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.