make me exhausted but will make sure cancer doesn't come back
-

chemo starts monday

four mth treatment starts monday

finally got scheduled after spending the entire day friday at/around msk.
love the doc and nurses but wanted to kill the assistant after she sent me to the wrong place at main hospital THEN gave the receptionist there a hard time.
then a mean russian technician did my heart echo test - making me breathe, then hold breath 100 times. she got testy when i didn't catch on to what the hell she was trying to do or when i interrupted her by - excuse me - BREATHING. i wrote a complaint/suggestion on a post-it for the dept head to ck out.

when i left hospital, a guy was sitting on a bench in front w/an IV pole and some kind of drip goin in him. Chemo to go?
Guess that was the drive thru.

in addition to adriamycian and cytoxan for first 2 mths, i get steroids and anti-emetics (nausea) drugs in IV, plus some to take at home as well as attavan at night which is a tranquilizer that happens to have anti-nausea properties
next day i go back for a shot of neulastin which boosts white blood cells (cost=$3000+ per shot) - side effect of this med is that it makes your bones ache - hips, breastbone, thighs - where the bone marrow is (think osso bucco)

side effect of it all: hair loss in about 2 wks,
steroids can make u jittery and also gain weight
anti-nausea drugs can make u wanna eat (constantly) etc

tuck is going to first treatment w/me.

just in case you don't know what chemo is like - you sit in comfy recliners w/an IV drip (my dr. doesn't like to put in ports) and read magazines and chat w/whomever you bring along...I'm already starting to catch up on kate getting caught, and brad/angelina/jen/vince, and other important world news. don't ask me to name the justices of the supreme court tho.

perhaps this will be a good time to learn italian? oh no, then if i get sick, i'll equate speaking italian w/feeling like crap (or crappola)-- hmm, forse

shag me

my new do is florence henderson meets 70's phys ed teacher
people say it looks good (liars) or that it needs more gel (true, but it just isn't working)
might try to emulate a boy in lou's class next - very happening hair for a four yr old

Wednesday, November 02, 2005

qvetch-22

is it just me?
or does everyone get this bunion of a runaround at nyc hospitals?
after 4 more phone calls to msk today, i finally got an appt for 9 am fri at patient financial services (in my case, IMPATIENT financial lack of service) then i go get the heart scan - aka MUGA aka mugging- at the big MSK, then back to the breast ctr for blood work and an appt. w/the dr.
[i called the financial dept to double ck the asst's story and they said of course your tests can be scheduled!]
my dr's asst. said, "i've never scheduled it this way before so let's hope it works"
wtf?
what kind of f***ing system do they have?
who makes this shitty hospital software?
you can't spell miskommunication without MSK.

also in the news today:
* went to a meeting about jo and her anxiety at school at 8.15
* then to unemployment office on 54th at 9 for an orientation powerpoint (fascinating!) - actually,it was surprisingly nice there - plenty of newspaper want ads and computers for researching jobs.
* then spoke to insurance about how continuity of coverage includes covering the breast surgeon for 5 more visits but not the oncologist or PS - i explained this was very kind but as a breast cancer patient, i won't even see the surgeon until next yr. and that i need the coverage of the other 2 drs. -- they said they'll look into this for me (have they EVER insured someone w/ cancer before??!! hellooo, cancer calling!!)
* molly returned from india but has terrible jet lag so took day off to recover
* bought louisa some gifts for bday tomorrow
* had a phys therapy appt which made me late for pickup at school - but thought i'd arranged it w/school to cover lou and her friend. this of course, gets completely screwed up.
* i go ck on louisa
* i pick up jo at 3.45
* big LOU came to visit w/little charlie
*was late picking up little lou, who, it turns out, was waiting outside in dark and cold w/babysitter for me to pick her up.
* wrapped presents

not baking class cupcakes for first time ever. i'm buying this time. thank you whole foods.

Tuesday, November 01, 2005

MUGAs at Bergdorfs

just got a call from MSK
i can't schedule my tests until i'm registered
but i can't register until the day i see the doctor (friday)
but i can't start chemo until i have my tests
but i can't have my tests until i'm registered
which means that perhaps i will register friday, see the dr., get tested monday, then start chemo later in wk???
...
they just called back - i'll go early friday to register, try to sneak in the blood work, see the dr., and hopefully schedule my test for monday or tuesday, then do the *$&E#*# chemo.

the other choice was to shop around at other facilities to get the heart scan done. jesus.
not the kind of shopping i was thinking of. unless i can get a MUGA at bergdorfs?

goodbye 40

i am so glad that damned 40th yr is over (10/30/64).
family total = 2 diagnoses of cancer, 3 new jobs (excluding freelance), one death (tucker's mom).
it was a little too busy.
[no offense to those ex-employers/coworkers, but 9-5s cut into blogging and shopping time)

there were many good things that happened too, of course.
thanks friends and family for all the good times - you know who you are.

locker room

on my bday, i went to clay (thanks to my benefactress the fabulous ms.egan) and rode the bike whilst reading my chemo book.
that may sound grim but it was really nice - except that every once in a while i'd read something about mouth sores or muscle aches. and i was conscious of trying to hide the cover (not that anyone would ever strike up a conversation in that place). and then i got a lovely chilled herb-scented washcloth out of the little fridge but then wondered if they were actually for wiping off the equipment. fancy gym etiquette issues! (they were not). the other thing i had to hide was in the locker room. i wondered if i should take all my clothes into the shower w/me so as not to freak anyone out w/my scar. i opted for clumsily trying to keep the towel wrapped around me every second while getting dressed - kind of like little girls who hit that painfully modest stage.

i've gone to gyms for almost 20 yrs and never seen anyone w/any kind of breast scarring - where are they all hiding? in the shower?

signs

last wk i was seeing "GO SV" signs everywhere (see previous post)
yesterday i went w/my friend rie to get pedicures, but i decided against it because i'm too paranoid about getting an infection right now so i just sat and relaxed in the comfy massage chair, but then i worried that i was irradiating myself w/microwaves, and a little cockatiel in a cage whistled to us which i thought was very sweet until i made a mental note not to go back there as i might contract avian flu or some other bird-related respiratory ailment, then i noticed the sign above the bird - the salon is called BC! stands for Beauty Concepts -- or does it?

whew. it's so exhausting being paranoid.