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...