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 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 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...