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 will be #6...

Sunday, March 22, 2009

Rollercoaster of Pain..., 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... 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 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. goes on and 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 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...