Family of the Week

It's this cute thing Ari's class does. Feature one child's family each week by asking them to create a posterboard of pictures, visit the classroom one morning, and by asking Ari to fill out a questionaire about himself. We volunteered for this week and when I told Ari he was so excited.  He was so thrilled about something normal. Just like I am all the time.

I know that everybody has their struggles, but from what I can tell it seems that all the families in his class have been nicely intact these last six months; no familiy members mysteriously out of town. So I think our being together means more than our just being together. It means that we're like everyone else. I remember when I first came back, and I brought Ari to school one morning. I don't do it often because I know I should stay out of there for the moment. One of Ari's little friends who he's been buddies with since pre-school, looked up at me and said, "I thought you were supposed to be in the hospital! You're back?"  It was kind of shocking. For both of us. I think he was suprised to see me. And I think I was suprised he was suprised to see me. My being gone worried my kid's friends. I know it's true with some of Isaac's friends too. What a reality check. Especially for these little people who are too small to have to be dealing with reality checks at all!

So as I was glue-sticking the photos we chose to the green posterboard, I was so excited! I was helping out on a class project! Sitting in my kitchen late at night surrounded by bits of trimmed photos and images of family and trips we've taken. Setting out star stickers for Ari's final touches at breakfast, I literally sit there thinking, "I can't believe this!" It's like "Pinch me, I'm alive!!" It's such an unusual thing to have mixed into your life. I feel very awake. And I know it is from this heinous experience, and survivng it.  I always wonder how the people I know who love life so much got there without ever experiencing anything life threatening.  I think it's so smart to learn from other people's experiences. If you can. It means being really empathetic, but it can give you so much richness without maybe having to go through all the struggle.

So, I just love being Family of the Week for Ari.  Although, to me, it feels more like, "Family of the Strong"...

Thoughts on Thoughts

There is so much emphasis on what we eat as being linked to disease.  I'm not disputing this truth, but it's also true that there's plenty of people who have smoked and drank their way into their 90's.  I often think of the Hunza people who live on apricots and almonds in northern Pakistan. Supposedly they have really long life spans. I wonder if I, if we all, should be living on apricots and almonds? Then I recently read that Hunza don't actually calculate age in years, but in wisdom. Now, that's a thought... How old would you be? I'm somewhere between a wise old lady and a new born. I can't decide... 

In my new effort to earnestly take care of myself, this last week I have learned that, for me, a scary thought (which have been annoyingly creeping back in...they must be dealt with!) is much more powerful than a green smoothie. I feel a bit perky after I've blended my organic kale, blueberries, soaked cashews and coconut milk.  But disastrous thinking? That shoots off yucky chemicals I can actually feel inside me.  

I've felt a bit tired the last few days,  and that will make my creative imagination start spinning out of control. All these "uh oh's" and "oh no's".  It's stressful! Waiting five years to be in the clear.  In five years I'll be at the same risk as your average Josephine for Leukemia.  It's a major mental challenge! And although I do plan to continue taking care of myself and unfolding what all that means,  for goodness sake, babies get cancer! And it's certainly not from what they eat or think or from not being taken care of!  We have friends in Chicago whose baby at 3 months went through chemotherapy! He's a friend of Isaac's and he's 12 now and awesome.  

There's no Cancer Answer. That's one thing this wise old lady feels sure of.  It's just a bummer and then maybe, hopefully you get lucky...All I know is what I know for me. The scary thoughts are no good and the smoothies are actually this weird gray color.  And most importantly cancer taught me to really soak up the moment. Everytime I come back to it, everything is fine.

Body Image

It's been on my mind lately. There's a big difference between taking care of yourself to take care of yourself, and taking care of yourself to lose weight, be skinny. I was culling Ari's room yesterday and when I told Edie I was purging she wanted to know if I was sick or just clearing out the house. It made me laugh. When I went back to the large pile of costumes to pick through, I thought a really funny halloween get up would be a skeleton outfit with a bikini over it and a blonde wig. Like every woman's goal should be to become a blonde x-ray.  I used to really love fashion magazines, but now they really bother me, just for that reason.

When I was growing up, my mother was a serious calorie counter. She was totally cute but NEVER liked her body, or her face or her hair, etc... She had a book where she wrote down every thing she ate every day and she would NOT go above 1000 calories. 1000!!! That's NOT a lot. I had no idea at the time how little that was but I understand now. And then on weekeneds she would binge. Mostly on ice cream. She's eat hers and then finish yours.  And who knows, maybe there was a little bit if purging going on there too.

It almost seems unnatural to just accept ourselves for who we are. But there's a balance somewhere between wanted to excel and thinking we have to annihalate ourselves to do it. I've always thought I was too this or too that. I look back on pictures of myself and think, "What was I thinking?! I was cute!"  So, in attempt to heal those years, my goals have changed.  I now aim to solely take care of myself, focused on healing, stretching and strength; without stress but with hope to get the most mileage out of this Model D.

Borrowed time?

I guess my favorite part of today was picking up Ari at school, I brought the dog and I felt like Mary had a little lamb. She literally made the children laugh and play. It was so angelic somehow. Ari's got a great bunch of friends at school and I'm so glad. Friends have always been my saving grace.

I'm feeling a little sad for him tonight, after a meeting this evening with the incredible staff at school who's had his back so well and know him so well. It seems like he might have an ADHD thing going on. It's really hard for him to stay focused academically. This has always been a struggle for him. It's just hard and exhausting. Poor guy.

Childhood is just so much easier when school is easy. I know he'll be a really interesting  adult. When he can choose a career from his passions, but in school you have to be good at everything. Tough stuff. So, he''s still being assessed and we'll see. I'm glad we're getting to this when he's still little. And as tough as it is, these are the types of things mommies have transplants for: JUST TO BE HERE! What a gift! A treat! If Ari has troubles, I get to be the one to deal with it!!! Yay!!! I'm must sound crazy. But, I'm not. I might always feel like I'm living on borrowed time (or well earned time), but that's OK. Because, Really, we all are.

Not Miserable

"When you love someone you see the face of God". Isn't that the nicest quote from Les Mis? We got to see it tonight. I think we got the last 3 tickets in London. We brought Isaac and I must say he did very well. I truely forgot to mention the singing aspect  of it. I think he was pretty amazed to see Hugh Jackman and Russell Crowe having  operatic showdowns. Plus we learned about this tiny piece of French history that embodied such dedication, perseverance. A willingness to really fight for what you believe in. Sometimes you just have to do that.  And of course I'm all blubbering in the end when Ann Hathaway comes back as a ghost and thanks Jean  Valjean for raising her daughter and he says, "She's the best part of my life", through his tears. And instead of Isaac being all embarrassed that I was having a cry cry moment, he put his head on my shoulder and said," I can't believe you're home". So sweet, I looked around. I couldn't believe it either. Everything is such a privledge. Even my itchy chemo side effects. (And the fact that Sacha Baron Cohen stole the show...)

I could imagine that perspective on things to be really annoying to some people. But I'm not saying anyone should have to live in an appreciative state. I mean, life can be hard.  I'm just saying that I naturally do now. And I don't mind at all. It feels like I'm not missing anything,  Just maybe a little sleep. Scratch scratch scratch.
Bon Reve.

In My Head

Blogging in my head, exchanging glances... Blogging in my head, decreasing  my chances... Blogging in my head, of reaching you......

Songs are ALWAYS stuck in my head. You too? Plus, I always have a song for every occassion. I tack them on to the ends of people's sentences. I think that's what I get for spending most of high school sitting around listening to music and singing along to the words on the backs of the album covers. Now you have to download the song and then go to lyricsfreak,com and sing along. It's just not the same. Technology....

It's been a busy week and I've had so many ideas to write about. But I've forgotten them all. Short term memory loss is a euphemism for what I feel like is really going on here. Thoughts bounce around in my mind, I wish I had a fly stripe in there to catch them. Especially as I walked to the Royal Free hospital and back everyday this week to get my Azacytadine shots. Such a lovely walk and so many good thoughts.

Today was day five. Two rounds down, 22 to go.  It's a start. I tried to negotiate with Dr. Giralt. Could I do it every six weeks instead? Or for less than two years?  I'm only sayin' because it brings back all my chemo crankiness: itchy, restless, sleepy, heartburn, all that stuff.  And I know that for two years it's no big deal if it prevents relapse, but it also just keeps me remembering.  Now I  only want to think of how normal everything is. Because it is. Or a least getting normaler (I know that's not a word). But Giralt was a no go. No negotiation. But that we could reassess when I see him in February. So I signed my email back to him "Ok. Love, Cranky".  It's the least of his worries, I'm sure.

My father is turning 91 on Jan 25. Isn't that amazing? There's no answers. Our friend's sister just died from an auto-immune disease. She was diagnosed just before me. She was In her 50's. Three kids. I can't stop thinking about it. I just want to fix it all. Take it away.  Arggh!

I made a sick joke at the health food store today. I was so happy being in there. I like health food stores. I told the salesperson I had had a transplant and I was looking for a good multi-vitamin, etc... So as she's ringing me up she asks, " how long is a bone marrow transplant suppossed to last?" And I replied back in my best American accent, "I should be good for a really long time, as long as I look the right way when I'm crossing the street in this city..."

G'nite
D

How can I be feeling so good?

It's amazing. We're in France skiing. A little town L'Alpe d'Huez.  I stay at my own pace but have a reslly good amount of energy. Tonight while we were night sledding (Of course Night Swimming by REM is stuck in my head) I teared up. I'm so grateful to my donor. I could bombard her with letters, but i won't. Just waiting to hopefully hear back.

So, I want to say I hate skiing, but I can't. I actually had a really fun time today just sashaying down the bunny hill. Listening to French families laugh and play, watching Ari improve incredibly in a 2.5 hour lesson. Andy loves skiing and is so happy when we're all together doing it. For me learning to ski as an adult is as hard as learning French as an adult, ( and way more dangerous. Like learning to drive on the left side of the road as an adult)..

But My new motto to Life is Yes Yes Yes. So off I go skiing. And whatever else comes along. Life is fast, and short, and I can't say I ever lived it just going for what I feel is really fun, or in terms of what I want to do, or taking many risks. But it's coming much more naturally to me now. I'm just going with it. No questions.
Happy New New New Year. I guess everyday is a chance to renew what needs renewing.
Beaucoup Baises
Dina