Thursday, January 29, 2009

Re-booting...and Hair-today...

La petite Zelda and Evan were home last night by dinner. No brain tap - thank the gods! She seems okay, a little off, a wee bit whiny, and asking often to be held and for her Daddy. It's almost as if she had to be reintroduced to the household, her favorite toys, music and books. Usually I can read her braille book of nursery rhymes with her and she'll finish each sentence. She was reticent at best. I know that the seizure was a trauma to the brain and 3 days in the hospital sucks for any toddler - never mind a blind child getting used to new smells, voices and sounds. Evan calls it "Re-booting her brain" - getting her back into the flow of our lives. He's worried that Creed is exploding on all fronts: personality, language, willfulness, opinions, etc. Zelda is usually always a month or 2 behind Creed but always holds her own. Now, Evan feels that Creed is racing forward while Zelda becomes more tentative. She's at Ecole today with Creed and her friends. We have Parent-Teacher conferences next week...
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Today is my last full day with a full head of hair. I woke up last night at 3am and felt my hair on my pillow. I couldn't sleep. I felt anxious about it for the first time and seem to be looking at the clock every hour today and imagining what it will be like tomorrow. I don't want to lose my hair. Like everything else, I know that I can do it...yes, I can. It's just that this time, I really don't want it to be...gone tomorrow.

Wednesday, January 28, 2009

Been distracted...

So, Zelda had a seizure on Sunday. Sometimes I think we're cursed. Just as we begin to brag and dance and sing about her not having had a seizure in so many months. It hits. And it hits badly...Just the other day, the pediatrician commented on how maybe the neurologist should adjust her seizure meds to coincide with her weight gain. Ya think?

The twins had an awesome day on Sunday with their friends. They ran like banshees, ate french fries at Chuy's (which Zelda promptly threw up), and then they crashed for a nap. Delivered home to us, she was a zonked-out little ball who only wanted to lay on the 'big bed' with Mommy. I didn't think she had a fever but apparently she did. She just seemed tired. She woke up choking, spitting up and started to seize. Evan & I were in the kitchen with Tim, going over legal documents. We called 911. EMS came quickly. Her color was good, her breathing stayed strong but she seized.

Evan has been at the hospital with her since Sunday night. I can't be there because of these days after chemo when my blood counts may be low. Now, the new neurologist is calling her epileptic. Huh??? The other doctors are saying it was a febrile seizure. They finally brought in her Infectious Disease doctor that we had requested after I called Dr McLeod in Chicago and called Dr Hauger herself. Now, we're a bit more confident since she's on the scene. Zelda is up and about. She hasn't had another seizure or fever and she's eating and wants to come home. We are waiting to see if the neurosurgeons will tap her shunts to check for an infection there. I know we'll have it done if necessary but I really don't want them to have to stick a needle in my little girl's brain today...

My half-way through Chemo #1 visit to the oncologist today pales in comparison to Zelda's needs. Haircut is scheduled for Friday.

Thursday, January 22, 2009

The great debate...and Chemo #1

So, I've waffled back and forth and thought about starting another blog to discuss my cancer treatment but then I've reconsidered. I'm still the mom of the toxotwins, I am still parenting, I still have cancer - or at least am going through the weeks of chemo to make sure it's held at bay - not unlike the toxoplasmosis parasite that floats in my body as well as in the bodies of Creed & Zelda. So to separate the cancer from "Our life with the toxotwins" would seem as though I was trying to keep the two bubbles apart...they are intrinsically intertwined. I will pledge however, to try and not dwell too much on either one but to talk about them together as much as possible.

It's tough right now to have the energy to run with 3 1/2 yr old toddlers. They continue to astound me. Creed is soooo curious. He IS Curious George, the little monkey. He has officially entered the 50th percentile on the height and weight charts leaving behind his micro-preemie status of his 2 lb birth. He has opinions, asks questions and says "I need a hug". He responds regularly in French and seems to love going to Ecole.

As for Zelda, she is still ma petite puce...weighing in at just over 25lbs. She'll surely be a member of the "Stringbean Club" like her mom & dad. Z speaks more and more each day. Yesterday she counted to 20 in French while bouncing on the "big bed"! I attended another ARD meeting for her educational plan. She'll begin receiving speech therapy services in a few weeks to help with her articulation. I think it's harder, as seeing people, to imagine how a blind toddler learns to speak. She can imitate flawlessly but when she hurries and wants to pour out her words, they become garbled. She doesn't see the way our mouths move and can only do auditory imitation. I can almost see the wheels turning in her active little brain. Andrea, her TVI, will also up her visitation at Ecole to 3x/week. Two hours a week they work on concepts and pre-braille exercises. The 3rd session will focus on socialization and play. Zelda needs help learning to interact with the other kids. They all seem willing but need some guidance.

And I survived my first round of chemo. A saline drip, followed by anti-nausea meds, cytoxin and then the Red Devil - Adriamycin...I'm doing okay. No puking, just occasional dizziness, a mild headache and fatigue. This first round has so far been flawless as I wait for the other shoe to drop. I had my shot of Neulasta yesterday, to keep the white blood cell count from dropping too low - which is also of concern with that pesky toxo parasite - side effects from the shot 24/48 hrs later can include intense bone pain and flu like symptoms.

So that's it! Flowers arrived on my chemo day, friends have brought by dinners and each evening, someone arrives to help us deal with the twins at bedtime. Merci, merci mille fois...

Monday, January 19, 2009

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?

Tuesday, January 13, 2009

Last "Hair-rah"...

So, it's confirmed. I start 4 months of chemo next Tuesday. I'll watch Obama's inauguration from my chair in the infusion room as I silently chant, "Can I do it? Yes, I can." As for the details, I have triple negative, invasive ductal carcinoma. My oncotype test shows that it is aggressive with at least a 30% chance recurrence rate. Chemo is the course of treatment - every 2 weeks, followed by 6 weeks of radiation. I will lose my hair so I am having it cut off and my head shaved after my first round of chemo.

So, here's my photo from the round of parties from this past weekend...pre-party, a lovely birthday for Alejandro at the new Hotel Saint Cecilia followed by the pièce de résistance: the annual Jingle Ball. C & Z returned to Tunnel Trail for another fun-filled slumber party with Kat & DonDon - dancing to the 80's and running around in the rain shower. Thanks you guys for letting us have our last "Hair-rah" - at least for a while! Feeling fine in 2009...

photo courtesy of Todd V. Wolfson, hair by Deborah Carter at PINK Salon, make-up by Shirley Pinkson at W3LL People

Tuesday, January 6, 2009

Feeling fine in of consciousness

In the words of my good friend Alton, this shall be my mantra for this new year.

I should have been posting since the New Year but with the twins out on vacation and numerous medical inquiries, the time got away from me. Now Creed & Zelda are back at Ecole and my oncology visits are increasing with frequency and the news needs to be updated. I walk a thin line between deepest fears and depression and my usual feistiness of being ready to kick cancer in the butt. I need to take a pill to level out my emotions/hormones...but that's a whole other story.

It looks as though yours truly may be starting chemo. We are awaiting the results of my oncotype DX to see the actual prediction of the cancer's rate of recurrence. It's not looking good with the initial numbers, so Dr Hellerstedt is telling me to prepare myself for the treatment. Yes, I will lose my hair. The last time I had short hair was going into kindergarten - and for those of you who know me in person (even at my ripe old age of 50), I still carry a mane of hair almost to my waist. Today, I am feeling the aforementioned fighter spirit, so I can dealing with going bald and working a stylish turban. Enough of this shit however, as I am sure there will be more cancer talk - esp after I receive the oncotype results when I see Dr H on Friday.

Creed & Zelda are fine. Man, it was a long vacation...Even with childcare and a wonderful new nanny named Sarah, we were exhausted. Creed is exploding in every sense of the word - but most of all with enthusiasm. He is a joy - most of the time -and then there are the "I don't want to!" moments and he'll say things like "Mommy, move!" Excuse me, was that my sweet boy speaking to me? Zelda's language is increasing in leaps and bounds but is still quite a bit unrecognizable except to my linguistically trained ear. She's adorable as ever and pissy as ever. The past 3 nights of been sheer hell in the bedtime department. "Mommy, mommy, mommy" - nonstop for 3 hours, I kid you not. ARRGGHHH! She has been increasingly particular about her musical choices and as she asks for a specific song by Spoon, she'll quickly switch to the latest CD by Alejandro Escovedo. She requests volume and her CDs by name. I bought her a cheap boom box and am teaching her to put in her own CD's that I will label in Braille.

Which leads me to...No, we did not go to Paris as my surgery recovery was not speedy enough. It's snowing there as they celebrate the birth of dear Louis Braille, born 200 years ago. Happy Birthday Louis, and thanks for enabling my daughter to have the opportunity to read as well if not better than her peers that can see.