HO, HO, HOpe...

It's beginning to look a lot like Christmas...so, our week goes something like this.

Sunday: Errands, waffle party, work

Monday: "Uncle" Seth arrives from Telluride and "Uncle" Craig arrives from New Haven. Evan has nicknamed them the Swedish bachelors; they come every Christmas and we eat, make movies and catch up on the news of the year.

Tuesday: 7am - Zelda goes in for an MRI on her brain and her orbits...looking to see that her eyes and sockets are growing accordingly.

Wednesday: 8am - my first visit to the oncologist to discuss a treatment plan. Things are going as well as they possibly could. The final pathology results showed the margins removed along with the tumor are clear. The 3 (count 'em 3!) sentinel nodes are clear. They say the cancer is stage 1 and it's good that I caught it early. Oh, and the HER2 came back negative - not sure exactly what that means but I do know that you don't want it to be positive. So, on Wednesday we'll get a plan of attack be it chemo or radiation or both...and then possibly a second and third opinion. I am feeling well...just still tired and sore after the last weeks surgery.

I guess the best part of Christmas Eve will be our Reveillon meal...Seth will cook up our annual feast for dinner. I'm thinking foie gras...

Thursday: Merry Christmas! Off to the 'burbs to be with the entire family and guests.

AND, un grand merci to all for the good wishes, prayers, karma, Native Amercain spirit bags, natureopathic remedies, childcare, handholding, and flowers ... oh, the flowers!

Zelda and I are still debating about our trip to Paris for the 200eme anniversaire de Louis Braille on January 4th. We would have to leave on New Year's Eve but it looks as though traveling with a toodler while recovering from surgery may not be the best choice, but I AM feeling brave...on verra...

Out damn spot...

So, yesterday Dr Smith went in and took out the tumor. He performed the sentinel node biopsy and removed 3 'gatekeeper' nodes as well as a 4th suspiciously palpable one. He then performed the lumpectomy removing the tumor and a good margin of surrounding tissue. Early pathology reports showed the nodes to be clear. But now there is 48 wait for the final pathology reports and the staging. I'll spare you the details of the burning radioactive isotope injections and just say that the surgery went well and I woke up smoothly.

Today was spent in bed with pain meds and an ice pack. Creed saw my scars and bruising and said "Mom has 2 owies!" I'll say...

Fingers and toes remain crossed for clear pathology reports for tomorrow.

I came home to cancer...

(sung to the tune of "I'll be home for Christmas")
We arrived home a week ago from a lovely time in Jamaica. It now seems so very far away...relaxation, I read 3 books, swam, ate & drank. I had a massage, kayaked in the ocean and at night we would play charades and other silly games. Lots of good company and peacefulness made even better knowing that the twins were in good hands and enjoying themselves.

And now I have cancer. Weeks ago I detected a small lump in my left breast. The mammogram said all was normal but my erudite OB/GYN said he always sends a patient with a 'lump' off to see a surgeon. An ultrasound and a biopsy gave me the results on Friday. It's cancer. An MRI today told me that it's the only tumor in my breasts but it's aggressive and just itching to get out. Tomorrow I go in for surgery, he'll do a lumpectomy and check the sentinel lymph node. I am scared, pissed off and exhausted. All of this information has been gathered in just 6 short days. Today we talked to the radiation oncologist. As I lay on the table during my biopsy last week, squeezing the hand of the volunteer, I thought of all that my children have been through. They have had needles stuck in their brains while they were awake not to mention assorted holes drilled during various brain surgeries. They have had their eyes rolled around in their tiny little sockets and at one point point I recall at least 10 attempts by various nurses to start an IV line in poor little Zelda's fragile veins. She finally ended up with an IV line in her head. My situation is nothing compared to what they have been through.

I can get through this, I know I can. But it fucking sucks. I won't mince words. I am ready to stop crying, ready to stop feeling like a victim and start being a survivor...tomorrow perhaps?

Leaving town...

Just a quick check-in to say that Mom & Dad are leaving town...yes, Evan & I are taking 5 days of much needed R & R at a private villa in Jamaica with college friends from Yale. We are sooooo looking forward to this. The twins will be spending time with their wonderful Auntie S who will stay at the house. Auntie C will serve as chauffeur back & forth to Ecole. And Creed & Zelda will also have a night away at the Tunnel Trail Sleep Away Camp courtesy of our friends, Kat & Don. They'll be so busy that they won't even know we're gone. We'll be staying here...our own cook, rum drinks, a private beach and uninterrupted sleep.



Whoopee, I'll check in when we get back...

Ok, here it comes...

I am a member of a list serve for Parents of Blind Kids, the other day a mother posted this concern:

"My 6 year old daughter has recently started talking a lot about being
blind and about her "acrylic" eyes, as she refers to her prosthetics.
The other night, she said to me "Mommy, can you get me something so I can see with my eyes instead of with my hands?""

I know that it's a bit early for Zelda to ask a question like this but it's definately something to start thinking about...that's it for today.

Halloween bis...as requested

Little drummer Bat


"Look Mom, I got it!"


Vampire Family


"I came looking for Johnny Depp - err, I mean Sweeney Todd and all I got was a dead Mariachi!"

Blind as a Bat AKA Halloween '08

Forgive my late blogging of the event of the season...Halloween, that is. So much has happened, not the least of which is Zelda learning to use her long white cane! Halloween was an action-packed, fun-filled week starting with the annual practice Trick or Treating at the Clarksville home of our friend, Margaret. The twins enjoy it more and more each year - apple bobbing, musical instruments, an A capella group, lots of kids and of course the T-or-T activity. We were the Rock n' Roll Vampire Family with Creed & Zelda as our little bats. Another evening took us out to Kat & Don's for bales of hay, tractor riding and pumpkin carving and then off to a Biscuit Brothers concert at Central Market. The following night was Halloween and the twins went out to the 'burbs for the T-or-T marathon evening with the cousins while Mom & Dad had an evening at the Black Ball. 18 houses later...Creed & Zelda had a sound sleep and we picked them up the next day.

So, at the end of October, Zelda received her very first long white cane courtesy of the NFB and is adapting quite nicely. There is a bit of controversy over the age of when a young child should begin to use a cane. The NFB basically promotes the sooner the better and I am in their camp. It promotes independence and confidence from an early age. She is so very petite and of course, elicits a lot of stares, comments and questions as she walks down the street, through the grocery store, or on the playground of Ecole. I like to tell her to "Tap gently" as she maneuvers her cane along the sidewalk. She was already a fearless and expert traveler and her instant attraction to her cane has only added to her desire to be on the go! People, as always, are crazy and inquisitive, but also quite ignorant: "Is that her Halloween costume?" "Is she practicing to be blind?" "Hey, watch out for the little girl with the stick!" Some just stare with the looks of sympathy and then hug their own children as if to protect them from a contagious illness. Others go out of their way to avoid getting in her way. Each day, I try to take the time to explain these questions and comments to her. Creed is also getting pretty good at fielding the comments, he responds "That's Zelda's cane!" He seems proud of her and he wants one, too.

Anyway, it was actually a coincidence that I chose bat costumes for the twins for Halloween. It got me thinking about comments, songs and such...the expression "Blind as a bat" is actually quite fitting because Z really does seem to exude an innate sense of radar or echolocation. But how will Zelda feel about the song "Three blind mice"? And then there was a joke about a blind race car driver a few weeks ago on Saturday Night Live. Evan & I looked at each other and asked, "Should we be offended?" ...Will Zelda develop a keen sense of humour and accept these aspects of our society with courage and grace? We can only hope ...stay tuned.