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!!, 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:

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 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....


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 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.