fog comes in on little pig feet

that's how i feel when the chemo fog descends and again when it leaves. just realized hadn't blogged for awhile. this is just a check in ...will blog tomorrow! too tired to make sense now. going in for herceptin w/ kids tomorrow....

kismet

in my crazy rush to get all the chanukah / xmas shopping done i did have one of those ah-ha moments at the mall....as i walked (quickly) by gucci, i noticed their sale sign and made a quick detour into the store...and there they were.

before i tell you this little tale, i must confess that i am a shoe girl. handbags do nothing for me but a great shoe? wow. it's kind of orgasmic :).

so these boots i'd seen advertised in september in the ny times and at that time they were way out of my price range. i knew i'd have to one day own them but september got eaten up by cancer so i forgot to do my usual obsessing over the boot.....so when i walked into the store i made a bee line back to shoes....and there it was....waiting for ME.

when i asked to try them on, they apparently only had ONE boot there - but it was in my size. Danielle, the sales girl said she knew how to get the other one there and i said, giddyup. "please call me when they are in!".

I ran to the mall w/ syd on a mad xmas shopping trip before dinner with the girls....I had already justified it in my head as it had been marked down to just a little above my price point....it was now 60% off original price and that's as good as it's going to get..... AND THEY ONLY HAD 1 OF MY SIZE.

Kismet :)

When I joined our friends at amy's birthday dinner for Amy, all i could talk about were my boots. i kept saying (in a Carrie Bradshaw voice) "look at my boot" and i'd hold my leg up...."and they're GUCCI!"

I'm wearing them to chemo. bet tch never met gucci.

ciao bella!

flat tops

sam wanted to get in on the photo action so we decided to compare haircuts. then he put on my work out bandana ....

at this point, my hair has mostly all fallen out. now i kind of u'stand what men go through when they lose their hair - i'm pretty bald on the sides now, although the left side is balder than the right side and the top of my head has bald patches. i never thought i'd be one of those people who wore hats around the house but it's a little chilly w/out anything on and the wig i rip off the minute i get into the house. it makes your head itchy and a little sweaty.

my mom read this blog and wants me to write about my previous life meaning life before cancer so i guess that'll be my next entry. i first have to remember what my previous life was!

today i'm going to restorative yoga which i felt was really transformative so i'm excited. i love the ropes.

back to normal

i felt normal thursday and friday but woke up realizing that chanukah was friday. spent both days running around like a lunatic trying to gather gifts that were mostly thoughtful and relatively inexpensive.

i hate malls.

it must be from the many days spent as a buyer at macy's in the late '80s & early '90's visiting sotres and eating lunch at the depressing food courts. when i go to the mall i still get that anxious feeling of making sure i don't miss anything anywhere.

i tend to walk very fast looking in the stores and checking off mentally if i need anything from those stores, looking at their sale signs and deciding on the spot if it's worth a look see. beware the sales associate who stops me and asks if i need help. i neither want nor need help unless i ask for it. when i do ask for it, i want it right away....so not fun for them. oh well......i am a girl with a mission!

anway, we had chanukah last night and i think everyone was pleasantly surprised. ben, sam & i made enough latkes for the millenium, we sang our songs and opened gifts and even played a few rounds of dreidel. simple pleasures :)

i think i've now ordered enough stuff online to cover the days i don't have anything for them....i'm good with yankee peddler / secret santa and i think my credit card can take a break!!!!



afterwards h & i went to a neighborhood dinner at gigi & pauls and met the new people who just moved in. i'm getting used to wearing the wig now. i was going to go as a blonde but i figured since i didn't know them maybe i should just downplay the cancer part. drank this awesome spanish after dinner sweet wine. i think it gave me technicolor dreams that are still replaying in my head now:)



looking forward to today, tomorrow and next week where i should still feel "normal". happy holidays!!!!

rebounding effect

coming out of chemo week is like coming up for air when you've been down on the bottom of a pool holding your breath. everything around you still feels not quite focused and looks slightly out of focus. you're not quite sure if you're ready to be back on the dry land or if you should just hang out in the water waiting for a bit.

for me, i find i do everything more tentatively and slowly. all the normal things i might normally jump into i go in with my arms out - just in case i'm going to trip or fall. even getting dressed and putting on makeup feels like a huge effort. a girl i connected with through my oncologist who had gone through the same regimen i'm on had said that each chemo takes longer to come out of. she's so right. it's wed, 10 days after chemo, already...and i am just starting to feel like my old self. this time round i was hit with a lot of weeping and crying at the slightest provocation. weepy, annoyed, on edge and very very tired. so not like my normal peppy self....it was doubly upsetting to be like that.

so today i met with a doctor who kind of gave me the end of the tunnel date to think about....while we were talking about steps after chemo it was oddly encouraging to know that i will probably probably be back to regaining my life by summer. so nice to see that light beckoning at the end of the tunnel.

tired & weepy :(

no particular reason but feeling tired and weepy today. had a nice day, in fact. went to blue hill at stone barns and walked around w/ maeve & jackie. went to gym and did my bands/ arm weights and then came home and showered. feeling very bloated and crabby and tired. maybe it's time to hit the sofa and watch a mad men episode.

this round is actually better than last. i don't have the bone pain from the neulasta which was almost debilitating last time. just blah.

missing my hair :( chemo #2

it's almost like i can feel a phantom of my old long hair at times. i was sitting watching tv last night and it felt like there were long braids by the sides. weirdness. haven't really been wearing my wigs that much. even braved it w/out anything to momofuku ssam. figured the east village was a great place to look different.

chemo was y'day. waiting to see how all the effects are this time.....the day was pleasant, if you can beleive it. had howard, mom, wendy, thalia, tamar, toni and darci there (in and out in various times) for the day....pleasant and fun. i'm always so woozy i don't remember the conversation all that well but it was warm. lunch was great.

will report back later....

signing up - gi jane

FREAKY FRIDAY!!


I couldn't take the hair thing anymore. i'd had it cut even shorter for thanksgiving in the hopes that it would last but it was everywerhe. when i say everywhere, i mean it! Sitting with my sister, Laurie at breakfasts, she couldn't stop staring, "what are you looking at?" i asked, "it's like you have a hair collar on your robe." i glanced down and it was like i was becoming aslan or something.


Then I went to the gym and again, it was a total mess. i wore a bandana to keep it all in but when i took it off there was hair everywhere. crazy. it was on my computer, in the bathroom, in the shower all over. i couldn't take it anymore



Called in my girls, syd, amy and wendy and together w/ my sister lisa, we went to town. felt oh so much better!



here are the pics:

l

hair, hair everywhere

my hair is snowing all over the place. while i've kind of known it was going to happen i think i was in denial that it would happen...they always say there's always one person whose hair doesn't fall out. i think i was hoping that person would be me but the chemo is working i guess and it has destoyed all the quickly dividing cells, including my hair.

sitting at the breakfast table with my sister, laurie and when i got up, it looked like i had a hair collar on my bathrobe. it's all over my pillow, my bed and my bathroom. when i was showering it came out in sections.

to those of you who've never witnessed it, it's totally NOT like calista flockhart's hair coming out on "brothers & sisters", rather it's individual strands everywhere all over your head.

and when they say everywhere, they mean everywhere. quite distressing.

here's my last shot...i never realized i looked so much like ben before. the other shot is me and my sisters.

thanksgiving reflections

despite feeling like the xmas tree on charlie brown's xmas, i wanted to reflect on things i am thankful for.

I am thankful for feeling healthy and having a good enough energy level to enjoy my day of baking and prep w/ my sisters, heather, mom and rest of my family.

I am thankful that I am looking forward to thanksgiving today. it is my favorite holiday.

I am thankful for my "cancer mgment" team - "directed by" syd, wendy, amy, toni, marilyn, supported by zita, marla, beth, kathy, jeanne, naja, coco, jackie, darci, gigi, maeve, barbara, michele, thalia, karen, amy f., sarah, jane & stacie...shit am i forgetting anyone??? you know who you are. (only women in this one acknowledgement.)

everyone who is pitching in to help me get better. the support is unbelievable - the meals & rides are godsends.

I am thankful I like my oncologist & her staff - they make it as pleasant as it's going to be.

I am thankful for my surgeon.

I am thankful that howard is going to the hockey tournament this weekend - go mariners go:).

I am thankful for the outpouring of support at HAS. Chris, Jennifer, Billie, Chiara - you guys rock and Sam is feeling loved and secure.

I am thankful my kids seem to be managing and doing ok.

I am thankful for the many random acts of kindness that have been bestowed on me.

I am thankful my husband has been a rock. He has a lot to put up with.

I am thankful that wine still tastes good.

I am thankful for my siblings & their spouses / partners and for their support.

I am thankful for my parents' support. Just no driving in the city for my mom, please :).

I am thankful for my cousin's support too - will miss you guys today.

I am thankful for packages from california!

I am thankful that madmen season 1 so far has been so good. very entertaining.

I am thankful for my new "cancer girls". nice to not be the only one going through this.

I am thankful for the many men in my life who are as supportive as the women. guys you know who you are :).

I am thankful for long walks in good weather.

I am thankful for people like jeff allen & ben park who keep tabs on me.

I am thankful for my btln group of friends. may we continue our fine traditions of bltn & solstice

I am thankful for my soccer girls. go strikers go!!!

Most of all I am thankful that next year I will have closed this chapter of my life and will still be hosting this day.

happy thanksgiving!!!

short short

in my haste to avoid tons of hair falling out all over the place, i decided to channel halle berry and get my hair cut shorter still. i think it helps me, in part, deny the inevitable fall out...while i'm not sold on this look either, this morning i found hair on my pillow, on the towel i used to dry my hair and i know it's better coming out like this as opposed to in longer strands everywhere for me.

.i got this note from a friend who ended her chemo about a month ago. i thought really helped describe the emotional and mental angst women go through with the whole hair thing....

"Unfortunately, the one visible sign of cancer is being bald. When it came time to shave my head I was ready and believe it or not did not cry. I felt it was the one thing I was able to do on my terms. Again, I brought a friend with me and we had lunch "before". The week before I had brought my children to the salon to see the wig so there were no surprises. They were excited because the wig was longer than my natural hair and they thought it was glamorous.

I know that loosing your hair is a very emotional thing, however I think eventually you move on to getting through your treatments and looking towards recovery. I heard this from others and read it in books, and at the time it seemed so scary and unbelievable that this was happening to me. Again the treatment process is so personal, and unfortunately it is a process we all must go through.

Now it is like...what just happened? Everyday I feel stronger and am looking forward to getting back to my normal routines. I look at this "cancer thing" as a "huge" inconvenience. I am so thankful that it was caught early and that I will have many years ahead with my family and friends, as will you. After all of this is over we will have to go out and celebrate!!"

i am looking forward to being done with this inconvenience.

hair

just woke up and ran my hand through my hair and had hair come out on contact.

it's starting. this will be so hard and weird and i guess in the long run almost a relief that the waiting is over. i knew last week was kind of a fluke - i really felt almost lilke my old self minus the mane of hair but still with a cute kind of look. not sure i'm going to feel that way about no hair.

so hair...seems crazy to place so much of my identity in something i was born with. i've had long, crazy ringlets for the past 20 years. it was short right after college in those days when i used to go down to astor place and have the guy cut one side shorter than the others. kind of a strange cut on a curly-haired girl but i was in my "changing it up" mode. i cut it my senior year of college after my boyfriend dumped me. not sure why. anyway...i had hinted that i had a lot to say about hair and now that it's coming out. well. i better type fast.

my long hair has always conveyed an attitude of rasta - ness i think. people often assume i will act a certain way given my hair and it's always amused me the random boys / men it attracted in a bar situation. not always the cream of the crop, i might say, but that could have more to do with the setting than anything else.

cutting it a few weeks ago was ok. i felt good about giving it away and turning this mess into something positive. while it looked great straight, it looked like something between princess leila from star wars and macy gray curly. i ran back to brenda at hair and beyone who, for the record, has been amazing. (thanks brenda!!!) she cut into it and i'm not sure what i thought it would end up looking like but it looked better.

i liked my wig better than my hair short, to be honest but it's a look.

next up...angels of ny.

sunday, bloody sunday

woke up last night at 2 am and had a horrible bloody nose. this is my 6th bloody nose since starting chemo. this one was bad...took almost an hour to stop. finally remembered this trick i'd seen on "sex in the city", where robert, miranda's dr. boyfriend (he was the dr. for the ny knicks) stuck tampons up steve's nose.

honestly, it did the trick with a bag of ice on my head.

"sex in the city" is to me what sports are to my husband. can watch them over and over. at least this one turned out to have some useful information!

going to see ent tomorrow.

week of euphoria

i haven't been blogging this week. i feel like i got this huge gift/reprieve this week by feeling so good and i wanted to suck it up as much as i could. since i didn't know how i'd feel, i had a lot of free time. spent the week eating and working out.

monday i did herceptin and while it's not a pleasure to get, i felt fine plus it only takes 45 minutes! (chemo takes 4 hours). my oncologist wanted me to eat more whole fat food so my friend maeve and i took ourselves to artisanal and i stuffed my face with fromage. even had a 1/2 glass of wine - oh so yummy and good :).

still feeling good, after i got my wig fit on wednesday (which is another posting on it's own) i met my friend michael and we had lunch at accademia di vino and then went to tim burton's opening at MOMA. another great meal with michael, as always :). the exhibit is great - very whimsical and kind of seussian. i hadn't realized tim burton had so much art and how much he has drawn and created. funny that there was very little mention of pee wee herman. (i wonder why???? ))

friday night howard & i went out with amy & paul to tarry lodge. again, i ate my favorite foods - LOVE their bolognese & broccoli rabe pasta and it was great to sit at the bar and feel like a normal person. saturday night went to morgan's with my beloved tufts friends, toni & seth, paul & pam. again, felt like a normal person.

today (sunday) i feel like i'm on borrowed time. i was told my hair could fall out as early as day 10. there's this creepy feeling you get - almost like someone is softly blowing on the back of your neck - and i don't know if that means the hair follicles are getting ready to release the hair.....i'm now on day 13 since chemo.... but hair deserves it's own posting....i definitely had some hair issues this week.

wanted to acknowledge my good week before i'm faced with the traumatic event of my hair falling out. signing off for now....am going to try to post the hair one tonight also. don't know how i'm going to feel when it all goes.

survived first chemo treatment

am relieved to say i survived the first week of chemo. now at least i know what to expect. had 2 very rough days and spent Saturday night on the toilet but am feeling tons better this week. i only had a quick infusion of this other drug herceptin y'day and the side effects for that are pretty minimal....

so here's the recap:

Thursday & friday were bad...they gave me a shot of neulasta the day after chemo which causes horrible bone pain. the found out y'day that while this shot is meant to build your bone marrow/ white blood cell count that in my case it was overworking. they were shooting for a count of 10,000. i ended up y'day w/ 26,000. i could barely walk....they are going to try and adjust that for next chemo....

the nausea wasn't too bad - it's more of a sour stomach although i did have a moment on Friday when i got a wave of nausea and put my head down on my desk and took a compezine and just waited for it to end.... finally caved in and sat my ass down on the sofa and didn't move and watched season 1 of madmen...made it tolerable..... have decided that Friday afternoons of chemo weeks i'll be showing movies or watching videos ....

i've been really good about getting to the gym and working out. they say that that is the best thing i can do for myself so i take 'em at their word.

this week i'm hoping to feel pretty good....am even incensed enough to want to write a letter to the ny times about the new recommendation to put mammograms off until the age of 50. if i'd followed that protocol, i would be dead by 50. bunch of idiots. i didn't see any mention in the article about making sure that before they made that recommendation that they would use tools such as genetic testing or family history for women to decide who was even in the high risk category. there was another article about how they have drugs now that could prevent bc from even forming but that they can't figure out who and how to give it to people.

late for pt ...you haven't heard the end of this one.

hitting the wall

y'day i hit the wall. woke up so tired and went to the gym. slogged through the recumbent bike and did all my arm / stomach exercises and started to do errands but rethought it. i was so tired i came home and just slept in my gym clothes. i hate doing that. i like to go to bed clean but i couldn't move. my bones were achy..they had told me that the neulasta can give you bone aches...it was really painful. makes the back, knees, hips all hurt. hard to walk normally. today i don't feel as tired but i just got hit with a wave of nausea. am heading to gym to try and work out the demons. this sucks....

waiting for hammer to fall

so far i've just had some nausea and am tired. waiting for the hammer to fall....

chemo today

starting with the big stuff today. very nervous about side effects and allergic reactions. expect in actuality it will be kind of boring as it's a 4 hour drip but the anticipation is always a bitch to deal with. getting lots of nice positive energy from all my friends...thanks....

hair today, gone tomorrow

so i cut my hair today. ...i'm attaching the photos...haven't had short hair since i was 5. had to do it since i don't want it falling out all over the place but the reaction has been incredibly positive...here it is...wish i knew how to navigate on this better...it's in the reverse order of the actual cut....

reception for herceptin

i had my first infusion of herceptin this past monday. i was so nervous driving in that i started to have a panic attack. i didn't know if my port which you know i was against getting would even work and i was worried about the pain going in and the side effects. herceptin basically works as an inhibitor to the human growth factor, her-2/neu. i like to think of it as working kind of like the candy -coating of an m & m. it coats the cell and prevents this factor from overexpressing itself, thereby eliminating that ingredient for producing another tumor. For woman who have my particular pathology, which is triple positive (estrogen & progesteron positive & her-2/neu) herceptin is a "miracle" drug. before it was introduced, my cancer had a recurrence rate of about 65%.

Was hugely relieved that this first of infusion of 17 straight weeks went in like a thumb tack into the port. I normally would have just popped my new favorite drug of choice, xanax but i wasn't sure if i needed to use the ativan which is kind of like xanax w/ anti-nausea thrown in. i finally was given the green light to take the xanax - going forward i'm supposed to take ativan. i was beyond relieved when the port which i've been bitching & moaning about worked and didn't hurt. yee ha. made the whole f-in thing worthwhile. i had been plotting to send the orthodox surgeon who inserted it all kinds of traif to her office to get back at her since it is really low and bascially sits in my left breast (the non-cancerous one) so i now will have matched scars on both sides. one top, one bottom.

the good news for me is that the side effect for this have been minimal. i was so tired from the xanax, benadryl, tylenol and stress that i came home from the infusion and went to sleep for 3 hours. when i woke up i had some chills and a slight headache but took some advil and went back to sleep. had a headache tuesday but again, advil seemed to cure it. HUGELY relieved, as this drug continues for a full year so i'll still be getting it next november.

you should see the regimen they have cooked up for me. start this sunday w/ pepcid & steroid & ativan. monday am steroids & more ativan. chemo. Monday night all kinds of antinausea stuff. i have 5 different options. then Tuesday i get more steroids, a shot of white blood cell boosting stuff & more antinausea.

today i am finding out about my brca gene test. i'm going to need a xanax for that one. if it's positive, i get to look forward to having a double masectomy and my ovaries out once i'm recovered from the chemo. otherwise it's just radiation.

augh. i'm going to end by saying that i took advantage of my last day to goof off and went to momofuku noodle bar w/ 2 of my closest college friends and drank a lot of sake. i was happy there.

lastly, jodie foster & mel gibson are filming on my block. it's been more annoying than fun as the production team is always blocking something and i go back and forth about 20 times during the day ...a little excitement for the small town i live in but why does it have to be on my block right now?

wish me luck today. i will be devastated if my test comes back positive :(

start up

so..spent the weekend being positive about my situation. finally broke down last night at 1:15 when my friend from england told me she wanted to be there for me but that we wouldn't see each other for a while. sometimes it just doesn't matter. you just get hit by a wave of realization of what and how long it's going to be until you are "normal". i snuck out of the party we were at and had what i call "a moment".

"a moment" is when i'm weepy and feeling sorry for myself. i try not to have too many of them but sometimes they sneak up on me when i least expect them.

the fact of the matter is that in the end, it's just me, the drugs and the cancer. all the support in the world doesn't really change that.

tomorrow i start w/ the first part of my chemo regimen. i've been told to feel maybe flu-ish. nervous and apprehensive but, i confess, drinking one of my favorite wines, sineann pinot, resonance and trying to catch the yankee game, watch my shows w/ emma and sleep.

happy that ben's team kicked ass today. loved that little guy eric today.

signing off.

hating that surgeon

the surgeon who did the procedure called me to see how everything was feeling....when i said that it felt sorer than she had led me to believe she really didn't want to hear about it. i did say that the med student or intern who inserted the iv really botched it up and she said, "i'll have to find out who that was".

so. my question is...doesn't she know who was in her or? for all i know a monkey could have done the operation. i was out on that michael jackson juice.
honestly, i think drs should have to experience all the procedures they do themselves. i could tell she had little or no interest in actually listening to what i had to say. feeling like it was amateur day at mt. sinai.

feeling less sore today and going for walk outside. want to enjoy as much of this good weather as i can while i can.

sporting a port

so i'm posting the photos of my arm 2 days after getting an iv so i could get a port in. i am so angry that the surgeon or anesthesiologist allowed an idiot intern to do this. when he missed the vein initally, he said, "oh this is so embaressing" as he continued to dig for a vein. ironically, i got this procedure to save my one arm from getting all the veins blown by the 18 weeks of infusions. the whole procedure was kind of bizarre from the get go. met w/ the surgeon on monday. she was lovely, very nice and said that it was kind of a big nothing - that i'd feel sore but not a lot of pain or a big deal. i'm starting to really not trust any of the doctors when they say that.

she'd had a xlation for tuesday morning and when she offered it, i figured, "why not"? otherwise i'd spend the week kind of waiting for the procedure. i should have waited. it kind of ruined all the healthy, great exercise i was doing. i didn't really anticipate that i would feel like a car had hit my left side (side where she put the port in) or that i'd go home, pop 2 percosets, grab an ice pack and pass out for 4 hours. kind of a precursor to how i might feel on a bad post cheom day. so now my left side hurts more that my right side - the side where i had the lumpectomy and the lymph node dissection. really sucks.

for me, too, i think the port made the whole process feel like it was real and it was imminent. i've been able to avoid feeling like that but there's no denying that all this shit is going down and soon.

i chose the name the shit storm when i dropped off my daughter, emma, one day at school. she was asking me about the treatments i'd be going through and i just said, "it's going to be a shit storm". we looked at each other and started laughing. but it is. going to be a shit storm.

since being diagnosed, everything i've learned and have been told continues to pile up and seem worse and worse. and i'm not even a worst case scenario.

my tumor was found on an annual mammogram. thinking it would be an uneventful one, i'd scheduled my mammogram sept. 4th, the friday before labor day. i was planning to meet my husband, howard, for a boozy lunch at locanda verde as a good way to start the holiday weekend. it wasn't until they'd pulled me in for the 8th time for another view that i realized that all was not going as planned. the technician said that the radiologist wanted to do an ultrasound and that she'd be in shortly to explain why.

the radiologist came in and apologized for making me wait so long but that she'd pulled all my films from 1998 and that she was seeing something that she'd never seen before and that she wanted to get a closer look at it. was i ok with that? are you ever ok with that?

she proceeded to locate the spot / tumor on the ultrasound and showed it to me. it was dark and dense. again, she gently told me this was a lump that oftentimes turned out to be nothing but that when it was dark like this that it sometimes was an indication that something was not right. she measured it and said that she'd like to schedule me for a core biopsy. because of my timing, she couldn't schedule it until wednesday of the following week.

if there's anything to be learned from this i would advise women to schedule their mammograms early in the week, so if there is a problem, they can get it looked at before the weekend. my timing sucked as i now had a 3 day weekend to get through, knowing that there was something that they were looking at. funny how sometimes you have a feeling that all is not right but you don't want to give into that fear. i kept telling myself that lots of women have to have biopsies and that for most, it's nothing. it didn't help matters for me that they'd been following micro-calcifications for the past 2 years and that this mass that they saw was right next to them. this year was (of course) the year that i'd actually gone a year between mammograms. up unitl then, they'd been watching it every 6 months.