Monday, December 14, 2009

Give me an "O"...

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..

Wednesday, December 9, 2009

Mind the Gap...

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...

Monday, December 7, 2009

the People, the People...

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:


Monday, November 23, 2009

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...

Monday, November 16, 2009

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...

Wednesday, November 4, 2009

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

Monday, November 2, 2009

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...

Wednesday, October 7, 2009

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...

Monday, September 28, 2009

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.

Saturday, September 12, 2009

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...

Friday, September 4, 2009

A blind man walked into a restaurant...

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...

Thursday, September 3, 2009

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

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...

Monday, August 17, 2009

Summer Schedule...

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...

Sunday, August 9, 2009

The "New" Normal...

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...

Tuesday, July 7, 2009

Credence Paul, M.D....

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...

Saturday, July 4, 2009

An Independence Day challenge...

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...

Monday, June 29, 2009

Nike Lance Armstrong "Driven" Commercial

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...

Thursday, June 18, 2009

the beach


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.

Wednesday, June 17, 2009

Only the good die young...

...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...

Monday, June 8, 2009

Just do it...

...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...

Sunday, May 24, 2009

Weirdness and curiosities...

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

Wednesday, May 20, 2009

Yo...rads!!

...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...

Wednesday, May 13, 2009

Swept away...

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...

Saturday, May 9, 2009

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

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...

Wednesday, May 6, 2009

Out the door to Ecole...

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.

Wednesday, April 29, 2009

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


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...

Monday, April 27, 2009

Tick, tock...

...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...

Thursday, April 23, 2009

Not dead yet...


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.

Friday, April 17, 2009

I'm liking this photo, etc...



- 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...

Monday, April 13, 2009

a postmodern easter...

...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...

Wednesday, April 8, 2009

Creed's nanner...


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.

Tuesday, April 7, 2009

Le Fabuleux Destin de Zelda Nicolette...



...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...

Thursday, April 2, 2009

"Stop Copying Me!!"...

...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...

Friday, March 27, 2009

I don't have cancer...

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...

Sunday, March 22, 2009

Rollercoaster of Pain...

...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...

Thursday, March 19, 2009

Three strikes...

...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????

Tuesday, March 17, 2009

Spa day...Chemo #5

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...

Friday, March 13, 2009

Et ensuite, la petite Z...



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.

Wednesday, March 11, 2009

CPCV...an acronym



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...

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?????

Friday, March 6, 2009

Haiku on a thursday...

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...

Wednesday, March 4, 2009

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

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...

Tuesday, February 24, 2009

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

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!

Thursday, February 19, 2009

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

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.

Monday, February 16, 2009

And who is the President?...

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.

Thursday, February 12, 2009

WTFFFFFFFFFFFFFFFFF...

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...

Tuesday, February 10, 2009

A coma & Coca Cola...

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....

Saturday, February 7, 2009

Playlist...department store mannequin...

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.

Thursday, February 5, 2009

2 notes...

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...