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

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...

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...

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...

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.

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...

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...

"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...

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...

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...

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.

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....

Hair kids...Chemo #2...

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

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

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

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

Rites of passage...and aliens

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

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