Update...

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...

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...

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...

...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...

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)

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...

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...