Our life with the ToxoTwins

My kid is cool...

2011-09-14T15:38:00.000-07:00

...well, actually they both are cool. But every once in a while, there is an anecdote that bears repeating. Tomorrow is their 6th birthday - that is, 6 years since that fateful night when they cut my kids out of my stomach. It's been an amazing adventure - not easy of course, but parenthood isn't supposed to be easy. But 21 surgeries, 4 shunts, visual impairment, blindness and seizures in foreign countries all add up to some pretty thick skin but also some very good life lessons.

Creed and Zelda are now in Kindergarten. They miss their beloved Ecole of 3 years and their friends that they made there, but are adapting very well to Kindergarten. They have dedicated and attentive teachers and classrooms full of new friends. But with a birthday at the start of a new school in a new school year, it's a bit difficult to put together that list of invitees for the Birthday Extravaganza at Kiddies Acres. Of course, we'll invite their old "amis" from Ecole as we try to sift through 22 kids in each of their new classes and find out who each of the twins calls a friend in only week #2 of school.

With Zelda, it's always a bit difficult to figure out who she likes. Everyone seems to love Zelda, as they call out her name each morning and cheerfully say "Hi Zelda." She, on the other hand, seems quite indifferent to almost everyone except for the teachers.
But with Creed, we try to pull information out of him. Creed had already decided on 2 friends that he wanted to invite.
Joey is his new best buddy - they met the first day of school - and Creed mentions him everyday. So, then I asked Creed, "Who else besides Joey would you like to invite from your class?"
His answer: "Mom, I want to invite Zachy. I know that he'll need extra help but I really want him to come to my party."
Zachy is in a wheelchair. He doesn't walk or speak. He was in Zelda's PPCD class last year (Public Preschool for Children with Disabilities) so we have passed the year with smiles and knowing looks between us and his parents and his sister is in Zelda's Kindergarten. Of all of the kids, Creed wanted to invite Zachy. I love that in him. I wish every kid would feel that way for Zachy, for Zelda, for Fin, for all those kids that are loved from afar but are not always included...I wish for every kid, parent, family and otherwise to have that kind of compassion.

Happy, happy birthday to my twins - I am so glad that they are not "normal"....I love you, C & Z!

Tumblr - STOP IT!

2011-09-07T07:16:00.000-07:00

...well, I really don't hate Tumblr but I do hate how people use it. There has been this trend around for a while of posting photos - just cool photos, things people like, no words, no reasons, no descriptions, not even photos taken by the poster. They are usually photos found on the internet that people obviously like for one reason or another and want to share for whatever reason. There are entire blogs based on this. Entire magazines. Well, it pisses me off. I guess mostly because people are not giving reasons. There is an ingrained, unspoken and assumed "stamp of approval" without words. It's actually quite egotistical. "I like this, therefore you should." "I see validity in this, don't you?" But I want a conversation - is it the color? The beauty of the sunset? The shape of the clothing? The black and white starkness? The fragile patina of eroding paint?

I like photos, too. I like lots of things expressed by others in a visual medium. But recently I have realized why I need to describe what it is about something and why I like it. Zelda makes me open my eyes, my ears and my thoughts more and more each day. It's not good enough to just take a road trip with the twins and say "Hey, look at those cows!" I describe the shape, the color, how many there are, the sound they make, and the field they are standing in. If I see a cool building or a billboard or the right red ball of the sun coming up this morning - it's too easy to say to Creed, "Wow, look at the sun." The dialogue is needed. Why is it different or interesting or beautiful? How does the color compare to something else in nature? How does it make him feel?

So, I think Tumblr lets people be lazy. People who spend time looking at other people's work...the photographer had a reason to take the photo, the photo is his or her words. They are not yours. Challenge yourself.

This morning as I drove the kids to school, I did it in an almost unconscious kind of way. Usually, Evan and I pull in Circle Drive and I get out and walk with each twin to their Kindergarten classroom while Evan waits in car. The children are used to it. Zelda knows the route to Casis and that curve into the drop-off driveway as well as she knows the hill of our street, the turn down our alley and the slant of our driveway. But this morning, Evan had an errand and I took the kids to school alone. I parked the car on a side street and then began walking them down the sidewalk, up the concrete steps and around the back of the school. Creed was thrilled. He recognized the route and could tell we were entering the school from a back door. And then I heard it: Zelda asking, "Mama, what are we doing?" Shit, I hadn't told her. It was the Tumblr photo. It was the assumption. It was a lack of words. It snapped in me - the beauty of words is just as important, strong and inviting as the beauty of the visual. Have we become more and more steeped in a lazy expression of another person's declaration of their "vision"? Does any of this make sense to anyone besides me? I would appreciate your thoughts...

P.S. Oh, and another thing I have a hard time with is blogs by people that post what they are wearing every day. It seems to be a twenty-something phenomenon. Yes, you are all "super cute" and clever stylists. Bravo. But now really kids, do we really care about how you put together your "vintage find" with last year's belt from a designer sale?
Can you tell I am in a snarky mood?

Oh là là...skipped on to Paris...

2011-07-02T08:15:00.000-07:00

...first, let me say that we had a lovely time in Telluride, New Mexico and ended our southwestern trip staying with our friends who own Rocketbuster boots in El Paso, Texas. The twins then did 2 1/2 weeks at day camp: Ecole for Creed & Braille Camp for Zelda.
And, now we're in Paris.
Arrivé, hier.
Arrived yesterday morning, major traffic jams - embouteillages - so thank goodness my old friend Manu picked us up at the airport. Gillian (my assistant at Blackmail), Creed, Zelda and me...and 6 weeks worth of luggage. For this first week, we're staying with my very good friends: Elsa & Laurent. Elsa and I went to Esmod together in the '80's, showed our collections in the same shows and sold our designs in a gallery of "Jeunes Créateurs" for a few years. We've been friends ever since. They have a son, born the same time as the twins and a daughter who will soon turn 13.
I am lucky enough to have had Gillian accompany me on the flight - flying with twin 6 yr olds is exhausting and now we all divide and conquer with the kids. Yesterday at the park, then to a café with friends and a lovely late dinner.

I will try and update often on the twins and their reactions and experiences here: Paris is their oyster!
Otherwise, the chronicles of my teaching and design experience will be in: www.blackmaildesign.blogspot.com
And of course, "le grand projet", our book La Petite Zelda goes to Paris will be followed in www.lapetitezelda.blogspot.com.

Godspeed, you road warriors...

2011-06-03T07:07:00.000-07:00

...yes, that was supposed to be us. We were supposed to leave yesterday at the crack of dawn to start our drive to Telluride, spend last night watching the sunset and drinking wine from our the porch of friends in Taos and then lazily climb our way up the mountain to arrive at our destination for dinner. We'll be staying with Moon Bear - that's Christopher, Seth's boyfriend. Craig arrives - uh, yesterday. Yep, we're behind in our travels.

Oh, have no fear...we'll be leaving today. We'll drive like the wind, that's Evan's specialty even when he's sleep deprived from putting up a last sign for a client. And on the way, I'll complete the work on my course syllabus and write the toast that I'll give at Seth's party. Yes, it's his "retirement" party. A huge blow-out of a party. I met Seth in 1980 when we were both teaching at the same small, quite new, private Episcopal high school in a rented building in Cabin John, Md: St Andrew's Episcopal School.It was a magical place for students and teachers alike, but of course, like all schools, not without its problems. Now, they are like a country club, with an endowment and a lush, sprawling campus out in Potomac.

Anyway, I was straight out of college and freshly back from studying in France - a degree in French and a diploma in Secondary Education led me to answer an ad in the Washington Post for a teaching position in a small private school. The minute I sat down in front of the headmaster, Dr Borg - a wonderful man, he informed me that the French teacher had changed her mind and wasn't leaving. Could I teach Latin? (Well, I HAD taken Latin at Gettysburg although my professor was a drunk) Could I teach a course called Introduction to Languages to 7th graders? Basically, a course in Latin & Greek word roots, Etymology 101. Sure, I could do it. Could I teach Music Appreciation? I guess so. I had played the flute in high school. A month later: could I teach Spanish? Mrs XYZ had left screaming out of the classroom and they saw on my transcripts that I had taken it in college. I actually put my foot down when they asked me to coach field hockey (I did coach girls' basketball and volleyball, however) but not before I taught the last semester of Shakespeare to 10th graders and had one gifted student who qualified for Advanced French.

But a few months into that first year at St A's, Mr Phillips - the pain pill addicted Science teacher - was found out. The students used to say that he would disappear into his 1970's blue Chevy when he wasn't teaching and would fall asleep there. So, Dr Borg fired him, place another classified ad and here came: Mr Berg - the vintage tuxedo wearing, afro sportin', Jewish kid - fresh out of Oberlin.

Seth had been there about a week, and I, having just finished a lesson on the word root "homo" and building combinations with a bunch of howling 7th graders, was gathering up my "desk" (we all shared classrooms), as he paid me a vist. He sat down at in a kid's spot and quite seriously asked: "So, how do you keep them in their seats?" It was at that moment that I realized we were both the youngest, inexperienced teachers there - hired out of the newspaper want ads - and entrusted with these kids by the Patron Saint of lost causes, Dr Warren Borg. Seth and I bonded that day, needless to say I taught him all kinds of tricks on how to keep 12 year olds seated (!). He and I became fast friends. We went on to host an annual Beach Party every summer for the graduating seniors, chaperoned kids to concerts like the Grateful Dead and the Rolling Stones when their parents didn't want to go, introduced the older students to the worlds of picking vintage clothing and performing drag queens, he sang with the kids in a rock band and I in a musical...but most of all we shared with them our love of learning and our passions for the subjects we taught. Seth left St Andrew's after a few years and went off to teach at Burke Mt Academy. I stayed at St Andrew's and took kids up there during spring break to ski. When I went on to grad school and later design school & work in Paris, Seth visited me often. We made movies each summer and started Red Gun Productions with Craig, Alec and Edie. We traveled through France, the Netherlands, Italy and Spain. He was a "bridesmaid" in both of my weddings, took care of me when I had cancer and is the favorite "guncle" to my twins.

And throughout it all - he has remained a very, very best friend of mine. So, we are going to Telluride to celebrate the "retirement" of Seth aka Mr. Berg, aka ICE of Ice and the Bergs, aka the 2008 Colorado TOY - Teacher of the Year, after his 30 yrs of teaching. As I also celebrate our 30 years of friendship.

Seth, Alec & Kathy filming a Red Gun Production in Alexandria, VA:

Seth & Christopher, Christmas 2010, Austin ,TX:

Seth & Creed, Port Aransas, TX:

Mud May...

2011-05-24T18:36:00.000-07:00

...rarely do I just post photos, but I couldn't resist these pictures taken last weekend at the most awesome birthday party/mudslide that I have seen in years. I want to have a party like this for the grownups...

Creed's big plans...

2011-05-16T09:53:00.000-07:00

...so, yesterday I spoke with my mother-in-law who wanted to talk about where the kids would go to high school and college! Not exactly on the top of our list for worries or projections at the moment, since we still need to start kindergarten in the fall.
And then I really wanted to open the can of worms and tell her what Creed's plans are for his own future.

Creed has a girlfriend AKA his "wife" named Millie. Sometimes it's Sophia or Kate, but 99% of the time it's Millie. They have been at Ecole for 3 years together now. His plans all seem to include her.

"Mom, I need money to go to Mexico so Millie and I can have a big party for our friends. We're going to ride whales."

"Dad, let's go to Home Depot and buy paint and wood for the house Millie and I are building in Mexico."

"Mom, I am needing to go to the airport at midnight. Millie and I are moving to New York to start a band"

"Dad, my band is going to be called 'Creed and the Firemen.' Do you think Alejandro will join? Millie's band is called 'Millie and the Ambulance.'"

"Mom, can you meet us in New York and bring Millie the wedding dress if she forgets it?"

This has been going on for months now...so finally yesterday, I asked him why he wants to get married to Millie at such a young age.

His response: She's nice. I like her a lot and we're friends.
Me: Okay - good reasons. What will you do when you get married?
Creed: Oh, we'll be parents. I'll make signs and Millie will make dresses, go to meetings and have breast cancer.

Wow.

Yee haw! Kindergarten Round up...

2011-05-04T12:39:00.000-07:00

...I guess it's a Texas thing, as that's what they call the Orientation when they invite the future fall Kindergarteners to see their school. Creed, Zelda, Evan and I showed up early yesterday morning to the cafeteria where we were handed 2 huge packets of forms to fill out, and tons of info on the PTA, I am not sure I can even go there yet with volunteering - as I am still serving as the Board President for Ecole...sigh.

Next, the K teachers arrived and the kids were divided up to spend an hour in a real classroom with other equally suspicious, terrified or clueless 5 year olds. I'd have to say that Creed was suspicious and Zelda: clueless, but it all went quite flawlessly.

Now, it's back to solidifying our summer plans for Paris. Ecole graduation is June 1st when they toss their little Montessori seedlings out into the big world.
We leave for Telluride, CO., the very next day for our guncle Seth's retirement party. Back to Austin for a few weeks of camp, then off to France on June 30th. Still to do: passports, arranging apartment stay, writing my curriculum for my course that I am teaching on Fashion & Design, moving Ecole to its new location and last but not least: getting everything ready to finish the book in Paris!

La Petite Zelda goes to Paris...is becoming a reality. )ur kickstarter site is up - please help fund our cause! We will get our wonderful illustrator on site to photograph, film, and sketch Zelda as she discovers the city and start working on our final draft for publishing. Merci to all who have pledged thus far...

http://www.kickstarter.com/projects/1445129892/la-petite-zelda-goes-to-paris

La Petite Zelda is going to Paris...

2011-04-26T12:10:00.001-07:00

...come and help us write our book about discovering the City of Light through touch, smell, taste and sound.
"La Petite Zelda goes to Paris"...is the story of Zelda and her brother Creed who helps his sister "see" Paris through discovery using all of her senses except sight. We'll visit Le Jarden de Tuileries, La Tour Eiffel, Notre Dame, the flea markets, the boulangeries, and so many other places. Close your eyes and imagine it...The book will be illustrated by Aaron Flynn - see an example of his work above! - and will be published in English, French and Braille.

I have just launched my kickstarter project so please click on the above link and see the story that we'll be writing while in Paris this summer - we need your support to make this dream a reality. For those of you unfamiliar with the Kickstarter program, it is a funding project to help artists bring their projects to realization. Each funding level will receive a gift from us, so please take a look...and merci, mille fois...

Cancer makes you do crazy things...

2011-04-10T12:18:00.001-07:00

...so I got a summer job in Paris. I'll be teaching Fashion & Design to exchange students and the twins will come over there with me for 6 weeks or so.

Cancer is a funny beast. I have known it intimately. And for those who know me well, they are accustomed to my flights of folly. I have, since I was a teenager, or my parents could probably argue earlier than that, have figured out something I've wanted and gone about getting it. There was drawing a picture and getting it published on the cover of a book for the United Nations when I was 12, going to France for the first time when I was 15, spending every summer of my life in the mountains in a canoe, on a trail or hanging off cliffs until I was 24, deciding to become a teacher, going to grad school on a full scholarship, selling everything to move back to Paris for design school, making TV shows & movies, writing, public speaking, riding motorcycles, getting married to a not so good "was-bund" and marrying a much better one, having twins at 47, raising little kids in my 50's (one who is blind), returning to full-time designing...the list goes on and there are oh, so many things I CAN'T or won't mention (for now)...

But it's that doggone cancer that pricks you like a pin and says "Wake the fuck up and do more!" "What haven't you done in your life that you've wanted to do?" I have heard people say that they wake up after fighting cancer - they smell the flowers, they love harder, they acknowledge life and are more patient with others. I have even heard people thank cancer for opening their eyes and giving them a new lease on life. One woman once said something like she wished everyone she knew could have the mental and emotional effect of having cancer to experience how it changes you. Personally, I think that's a crock of shit and wouldn't wish cancer - even for its life-changing values - on anyone!

But I must admit, cancer - even in the tiniest ways - makes me do some things differently. Ever since I lived for all of those years in France, I've always said I would like to go back and spend a month there every year - especially now that Creed & Zelda are around. But, did I ever attempt a plan? Look into it? Do any research? Well, no - I would visit, attend shows, visit museums, have parties and delight in old friends... And then the other day I saw the post and with my "life's too short, eat dessert first attitude", I applied for the job: each day imagining a summer where I could teach what I love and spend time with my dear friends, introducing my kids to the city that is such a part of me, soaking up "ma dose" of inspiration, work on my book (oh! you didn't know that I was writing one?), and make new connections for my one-of-a-kind slow fashion movement.

So, here we go...do I have the money for the plane tickets yet? Well, no. Have I secured us an apartment yet? Well, no. What will happen at my shop while we're there? Haven't decided yet. And there's Evan...my husband: watching, wondering, silently shaking his head, waiting for the plan to unfold...and it will.

Less then 90 days and counting...on arrive!

Yoko, hello...

2011-03-28T11:50:00.000-07:00

...yes, it was me...the crazy woman that had to thank Yoko Ono for her support of the Braille Institute free books for blind kids. When I heard that she would be here for SXSW, I only barely imagined just running into her with Zelda and introducing the two of them. But SXSW had come and gone, and there I was on a quiet Monday in my shop, chatting with Jerry, my neighbor. And then I saw her - crossing the street, coming towards the sidewalk in front of my atelier. She was so petite, in black and white, with her face obscured by a fedora & sunglasses - but I knew it was her. She didn't stop but kept walking on with her 2 assistants.

In a split second, non-thinking moment, I went after her, leaving my shop unattended. I caught up to them and passed them, and when her assistant spoke, I turned around as if to be surprised. "Oh, my...Yoko Ono." As I spoke - who knows exactly what I said except for "my 5 1/2 yr old daughter is blind and thank you so much for supporting Braille literacy" among other things. I saw her shoulders drop and relax as she listened and realized that I wasn't such a crazy stalker - only a mildly crazy one...she offered her hand to grasp mine, smiled and said to send Zelda her best wishes.

And then I moved on - but to where? I kept on walking to Jo's, met my friend Aaron at the front of the line and said - still reeling from my Yoko encounter - "I have no money with me, can you buy me a tea?, and here comes Yoko Ono." And then as we waited, there was a tap on my shoulder, and all of Jo's was staring, as Yoko wanted to talk to me again! She wanted to thank me this time, for stopping and explaining my situation and talking about la petite Zelda. She told me it "made her feel so much better." So, I wasn't such the crazy stalker, but the grateful mom that so appreciates every few months when we receive that Braille catalogue in the mail for a choice of free books, and on the front of the catalogue reads: with grateful support from Yoko Ono Lennon...

I have been away...

2011-03-26T07:50:00.000-07:00

...physically, mentally and spiritually... life gets in the way. But so much is happening - especially in the lives and development of the Toxotwins. So, here it is, their recent photo taken during SXSW:

They are healthy but not without their interesting behavioral quirks. Their tenure at Ecole is nearing the end. Three years in a French immersion pre-school with Zelda splitting her time at a local elementary school for her various therapies: Braille, speech, OT, and O & M.
Creed is growing like a weed and imagineering stories beyond belief which usually include a girlfriend or two, parties in Mexico, building a house, his fireman friends and Clifford, the big red dog.

Today is my 53 birthday as we head out to the flea market fields of Warrenton/Round Top to see friends and pick through treasures.

more later...

Chicago, Chicago...

2011-02-01T18:39:00.000-08:00

...so, I have written about this before: our trip to Chicago for the twins' participation in the Toxoplasmosis Study Group at the University of Chicago. This was our 4th trip up there to see Dr McLeod and her team in the past 5 1/2 years. Before I continue, however, I just need to say something about "Toxo". It sucks - it really does. Yes, I've said that about cancer. BUT, there's a big difference. Cancer can be treated and one can be declared "Cancer free." (Don't get me wrong, definitely NOT trying to make light of it...as I have known 2 people these past few weeks who fought their cancers to the bitter end...)

However, babies born with congenital toxoplasmosis will never be Toxo-free. They are born with that nasty little parasite swimming around in their eyes and their brains -thanks to transmission through cat feces (no, I don't have cats), improperly washed fruits or vegetables, or undercooked meats. So, if you have a cat - keep it inside. If you're pregnant, get tested. Cook your meats, wash your vegetales AND wash your cutting utensils. And if you're not immune, get treated.

Over the past 4 visits to Chicago, I have had the opportunity to talk to other Moms. None of them can remember being ill while pregnant or how they could have possibly contracted the parasitic infection. Some have kids with no symptoms, others have kids with varying degrees of effects on the eyes or in the brains of their children. But the one thing we all seem to have in common is guilt - even if we don't discuss it. How could we have let this happen? We were so careful when we were pregnant. If they were like me, having undergone fertility treatments, I was tested beforehand for everything - or at least, I thought I was. I often wonder if the twins will resent me when they learn more about this affliction. Will Creed be pissed at me because he can't play football or hockey with 2 shunts in his brain? Will Zelda hate me because I transmitted the parasite that caused her blindness?

Shit, I really didn't want to go "there". I think I have gotten off track from telling about our weekend. I'm stopping here. For now.

Watching a movie: one blind, one can see...

2011-01-23T10:21:00.000-08:00

...so, we've taken to watching movies in our little house. I, for one, love crime TV, but Evan is always freaking out that Creed will see violence, blood and death and I guess he's right. So, on weekends, in the mornings, we watch cartoons on PBS and then usually a movie on a dreary cold day like today.

Creed is like his Dad: if there is absolutely anything moving on the screen, he is fixated. Frozen. Un-interruptible. (Is that a word?) "Creed, Creed, Creed!" I can shout. "Evan, Evan, Evan!"...it's the same non-responsiveness.

Zelda watches TV with her ears. She walks from her room, leaves her Lego's or books or beads - or brings them along with her - then stands right next to the screen and listens. It all depends on if she hears something sufficiently interesting or recognizable. She can sing with the Biscuit Brothers or recognize Elmo's voice and then will repeat or count along. She'll echo the dialogue and ask questions. "Mom, who's that?"

So, today we decided to watch the animated "Beauty & the Beast" (not to be confused with Jean Cocteau's "La Belle et la Bete", one of my favorite films). Both twins were on the "big bed", with Creed hunkered down to pay attention and Zelda sitting nearby with her "tickets". She likes to play with a stack of unopened mail - sorting it, holding it, counting it, etc. The movie begins and instantly Creed gives a dissertation on how Gaston is the good guy and the Beast is bad. So bad, that he wants to close his eyes and not see him. It's scary. Meanwhile, Zelda is happily singing and listening to the voices and songs. When they enter the castle, she shouts "They're in the bathroom" - because she recalls the echo of when we go into a public restroom. When the wolves are barking or the Beast is growling, she'll say "Mom, it's the dogs!" I try and describe the difference to her but the action moves fast and so does Zelda...she is bouncing, smiling, rolling on the bed, but always listening. I try and relay the plot, the characters and the action but to no avail. She's just not there yet...in terms of patience and wanting to understand. Nothing is scary to her and she can leave the action at any moment. In that way, Zelda is like me. I rarely get frightened and actually like horror films and I can also multi-task, knitting, emptying the dishwasher, sewing a dress, while a movie is on.

But the three of us do make it through the film: "tickets" and cookies all over the bed. Creed leaning on his elbows, riveted to the screen. He appreciates when the Beast turns from a "bad guy" to a "good guy". Zelda likes that Belle is pretty and that there were some songs. But alas, at the end, she still says, "Mom, can I NOW go and listen to Manu Chao?..."

Zelda "watching" a movie...

happy, happy 2011...movin' on

2011-01-08T09:31:00.000-08:00

photo by Todd V. Wolfson

There's something about Zelda...

2010-12-28T14:41:00.001-08:00

...so Christmas has come and gone, not without a visit to the ER. Just 3 days before the holiday, Zelda had a seizure - there were good things and bad things to come out of it. I can't help but think what a life without toxoplasmosis would be like for her. Creed is far less affected by the parasite in his system. He has had only one seizure in his lifetime: when he was a baby - and they attributed it to a fever. Sure, he has his 2 VP shunts in his brain and wears glasses due to the toxo scar on his right macula but he sees everything and "he will learn to read 'normally' and drive" - as they repeated over and over again to us in the NICU upon diagnosis of the infection. Zelda somehow got such a higher dose of the parasite - possibly due to her placement in my uterus.

Zelda was very quiet that morning, keeping to herself and a bit cranky. When I asked her if she was OK, she would say No. She felt warm. Her hands felt limp. She was pale with deep purple lips - all signs of a seizure approaching. It's as if now, as she grows older, she's able to know that something is not right. So, we gave her an extra dose of Keppra and she and I got into bed to take a nap while Creed watched cartoons.

Suddenly at 11am, I had dozed off and was awoken by a gurgle and wheezing sound. Next to me, Zelda was jerking her hands and had started seizing. I called (in this order): Evan, Jason (our EMS commander BFF), and 911. While I was making the calls, I ran to the fridge, took out her Diastat and gave her a suppository of medicine (sorry if that's TMI)...and it worked! She immediately calmed down.

It's often tough to find our little bungalow - as we live on a private alley so I sent my little boy - out in his underwear - to the front porch. Imagine Creed, jumping up and down in his Underoos, waving to the ambulance and oh, so proud of himself.

Off the the ER we went. Her vitals were good. No shunt malfunctions and no sign of pneumonia...we were discharged by 5pm...

Zelda tends to open her teeny little eyes when she wakes up from the seizure...

And she immediately gets busy...

Reading her Braille...

And then crashes again with Uncle Seth...

Christmas is coming...

2010-12-17T10:53:00.000-08:00

...ack! The Holiday break started today - like marks on a prison wall, we count off the days of finding suitable fun for the twins' while we still try and get some work done. Really, it's great to have them home, they are adorable and fun but at age 5, it's still very: "Mom, what's this?" "Mom, look at that!"

So, Day 1:
- redecorating the tree (Creed, in his very French Montessori way, likes to do his travail - that is: his "work" removing the ornaments and replacing them EVERY DAY!
- cleaning up with Zelda as she experiences every box and bag of food in the house and the crumbs that accompany them.
- listening to Bebel Gilberto, the Biscuit Brothers Christmas, and the Rolling Stones Sticky Fingers - ad infinitum...
- perhaps a trip to Hancock Fabrics and Office Depot?!!
- Aunt Shakti visits tonight so Evan and I can sneak off to an attorney friend's office holiday cocktail party.

Yesterday was spent at various Pre-K and Ecole Christmas parties, so here are some photos to be shared:

The absolute best recent photo of la petite Z - taken in the garden at her Pre-K program. I love her Elvis sneer and by the way, she's holding an eggplant.

The hysterical mug-shot Christmas ornament, starring Zelda in a Yard Dog t-shirt:

Z in her classroom wearing her oh-so-80's inspired Holiday outfit...

At Ecole, with the friends singing "Vive le Vent" - that would be Jingle Bells..

I call this photo "Cheeks": Creed and Tito enjoying their French holiday potluck...

Le Vendredi Noir, Santa and Olfactory tins...

2010-11-26T10:03:00.000-08:00

Just a few things on my mind:

...so, in the past few years they have been referring to this day - the day after Thanksgiving as Black Friday. Wide Americans in their bad t-shirts camp out in line at the big box stores to storm "La Bastille" and pull everything off the shelves in the guise of buying at discount prices. Now, they're trying to combat this day with a special promotion tomorrow called "Small Business Saturday". What I think is unfair is that today, the unsightly, reckless, unsophisticated battle has claimed the glorious non-color of Black for their moniker and tomorrow we (our small, independently run businesses) are stuck with a generic, unoriginal name...I assume you know how I feel about this. AND, another thing - I had a call from a local TV station the other day to comment on this Saturday's "SBS"..."as a small business owner, will you promoting and participating in this wonderfully local event, by slashing your prices to bring customers into shop at your boutique?" Why? No. I work hard. Every small business owner that I know does, too. We are not about to compete with WalMart's $1.99 specials while we slave over our original products, our merchandising and our beautiful displays - never mind paying our loyal employees more than minimum wage. I hope that my customers will understand that I try to offer them the best product for their money and don't have the 1000% mark-up that would enable me to slash their retail price down to just a few more cents more than what I would be paying a child in a third world country for production. Sigh...

So, No. 2: Creed is so into Santa this year. We have been seeing him everywhere since before Halloween. So, I lied. I have told Creed that we were not able to speak of Santa, look for him and discuss him until after Thanksgiving as it is against the law. Yep, that's right - I am a dictator. However, today the moratorium has been lifted.

and No. 3: Zelda is a cool little girl. One of the many things I love about la petite Z is that we have so far successfully avoided the pink sparkly-dom of little girlhood. No "My little ponies", no t-shirts with princesses on them, no Barbies or any dolls for that matter. However, as she grows older, it gets increasingly more difficult to buy her gifts aside from books and music. I have turned to making them -gifts that is - and this year, I have a super idea for her Christmas gift and I beg the assistance of my dear readers. Here is the idea: each morning I drink my tea from Mariage Freres that comes in a wonderfully smooth and beautiful black tin, I save them or regift them but at this point I have at least fifteen or so, like this...

I want to capture smells, fill each tin with an object either possessing the smell or just the smell itself. On the bottom of the can, I'll label the smell in Braille. We can play the game with her (and Creed as well, for that matter) as she chooses a tin, she'll open it and I'll ask her to identify the smell. After she distinguishes the smell, we can read the word together labeled on the bottom of the can. Not only will she be sharpening her olfactory sense but she'll be practicing her Braille as well. So, I have coffee, leather, roses, glue, tea(!), but I need others...pray tell, dear readers...close your eyes, think of your favorite smells, how they be represented or stored in a can? Send me your ideas...Also, I need a name for this game. So, here goes and merci d'avance...

Overdrive...

2010-11-13T07:16:00.000-08:00

...yesterday I was thinking about myself. Depressed, angry and cranky over my upcoming surgery. Tuesday: my bilateral mastectomy...losing my perfect Marie Antoinette "coupe de champagne" breasts. I am 52 and I have never had to wear a bra. When the other girls were sore and developing in middle school, I could run faster than anyone AND without pain. They have served me well. Made me money. Given breast milk to my twins for 13 months. I am angry.

Then, I got a phone call from Zelda's teacher. She had a fever of over 100 degrees. Everything drops. Zelda hasn't had a seizure in 8 months and she is now on 2 different meds that seem to be working. If she gets a fever, a seizure could appear at any moment. I run home, get a syringe of Children's tylenol, a syringe of Kepra, and her Diastat giant rectal injection in case she seizes.

Zelda's teacher, Mrs K, is an absolute wonder. She has already taken Z to the nurse and has her waiting there for me in case she starts to seize. They have no signed permission to give her anything to lower her temperature, so they wait for me. And when I arrive, there she is...my beautiful little girl: smiling and happy albeit a little warm. I give her the meds. She chats on the way to the car and we go home.

Seizure averted.

I am still having my breasts cut off on Tuesday. But my kids are IT. I will fight for them and advocate for their health as long as I am alive...my own shit...not so much...

Zelda, last weekend, at her first "girlfriends birthday party"...

Happy Halloweena...

2010-11-04T14:17:00.000-07:00

...that's Zelda's choice for a costume. So, in a matter of a week: black tutu, skull tights, orangey shirt, black bow in her hair. The trick with Zelda is to not make her feel as if she's wearing a costume, i.e. something strange and uncomfortable. Well, it worked. Creed was a dinosaur but backed out on the make-up at the last minute. A good time was had by all - well, except maybe for me as I was sick as a dog in the aftermath of my fashion show.

Zelda AKA Halloweena in her favorite tunnel at Little Stacy Park...

Creed, a very tired Dinosaur...

Creed with his friend, Lucy, at the Halloween party in the park...

The Zelda Chronicles...

2010-10-16T07:59:00.000-07:00

...as promised, here's the 5th year Zelda update. As relayed earlier, Creed is exploding on all fronts - and the same goes for his sister. Zelda attends one of the best public elementary schools in town every day from 7h45 - 2pm. Yes, we drop her off in her PPCD classroom (that's Public Preschool for Children with Disabilities) every morning at an extremely un-godly hour. She happily jaunts down the hall with her long white cane as the other kids stare, some dare to say 'hello', and as the parents jump out of her way while apologizing profusely. The beauty of the situation is - that in this overly white, upper middle class environment where all the mothers are perfectly dressed in their exercise attire each morning and the dads wear rumpled khaki suits, Zelda knows no visual stereotypes. Diversity, (or lack of) at this point, may only be absorbed through what she hears. So, I guess her mom and dad need to stop being so judgemental and critical!

Anyway, her PPCD class is one of inclusion and it blends with the Pre-K class each day, therefore preparing her for the foray into public kindergarten next year. Andrea, her TVI, works with her on Braille, reading and writing, three times a week. Lonnie, her O & M, works with her to navigate the halls, the playground and general cane usage two times a week. She sees Miss B once a week with a group for Speech and then once a week privately and her language is improving by leaps and bounds. At 2pm everyday, she rides the bus to join Creed and her longtime friends at Ecole, where she continues to be immersed in French and hangs out in the garden for extended day play.

AND, the biggest milestone is now Zelda is peeing in the potty. Wow, wow, wow! We were trying to remain calm and less impatient but with the help of the PPCD team and her beloved teachers at Ecole, she now is potty trained. Except for the poop factor - that deserves a whole other entry. And, I need to write a book. Yes folks, information on how to potty train a blind, stubborn little girl - not much about it anywhere and believe me, I have searched!

Hmmm...let's see, other big news: Zelda will now play by herself and with others in a bouncy house - you know, those giant inflatable things kids have at their parties. Up until last week, she always whined and often screamed for Evan to go in with her but at a recent Ecole potluck, she climbed in herself, jumped, fell and giggled with the other kids. Whew!

She likes to do laundry and put things in the dishwasher...she is even starting to get dressed on her own which is more than I can say for her twin brother.

And, when asked what she wants to be for Halloween, she declared, "Halloweena!" We're working on that one and hoping that it's her first outward display of her imagination.

She sings and continues to identify music and for her 5th birthday at PPCD (where they request no sweets or food, but an activity), Zelda chose the Rolling Stones and had a dance party to 2 of their songs from "Exile on Main Street".

This week, we attended the walk from the Texas State Capitol to City Hall for National White Cane Day...she was by far the tiniest ( and cutest) kid there! GO ZELDA! And I must admit, it really is hard to remember these kids as babies - they are growing, learning and exploring by leaps and bounds. It just gets better every day...

Creed style...update on the boy...

2010-09-26T14:36:00.000-07:00

The twins have turned 5, so it's time to update on their lives, their developmental milestones and of course: their style! Credence Paul is a party boy. He is adorable, sneaky, kind and smarter then we think. I say that because something very interesting happened last month. Friends were in town to visit: my old pal, Seth and his partner, Christopher. We had a wonderfully enlightened time. It just so happened to be at the end of the twins' 3 week vacation between Ecole summer camp and the start of the new school year. In other words: school was out and they were nuts. Creed was taking every opportunity to push all buttons, boundaries and manipulate everyone and everything in his path. So, one afternoon, while Evan, Seth and I went to visit my mom in the hospital - as she had recently broken her hip - Christopher and a friend of his stayed home with the kids. Now, Christopher is very, very wise, observant and has dealt with lots of kids so we were eager to hear what had happened while we were gone as the dynamics with our two kiddos are usually out of the ordinary.
I won't go into great detail but a power struggle ensued between C & C and Creed learned a good lesson as did we. When describing the events, Christopher started with: "First of all, Creed is extremely smart. Really, really smart." That stopped us in our tracks for several reasons. We have dealt with many doctors, educators, and therapists during the short 5 years of their lives and the message has generally been repeatedly: Zelda is so very smart and Creed is so cute and friendly. Wow, what had we been doing? We had let this sink in and begin to cloud our expectations and general view of our childrens' characters. Sure, we knew that both assessments were true - but to have already pigeon-holed them at age 5 in our own minds? It started me looking at Creed in a whole different light. But wait - it's not that I didn't think that Creed was smart, it's just that I had always heard that Zelda was the smart twin. Ackkk!!! I was horrified, embarrassed and felt like someone had just opened a door to my view of my own son. Thank you Christopher!
Anyway, Creed is in his 3rd year at Ecole. The twins' missed the cut-off for Kindergarten as their birthday was the 15th. He is the oldest in the class and it's great to look back on how far he has come. He understands everything in French and at times, even responds in his 2nd language. He loves to help the younger kids. He is still generally sweet and kind, despite turning into a rock-'em, sock-'em kind of boy. He runs, crashes and explodes into everything in his path. His imagination is exploding as well: "Mom, I am going to marry Millie. We need to go to Home Depot and buy paint and wood to build our house in Mexico. Dad, can I borrow some tools?" Or the other night, "Mom, I am so tired...but I still want to go to the Continental Club to hear music."
Creed wants to continue with ice skating lessons and expresses interest in taking ballet. It will be interesting to see how he'll handle contact sports as he becomes more aware of the shunts in his brain. We have started talking about them and he is aware of the tubes in his head. He is able to talk about his vision and will tell us about his good eye(left) and his bad one (right). He's been potty-trained for 2 years now, pees standing up and never has accidents at night. He prefers to be naked when at home but still likes us to pick out his clothes for school. With that said, it's fun to pull out all of the vintage kids' clothes we have collected over the years - stuff we have been stockpiling - and then put them in when they arrive at the appropriate age.

Creed is getting tall and slim - like his dad. And he looks great in a pair of vintage jeans.

...and Now!

2010-09-17T09:46:00.000-07:00

J'ai 5 ans..2 parties down...1 to go!

Z's favorite gift - a jewelry box of buttons and bracelets from Aunt Kia.

Presenting the amazing ToxoTwins...year 5!!

2010-09-15T08:18:00.000-07:00

I do this every year...I relive their birth and the beginning of our lives together. My pregnancy was not fun but I ate like a demon, swam everyday and stayed chained to the daybed. Evan didn't want anything to go wrong. Despite various terrifying bouts with cramping and bleeding at weeks 6, 12, 14 and then at 26w5days, the babies were growing, kicking and playing games in my belly. I knew that Baby was a feisty girl and that Baby B, was a sleepy boy. (Not much has changed!)

On September 14th, we had a lovely rendez-vous with Katherine, a wonderful woman, who we signed up to be our post-partum doula. Friends with twins said she was the best and we should sign her on for the overnight shift. So, with a due date of December 17th and Dr Polon's thoughts that I would only make it to 34 weeks, we decided that she would come on in November when the babies would come out early. She would work 5 nights a week - on from 10:30pm - 8am, so we, the over 45 parents, could get some sleep!:)

I swam that afternoon at the lovely pool at the Austin Motel near our little house. At about 6pm that evening, I started bleeding - just a bit, with some slight cramping. My whole pregnancy had had scares like this, so I calmly called the amazing Dr Clive Polon. He responded in his wonderfully lilting South African accent, "Don't worry, sweetie. Keep careful watch and call me if it gets worse." So, I tucked myself into bed, the bleeding slowed down, but the cramping continued. Being a rather slim woman and carrying a bellyful of twins, I had almost constant menstrual cramping throughout the entire pregnancy up until this point. But I was worried and couldn't sleep. I made Evan stay up almost all night with me - quizzing him aloud from that month's Texas Monthly issue on Texas History. We sang, we talked, we called Dr Polon several times.

The next morning, Dr P said to come to his office right away. He took a look (I'll spare you the details) and said, "Sweetie, the babies are fine but something's not right. You're having contractions." My cramps were actually contractions! What did I know, having never been pregnant before!? I was admitted to Saint David's, hooked up to 3 heart monitors, one for each baby and one for me. They gave me a shot of magnesium sulfate to slow down the contractions - assuming they would abate and that I would be able to go home after a day or two - as well as a shot of steroids to assure that the babies' lungs could handle breathing on their own "just in case" they had to come out early. That was at 10am...Evan starting making the calls...Dr Polon checked in .... the nurses were on surveillance...the cramping worsened....at 4pm, the nurse came in and saw me, "I know that look," she said, "You're in labor." She then proceeded to stick her fist into my uterus and I screamed in pain. "What the fuck are you doing?"

Dr Polon came in at 6:30 pm. He calmly told Evan to go home and get everything we needed - a camera, my bed pillow, whatever else, make the calls...the babies were to be taken out. I cried, "They're too small and not ready." I was a mess. He said that they were fine, but they wanted/needed to come out before something started to get worse. They weren't sure what it was...

My sister Shakti, my sister and brother-in-law: Claudia & Lee, friends Laura, Kat & Don, Victor & Laura: our Katrina refugees from New Orleans - they were all there...the C-section room was freezing. The wonderfully amazing epidural raced through my body and they strapped my arms down in crucifixion mode as my body started shaking uncontrollably. The sheet was put up across my chest and Evan stood holding my hand. I talked of Texas History with the anesthesiologist - he said that was a first during any of the deliveries he'd assisted. Dr Polon stood on my left and out came Baby B, my little boy who quickly became Baby A in the delivery order. Then came my sweet little girl, Baby A became Baby B: born second at 10:32pm. I cried to Evan, "Where are they? What do they look like?" He replied, "Long, grey squirrels."

There were 14 people in the delivery room, besides the delivery team, etc., there was an neonatologist for each baby, their assistants and then some...a real party! I remember Dr Polon holding up Zelda before they whisked her away - she lifted her tiny, skinny grey arm and her eyes were open. They had no names yet...

Zelda at 1 month old

Creed at 2 months old

Happy Birthday to my dear Toxotwins!!!

The letter A...

2010-08-13T09:49:00.000-07:00

...is one dot. A Braille cell is made up of 6 dots - 2 vertical columns with 3 in each column. The letter "A" is dot number one, the upper left corner position. Zelda is learning the Braille alphabet. She is grasping the concept of reading - left to right, starting in the upper left hand corner. Just like Creed is learning the concept of reading by holding a book upright as opposed to upside down, moving his eyes from left to right, following the letters, words and sentences. I am very specific with her teachers when we get together to set her IEP (Individual Educational Plan) for the school year. Her goals must be the same as a sighted child at her age. In this case (among so many others!), it's great to have twins; not to compare them, but to track and be aware of age appropriate goals. So, Zelda is learning her ABC's and every time she feels one dot, one button or even a small knob, she will proudly announce "A"!

Another thing Zelda likes to do is snuggle, kiss, and pat my body. She'll gently pat a part of my arm and ask "Mommy, what's this?" And I'll respond, "That's my wrist, Zelda" - constantly trying to add to her specific vocabulary.
"Mom, what's this?" "That's my back, Zelda."
"Mom, what's this?" - as she pats my chest. "That's my chest and those are my breasts."
And then... she feels my nipple and proudly says: "Mommy, "A"!!!"

Merci, Madame Darla...

2010-08-08T12:27:00.000-07:00

A brief interlude, a photo shoot and a connection to my Blackmail Design Blog... go there to see more photos and read about that morning...

Zelda

by Darla Teagarden

Etape 3...New Hampshire & beyond.

2010-07-30T10:02:00.000-07:00

So, we left New York and headed north to New Hampshire - the little town of Henniker, to be exact. We arrived in the midst of yet another Memorial day parade but I'll spare you any more flag photos. Our old friends from Austin, Adam & Mary Catherine left Manhattan a few years back with their kids, Quintana and Levi and built a lovely house on the side of a mountain. It's all pretty idyllic - they can both travel for work when they need to, yet live in a small, New England town with other like-minded people and their kids can go to a cool school not in the big city.

Needless to say, Levi and Creed hit it off swimmingly - literally and figuratively. Toy cars and light sabers were exchanged. Quintana willed Zelda a beautiful pink dress. Neighbors dropped by for Evan's famous caipirinhias and in the evening, after Adam left to fly off to Florida for a directing job, the adults sat out on the porch, listened to the sounds of the night, shared stories and drank wine.

...and holiday: Memorial Day

2010-07-28T07:41:00.000-07:00

...a little parade in Armonk, New York...lots of old veterans made me think of my Dad and the kids talked about PopPop. Spent most of the day running on the big green lawn - soooo, very jealous of soft grass as Texas is brown, short and spikey. Ugh.
Stay tuned for Etape 3: Henniker, New Hampshire...

L'Etape 2: Yale, a birthday and a holiday...

2010-07-27T16:27:00.000-07:00

Evan's birthday just happened to be the Saturday of his 30th Yale reunion. Such a party with more than a hundred people under a tent. And as a group - that is, Evan's friends - we all decided we looked younger than anyone else. Having the twins with us definitely helped.
Many thanks to Jerry and Mary for their hospitality in Beford, Ann for the cake and babysitting in Woodbridge, and the Peabody Museum and the dinosaurs for not kicking us out when Zelda opened the fire door and set off the alarm in the entire building. "Mom, what's that sound?"...

Etape 1...on our "Tour d'East Coast"

2010-07-11T07:40:00.000-07:00

So day 1, our little peloton loaded up the car with clothing, supplies, and enough Pirate Booty and Cheerios to last for 2 weeks on the road. Leaving at 8pm, we headed north towards Dallas and didn't even make it out of Texas that first evening - Texadelphia? Texarkana? But by the time the next day rolled around, we had passed through Memphis.

Dinner was in Nashville with friends, but not until we had been stopped for speeding in Arkansas. The cop looked at Evan's license and his 'foreign' last name and asked him "You're not from here, are you?" "What kind of name is that?" I personally think that he thought he was working in Arizona and had gotten his 'A' states confused...

We had barbeque with Steve - Evan's old friend from Yale - and his son, Taylor...more driving into the night. It was already Thursday and had to be in Bedford, NY by Friday evening...

Oh, and speeding ticket No. 2 was procured in Virginia the next day...but we did make it to our destination right on time.

The long and winding road...

2010-07-07T12:04:00.000-07:00

...of over 5000+ miles. When Evan first suggested that we drive east to our college reunions at the end of May, I wanted to kill him. We'd done that trip so many times before and the last time - in 2001 - was miserable. I never wanted to see the highwways of Arkansas again. But as we mulled it over and over, the 4 plane tickets, the 2 week car rental and all of the freedom we would have on the road, our decision was made.

We set off before the end of Ecole and right before Evan's birthday, destination: Yale in New Haven for his 30th college reunion. My 30th reunion at Gettysburg in Pennsylvania conveniently happened to be the following weekend so we tacked days on for travel before, a week sandwiched in the middle and the time to get home and there it was: a 2 week road trip through 13 states and thousands of miles with 4 1/2 year old twins...here we go!!

Don't forget to say...congratulations

2010-05-17T12:29:00.000-07:00

I go back to St. David's a lot. It's the hospital where the twins were born, the place where I have had all of my cancer surgeries and the home of the Breast Cancer Resource Center. I am running there at least once a week while we plan Graphic 4: the Art Bra Fashion Show to benefit the BCRC. But that's not what this post is about.

Each time I swing around the drive to pull into the parking garage, I pass the main entrance to the hospital. And each time, almost any hour of the day, there is inevitably a new mom waiting to leave the place with a newborn infant in tow - eager to position that stupid, ungainly baby carrier in the back seat so she can sit next to it and ooh and ahh while some husband, partner or chauffeur drives them home. There are balloons, there are smiles. And each time I see this, I still cringe. It's been almost 5 years, my twins are healthy and thriving and it seems like eons ago that they were born 3 months early and so very, very ill. Evan called them little grey squirrels at just 2 lbs each. And the hardest day of my life up until now - even harder than cancer, even harder than finding out that Zelda was born blind, and perhaps rivaling the pain I felt when my Dad died - was the day I left that hospital without my newborn twins. I was so pissed off that day. I was so angry at those other happy moms.

My friends and family were wonderful. They brought food, they brought flowers but they were afraid. We were afraid. They tiptoed around the questions about the "non-perfect" children, they mourned our "loss" of an idyllic birth experience...And it was hard. It did suck. Our friends were reverent and concerned and worried about us and the babies. I loved and appreciated all of them for it despite my feelings of guilt about going into premature labor and overwhelming post-partum depression.

But the other day, I ran into a friend. He and his wife just had a baby born with Down's Syndrome. I looked at him and smiled knowingly. I asked him how she was doing, empathized over the lengthy NICU stay but most of all I said "Congratulations! I am so happy for you and your wife and your new daughter."

We are so lucky. I am so lucky to be a mom. Whatever the experience, whatever the birth, please don't ever forget to say those words...they mean more to the parents than you'll ever know...tell them "Congratulations"...

franglais...

2010-05-05T09:43:00.000-07:00

So, as most of you know, the twins attend a French Immersion Montessori Preschool that we lovingly refer to as Ecole. This is year #2 and they'll be there for one more year before kindergarten. There are 3 teachers and less then 20 kids - it's a great, loving and nurturing environment. It's also funny when I tell people that's where they go to school, because then they expect Creed and Zelda to just start spitting out French. One has to remember that although the teachers only speak to the kids in French, the students are American (or at least half) and communicate effortlessly in English.

Creed and Zelda understand pretty much everything that I or their beloved teachers say to them. They answer questions and easily follow directions. They automatically respond with "Merci" and greet with "Bonjour". If I say, "Fais voir ton visage" to Zelda, she lifts her head and smiles. If I ask, "Ou sont vos chaussures?", they'll scurry to put on their shoes.

But the aspect that I am loving the most are Creed's questions, requests and interpretations. His half French/half English. His reference to particular objects only with the French word. His Franglais...

The other day, upon spilling some popcorn in the kitchen, he ran up to me and asked: "Mommy, may I have the balai?" That would be the broom. And then "How about the pelle?" Dustpan. He shook Evan awake the other day, "Daddy, I want to see your travail!" Show me your work!
And finally this morning while gathering his supplies for Ecole, "Hey, where's a grand bag?" As opposed to a petit...

Et alors, ca marche, cette histoire....It's fun to watch the way their little brains process and interpret language. It's interesting to think that they're not translating as one does when learning a language when later in school. Hopefully we'll keep doing this with them...at least until they start to complain - in French, of course.

See with your eyes, not with your hands...

2010-04-26T09:06:00.000-07:00

WRONG! But how many times have you heard a parent say this to a child while shopping or at someone's house or in a museum, etc...

We love to go the City Wide Garage Sale every month. All of our favorite antique and junk vendors and friends come in from everywhere to peddle their wares in a big auditorium. Evan and I have been going for years so it's only natural that we continue with this Saturday morning tradition of paying a bit extra to get in beforehand for "Early Shoppers" time. We've been taking the twins since they were in their Baby Bjorns. All of the vendors know them and love to catch up on their news.

Usually we divide and conquer - Evan will take one and I'll take the other. Creed is a rascal and usually gets out of there with a bunch of free vintage cars or balls of string or even a plastic little horse or something. Yesterday was no different, yet as he scampered around and was feeling like he owned the place, I found the dreaded words leaving my mouth. "Credence, we see with our eyes, not with our hands!" Ouch. Wrong. So, I stopped and explained about other's possessions, that we were shopping and that we had to ask before touching. How can I condemn one child's curiosity when his sister uses her hands to see?

When Zelda and I hit the aisles, it's a bit different. First, we'll go and see Deborah and Harrell, they're have vintage guitars and cowboy boots, and racks of rayon slips and old crinolines. Zelda will bury her body in them and walk away with a hanger (one of her favorite items to play with). We'll stop by and see the piles of ropas usadas from Ahab Bowen. With each different table of old linens, scarves, t-shirts, even old furs, Zelda will touch each piece and hold it to her cheek, asking, "Mom, what's this?" Our lesson in textiles will unfold. We'll see Miss Linda Parker, whose booth is artfully arranged with shabby hues of off-white linens, lace, books and curiosities. She loves Zelda's hugs and tries to always find old Braille books for her. Miss Linda introduces her to friends and Zelda hugs each of them. Sandy Schor sells tables of collectible jewelry, strings of beads and chain and underneath the tables - heaven! Zelda sorts through plastic containers of buttons; all the time seeing with her hands.

We stop at one table and a there sits a school autograph book from the late 1880's. Zelda: "I want to touch it." "Mommy, I want to read it." I carefully explain how fragile it was and we turn the pages together, with each page, her tiny fingers search for Braille.

Our final stop is Sarah Lawson, her trays of beads and jewelry findings are the perfect height for la petite Z to rearrange round glass orbs and small metal clasps. Sarah doesn't seem to mind that Zelda has confused her system and says that it will give her something to do for the rest of the afternoon. When I tell Zelda that it's time to go, she tells me that she's staying with Sarah.

The City Wide Garage Sale, like so many places in Austin, is another aspect of our playground. And with each different place or outing, a discussion ensues...we can see with our hands, all of us can...

Real Housewives of Austin, TX...

2010-04-15T09:58:00.000-07:00

...so, everyone is gaga about Reality TV and I don't even watch it - mainly because I don't have cable, thank goodness. As I drove the kids to Ecole this morning...I pitched this series in my mind:
Evan, self-employed artist/signmaker husband, is off on a week long trip to Florida to deliver 3 big ole' vintage signs to a rich client in Boca. I sleep through the alarm and wake up with the sleepy twins in bed with me and 15 minutes to make their lunches, feed them, get them dressed and out the door. Meanwhile, Zelda, with her particular potty training, insists that she spends at least 10 minutes sitting on the potty listening to glam rock, Triple Cobra. Creed, on the other hand is preparing a HUGE bag of various cars, dump trucks and jeeps to haul to Ecole for extended day play.
Loading the car - me, still in my PJ's and my post chemo, platinum blond hair resembling Phylis Diller - I have our builder, Tattoo John, watch the kids as I run in and out to get Zelda extra shoes and leggings in case she pees on them...

Up Mopac, I am writing this scenario in my head. Deliver kids, first Zelda to Gullet, then Creed to Ecole. My sleeping pill still hasn't worn off from the night before. Home to find out we have no electricity on our house renovation job sight, Tattoo John is dealing with inspectors (we haven't passed - yet) and Carlo, our steel guy has just arrived to install 3 flights of our staircase and needs 220 power to run his welder. What to do? Tap into the neighbors fuse box. Woohoo!

I guess I am missing the drama of: lady friends in tight spandex dresses, pedicures, cocktails, plastic surgery, cat fights & such to make this a viable Reality TV show...but this is it...for now...
Tune in for more.
Oh, and by the way, now I am at work, running my own shop and trying to finish a bunch of sewing...

while Daddy's away...

Ce n'est pas normal...

2010-02-22T13:06:00.000-08:00

I've had this friend for a very long time in France - going on 30 years now. She's a bit difficult, very Parisian, very particular and quite bitchy. But we've been through a lot together. I remember when I first moved there years ago, I stayed with her while I looked for an apartment. We would fold the linens in the morning, she at one end and me, holding the opposite corners of the sheets. If you've ever tried to fold sheets with someone, it's inevitable that one person will fold in the opposite direction. When this would occur, Marianne would stop and say, "Gail, ce n'est pas normal." - It's not normal to do it that way...When cooking, she would ask me to prepare the salade. As I broke the lettuce and prepared to wash it, again she would say, "Ce n'est pas normal." Any time I would do something that wasn't in tune with the way she was taught or accustomed to living: to her, it wasn't normal. We had explosive discussions about this. And to this day, the semantics have never been resolved.

So, the other day, I had my first appointment with a plastic surgeon. I must interject that throughout these past several years of fertility treatments, premature births, retinal and neurosurgeries and cancer, I/we - the family have had the most wonderful health care professionals. From the ER doctors down to the nurses and PCA's. So, whenever I go to see a new doctor, I come well equipped with my questions and also an attitude of "this ain't my first rodeo". But as I entered this surgeon's office, I felt vulnerable about my discussion of breast reconstruction as an option after my upcoming bilateral mastectomy.

First of all, I have had 4 surgeries in the past 14 months, plus dose dense chemo and weeks of radiation. Now, with this positive BART result to my genetic testing, I am due to have my breasts cut off. Thus reigns the question: to reconstruct or not to reconstruct? I am a AA at best. Perfectly small, Marie Antoinette, non-sagging breasts for which I have never had to invest in any sort of brassiere. I don't want anything bigger and I quite like myself the way I am. That, obviously is not an option. I have grappled with this decision for a while now - do I need breasts? I haven't really had them my entire life and these little ones that I've had have served me well. They nourished my preemies for the first 13 months of life and now, they're done. So, why not just have them taken off and not replaced?

Well, I had hoped to have had an open, frank discussion about this dilemma but unfortunately I have learned that women walk into a plastic surgeons office and are confronted with one thing: the options for the type of reconstruction, NOT whether or not to have it done at all. When I tried to approach the subject, I heard the dreaded words "Women do it to feel normal, to look normal again". Marianne's voice was ringing in my ears. "Ce n'est pas normal."

What the f**k is normal? But moreover, why would anyone want to be...? I will choose abnormal anyday. We will fly the abnormal flag: my daughter who can't see, my twins' who live with tubes in their brains, my husband who went to an Ivy League school and became a cowboy boot collector and artist instead of an attorney, and me...without breasts.

Sigh...I STILL don't know what I am going to do but I do know one thing: I won't be going back to that plastic surgeon.

Missing you...

2010-01-09T15:23:00.001-08:00

It would have been my Dad's 90th birthday this week. This photo was taken in 1944. I am missing him so very much...

2010 workin' on a dream...

2010-01-07T09:19:00.000-08:00

Trying to break into the New Year while still reflecting on the Old. It's hard to sum up 2009 with good memories so I've decided to do a + and - look back...

Although I was diagnosed with breast cancer in 2008 and had my first surgery before Christmas, 2009 still feels like the year of Cancer, so here we go:

- Had my port-a-cath put in by Dr Ames Smith, BUT +, it was a flawless surgery and easy to recover from.

- Creed hit his chin at Ecole and had his first experience with stitches, BUT +, he was a happy, cheerful, trooper.

- started my first chemo on January 20th, BUT +, Obama was inagurated.

- Had all of my hair cut off and my head shaved, BUT +, shared it with beautiful friends and have amazing photos, thanks to Todd.

- Mom was diagnosed with Stage 2 breast cancer, BUT +, she didn't have to suffer through chemo...

- Lori was diagnosed with Stage 2 breast cancer, BUT +, they were able to shrink the tumor before her surgery.

- 2 months of chemo was hideous, BUT, +, we took the twins to a wonderful outdoor Alejandro Escovedo concert during SXSW.

- Month 3 of chemo was awful, BUT, +, Jerry and Mary visited from NY and we went to see Bruce in concert. Also, modeled in Graphic - the BCRC Art Bra fashion show.

- Final month of chemo was debilitating, BUT +, Manu came from Paris for 3 weeks and I auditioned for a Nike commercial. Also, was contacted by People magazine to do an article about our family's fight with cancer.

- Started Radiation in June, BUT +, got the role in "Driven" - the Nike commercial! Also, took a family trip to the beach and Zelda & Creed LOVED it!! And the People magazine photographer came to shoot us on Father's Day weekend.

- finished 7 weeks of radiation in July, BUT +, headed to Sturgeon Bay, WI to stay with Bill & Kathryn, and then into Chicago to see Margo & Luke and their girls and Gemma, Rowley and Fin and of course, Dr McLeod and the toxoplasmosis research group.

- I was still bald and exhausted, BUT +, Craig and Seth came down to help me take the twins back to the beach.

- Was asked to participate in a Myriad study for genetic predisposition to breast cancer, BUT +, the twins went back to Ecole and and Zelda started her PPCD program.

- Hair was still only under 2 inches long and hated it, BUT +, Zelda and I flew to Pasadena, CA to see Dr Tawansy. Her retinas have remained attached! Creed and Evan took a road trip to El Paso.

- Dad was sick and in and out of the hospital, BUT +, he made it to the twins' 4th birthday party and I was named Honorary Chair of the Breast Cancer Resource Center's Annual Luncheon. I gave the keynote speech.

- Dad was still sick, BUT +, I flew to New Jersey to attend the Camp Beisler reunion and had a wonderful time reconnecting with old friends.

- Lori and tested positive for the BRAT genetic coding and now we have new things to consider in our treatment - which we thought was over, BUT +, I am flown to Beaumount, TX with my friend Deborah to give my speech "Cancer tries on my shoes.." before 1500 people.

- New options for treatment are not good news, BUT +, I am asked to present at Pecha Kucha night with 9 other Austin creatives.

- Dad died...

- Zelda had her 3rd seizure of the year...

- I had my ovaries removed to cut the risk of developing ovarian cancer from 45% down to 4%...there were no cancerous cells in my ovaries.

- Alton visited and Seth and Craig came back for Christmas and New Year's. The kids had a blast. They are happy. healthy and cheerful. We have 3 floors on our house that is under construction. Evan is busy, busy, busy and this year....I will have my breasts cut off.

Happy New Year...

Give me an "O"...

2009-12-14T08:50:00.000-08:00

So, Thursday I will have an Oophorectomy...yes, I am being spayed. Having my ovaries removed. It will be exactly a year and a day from my breast lumpectomy. Oh, the holidays bring such cheer.
With the recent diagnosis of our BART status - that is: my sister Lori and I tested positive for a genetic rearrangement of the BRACA gene; we are at increased risk for developing ovarian cancer as well as another "attack" of breast cancer. So, we're sending in more troops to take out the enemy. Dr Buten, a snazzy little brilliant surgeon will be doing the honors. He hopes to use a new technique called SIL - single incision laproscopy. One little cut around my navel and they'll pull those suckers out.
I am exhausted and overwhelmed but managed to go to a half a dozen holiday parties this past weekend and will attend another tonight because as of Thursday, I will be flattened.

Merry Christmas..

Mind the Gap...

2009-12-09T08:20:00.001-08:00

Each Holiday season, I tend to enjoy the TV commercials that advertise the Gap. I know, it's trite - but they're usually upbeat with good music and fun dancing, nevermind that the clothes are of no interest to me. This year, there is one in particular that just makes me happy and sad at the same time.

Have you seen this commercial? There is a group of adorable little girls - probably ages 4-7 - they are all dress in whacky bright colors, stripes and patterns, scarves, sweaters and leg warmers. They dance and smile and seem to be genuinely happy with each other. At the end, they sit and form this human caterpillar and all scoot out of the frame...

I want Zelda to be that happy. I want her to dance with glee with her friends. And hold their hands and communicate with them. To acknowledge their existence and relate to their companionship. Right now, she does well at school but still plays by herself. She'll smile and chat but she seems to be alone most of the time. She has to be taught how to play, what friends mean and do and how they relate...

Yesterday, I dressed la petite Z in a flowered skirt, pink tights, striped socks with little ankle boots and a pink and tangerine sweater. She was at least as cute as those girls on TV and I hope just as happy...

the People, the People...

2009-12-07T07:26:00.000-08:00

So, for those of you who missed the infamous People magazine article, since the Oprah cover story is now being replaced by Tiger Woods and his scandal:

Update...

2009-11-23T08:13:00.000-08:00

1) 1st photo in a very long time of Zelda with her eyes open.

2) back from TCH in Houston, kids had head CT's and all looks well with their brains and their VP shunts.

3) I am going to have my ovaries removed to cut back on the risk of recurrence of cancer.

More later...

Ze plan, ze plan...

2009-11-16T10:49:00.000-08:00

we have had an educational plan for Zelda this year and it has thus far, worked really well...As you know, both Creed and Zelda started at Ecole, their French immersion Montessori school last year. We love the school and they love our kids but this past September we decided to add a bit to Zelda's academics by putting her in PPCD (Public Preschool for Children with Disabilities) each morning for 3 hours. We drop Z off at Gullet Elementary and proceed directly with Creed to Ecole. Three hours later, la petite Z hops on her very own bus that takes her over to join Creed and her other amis at Ecole. So far, it has worked out swimmingly. Zelda receives the extra speech therapy and structural learning as she was at times experiencing frustrations with too many unseen choices in the academic part of the Montessori day. The PPCD program has 2 teachers for 6 students and she has a lot of directed activities as opposed to free time. When, she gets to Ecole, she has socialization, lunch, reading, nap and then hangs out with the other kids for extended day. She still has the French immersion and is doing quite well with it.

Now here's the problem...this 3 hr PPCD program is only for this year at Gullet. So, the hunt has begun for her next level PPCD program which unfortunately will go until 2pm and unfortunately at another school...then over to Ecole. The twins won't start kindergarten until fall 2011 as their birthday misses the cutoff in September. I am thus far feeling exhausted by the prospects of always trying to find the appropriate school for Zelda but at the same time knowing that once she's there, she will be a superstar. The other part of "Ze plan" is getting Creed into the same school and on the same bus when the time comes. For now, he's a happy camper at Ecole - understanding everything that's said to him in French but not really speaking it. La petite Z, on the other hand, out of the blue will say things like..."Il fait chaud" and "J'ai faim."

Ca continue...

La pleine lune...

2009-11-04T15:25:00.000-08:00

We introduced them to the full moon these past few nights.

Creed: Mom, the Man in the Moon has no body!

Creed: The Man in the Moon sleeps in the sky. We sleep in houses.

Zelda: I can see the Man in the Moon.

My kids are genuises...

p.s I love this photo so much it hurts..photo: Todd V. Wolfson

My dad died...

2009-11-02T09:35:00.000-08:00

...one week ago today, I said good-bye to my Dad. He was 89. God, I loved him. He was so strong, smart, loyal and loving. My Dad was born in 1920 in Ford's, NJ, in a basement on a cold winter's night. His father owned a little grocery store. He was the eldest of 3 children.

He was a superstar in high school, drum major of the marching band, excelled at many musical instruments and in art as well. Our Nana, his mom, used to tell us what a flirt he was. And boy, was he handsome - like Errol Flynn.

He was a Marine in World War II and in the Korean War as well. His stories were infamous and made us laugh. He wedded my mom in 1946 and they stayed married for 63 years. He was a Labor Relations Negotiator before there was such a thing and would tell us stories of Jimmy Hoffa and late nights in Baton Rouge. He knew every good restaurant in the country because he traveled so much, meeting with boilermakers, electricians, masons, steel workers - you name it. He worked as a consultant until he was in his 70's.

When Dad turned 80, he and Mom moved here to Texas to play golf year round and to be closer to us - their 3 girls and their grandchildren. I am so grateful that he got to see the twins and especially his namesake: Credence Paul Chovan Voyles. They called him PopPop and he loved them so.

I saw my Dad again at the funeral home on Tuesday. We had to identify the body before he was sent off to be cremated. He was so cold, so still. I hugged him and didn't want to let go. I still don't...

Playground question...

2009-10-07T07:51:00.000-07:00

Is it okay to kick some 3 yr old's ass?

Every day, we receive a report of Zelda's activities in her PPCD classroom - this is the public school program that she attends for speech and structural learning before she continues on to Ecole each day to join Creed. She's there from 7h4am - 10h45am and then a bus takes her to Ecole.
The report says things like: "Super listening today!" "Nice verbalization!"
And then yesterday: "A three yr old boy from the class next door pushed Z down on the playground, stole her glasses and hid them. We talked to her about it and she seemed ok."

This morning I told her that if it happens again to say "Hey!" and to hold her head up the way she does, smile and say "I'm gorgeous!"

I think it's time...

Cancer tried on my shoes...(the speech)

2009-09-28T10:57:00.000-07:00

Hi, I'm Gail ***, and I have breast cancer...(pause and scan the room).

Okay, this is where you're all supposed to say 'Hi Gail!' in ragged unison, because, let's face it, this is like a big 12-step program, and cancer is the monkey on our backs. Or on our breasts. Either way, we're all in this "club" together. Everyone in this room either has breast cancer, or has been affected by it in some way. Your friends, your partners, your sisters, or your mothers...

So let's try again. Hi, I'm Gail *** and I have breast cancer. (HI GAIL!!)

Okay, that's better. now I can tell you my story and give you my perspective.

A few incredibly short years ago, I was starting a new chapter in my life. I was a boutique owner and a fashion designer: a middle-aged, menopausal, mother-to-be, pregnant with twins, no less. It was what the doctors called a "difficult" pregnancy.

So it was bad enough when I went into early labor, and my twins were born premature(ly?) by three months, at 2 lbs each. My husband, Evan, watched the Caesarian and said they looked like naked grey squirrels.

It was bad enough, when our twins were subsequently diagnosed as being infected with a rare parasite that attacked their eyes and brains, leading to 15 surgeries in their first year and leaving my son visually impaired and my daughter profoundly blind.

It was bad enough, just when we felt that the twins were stabilized about a year ago, that the crashing economy nearly wrecked my little business.

It was bad enough -- and then I felt a lump in my breast.

"Okay", you think, "now we've reached the limit. This is the end of her bad enough list. We pretty much know where it goes from here."

Ah, you would think so. But as they used to say on those cheesy TV commercials, "WAIT! There's MORE!"

Let me introduce you to some other members of the club.
This is my mother, Ann. She's 85 yrs old and was diagnosed with breast cancer one month after I was.
And this is my little sister, Lori. She's 46 yrs old and was diagnosed with breast cancer one month after my mother.

All three of us diagnosed within two months of each other, all in the left breast. In New Jersey, where we come from, that's called a trifecta.

So, we suddenly had a "family history" of breast cancer. And in the midst of these grim discoveries, we found out that my grandmother - my mother's mother - DIED of breast cancer left untreated.

I suspect you're all thinking "New Jersey, huh? They probably lived next to a nuclear waste dump or a chemical plant, or on top of a Mafia burial ground, to get such a dose of familial bad luck.
Sorry, no. We lived in pristine suburbia. We walked a block to school while Dad took the train into New York with the other corporate fathers. And as far as we know, there has been no other unusual incidence of cancer in our old neighborhood to suggest an environmental trigger.

So, maybe you think it's genetic? We've wondered that, too, but we've tested negative for the known genetic markers.

In short, "bad enough" went to inexplicably "worse" for our family. But at least we had each other, just like hopefully every other person in this room who has been affected by breast cancer has had a support group to help them. And that's why we're here today, isn't it? To encourage, support, and celebrate -- sharing our breast cancer experience with others.

That is the main mission of the Breast Cancer Resource Center, after all. To share the experience. I think I was chosen to speak today because my family took the concept of "sharing" cancer a little too far.

So, now I've finished treatment. My hair is growing back. My mother is on tamoxiphen for he next 5 years. My sister will finish radiation next month. We're into the so-called "new normal".

Are we breast cancer "SURVIVORS"? That's the popular term, "survivor". There's a quote from Maya Angelou, former poet-laureate of the United States, framed on the wall at Texas Oncology, outside of what THEY call the "Infusion Room" but what WE lovingly refer to as the "Chemo Spa." It says: "Surviving is important, but thriving is elegant."

Well, I have a problem with the term "survivor". Because, let's face it...cancer is itself a survivor. Our cancers are as individual as we are. And like us, each cancer's life work is to survive. It wants to live, it wants to thrive in an environment that we, cancer's host and sworn enemy, try to make as hostile as possible. We cut it out, we irradiate it, we poison it with chemicals -- we try to make our bodies into that toxic New Jersey you were just imagining, in order to kill cancer. But like us, despite an incredible beating, cancer finds a way to "survive" and come back to beat the odds.

Of course, I resent cancer trying to do this, trying to BE like me while INHABITING me. Cancer is the uninvited guest who won't go away. Cancer is the relative-from-hell, closer to me than my husband, closer to me than my mother and my sisters, closer to me than my children and my friends. Cancer wears my clothes, it tries on my shoes. Cancer is the terror cell within us, masquerading while it plots to take over, and not caring that in destroying us it will thereby destroy itself.

We are at war with cancer, and I don't just want to "survive", I want to fight back! I WANT TO KICK CANCER"S ASS!
Coming out of chemo, bald, I wanted to get a gang-style tattoo on the back of my head that said "FIGHTER" in Gothic letters. Of course my hair would eventually grow back and cover it, but FIGHTER would always be there for me, as a reminder and a warning. My husband suggested it might be better to get the same letters done backwards across my forehead, so i could read them every time I looked in the mirror...I think he was kidding, but I'm not sure.

So, what then, can we do, not as victims, not as survivors, but as WARRIORS?
We struggle and we fight, to live on and to live well, to raise money and to raise awareness. And to offer support. The weapons we bring to bear as a community are resource groups and research grants. Here today, we commit ourselves to such a group, the Breast Cancer Resource Center, and all the work it does throughout the year, arming and arousing the partisans in the war against cancer, "La Resistance." And each of us partisans must also find within us our own weapons. Strength, cunning, style, and grace can all be used in our daily fight against cancer. Such passion is never futile, no matter the outcome, because passion overcomes fear.

Even humor is a weapon against the despair that cancer can cause. My favorite cancer jibe is the woman's T-shirt that reads, right across here (gesturing across breasts): "Of course they're fake. My real ones tried to kill me."

So now, I would like to ask those of you who are currently fighting -- or have fought -- breast cancer or ANY kind of cancer, to now join me by standing...
Please remain standing for a moment and let me thank you. For you did not volunteer for this battle. It's the marathon that we never signed up to run and yet, you are here now and your courage will not be in vain.

And now the rest of you, please stand up as well.

Sisters, mothers, brothers, and lovers! I, WE, come to you in earnest, as soldiers without uniforms, to urge you to stand up and fight with us, to repel these invaders from our native cells, to take to the streets and fields so that we may drive cancer into the sea, to win back our bodies' freedom from this insidious enemy!
With your love and your help, we CAN and WILL win this fight!

Thank you.

The cancer confession...

2009-09-12T10:53:00.000-07:00

Forgive me doctors, it's been 2 months since my last treatment...I finished in July. Sometimes, I can almost forget what I've been through, but now, the "new normal" begins. I'll see my oncologist this month for my first checkup since chemo ended. I'll see my surgeon for a follow-up as well.

I run, run, run during the week without giving cancer a second thought until the fatigue creeps up and bites me in the ass. I collapse. I shiver. I ache. I feel a sore throat coming on. I crawl into bed at odd times for a few hours rest. I don't feel as strong as I used to before all of this happened.

My skin is still dry, my lips constantly chapped and my nails are brittle. I still take an anti-depressant. My digestive system continues to surprise and confuse me. My hair is coming back. I think "Jean Seberg", Evan says "Steve McQueen". I dread "Jamie Lee Curtis".

I see a bald woman at the market and I smile and say "Nice haircut, mine was like that a few months ago." Her partner says, "See, it WILL grow back." I wish her strength as I continue on through the produce aisle.

I have been asked to give a speech as the Honorary Chairperson at the BCRC (Breast Cancer Resource Center) Annual Brunch on September 27th. Me and Rue McClanahan from the Golden Girls. Sure, we're survivors. We survived the treatment. But, we're fighters, too...and we continue...

A blind man walked into a restaurant...

2009-09-04T13:26:00.000-07:00

back to Chicago for one last time...as we finished our Toxo Family meal at the restaurant near Millennium park, I observed a trio of customers being led to their table. All 3 were chic and well-appointed and obviously European. The woman was well-made up and sported a beautiful head scarf, one gentleman was silver haired and well-dressed and the other was muscular, wearing conspicuously nice attire and carrying a long white cane. He was blind.

As we left our table, I whispered to my friend, Gemma, mother of Fin, "I'm going to introduce Zelda to that blind gentleman." I approached the table carrying Zelda and with aplomb said, "Excuse me for interrupting your meal but we just wanted to say Hello." They were extremely gracious. I placed my hand on the shoulder of the blind man and said, "I see that you walk with a long white cane." He proceeded to unfold his retractable cane and replied with a smile, "Oh, is it white?" The ice was broken. I introduced Zelda and told him that she was 3 1/2, learning French and Braille, and walked with a long white cane as well. He took her hand and kissed it. She leaned into his shoulder and patted him to get aquainted. The woman told us he had a PhD. His other friend chimed in, "And, he's a triathlete." We chatted just for a moment and I thanked them for their kindness and inspiration. Zelda said, "Au revoir."

There are little bits of magic out there and that was a moment that I will always cherish...

Our big fat medical vacation '09...continued...

2009-09-03T08:44:00.001-07:00

I thought I should wrap up the summer before I dive into the fall happenings of which there are many. I have so many thoughts/ideas/projects rolling around in my mind that I need to write a bit more often.

So....after our wonderful visit with Bill and Kathryn, we headed into downtown Chicago for our stay at the Hyatt on Wacker. The Toxoplasmosis Study sponsored by the University of Chicago is always so gracious in providing us with our family's plane fare and a night at this centrally located hotel. It just so happened that at check-in we discovered that none other than our favorite president, Mr Barack Obama, was to be appearing in the hotel that night at a fundraiser. The entire place would be locked down early before dinner, so we quickly skipped out with our friend, Margo - who we met years ago during our Telluride Film Festival Days. She and her husband and gaggle of lovely daughters live in Lincoln Park, so we took in the zoo. Zelda wrestled with her stuffed lion, thanks Margo! and Creed whined non-stop about wanting to see Obama. "Why can't I go to the fundraiser?!" Luckily, their attentions were diverted by capable babysitters named Anna, Madelyn and Olivia. That convenient arrangement allowed for the parents to have an evening out at Bruno's latest new restaurant.Margo & Creed waiting for Obama's helicopter...

The next day we were up early to be at the University by 7am. Doctors, nurses, and our favorite: the Oracle - Dr Rima McLeod - to whom we attribute the success and health of our children, were all on hand to put us through the paces. The study should last the lifetime of the children. This was our 3rd trip to Chicago and as the twins get older, the trips will be spaced out a bit but each one involves a developmental assessment, blood work, eye exams, visits with the neurologist, infectious disease specialist, and opthamologists. It's a day's work and despite our exhaustion, we were intent on seeing our friends, Gemma, Rowley and their imp of son named Fin. He is also a toxo baby and we had met them on our last trip to Chicago and immediately felt a bound with this strong, caring and fearless family. The evening was spent at Millennium Park listening to the Symphony and then the entire lot of us descended upon a nearby restaurant. Imagine the delight of the server with 3 toddlers - Fin with his huge smile, crackling and swinging his paper, Zelda needing to get up every 5 minutes to go outside and walk, and Creed demanding his french fries and water and anything else he could get his hands on. It was glorious! And the restaurant staff was extremely gracious...the Toxo Tribe at the Symphony...

We left the next day...as Zelda pushed the double stroller through the airport with her lion in one seat and Creed's tiger in the other...until the next time, Chicago, we love you...

Summer Schedule...

2009-08-17T09:45:00.000-07:00

The twins return to "Ecole" a week from today...and all I can say is: "Betty Draper, I am not." I don't know if you watch Mad Men but Evan and I have become recently addicted. Taking place in the early '60's, when life was stylized, sex roles were well-defined yet daring, and suburbia was thriving. The Draper family is one to be avoided - at least in replication. Betty, the mom, a former model and stay-at-home wife, is a tangled conundrum of emotions. Anyway, I won't get lost in that now...it's best saved for a later look.

The summer seemed to start with the end of my treatment. Up until then, the twins had been in Ecole/Summer Camp. About a week after radiation ended, we hopped a plane for Chicago. I will add that Creed & Zelda have flown many times and this one was better than ever. Creed was chatty and engrossed with any movement and mechanical curiosity. Zelda, fiercely dedicated to her new iPod, could actually tell me when the plane was going up, coming down and turning, through sheer feeling.

We headed directly up to Sturgeon Bay, Wisconsin and thanks to Bill and Kathryn - Evan's friends from college - we had a picture perfect visit at their lake house. They are the best hosts, the boat rides were glorious, the hikes were cool and the meals were relaxing. Almost felt like a vacation, despite the fact that we were all constantly chasing the almost 4 yr olds.
After basking in the cool temperatures (n.b. Austin is on Day 55 or 58 or more of 100+ degrees), we headed down into Chicago to spend some more time with Bill & Kathryn at their home. Days were spent at the Botanical Gardens, Creed & Evan played - or more likely observed - golf with Bill & his son, had a little beach time and took a day trip into almost Iowa to look at an old movie theatre that needs Evan's restoration expertise.
to be continued...

The "New" Normal...

2009-08-09T10:48:00.000-07:00

I haven't written in a while. I finished all of my treatments for breast cancer exactly one month ago today. 3 surgeries, four months of dose dense chemotherapy and 7 1/2 weeks of daily radiation. I have been pricked, poked, fed multitudes of pills, had poison shot through my body and wreak havoc on my system, been fried daily by laser radiation through layers of skin until it hurt and peeled...oh, there's too much more to even mention. But I am here and supposedly cancer free. Hmmm...do I believe it? I guess so.

The morning of my last radiation treatment and I got into the car with Evan to drop the twins first at Ecole, and I started weeping. I cried and couldn't stop. I had no words. I cried through the treatment and cried when Dr Dzuik gave my my "award": a plaque that reads "Courage is being scared to death, but saddling up anyway." - John Wayne. He died of cancer.

So, the "new" normal is here. People ask how I am doing. I feel fine, although I tend to push myself too much and I exhaust easily. They say my hair regrowth looks great and that the short hair is flattering, I say: only if it's one's own choice. So, I go forward, move on - most days without worry, without fear. But sometimes, it's there...

Credence Paul, M.D....

2009-07-07T12:42:00.000-07:00

Creed:
"Momma, lay down here he-a."
(He motions to the couch).
"I'm your doct-a and I want to make you safe."
(He then uses the end of a jump rope to listen to my heart.)
(He then goes across the room and picks up a half-deflated balloon and places it on my stomach).
"This is your breast cancer and I make you bett-a. Ok, Momma?"

Me:
"Okay Credence, thanks..."

I finish my cancer treatment in 2 days...

An Independence Day challenge...

2009-07-04T13:54:00.000-07:00

Can you free yourself for just a moment today from your dependence on experiencing this very visual holiday through site? That is: close your eyes tonight while you're watching the fireworks. Try and experience the sound, the smell, imagine the dark sky, have a friend or family member describe the colors or shapes of the exploding lights way above you. Or sit at a cook-out with friends and close your eyes: listen to the multi-layers of conversation, the clanging of tools on the grill, the smell of cooking vegetables or meat or even your own crunching of a bite of chips in your mouth. Can you find that bowl of salsa or pour your drink without overflowing the glass? What music is playing? Is someone having a one-sided conversation on a cell phone? Did you hear that car door slam?

Welcome to Zelda's world...try it...study it...don't be afraid to enjoy it...
Happy Independence Day...

Nike Lance Armstrong "Driven" Commercial

2009-06-29T14:51:00.001-07:00

I am really proud to be a part of this national campaign sponsored by Nike and Live Strong - the Lance Armstrong Foundation. It's a powerful TV commercial and it premiered last night on all major networks. See it tonight during Conan & Letterman...and yes, that's me: the bald one pulling herself out of bed...

p.s. 7 radiation treatments to go, but who's counting...

Ah, ha!...the video

2009-06-19T12:58:00.000-07:00

the beach

2009-06-18T09:35:00.000-07:00

Somehow our family photos always look like this...let's just say we're not exactly ready for Sear's Portrait Studios. Although, the idea of a perfectly smiling family with blank expressions dressed in coordinating outfits against a surreal backdrop kind of intrigues me.

The beach turned out to be fun. It's not a bad ride to Port Aransas, just about 4 hours and there's not much traffic on back roads. The twins were giddy with excitement but of course grew impatient after hours in the car. Then we arrived at the ferry. We had tried to prepare them, warn them of the noise, the movement & such. But they both freaked out - "we don't like this", they cried. "Make it stop!" Every step of the way was a test in our ability to describe each detail to Zelda - from the cows in fields to the causeway, from the gulf water to the gates opening as the ferry landed. I kept wondering what she was thinking - how does my little girl process all of this information? So many news sounds, new smells, new feelings of ocean wind on her cheeks.

The first day on the beach saddened me. Creed was running, playing, trying to catch seagulls. Zelda was miserable. She wouldn't even put her feet on the sand. The waves were roaring, children were screeching in the surf and Z wanted no part of it. I imagined closing my eyes and going through an amusement park fun house with all of the strange and startling noises. Zelda liked the beach house and we slept soundly after an evening at the marina. She climbed the steps to the tower at least a dozen times.

And then the next day, we started slowly. She sat on my lap on the blanket on the beach. Then we carefully took a walk through the sand. I described every detail as we walked to the water's edge. We stopped at a tidal pool and I explained that it was a puddle and I jumped with her until she felt comfortable enough to enjoy it herself. And then we ventured across the packed, wet sand into the surf. She giggled and was surprised as the water washed against her skinny little legs. Creed & Evan were a long way off down the beach in and out of the water and taking time to build a sand castle. Zelda took my hand and we walked along the water. I told her about the tides and we imitated the sound of the gulls. She declared that she liked the beach and splashed and played in the water.

I wish that I could figure out how to post the video that I made of our time at the beach...but for now, you'll have to settle for photos.

Only the good die young...

2009-06-17T14:09:00.000-07:00

...I know that it's not true, but sometimes, especially in this past week, it feels this way. I met a woman once - during the Art Bra Fashion Show just 2 months ago - she was a bra model that evening along with many other breast cancer "survivors". She was petite, pretty, friendly and wore a silky brunette wig. She became my friend on Facebook and that's the last I ever saw of her. She died last week of breast cancer that had spread to her brain. She was 43 and a single mom.

And then last night, we were gathering to raise funds for the care of the legendary Austin jazz singer, Tina Marsh. She was a force to be reckoned with, a true artist devoted to her craft for over 30 years. She was fighting through her second or third round of breast cancer. We arrived at the concert and found out that she had died a half an hour before.

I've talked to Evan about these women. It scares me, angers me and saddens me. He says that unfortunately there are always a percentage of those afflicted that will not survive. And then he said something like this, "It's sad, it's unfair and unfortunate, but for every one that dies, they fill the percentage of casualties and that means that you'll be among the survivors who live."

I don't want to be just a survivor. I want to be a fighter. 'Survivor' somehow connotes passivity, inactivity...hope. For me, it's like the French school of existentialism who didn't believe in the word "hope". The word or act of "hoping" meant that you were holding back and waiting and not actively involved in defining your existence. I want to be involved, I want to define who I am, I want to fight. It scares the shit out of me, this cancer thing, this chance of recurrence. But, I vow to be a fighter...

Just do it...

2009-06-08T09:35:00.000-07:00

...so, I did. I'm in a national TV commercial. About a month ago, my friend Erin, who happens to own a very successful casting agency here in town, sent me a message about an audition for people with cancer in treatment or cancer survivors. Let's just put it this way, the casting call was for a commercial for a very well-known sportswear/shoe company and their cancer fighting ally: LiveStong with Lance Armstrong. So, I went and talked to the camera about my story and then heard nothing. In the meantime, the kids were finishing school and I was dying to take the 4 day weekend at the beach. We were to leave last Thursday...

Of course, late Wed night, I got the call. It had taken the director until that evening to decide on the cast. They wanted me to come in and be an extra the next day. "Pshaw," I said. "Why cancel my plans for the beach if I'm not a star?!!" Well, Evan and my friends said, "It's Nike! - and it's for cancer awareness - just show up for the damn thing and leave for the beach a day late." So, I did and they didn't use me on Thursday afternoon. BUT, they did pay me as an extra and sent the other tall, thin bald woman packing and asked me to return the next day at 7am as a principal. (NB: our time at the beach is getting shorter and shorter).

As it turns out, the 'extra' thing was just a ruse to get another look in person at me and my competition. The director wanted someone bald, thin and sickly enough - enter me, woo-hoo! - to lie in a hospital bed and....sshh! the rest is a secret. I now have a SAG card, can say I worked with this wonderfully famous director of TV commercials and will be seen all over America towards the end of this month and into early July before Lance launches into his next Tour de France. And we left for the beach by 3pm last Friday afternoon.

In the meantime, today I was interviewed by a national magazine (as will the rest of my family) for a story to be published during Breast Cancer Awareness Month this fall. More to come...

2009-06-03T08:46:00.000-07:00

Weirdness and curiosities...

2009-05-24T07:27:00.000-07:00

1. Ever since I've been through chemo, I no longer perspire the way I used to. That's not to say that I don't sweat. I often wake up in the middle of the night with a clammy head and back of my neck. BUT, I don't perspire under my arms and have absolutely no body odor in this heat...weird

2. We took Zelda to the neurologist the other day for a check-up. She's doing well except for her sometimes very difficult 'pissy princess' routine and the fact that she doesn't want to go to sleep at night. She'll get quiet, lie down and go through the motions then it's up and party time sometimes until midnight! Several things may be going on here but one that her Dr Mike suggested is that due to her blindness, she doesn't acknowledge the darkness and therefore her brain does not release melatonin. So, we have started her on a mild dose of melatonin - mixed in a spoonful of applesauce - each evening about a half an hour before bedtime. So far, so good. And no hangover as of yet...curious

3. My Mom has finished her 33 radiation treatments but has developed a strange pain in her head. Her idiotic GP called and said there was an 'abnormality' in her blood work and my Mom, being the 85 yr old in denial, didn't want to know what it was and just went for the brain MRI with no questions asked. So now we are waiting until after the holiday weekend for the results. She thinks it's shingles...weird, curious, and a bit scary

4. Manu has gone back to Paris after his usual 2 week stay and my brain is still running in French. We talked of politics - Sarkozy & Obama - film, television, neighborhoods changing in Paris, old friends, child rearing, relationships and thankfully not so much about cancer...not weird at all

5. Creed latest phase is hanging out with his 'guys' i.e. his stuffed penguin, puppies, horses, etc, the employees at Jo's, or his favorite guy, his Daddy...normal, I guess

I hear Zelda in the next room singing Amadeus by Falco...gotta run

Yo...rads!!

2009-05-20T09:41:00.000-07:00

...so, before I tell you about the start of my radiation treatments, I need to mention the article that appeared in this past Sunday's Austin American Statesman:

http://www.statesman.com/search/content/life/stories/other/05/17/0517chovan.html

Marques Harper called me a few weeks ago to talk about my fight with breast cancer and how it affected my family, my work, my style...my life. He turned it into an amazing article that both overwhelmed and humbled me. I hope that you are able to cut and paste in order to read it because I don't know how else to get there.
The article ran along with an almost full page portrait taken by Laura Skelding as well as photos of the women in my family, Evan with me & the twins and a pre-cancer photo of us as a couple.

In addition, I have had calls for an interview from a national magazine (sshh!) and yesterday I had an audition for a national TV commercial. I doubt very seriously that I'll get the latter but it was fun to be considered and also ironic that the woman auditioning before me was tall, thin and bald...oh, I am soooo not unique!

But life goes on in the cancer treatment world. I started with the first of my 33 treatments of radiation this morning. I will go every Mon-Fri (except holidays!) for a little over 6 weeks - so to be finished around July 8th!!! The first 28 of the rads will be aimed at the whole breast; photons or x-rays shot at the area in a rectangular shape. The final 5 will be electrons shot straight in and focused on the tumor site. Major side effects can include fatigue and skin changes - burning or tenderness of the radiation area. I am already exhausted so we'll see about the fatigue.

Years ago, my dear friend Seth brought me 24 black bangle bracelets from India. I have added to them another 9 and put them on my right arm symbolizing my 33 days of radiation. After each treatment, I remove one and pass it on to someone in my life...I'm off to give away the first one right now...

Swept away...

2009-05-13T14:12:00.000-07:00

Children learn visually. They say that over 90% of what kids learn in the early years is by imitation. Toddlers want to use a fork to copy Daddy. They want to feed their dolls because they see other grown-ups feeding babies. They want to sit on the potty to be like their classmates at preschool. Except for blind kids...they don't have the powers of visual imitation. Zelda doesn't like to use a fork as it's easier to eat pasta with her fingers - makes sense, doesn't it? She doesn't play with her babies instead she listens to music. She's starting to use the potty because we talk about it a lot and I have her sit on my lap as I use the toilet...

BUT, Zelda is really into asking "What are you doing?" The other day, I was sweeping the floor. "I want to sweep," she said. So, I handed her the broom. As she explored every aspect of the broom, from the long handle all the way down to the plastic rim covering the bristles, I described every detail and she repeated the words. She then squatted and dropped the broom on the floor, turned it upside down and sideways, put it near her face, and stood back up. She grasped the broom in her two tiny hands and I helped her position them, one above the other to control the handle. I stood over her like I was teaching her to swing a golf club and we practiced sweeping. We would say "sweeep" in a sing-song voice and she would giggle with delight.

Next came the dirt, we knelt on the floor and felt crumbs and abandoned spaghetti - I told her how we wanted to make a pile of these things and we could "sweep" them together. This was the hard part as I wondered how would she know without feeling on her hands and knees where the dirt would be on her dorm room floor in college? Anyway, we swept the dirt into a pile and knelt down again to feel it - always with the broom at her side. In the pile of dirt was a piece of old popcorn - she put it towards her mouth: "No!", I said and explained that it had fallen onto the dirty floor...

I brought out the dustpan, Zelda banged it, dropped it, felt every edge and nook and cranny, every ridge and indentation of the metal tool. We squatted and felt the dirt, put the dust pan into position, kept one little foot on the dustpan and proceeded to sweep the dust into it. Well, we kind of succeeded - at least she was thrilled! She walked with the dustpan in her hands over to dump the dirt into the poubelle...a half hour later and with focused concentration, Zelda grasped the concept of sweeping.

Later on, Creed went down to my shop and he saw Brittnie cleaning the counters with glass and towels. "I want to do that," he said. Within 30 seconds, he had picked up the 2 appropriate tools and cleaned every surface in the store....

Sigh...

P.S. My cancer treatment update: surgery for port removal on Friday, meeting with radiation oncologist on Monday...being swept away...

Marchin' for babies...at the Rodeo...

2009-05-09T11:35:00.000-07:00

Each year, since the twins were born prematurely, we have assembled a group of family and friends and participated in the "March for Babies" on Mother's Day weekend in order to raise money for the March of Dimes. This organization works tirelessly as they fund raise to support prenatal education and testing for those yet-to-be-born babies. The idea is that with more awareness, we can decrease the number of births of premature babies and help mothers carry their pregnancies to term. Of course, some premature births - like Creed & Zelda's - were/are inevitable, and the March of Dimes helps with research in the fields related to early birth problems.

So, every spring we form the Team Toxotwins and walk to raise money for this organization. I never want to forget and always want the twins to understand how many doctors, nurses, supporters - friends and strangers - it took for them to be where they are today.

This year we didn't march due to my extreme fatigue from the chemo treatments - but we did walk around the block to Torchy's Taco Trailer this morning for breakfast! Manu is here from Paris and Evan & Jason took the twins out to Abilene. They went to their first Ranch Rodeo last night and today are visiting with the 'good ole' boys' who set up at the Bit n'Spur Show. So, Creed & Zelda are on a road trip visiting Grandma, eating bar-b-q, buying old cowboy boots and Mom gets a break: feet up, peace & quiet, and every now and then, thinks about what she'll have for dinner...

Out the door to Ecole...

2009-05-06T07:25:00.000-07:00

Alarm goes off at 7h10am...we hopefully roll out of bed fairly quickly. Usually one twin has somehow ended up with us already throughout the night and the other sleepily finds their way in...Zelda wants O's and music, maybe toast and milk. Creed - well - he likes to change his mind at least 3 or 4 times, finally settling on some cereal, juice and playing with his trains. Lots of chitter/chatter and singing. Mommy picks out their clothes. Daddy dresses them while Mommy makes their lunches: a protein, a veggie, a fruit, a drink and lots of crunchies.

Clean their eyeglasses, wash their hands & faces, brush their hair...out the door with Daddy by 8h00am.

Lunch boxes - check
Jackets - check
Zelda's cane - check

We try not to forget anything. Do you think if Zelda decides she wants a service dog when she's a teenager that we'd ever forget it as we go out the door? Probably not.

It's over, it's over now...Chemo #8

2009-04-29T09:41:00.000-07:00

at least the chemo part is...arrived at the office at 9h30 and met with Dr H. Went over tons of questions. Even with the chemo and rads, with my Triple Negative diagnosis, I still have a 15% recurrence rate over the next 3 years. Shit. So, there will be a lot of testing going on and lots of dr visits, scans, etc.

Yesterday was a good day, despite the massive amounts of drugs: they hooked me up to a saline drip, then administered a double dose of benadryl (yawn!), anti-nausea & steroids, my legs began to switch & squirm so they shot me with Ativan, and finally my last 3 hour drip of Taxol - woo-hoo! My friend Deborah woke me up with a surprise visit and Sandy, another survivor/fighter was there for a treatment. A friend of a friend, Patty, was in the spa longer next to me getting her last treatment. Evan arrived with flowers and champagne for all...the nurses threw confetti, I received a certificate. And then the best thing ever was ringing the bell on the way out the door: so many cheering, clapping and smiling faces from the other cancer patients still in their chairs. Evan, Deb and I went and had pastries and then to pick up the precious little imps we call Creed & Zelda.

Today, I have to go buy another car...not really...but that's what Evan's calls my Neulasta shot. The last shot at $7600+. Each time I receive that shot in my belly, Evan will say,"That's a KIA" or "That's a Hyundai"...I think I'd prefer a SMARTcar. What can $61,184 buy these days?? But it is my LAST NeuLASTa shot so I expect those nasty SE's to set in tonight or tomorrow. So, it IS over, but not really...

Tick, tock...

2009-04-27T15:11:00.000-07:00

...tick, tock. Less than 24 hours until I go in for my final chemo infusion. And can I just tell you how tired I am of taking pills? These are just a few examples...

Not dead yet...

2009-04-23T11:47:00.000-07:00

So, yesterday as I stood in line at the pharmacy to refill one of my many prescriptions, an elderly gentleman looked at me and smiled. I knew that he knew what was up. I never wear a hat, wig or head scarf, as I prefer going out bald. He asked me how I was doing and I replied "I'm OK - for now". He responded "Me too, I'm not dead yet." And then we just both started laughing. "Me neither."
It reminded me of one day a year or so ago as I passed through security at the airport going home from somewhere. The officer looked at my boarding pass and my ID and said "Are you doing OK today?" As I was returning home from a heinous business trip, I responded "I'm great!" He then asked "No regrets?" and I answered "Aside from having slept with a few people in my past that I shouldn't have...I have no regrets. If I hadn't made the decisions in life that I did, or taken certain chances, I wouldn't be where I am now. I like my life." He told me that I made his day and I walked off to the gate.

So, that gets me thinking: What if I... hadn't gone to the college I attended? hadn't broken up with a particular boyfriend? had decided to take that teaching job on the small island off the coast of Maine? had never moved to France? This life that I love would be totally different...I probably wouldn't be married to Evan, have my shop and have my 2 wonderful children.
BUT, would I still have cancer?...

Countdown begins...5 days until chemo #8: the final treatment.

I'm liking this photo, etc...

2009-04-17T08:56:00.000-07:00

- I like this photo taken by our friend Todd...I look fairly happy and carefree and Evan & I are holding hands.

- On Tuesday, I had my 3rd Taxol treatment (#7 out of 8 total) and am now dealing with the aftermath...side effects after the Neulasta shot include sore skin, achiness, extreme fatigue and then other loveliness like: the soles of my feet are peeling, my finger nails are looking really scary and I am so very afraid they'll fall off, my hands ache and my taste buds are shot to hell. Nothing tastes good...if I even get a craving for something, I immediately try to find it to satisfy at least a small bit of this constant dissatisfaction. Yesterday, Evan went out and found me a bacon cheeseburger. Now I am about to eat some saffron orzo.

- I have a little less than a month of chemo remaining - that is, only 1 actual treatment but the 2 weeks following are far worse than the infusion. On Tuesday, Dr H went over the schedule and basically said that after the last chemo and the 2 weeks of side effects, I'll be expecting to feel great. Well, no...it doesn't work like that. I'll still feel tired and shitty. Oh, and there's still surgery to remove my port and then radiation for 6 weeks. So, things may be lightening up in July.

- I need to escape and go off somewhere...and find something that I want to eat or drink, besides Coca Cola.

- It's pouring rain - which is wonderful - but there should be a huge Hot Rod show in town this weekend which means $$ at the shop. We'll see...BUT, at least the twins had their farm field trip yesterday. Creed likes chickens. Zelda likes cows. She says they say "Moo" and eat strawberries and spaghetti. Cool.

- Friends arrive from Marfa tonight to stay in Terminal B (our guesthouse)...so far this winter/spring we have had friends in town from: Colorado, Connecticut, Dallas, Pennsylvania, Switzerland, New York and soon West Texas and then, France.

- This weekend includes: Starting with last night - the opening of a new seafood restau that Evan worked on. Hot Rod show tonight on the street - my shop stays open 'til 10pm and we'll serve margaritas. Saturday: another set of twins' 4th birthday party, art opening for artist friend from Marfa at Yard Dog, Breast Cancer Resource Center's annual fundraiser: Graphic 3. I'll be modeling an "art bra". And finally the Speed Shop's having a party featuring the Reverend Horton Heat and a ton of people.
Want to take bets on how many of these events I'll actually attend?

- My little sis started chemo yesterday and Mom has done 2 or 3 weeks of radiation.

LiveSTRONG...

a postmodern easter...

2009-04-13T08:59:00.000-07:00

...forget to prepare Easter baskets for your kids, grab some empty containers of tupperware, throw in some shredded grass, put in a chocolate egg or two...then dress them in some snappy clothes and go out and buy ice cream...

P.S. Treatment #7 tomorrow...a month left of chemo, then surgery, then 6 weeks of radiation - end in sight? I'm squinting to see it...

Creed's nanner...

2009-04-08T21:21:00.001-07:00

Explication de texte: The twins take a walk in the 'hood each evening - don't worry, they are always accompanied by one or more parents or adults. Anyway, both of them basically have everyone on the Avenue wrapped around their little fingers but Creed has a special relationship with the guys at Jo's. One barrista in particular always saves him a banana and Creed worships him. The other night, Shawn, who also happens to resemble Duane Allman in that only-in-Austin-can-I-get-away-with-this long haired, bell bottomed look, wanted to make sure that Creed got his evening snack so he labeled it "Sold" or "Creed's nanner". Creed was thrilled and Evan brought home the peel so that I could take a picture.

Le Fabuleux Destin de Zelda Nicolette...

2009-04-07T11:10:00.000-07:00

...cue the circus calliope-like music:

La petite Zelda is 3 1/2, adorable, feisty and fearless. She awakes each morning, sometimes in our bed and sometimes in her own. No matter, as she is always happily sporting a tangled mess of blond hair, closed eyes and a huge grin. She's always silly and chatty in the mornings - eager for Cheerios and a specific choice of music. She spends each day at Ecole, has 5 therapies a week: speech, pre-Braille and O & M. She can count in French up to 20, likes to take walks, and loves her music.

As of now, we don't know what Zelda can see...since she was born, the question has remained unanswered. She has had at least 8 eye surgeries (I've lost count) - all in California. She has had a lensectomy, a few vitrectomys and several retinal reattachments. Sometimes the drs say she may have light perception in her "good" eye, the right one which is smaller. They say there is most likely no sight in her left. She rarely opens her eyes but she does understand what to do when I ask her to do so. When she does open them, they are a piercing blue and each goes in a different direction off to the sides. I guess I figure that if she was seeing anything she would want to keep her eyes open all of the time. Luckily, Zelda has excellent "mapping" and traveling skills. She obviously knows our little bungalow inside and out but then there's the neighborhood: "I want to go outside", she says. And from there, she'll take her long white cane, head onto the porch, down the concrete steps (no helping please!) and off into the direction she has chosen. Down the driveway, down the hill to my shop, up the sidewalk, over to the gate and down the steps, off to Jo's for coffee...she'll tell you. She uses sound, echolocation, feels for curbs with her cane, often bends over to touch the terrain with her hands.

Yes, la petite Z is amazing and a joy but this is not to say that life is always peachy here on Nellie Street. Zelda can be pissy and determined and an absolute tyrant at times. She has learned to scream, throw things, refuse to speak or apologize, and manipulate others. If Creed leaves the tricycle in her path and she trips on it, she becomes the angriest 3 year old you'll ever encounter. There's no pacifying her. She's pissed. She has a way of charming you and driving you crazy at the same time. She'll repeat the word "Mommy" incessantly until I want to pull my non-hair out of my stubbly head. Somedays she'll only want to eat O's and drink tea...other days, she'll throw her lunch tray and get sent home from Ecole. Yet, she's silly and giggly and smart as a whip.

Zelda's new games include opening the refrigerator door and standing there with it ajar while she takes one bottle out at a time and places it on the kitchen counter. With each bottle she'll ask Daddy, "What's that?" "Maple Syrup" "What's that?" "Ketchup" "What's that?" "Soy sauce." Then, one at a time, she'll carefully return each bottle to the approproprite shelf, while naming the product. And repeat. Our energy bills are soaring. now it's time for me to start labeling the groceries in Braille. She also likes to go into the pantry and look for specific items: O's, cookies, Pirate Booty, veggie chips, etc. - note to self: also need to Braille those items. Zelda is way into loading her CD player with her music of choice - need to Braille those, too - and she tortures us while experimenting with the volume control.

People that meet her say that she's magical, others like her lips, or marvel at her agility. Mostly they're curious. It's funny though, as a parent, you want your kids to feel loved, feel happy and feel special - but not too special. Some of us just want them to know that they're just like any other little kid...

Now it's time to go and start brailling everything in the house...

"Stop Copying Me!!"...

2009-04-02T06:10:00.000-07:00

...AKA "You're just jealous of my success!" My older sister, Shakti, had a dear friend, funny friend in the eighties who always used that saying - kind of snarky, kind of silly and we use it to this day. So when the other day, we found out that our youngest sister, Lori, had been diagnosed with breast cancer - yes, it's true - I just had to call her and yell at her. She's just jealous of my success...always wanting to copy me...

So, what do we do now? I was diagnosed in December, Stage I, Triple neg, had a lumpectomy, had my chemo #6 this past Tuesday. 2 more to go, then radiation. Mom, 85, was diagnosed in February, Stage II, ER/PR+, had a lumpectomy, will not do chemo and begins radiation any day now. Lori, 45, got the results of her biopsy as I sat in my chemo chair. She called me crying. The tumor is larger than mine or Mom's. They want to immediately put in a port and start her on chemo first in order to try and shrink it before any surgery. No staging or other pathology results yet. Needless to say, Shakti is freaked out. How did she escape the bullet? Or hasn't she? How does this all happen at once to one family? My genetic testing of the BRACAgene came back negative last month but I guess there are other mutations that need to be examined. Our family is reeling...

Chemo #6 flowed through my veins for 6 hours, then a neulasta shot yesterday. Have done 2 photo shoots for the Art Bra Calendar. More friends, Jerry & Mary, arrive from NY tomorrow for the weekend. Hopefully this round won't hit too hard as we have tickets to see Springsteen...just need an injection of that New Jersey fight back into my veins...

I don't have cancer...

2009-03-27T06:19:00.000-07:00

I have chemo...and I am ignoring it. If I wasn't going through treatment, I would never know I had cancer. But the side effects after Taxol were tough, really tough and when they hit, 2 days after the infusion last week, I was on that damn rollercoaster. Coming down off the rollercoaster was equally as difficult. So when I started feeling better, I, of course wanted to be productive.
So...Monday I went for my bra fitting - fairly amusing for someone who has never bought a bra in her entire life! The Breast Cancer Resource Center does a calendar and fashion show each year featuring women/survivors wearing some amazing art bras created by local and national luminaries. The runway show is April 18th - I'll post more info soon.
Tuesday...I was knocked on my ass again and slept, but also worked a bit.
Wednesday...they sent Creed home from Ecole with a 101 fever...he didn't seem to mind at all and wanted to play outside. Evan and I started to clean up the guest house for Karen, Mike and Zoe who arrive from PA today!
Thursday...arrived at UT's fashion dept at 9h30 and was there until 1pm. Each year for the past 8 or 9, I have helped critique the seniors' apparel design portfolios. It's interesting to see their progress as well as the growth in the program over the years. Their technical skills have definitely improved but there still seems to be a lack of understanding in deriving inspiration, building a collection as well as being able to verbalize and fix upon an idea. They are missing the point of the process...I go back with other judges in 3 weeks to decide on final awards before their runway show.
Whoops - I almost forgot: yesterday was my birthday:) Evan and I snuck out for dinner at Olivia, the wonderful restaurant owned by our friends James & Christina. We were treated to an amazing meal and Gracias Cynthia! for taking care of the twins.
Friday...our friends from PA arrive today - woo-hoo! We miss them and haven't seen them in a year and we'll meet 1 1/2 yr old Zoe for the first time.
Saturday...Oh my...I am sitting on a panel at the Blanton Museum for their new exhibit "Birth of Cool"...there will be 6 of us responding to questions about the birth of cool, its manifestations here in Austin, how is it's defined...hhmmmm.
Also, there's a kids' birthday party, an open house for our guests and I am sure something else.
Sunday...Evan and I hope to go out to Warrenton/Round Top - the big antique show/flea market that happens twice a year. Rows and rows, miles and miles of vendors and dealers and friends selling their treasures. We rarely miss it and have taken the twins with us several times. I like it better than the Rose Bowl Flea Market as it is in a little Texas town in dusty fields and tents...

All of this has/is happening before I go in next Tuesday for more chemo, I mean cancer, I mean chemo...it will be #6...

Rollercoaster of Pain...

2009-03-22T14:30:00.000-07:00

...no, it's not a band featured during SXSW. It's how I feel. After my 1st Taxol experience this past Tuesday, I felt great despite the long day. And the next day, I felt great as well. I painted my store window, I received merchandise and talked to customers. When the nanny arrived, Evan and I got dressed up and went to the Austin Music Awards. Good music, good people...our friend Alejandro Escovedo was receiving several awards and we love hanging out with him, his wife Kim and the rest of the entourage. But as the night dragged on, my skin started to hurt. Yes, you heard me correctly. First in my abdomen, then my thighs, the backs of my arms, my calves and so on...if I touched my skin, it ached. So very strange...The next day I awoke and the soles of my feet burned as I walked to the bathroom. The bone pain had begun. As recommended, I had been taking 2 Aleve every 8 hours or so, but now I added some more serious painkillers. Thursday was an aching, on and off painful day. I cloistered myself in my studio and worked alone. Friday was even worse but I did try and engage myself at the shop. That night was Alejandro and his orchestra over at the San Jose...a beautiful night outdoors and the kids had been waiting for this show all week. Luckily we avoided the crowd by sitting next to the stage with Kim, Mickey, Laura, Michelle and others. Creed got to experience his first real adult concert up close and in person. Despite their past-bedtime exhaustion, he clapped every time and Zelda sang along to the songs from "Real Animal". (On the other hand, I took them to see Exene Cervenka at Yard Dog earlier in the week and Zelda simply said "Turn it off.") However, with each passing day, more music and a steady stream of customers at the shop, my fatigue increased.

Today, I am so sore and in bed. Evan took the twins to a guitar show this morning and Jason took them to a poster show this afternoon: the final events of their musical spring break of SXSW. Tomorrow they return to Ecole. And tomorrow I hope this pain will dissipate. I find suddenly that the joints of my fingers will have sharp pain. It will go away and then my hip will ache. I'll re-adjust my position and the fronts of my calves will feel like someone is sticking needles into them. My lower back will be sore. Next I'll writhe in bed to lessen the total body pain. Then it slows down and I'll get up for a bowl of soup. Up and down, turning corners, moaning and groaning and holding on...the roller coaster.

And tomorrow, I'll go to be fitted for the Breast Cancer Resource Center's annual fundraiser. It's an Art Bra runway show. Don't know much else about it but I guess I'll be on the catwalk strutting bald this spring...

Three strikes...

2009-03-19T16:29:00.000-07:00

...Me...Mom...now my younger sister, Lori. She has a lump. The ultrasound reveals it is irregular and suspicious. It's not fluid filled. It's larger than mine was, or my Mom's. Dear Dr Smith, my Eagle Scout surgeon...can I get a commission for referring patients to you? Sorry but I have to say it: What the fuck????

Spa day...Chemo #5

2009-03-17T22:19:00.000-07:00

So today, I spent 7 hours at the chemo "spa". My dear friend Deborah who shares my diagnosis of Triple-Negative breast cancer and has the same protocols as me, calls her infusion room the "spa". So Deborah, mon amie, I'm stealing your name for "that place".

I arrived at 8h30am yesterday, signed in and was met by Daiquiri (yes, that's her real name - like the drink). I was weighed and my temperature was taken. She led me into the exam room where she then checked my blood pressure, took my pulse and asked me about all of the pills I am currently taking: L glutamine, Alpha-Lipoic Acid, B6, Probiotics, Lexapro daily, and then there are the anti-nausea meds for the 3 days after chemo: Kytril, Decadron and Phenergan in case of emergencies. There are also pain killers like hydracodone if needed. Now mind you, I hate taking pills!! My favorite nurse, Candi, usually then accesses my port-a-cath with a needle, draws blood, and hooks me up to go into the infusion room. However today, Candi was unavailable and I had another nurse. Before I even leave the house in the morning for my appointment, Evan treats my port site with a numbing cream and then tapes a cover of saran wrap on it keep keep it clean and warm. By the time Candi accesses the site, it's numb and pain free. In 4 treatments, it has NEVER hurt! However today, new nurse made a big deal about pressing on the port (my little alien), cleaned it profusely and then jabbed the needle in crooked. It hurt, oh yes it did! The Rock Star, Dr H then comes in to discuss my past 2 weeks since I last saw her, answers all of my questions and tells me new stuff....then, it's off to the "spa".

Today, I had to choose a recliner near the nurse's station as I was starting the second part of treatment, a drug called Taxol. My days of the dreaded A/C are over. I now have 4 rounds of Taxol, once every 2 weeks for 8 weeks. Taxol is made from the branches of the yew tree and can have severe allergic reactions in some people. The first round is done very slowly. First, I set up my "spa" site...I removed my shoes and put on my cozy socks, I got out my blankets, had my reading material, cell phone and computer at hand. I had my lunch and drinks ready. Evan set up his work table next to me. The nurse explained the new drug and the possible anaphylactic shock-allergic reactions they would watch for...great...At 10am, the infusion began - an IV line attached to my port-a-cath. The port is about the size of a quarter and is a plastic stopper that was surgically inserted in January before I started chemo. It is under the skin just below my right collar bone. It is painless and since I am boney, you can see it clearly. So today the infusion began with a double dose of benedryl to combat allergies followed by a dose a anti-nausea Decadron. Then they start the Taxol drip - the first one is very slow. They watched for every reaction. After about an hour, I started to have severe hot flashes. The taxol both fights bad cells and rebuilds white blood cells. It's a foreign substance entering my body, so my system spikes a fever. The body accepts it, the fever breaks and then I have chills. This happened every 15-20 minutes and it even woke me up. I slept, I dozed, I read nothing. The nurse stopped the infusion and let me recover but then dripped in it more slowly. So from 10am to 3h30pm, I sat in my very elegant naugahyde chaise lounge and was infused. Thank goodness, I didn't have any itching, flushed face, intense back ache, heart palpitations and heaviness in the chest or difficulty breathing. I am scared to death that my finger nails or toe nails may fall off by treatment #7. I can do chic/bald but missing finger nails creep me out!

Anyway, home by 4pm...spa day my ass! So where was my pedicure? my manicure? my mud wrap? my hot stone massage? Maybe next time...

Et ensuite, la petite Z...

2009-03-13T06:21:00.001-07:00

Aside from her major meltdown and being sent home from Ecole yesterday at noon (yes, really...apparently she threw her lunch 3 times), "Zelda is blossoming". Those were the words of Madame H. Ever since her latest seizure, she's been chatty, interested, social, silly and overall, happy. Now mind you, Zelda can be an opinionated, willful little pissant. But overall, she's a delight. The therapies seem to be working and Ecole is more than willing to receive her team of specialists into their environment, even when the Braille teacher doesn't speak French. She's even learning to count with an abacus!

Zelda's latest adventure is going to Speech Therapy. Each Monday, Evan drives to Ecole, drops off Creed and then continues on to a nearby elementary school where Zelda meets with Miss Sally and other toddlers for a half hour of speech. At 9am, ma petite puce leaves the classroom with her long white cane, boards the bus, gets strapped into her carseat with the help of a traveling aide and then they drive her back to Ecole. She is the envy of all the students in preschool. Zelda gets to ride a bus by herself! Zelda gets to go to another school! It's all so mysterious - they run up to her and hug her and welcome her...which leads us to another therapy: socialization. Andrea is her TVI - as I've mentioned before. She goes to Ecole 2x/week to work on pre-Braille with Z. On a 3rd afternoon, Andrea works with Zelda and the other kids after school on "How to play with Z". Zelda obviously doesn't have the visual imitation skills of seeing children. Her imaginative play is almost non-existent at this point. Her play tends to be functional: sorting, building, working...As for the other children, they tend to see her as an adorable little doll. They want to do everything for her, sit her on their laps, lead her by the hand. She tolerates it for a bit but is far too independent for that. On play dates, she stays by herself with music or leggos or a puzzle. She is just starting to interact with other kids but only on an as-needed basis. She'll say hello, give a hug or a "bisou: and say their name. She's much better with adults who can direct her play and are patient. The other kids run, move quickly and lose interest. So, Andrea is working on all of this with them. The other day, Andrea had a tea party with the children. She had the other kids close their eyes and pass around the tea cups. They are learning to identify themselves to Z and put things directly into her hands when sharing. Whew...it goes on and on...it will get more difficult as she gets older. Children will become more judgmental and more exclusive as opposed to inclusive. I just hope we can prepare both of our kids with the necessary tools to withstand the socialization process. I just hope we can prepare ourselves.

CPCV...an acronym

2009-03-11T15:42:00.001-07:00

So, a few weeks ago, Evan and I attended the twins' Parent-Teacher conferences at Ecole. Despite the fact that we see our children as wonderful and "normal" in their own little ways, we are always filled with the dreaded: "Are they going to kick us out?" However...this time it was the: "Are they going to ask us back next year?" As I've mentioned before, we love Ecole. It's 18-20 kids in the entire school, 3 teachers in a Montessori environment and they speak French all day long. Since my illness, the twins leave with Evan at 8am and when Ecole lets out at 2h45pm, they stay with their beloved Madame Z until 5pm.

Back to the photo above...Credence Paul C. V.'s latest escapade. Madame H, the wonderful French woman who created Ecole first talked about la petite Z. But I'll skip to Creed. Since he started to walk, Creed has been distracted by everything. He really is Curious George: smiling, adorable, kind, playful and well, not always graceful. Creed will crane his neck to look at a bus and walk into a telephone pole. He'll get so excited to see a squirrel and fall off a curb. Madame H started by saying she's worried for his safety and apparently, the accident happened. Creed was running in the play ground, wasn't looking and went flying over a wagon. He always wears his glasses and they hit forming a near perfect shiner. It happened exactly one week after she predicted it would happen. I chalk it up to his age, his immaturity and his ever present enthusiasm and curiosity. Madame H is concerned with his focus and attention span. He is quiet but likes to wander in class. He listens but you need to take his cheeks in your hands to get him to look at you. Could it be early signs of those acronyms that begin with "A"? They say it's too early to tell. For goodness sakes, he's a 3 1/2 yr old boy. He was born 3 months early at 2 lbs and has 2 shunts in his brain. Friends with little boys say to follow my mother's intuition. We have the name of a neuropsychologist. We'll see.

Oh, and P.S. They do want us back next year!

Oh, and P.P.S. Don't you just love this sleepy black-eyed photo?

I hate pink...

2009-03-11T08:27:00.000-07:00

I hate that color. I hate those god damn little ribbons, too. For those of you who know me, you're familiar with my affinity for black. It's a palette that can be a clean slate, void of emotion, concentrating on form, texture and history. I know that there are unspoken feelings that are dredged up with black but not so much as society's focus on god awful pink. I won't wear it(aside from a crazy pair of cowboy's boot's that are pink ostrich and a color not found in nature). Even then, I'll wear them with black trousers for the shock value. I also resent the girl/blue = pink/blue assumption when babies are born. Sure I dress Zelda in wild colors. They're so "happy" and "fun" and "silly" for kids. But then there are those stupid pull up diapers that come in pink or blue. We'll buy a box and put our kids in either color and then get comments about Creed wearing a pink diaper. Whatever! I guess I'm just on a tear today...sorry this is so disjointed...anyway...

I get pissed off when I see a commercial on television for Texas Oncology. Now, I must say that my doctor's visits, surgery, protocals and treatments have been flawless. My oncologist is a rock star. My surgeon is an Eagle Scout, a non egotistical & caring sculptor. I never wait more than 10 minutes for any appt or infusion. The place runs like clock work and they answer all questions. But Texas Oncology sits looming, with a large channel letter sign on the side of the Mopac freeway...near the fertility place and other multi-million dollar specialty offices. We would drive past it going north to the 'burbs to see my sister and her family, subconsciously taking note - never thinking that I would actually go there...And now, it is such a part of my life. I dread it, I resent it, I hate that they advertise it on TV. I watch mindless television in the evening like "Two and a Half Men" or "Law & Order" to not think about my cancer, my nausea and my fatigue. And then I see it: happy people happily fighting cancer on the screen - they might as well all be wearing pink. People choose to do fertility treatments. People choose to take Viagra. People choose their laundry detergent. People don't choose cancer. So, do they really need to advertise to get patients? Tell me, what fucking choice do we have?????

Haiku on a thursday...

2009-03-06T13:27:00.000-08:00

fuzzy brain hurts thoughts
skinny ass in bloatedness
swallow no more pills

*on another note, I met with a personal chef this week whose services will be provided to us by more generous friends. She is experienced with cooking for cancer patients as well as toddlers and families. She starts next week...

Chemo #4...Mom's update...

2009-03-04T06:21:00.000-08:00

I haven't been posting too much because sometimes this cancer just overwhelms me. It is so present in my life: emotionally, mentally and physically. I have to force myself to focus on other things. Each morning I wake up with mixed signals of how many things I can accomplish in one day (I'll make a list of 5 or 10 and MAYBE get to 1) but am also filled with trepidation of possible side effects. The effects can happen unexpectedly at any time, not unlike the food aversions or cravings I may have.

I sat in the chemo chair yesterday as I watched the nurse push in my last dose of the "Red Devil" - the dreaded, harsh adriamycin that they have to infuse by hand. It looks like the thickest, brightest most syrupy red stuff going into my body. Afterwards, I pee red for about 12 hours...lovely.

I usually feel good the afternoon of chemo so my friend Liz took me to the Woodland on South Congress for my favorite big pepper-crusted hamburger, a limeade ginger soda and a pie of peanut butter chocolate pie. I ate the whole thing as my oncologist thinks I am loosing weight and who knows if the nausea will set in anytime soon. Today, this day after, can be conflicting: still energized by the steroids in the morning but with the onslaught of SE's.

*Strange things that happen or I feel during chemo: (sorry if it's TMI but everyone should know in case you have to go through this and remember everyone is different) 1) constant or underlying nausea - can hit anytime and for any length of time. I haven't puked but I can be very close at any given moment. 2) the tips of my fingers are sore at night as if my finger nails are trying to grow and they can't. 3) I have to constantly battle constipation due to the chemo drugs, I take Senekot almost daily, nice... 4) my hair is now reduced to stubble, I thought it would be smooth but it's not and at night it stands up on end and hurts to lay my head on the pillow. 4) I have to pee constantly because I drink so much water to flush my system. 5) my skin is dry, dry, dry. 6) there is absolutely no moisture in my eyes, esp at night, and I awake to put in eye drops to pry them open. 6)usually the day or so after chemo I am hit by a sharp, troublesome headache that lasts for several days. 7) the hair on my legs has stopped growing, my underarm hair is gone and my pubic hair is thinning. 8) perhaps the most troublesome SE besides the never ending fatigue which doesn't allow me to do much esp with the twins (or moreover, I push myself to walk or play with them for an hour or so, and then collapse into a nap) is the "chemo brain". I forget things, I have trouble finding words, I get lost in the middle of a sentence. Evan will ask me to remind him to do something and I'll have to REMIND him who he's talking to...I could forget at any moment. And these are just the physical SE's...

As for Mom, her surgery went splendidly but the results were not great, but not bad either. She is Stage 2 as her tumor was 4.5cm. Her lymph nodes are involved with 3/7 testing positive so Dr Smith did an axillary dissection. With lymph node involvement she is no longer a candidate for the mammosite and will receive the long term whole breast radiation with a boost to an area as they found cancer in a small piece of the margin taken from the tumor. She has elected not to have another excision surgery and I don't blame her with a cancer that has metasticised who knows where else it could already be in her body. My Mom is strong and exercises regularly so hopefully she'll sail through all of this and continue to live many more years past her current 85.

AND back to me, me, me...I am looking in the mirror at a sallow, tired, bald woman with bags under her eyes...I look sick. Nice people say I look chic with my cheekbones, shorn locks and tall, thin demeanor but I think I look like a cancer victim. So I put on my Gucci sunglasses and trudge forward...

Off to get my shot of Neulasta...

Cash...Check...or Charge...

2009-02-24T06:23:00.003-08:00

Cost of 1 visit with the oncologist: $463
Cost of 1 Oncotype test: $3820
Cost of 1 round of Chemo: $4500
Cost of 1 Neulasta shot: $7600
Cost of 1 lumpectomy surgery: $19000

Cost of seeing my twins smiling faces when they run in the door after a day at Ecole: priceless

* I don't know how people without health insurance in this country manage their care - it is criminal. The bills are exorbitant. We are lucky enough, despite being self-employed, to have good health care, with reasonable co-pays. We pay out the a** for it and the bills still rack up. We open them, read them and file them and wait for the phone calls to begin. If anyone out there still thinks that our health care system isn't broken, then they are sorely mistaken.

**Mom goes in for her surgery tomorrow. Her breast cancer is clinically Stage 1 at this point. She'll have a lumpectomy to remove the tumor, a sentinel node biopsy and a balloon inserted to prepare for a mammosite insertion. This little device will then able the radiation oncologists to pinpoint the area of her breast to be radiated. (I unfortunately, was not a candidate for this device and will undergo 6 weeks of radiation.) She will have have 5 days/2x day of radiation next week and then her treatment will be finished. She'll have been diagnosed, operated on, and gone through treatment within a total of 3 weeks. For that I am grateful as I don't know if she could withstand the 6 months that I am going through. Good luck, Mom!

The plot thickens...or I had a Hungarian grandmother...

2009-02-19T13:23:00.000-08:00

We called her Nudgemama and she was my Mother's mother. She died when I was 10 or 12and she was close to 90. Her name was Julia and she was a milliner in Debrecen, Hungary before she came to America in the late 1800's to become the bride of a Hungarian widower. She got pregnant 14 times, gave birth 11 times, and had 9 children who lived. My mother, who is now 85, was the youngest. She never learned English and always lived in Carteret, NJ. As a child, I remember going to see her with my Mom...at that point she lived on the second floor of a row house. It was quite dark; she was very old, had a long grey braid down past her knees, she wore heavy black shoes and had lace doilies on her furniture. My uncle Joe, who smoked and drank, lived in the front room. Nudgemama only spoke Hungarian and she could only converse with my Mom or Uncle Joe. The only words we knew how to say to her were "Koszonom, Nudgemama"...thank you, Grandmother. She would serve us 7-Up at her round wooden table or Jello when she had some. Have you ever seen Jim Jarmusch's film "Stranger Than Paradise"? The Hungarian Aunt Lotte always reminded me of Nudgemama.

When Nudgemama died, my Mom always said it was from old age and other ailments. That's why it was shocking to learn the other day at my Mom's oncology appt, that supposedly she had died of breast cancer. For our entire lives, no one has known this. I have 2 sisters and my younger sis has 3 girls. This could be a lineage of breast cancer. As my Mom revealed this important detail of family history to her new oncologist, my Dad and I stared back in disbelief. He had never heard of it either. Apparently in Nudgemama's dying months, as old and feeble as she was, she never let anyone near her and never saw any doctors. When my Mother finally saw her body, her breast was apparently "eaten away by cancer." Thanks Mom, for the breaking news. My sisters and I have been filling out our medical histories for years checking "No" under breast cancer in the family. Oh la la...

So now, I am being tested for the BRACA gene. It is a specific genetic mutation that indicates a tendency towards an inherited breast cancer in the female lineage of the family. It sharply raises the percentage of recurrence and also tends to point towards ovarian cancer as well. Great. Now I have a grandmother who died of breast cancer, a mother who has breast cancer and then there's me. The chances are slight that I carry this gene...but I am the fulcrum. If I test positive, then my sisters need to be tested. If my younger sis tests positive, then her daughters will need to be tested when they turn 18. All signs point to negative for me...my cancer being an anomaly and the cancer of my Mom and Nudgemama being a result of old age. I find out in 2-3 weeks. Just another piece of shit to heap on the pile...

P.S. Chemo #3 went off without a hitch on Tuesday and now I am just very, very tired so far...I have an Echo tomorrow to make sure that my heart is working:) and then we see my superstar surgeon, Dr Smith, for my Mom's appt.

And who is the President?...

2009-02-16T15:01:00.000-08:00

It really is the age of the one-liners with these twin toddlers but it's also the Age of Independence. It started with "No" and then on to "I don't want to" and now Creed says "I can't". And so when Creed decides to be contrary, I launch into what I call the 'Obama Game'.
It goes something like this:
-Me: Creed, please take off your shoes when you're on the bed.
-Creed: No, I can't.
-Me: Creed, who is our President?
-Creed: (enthusiastically) Obama!
-Me: And what does Obama say?
-Creed: Yes, we can!
-Me: Okay then, yes, you CAN...now, take off your shoes!

On a related note, have any of you other toddler parents recognized the relationship between the "Bob, the Builder"'s (in French, we call him "Le Bricoleur") motto and that of Obama's?
"Can we build it? Yes, we can!"
A coincidence?
I think not.

P.S. Round #3 of A/C chemo tomorrow. I am dreading the after effects...fingers crossed.

WTFFFFFFFFFFFFFFFFF...

2009-02-12T16:29:00.000-08:00

My mom is 85. She is feisty, ornery, opinionated and smart but getting older by the minute. AND NOW SHE HAS BREAST CANCER!!!! WTF!!!

She had a biopsy on Monday and as she called for 3 days, yes, 3 days, for the results, she got the run-around from her boob (no pun intended!) of an internist. Today he told her, "Mrs C., I don't have the results in front of me but I can "verbally" tell you that they found cancer cells in your breast biopsy." Apparently he told her it's the "most common type". Huh?

I am:
-pissed off
-livid
-impatient
-anxious to be focusing on someone's illness rather than my own...

Tomorrow, I'm accompanying her to an oncologist that the "boob" recommended...then, we're going to see the rock star, Dr H.
This is not my idea of a mother-daughter bonding experience...

A coma & Coca Cola...

2009-02-10T09:22:00.000-08:00

So, I had this idea. Yesterday was oh so, miserable. The night before was spent in relentless nausea and sleeplessness. I ate saltines, I ate pretzels, I took the extra anti-puke pills. I couldn't read, watch TV, or look at a computer. I can't even look at ginger ale any more. I awoke and had a half hour of relief and when Aunt Claudia aka Aunt "Kia" arrived to pick up the kids, I ran to the bathroom and spent the rest of the day in bed. So, why can't they just put chemo patients into a coma? You arrange your life for the next 4 months: childcare, meal delivery, house cleaning, business decisions, even a video tape of conversation...and then you just check out. Every 2 weeks, they can inject you with the toxic drugs and then there's no nausea! no fuzzy brain! just sleep! It seems like a good idea to me...then they wake you up and you can go through radiation. What do you think?

As for the Coca Cola: I had a craving. The dry mouth is constant and last evening, I wanted a good old-fashioned fountain coke. Aunts Shakti & Claudia took the twins for a walk down the street and came back with a tall cup of sweet, carbonated goodness. Aunt "Kia", being the wellness healer that she is, was concerned about the caffeine. My response was, "I already don't sleep on the steroids so WTF?" I probably sipped on a third of the Classic Coke and you know what? I slept, no nausea, and I awoke at 6h30am to my toddlers ready to start the day. And now of course, I need a nap.

Recent one-liners from the twins:
-Zelda (out of the blue the other day): "Mommy, I want to go to France!"
-Creed (upon going into the crowded workshop of a friend): "My daddy likes junk, too."
Hmmm....

Playlist...department store mannequin...

2009-02-07T12:27:00.000-08:00

So, la petite Z has a play list. She can name Sting, Beck, Spoon & Alejandro Escovedo on KGSR in 3 notes or less. We're going to make a lot of money off this kid if "Name that Tune" still exists when she's older. She can distinguish between The Police and new Sting. She's picky about her 60's R & B, 70's disco and dance hits of the 80's. We bought her one of the no-tech reverb microphones that she'll sing into like an echo chamber...these are her favorite feel good tunes of the moment:

- I Got You (I Feel Good): James Brown
- Message in a Bottle: The Police
- You got yr. cherry bomb: Spoon
- Don't You Want Me: Human League
- Sister Lost Soul: Alejandro Escovedo
- Le Freak: Chic

As for me, the velcro stubble is shedding. After the haircut of last Friday, my five o'clock shadow was starting to reappear and I was getting pissed. It's itchy, it's sticky and it hurts on my pillow. Funny thing, the other night, I got up to pee, half-asleep and as I got back into bed, I instinctively went for my long hair at the nape of my neck to brush it up onto the pillow.
I was just in the shower at noon and felt the water streaming down my lonely skull. And when I emerged, I looked at myself naked in the mirror - like a department store mannequin. Long neck, skinny shoulders, small breasts & waist and bald. Spray me in white plaster and set me in a vitrine.

2 notes...

2009-02-05T08:40:00.000-08:00

Note No. 1:

On Wednesdays at Ecole, an art teacher comes in to do paintings with the kids. Creed brought home a Winslow Homer rendition. In the meantime, Zelda worked with her pre-Braille teacher and this came home in her lunchbox. I'm verklempt!

Note No. 2:
From my dear, funny & erudite friend, Laurent, in Paris (with an attempt at a fuzzy brain translation de ma part):

"En gros il y a trois résultats esthétiques possibles au crâne rasé chez la femme:
(Overall, there are 3 aesthetic outcomes possible for the woman with a shaved head):

-La version Britney Spears, genre j'aurai pas dû laisser mon p'tit frère jouer au coiffeur avec moi, pour rattraper le coup j'ai pas pu faire autrement que de tout raser et je ressemble à une poupée pas finie.
(The version Britney Speers, the type that I shouldn't have let my little brother play hairdresser and now to 're-coupe' I could only shave it all off and look like an unfinished doll.)

-La version Sinead O'Connor, style nonne bouddhiste, oui je sais j'ai l'air très ennuyeuse et ascétique, et c'est peut-être pas tout à fait faux.
(The version Sinead O'Connor, style buddhist nun, yes, I know I seem bored and severe, and perhaps it's not entirely untrue.)

-Enfin la version Grace Jones (ou Gail Chovan), c'est-à-dire j'ai une "gueule" et quand on me regarde on a l'impression que j'ai une nouvelle coupe et pas que je n'ai plus de cheveux."
(And finally the version Grace Jone - or Gail Chovan - that's to say, I have a "look" and when one sees me, they'll have the impression that I have a new "doo" and not necessarily that I no longer have any hair.)

Keep 'em coming...

P.S. Today I'm dealing with pukiness, insomnia (up night from 1am-4h30am), headache, losing taste buds, an acute sense of smell and intense dry mouth, dry eyes and dry skin...trying to get some sleep. I know that it all could be a lot worse, but this sucks...

Hair kids...Chemo #2...

2009-02-04T09:52:00.001-08:00

So, after the emotional haircut afternoon, I wrapped my head in a scarf and Evan went to pick up the twins. I had been telling them of the haircut for days before in order to prepare them. Creed walked in, looked at the scarf and said "What's this?" AS I unwrapped my head, I said "This is Mommy's new haircut." He looked for a moment, grinned and said "I (y)ike it!" Then he kissed me on the head. I took Zelda's hand and placed it on my stubble - she said "Mommy, haircut!" and laughed. The next morning, Creed woke up and crawled into bed with us. He took one look at my newly shaved skull and said "No more haircut Mommy!" Sorry Creed, I can't go back...at least, not for a while.

Chemo #2 was yesterday. Again, it went off without a hitch. Accompanied by Evan and our friend, Joaquin, a filmmaker, we met with Dr H. I always feel good about our meetings because she tells me how great I'm doing and how young I am! Her latest comment was "You have great marrow!" I'm so pleased with that one...as my blood counts remain strong and that means I can continue the chemo on the every 2 week schedule and be done in 6 more rounds. I am beginning to know the nurses and always ask lots of questions. We tweaked my meds so I haven't had the lingering, bothersome headache although the nausea persists. Crackers and ginger ale have been doing the trick. I eat well and have started taking pro-biotics. I even worked yesterday. Right now, besides the nausea and fatigue, the most troublesome SE (that's 'side effect' in chemo lingo) is the insomnia. The steroids wake me up and I am soooo restless. It's difficult to read because my eyes are dry, blurry and unable to focus. My mouth is so parched, I constantly sip on a bottle of water. I got up to make jewelry but was too tired and cold. I was awake for hours.

Today - 24 hours after chemo - I return to the lab for my shot of Neulasta. It is a drug that boosts the white blood cell production in preparation for the day 7-10 typical plummet. I had little trouble with my first shot but they say common SE's are intense bone pain and flu like symptoms which can occur within 24-48 hrs of the injection. I'm hoping to keep smoothly sailing through...

P.S. My new profile photo is from Saturday night - a black tie affair at the Blanton Museum. It was my first attempt at an 'Aretha-like' turban in .89/yd black fusible interfacing. I wore a leather ball gown that I had designed several years back. The event was very 'old' and very 'monied'. 70-year old women in ballgowns from the 1960's would come up behind me and say "Honey, I like your hat!". If only they knew...

Circle of love...

2009-02-02T13:35:00.001-08:00

photos: Todd V. Wolfson

Ta-daaa...

2009-02-01T08:25:00.001-08:00

photo by Todd V. Wolfson, haircut by Deborah Carter of PINK Salon

Re-booting...and Hair-today...

2009-01-29T11:09:00.000-08:00

La petite Zelda and Evan were home last night by dinner. No brain tap - thank the gods! She seems okay, a little off, a wee bit whiny, and asking often to be held and for her Daddy. It's almost as if she had to be reintroduced to the household, her favorite toys, music and books. Usually I can read her braille book of nursery rhymes with her and she'll finish each sentence. She was reticent at best. I know that the seizure was a trauma to the brain and 3 days in the hospital sucks for any toddler - never mind a blind child getting used to new smells, voices and sounds. Evan calls it "Re-booting her brain" - getting her back into the flow of our lives. He's worried that Creed is exploding on all fronts: personality, language, willfulness, opinions, etc. Zelda is usually always a month or 2 behind Creed but always holds her own. Now, Evan feels that Creed is racing forward while Zelda becomes more tentative. She's at Ecole today with Creed and her friends. We have Parent-Teacher conferences next week...
* * *
Today is my last full day with a full head of hair. I woke up last night at 3am and felt my hair on my pillow. I couldn't sleep. I felt anxious about it for the first time and seem to be looking at the clock every hour today and imagining what it will be like tomorrow. I don't want to lose my hair. Like everything else, I know that I can do it...yes, I can. It's just that this time, I really don't want it to be...gone tomorrow.

Been distracted...

2009-01-28T08:17:00.000-08:00

So, Zelda had a seizure on Sunday. Sometimes I think we're cursed. Just as we begin to brag and dance and sing about her not having had a seizure in so many months. It hits. And it hits badly...Just the other day, the pediatrician commented on how maybe the neurologist should adjust her seizure meds to coincide with her weight gain. Ya think?

The twins had an awesome day on Sunday with their friends. They ran like banshees, ate french fries at Chuy's (which Zelda promptly threw up), and then they crashed for a nap. Delivered home to us, she was a zonked-out little ball who only wanted to lay on the 'big bed' with Mommy. I didn't think she had a fever but apparently she did. She just seemed tired. She woke up choking, spitting up and started to seize. Evan & I were in the kitchen with Tim, going over legal documents. We called 911. EMS came quickly. Her color was good, her breathing stayed strong but she seized.

Evan has been at the hospital with her since Sunday night. I can't be there because of these days after chemo when my blood counts may be low. Now, the new neurologist is calling her epileptic. Huh??? The other doctors are saying it was a febrile seizure. They finally brought in her Infectious Disease doctor that we had requested after I called Dr McLeod in Chicago and called Dr Hauger herself. Now, we're a bit more confident since she's on the scene. Zelda is up and about. She hasn't had another seizure or fever and she's eating and wants to come home. We are waiting to see if the neurosurgeons will tap her shunts to check for an infection there. I know we'll have it done if necessary but I really don't want them to have to stick a needle in my little girl's brain today...

My half-way through Chemo #1 visit to the oncologist today pales in comparison to Zelda's needs. Haircut is scheduled for Friday.

The great debate...and Chemo #1

2009-01-22T10:12:00.000-08:00

So, I've waffled back and forth and thought about starting another blog to discuss my cancer treatment but then I've reconsidered. I'm still the mom of the toxotwins, I am still parenting, I still have cancer - or at least am going through the weeks of chemo to make sure it's held at bay - not unlike the toxoplasmosis parasite that floats in my body as well as in the bodies of Creed & Zelda. So to separate the cancer from "Our life with the toxotwins" would seem as though I was trying to keep the two bubbles apart...they are intrinsically intertwined. I will pledge however, to try and not dwell too much on either one but to talk about them together as much as possible.

It's tough right now to have the energy to run with 3 1/2 yr old toddlers. They continue to astound me. Creed is soooo curious. He IS Curious George, the little monkey. He has officially entered the 50th percentile on the height and weight charts leaving behind his micro-preemie status of his 2 lb birth. He has opinions, asks questions and says "I need a hug". He responds regularly in French and seems to love going to Ecole.

As for Zelda, she is still ma petite puce...weighing in at just over 25lbs. She'll surely be a member of the "Stringbean Club" like her mom & dad. Z speaks more and more each day. Yesterday she counted to 20 in French while bouncing on the "big bed"! I attended another ARD meeting for her educational plan. She'll begin receiving speech therapy services in a few weeks to help with her articulation. I think it's harder, as seeing people, to imagine how a blind toddler learns to speak. She can imitate flawlessly but when she hurries and wants to pour out her words, they become garbled. She doesn't see the way our mouths move and can only do auditory imitation. I can almost see the wheels turning in her active little brain. Andrea, her TVI, will also up her visitation at Ecole to 3x/week. Two hours a week they work on concepts and pre-braille exercises. The 3rd session will focus on socialization and play. Zelda needs help learning to interact with the other kids. They all seem willing but need some guidance.

And I survived my first round of chemo. A saline drip, followed by anti-nausea meds, cytoxin and then the Red Devil - Adriamycin...I'm doing okay. No puking, just occasional dizziness, a mild headache and fatigue. This first round has so far been flawless as I wait for the other shoe to drop. I had my shot of Neulasta yesterday, to keep the white blood cell count from dropping too low - which is also of concern with that pesky toxo parasite - side effects from the shot 24/48 hrs later can include intense bone pain and flu like symptoms.

So that's it! Flowers arrived on my chemo day, friends have brought by dinners and each evening, someone arrives to help us deal with the twins at bedtime. Merci, merci mille fois...

Rites of passage...and aliens

2009-01-19T12:19:00.000-08:00

So, in between our usual coming and goings like preschool and cancer and such...Creed got his first set of stitches. Last week, I received a call from Emma, the director at Ecole - Creed had done one of his typical manoeuvres, twirled around, tripped and hit his chin on the edge of the table. Emma met us at the Children's Hospital ER and Creed happily followed behind her with his lunchbox, a book and a butterfly suture on his chin. It didn't faze him in the least. The 3 stitches were a bit more traumatic but he took it in stride - especially since the ER pediatrician was a familiar face, Zoie's mom from Ecole. Frankly, Evan and I were surprised it hadn't happened sooner with his crazy antics.

On Friday, I had outpatient surgery and had my port-a-cath inserted below my right collar bone. This will facilitate the infusion of the chemo drugs as opposed to pushing them through an IV every 2 weeks. There is a large lump on my chest and when I look in the mirror, I half expect an alien being to rumble and rear its head from the scar. It also throbs and is sore - that in itself is life-like enough...
I start chemo tomorrow: A/C treatments every 2 weeks for 8 weeks, followed by 4 Taxol treatments on the same schedule. As long as I can hold to that protocol - that is, I can sustain the chemo and my blood counts stay within range - I should finish the chemo in 4 months. My hair will fall out on day 12 to 14 so I am planning the preemptive strike. After a family photo photo session this weekend, Deborah will cut it very short and then we'll buzz it and do a smooth shave. Evan and I have a black tie event to attend on the 31st - assuming I feel well enough - so, bald or turban, what do you think?

Last "Hair-rah"...

2009-01-13T10:53:00.000-08:00

So, it's confirmed. I start 4 months of chemo next Tuesday. I'll watch Obama's inauguration from my chair in the infusion room as I silently chant, "Can I do it? Yes, I can." As for the details, I have triple negative, invasive ductal carcinoma. My oncotype test shows that it is aggressive with at least a 30% chance recurrence rate. Chemo is the course of treatment - every 2 weeks, followed by 6 weeks of radiation. I will lose my hair so I am having it cut off and my head shaved after my first round of chemo.

So, here's my photo from the round of parties from this past weekend...pre-party, a lovely birthday for Alejandro at the new Hotel Saint Cecilia followed by the pièce de résistance: the annual Jingle Ball. C & Z returned to Tunnel Trail for another fun-filled slumber party with Kat & DonDon - dancing to the 80's and running around in the rain shower. Thanks you guys for letting us have our last "Hair-rah" - at least for a while! Feeling fine in 2009...

photo courtesy of Todd V. Wolfson, hair by Deborah Carter at PINK Salon, make-up by Shirley Pinkson at W3LL People

Feeling fine in 2009...stream of consciousness

2009-01-06T11:40:00.000-08:00

In the words of my good friend Alton, this shall be my mantra for this new year.

I should have been posting since the New Year but with the twins out on vacation and numerous medical inquiries, the time got away from me. Now Creed & Zelda are back at Ecole and my oncology visits are increasing with frequency and the news needs to be updated. I walk a thin line between deepest fears and depression and my usual feistiness of being ready to kick cancer in the butt. I need to take a pill to level out my emotions/hormones...but that's a whole other story.

It looks as though yours truly may be starting chemo. We are awaiting the results of my oncotype DX to see the actual prediction of the cancer's rate of recurrence. It's not looking good with the initial numbers, so Dr Hellerstedt is telling me to prepare myself for the treatment. Yes, I will lose my hair. The last time I had short hair was going into kindergarten - and for those of you who know me in person (even at my ripe old age of 50), I still carry a mane of hair almost to my waist. Today, I am feeling the aforementioned fighter spirit, so I can dealing with going bald and working a stylish turban. Enough of this shit however, as I am sure there will be more cancer talk - esp after I receive the oncotype results when I see Dr H on Friday.

Creed & Zelda are fine. Man, it was a long vacation...Even with childcare and a wonderful new nanny named Sarah, we were exhausted. Creed is exploding in every sense of the word - but most of all with enthusiasm. He is a joy - most of the time -and then there are the "I don't want to!" moments and he'll say things like "Mommy, move!" Excuse me, was that my sweet boy speaking to me? Zelda's language is increasing in leaps and bounds but is still quite a bit unrecognizable except to my linguistically trained ear. She's adorable as ever and pissy as ever. The past 3 nights of been sheer hell in the bedtime department. "Mommy, mommy, mommy" - nonstop for 3 hours, I kid you not. ARRGGHHH! She has been increasingly particular about her musical choices and as she asks for a specific song by Spoon, she'll quickly switch to the latest CD by Alejandro Escovedo. She requests volume and her CDs by name. I bought her a cheap boom box and am teaching her to put in her own CD's that I will label in Braille.

Which leads me to...No, we did not go to Paris as my surgery recovery was not speedy enough. It's snowing there as they celebrate the birth of dear Louis Braille, born 200 years ago. Happy Birthday Louis, and thanks for enabling my daughter to have the opportunity to read as well if not better than her peers that can see.

HO, HO, HOpe...

2008-12-22T14:00:00.000-08:00

It's beginning to look a lot like Christmas...so, our week goes something like this.

Sunday: Errands, waffle party, work

Monday: "Uncle" Seth arrives from Telluride and "Uncle" Craig arrives from New Haven. Evan has nicknamed them the Swedish bachelors; they come every Christmas and we eat, make movies and catch up on the news of the year.

Tuesday: 7am - Zelda goes in for an MRI on her brain and her orbits...looking to see that her eyes and sockets are growing accordingly.

Wednesday: 8am - my first visit to the oncologist to discuss a treatment plan. Things are going as well as they possibly could. The final pathology results showed the margins removed along with the tumor are clear. The 3 (count 'em 3!) sentinel nodes are clear. They say the cancer is stage 1 and it's good that I caught it early. Oh, and the HER2 came back negative - not sure exactly what that means but I do know that you don't want it to be positive. So, on Wednesday we'll get a plan of attack be it chemo or radiation or both...and then possibly a second and third opinion. I am feeling well...just still tired and sore after the last weeks surgery.

I guess the best part of Christmas Eve will be our Reveillon meal...Seth will cook up our annual feast for dinner. I'm thinking foie gras...

Thursday: Merry Christmas! Off to the 'burbs to be with the entire family and guests.

AND, un grand merci to all for the good wishes, prayers, karma, Native Amercain spirit bags, natureopathic remedies, childcare, handholding, and flowers ... oh, the flowers!

Zelda and I are still debating about our trip to Paris for the 200eme anniversaire de Louis Braille on January 4th. We would have to leave on New Year's Eve but it looks as though traveling with a toodler while recovering from surgery may not be the best choice, but I AM feeling brave...on verra...

Out damn spot...

2008-12-17T16:43:00.000-08:00

So, yesterday Dr Smith went in and took out the tumor. He performed the sentinel node biopsy and removed 3 'gatekeeper' nodes as well as a 4th suspiciously palpable one. He then performed the lumpectomy removing the tumor and a good margin of surrounding tissue. Early pathology reports showed the nodes to be clear. But now there is 48 wait for the final pathology reports and the staging. I'll spare you the details of the burning radioactive isotope injections and just say that the surgery went well and I woke up smoothly.

Today was spent in bed with pain meds and an ice pack. Creed saw my scars and bruising and said "Mom has 2 owies!" I'll say...

Fingers and toes remain crossed for clear pathology reports for tomorrow.

I came home to cancer...

2008-12-15T20:47:00.000-08:00

(sung to the tune of "I'll be home for Christmas")
We arrived home a week ago from a lovely time in Jamaica. It now seems so very far away...relaxation, I read 3 books, swam, ate & drank. I had a massage, kayaked in the ocean and at night we would play charades and other silly games. Lots of good company and peacefulness made even better knowing that the twins were in good hands and enjoying themselves.

And now I have cancer. Weeks ago I detected a small lump in my left breast. The mammogram said all was normal but my erudite OB/GYN said he always sends a patient with a 'lump' off to see a surgeon. An ultrasound and a biopsy gave me the results on Friday. It's cancer. An MRI today told me that it's the only tumor in my breasts but it's aggressive and just itching to get out. Tomorrow I go in for surgery, he'll do a lumpectomy and check the sentinel lymph node. I am scared, pissed off and exhausted. All of this information has been gathered in just 6 short days. Today we talked to the radiation oncologist. As I lay on the table during my biopsy last week, squeezing the hand of the volunteer, I thought of all that my children have been through. They have had needles stuck in their brains while they were awake not to mention assorted holes drilled during various brain surgeries. They have had their eyes rolled around in their tiny little sockets and at one point point I recall at least 10 attempts by various nurses to start an IV line in poor little Zelda's fragile veins. She finally ended up with an IV line in her head. My situation is nothing compared to what they have been through.

I can get through this, I know I can. But it fucking sucks. I won't mince words. I am ready to stop crying, ready to stop feeling like a victim and start being a survivor...tomorrow perhaps?