Excited, Nervous.

Excited to go to NY. To see everybody. It's going to be soooooooooooo fun!!! Rented a flat with Susanne, Allison and Kaethe. And I know at least one evening I get to spend with all my lovely NY sistahs yelling into the Karaoke microphone. Now stop making that sticking your finger down your throat motion. Somewhere deep down don't you think Karaoke is fun? Somewhere? I do...
I just like the idea of being stuffed in this private room with all these lovely ladies.

What else? One time, long long ago. Early high school years, I was floating around NY with next weeks flat mates. We wondered to all the head shops, parks, bought "Indian" print tea shirts and Jerry Garcia posters. Then we left my bag on the subway. I remember, we got on at Astor Place and got off at Grand Central, and then realized my bag kept going. Insanely enough, some nice cop tracked it down in Harlem. So we got back on the train and had our absolutley first adventure to Harlem, amazed that NO ONE took this bag off the train.  All stereotypes had left our minds and it was the best thing that could have happened to four girls from Scarsdale that day. Maybe we could re-trace our footsteps next week, without loosing a bag this time...

I'm nervous because I have to leave these kids for a week. I don't want to. They're doing so well. Ari is improving by leaps and bounds in school with the extra help. He is NAILING reading. I'm so psyched for him. Isaac is feeling much more grounded and attached in the way he should be. It's only one week and ALL the therapists say it will be ok.

I'm nervous because I have to have the six month bone marrow biopsy next Thursday. Of course I have to have it. And my bloodwork looking perfect last week should be very reassuring. I keep forgetting to let it be reassuring. My head spins when I get pulled back into thinking about Leukemia and it's nastiness.  What a bitch. BUT, aren't the doctors and researchers brilliant? Think of ALL they've accomplished! Lives saved. I still feel so lucky to be walking around this earth in the flesh. And to get kisses and smell yummy little kid morning breath.

Excitement and Nerves. Likely to be my lifetime partners. Unless I reach enlightenment sometime soon. HaHa.

My Goodness Robin

We had to record the Oscars, of course, because of the time zone difference. Isaac and I sat down to watch them tonight. It wasn't until an hour in that we realized we had only recorded the Oscars Red Carpet and completely missed the awards ceremony. I really just wanted to see how funny Seth MacFarlane was.  But had we just recorded the awards, I would have missed how incredible Robin Roberts seemed and looked! I didn't recognize her at first. And then I screamed out, "She looks amazing!" I think Isaac thought I was crazy. She's the the stem cell transplant poster person extradinaire. Andy was nice enough to emphasize that there's no doubt she has a personal trainer. But still! Who even has the strength to lift a weight 5 months out of a transplant?!  I'm so glad for her. For every transplant recipient. 

I'm so happy that the Gift Of Life Donor Circle we set up just made a fourth match for a woman in her 60's with AML.  This itty bitty fund-raising circle has saved FOUR lives!!!  Thank you, thank you to everyone who donated. And the award goes to.... YOU!



Here 's a link to gorgeous Robin. Hope you can open.

http://www.dailymail.co.uk/femail/article-2283940/Happy-healthy-hitting-red-carpet-Robin-Roberts-makes-showstopping-Oscars-appearance-blue-velvet-gown.html?ito=feeds-newsxml

Sick AZA Dog

Back in London. I just loved being together for 7 days and doing things at dinner like playing Mille Borne and Scrabble and drawing those funny pictures where one person draws the head and folds the paper over and the next person draws the body and folds it over and the last draws the legs. Then you unfold it and it's always an hilarious hit. Ours mostly seemed to come out as something Tim Burton would approve of.  Very Coraline...

Ari finally got bit by the ski bug. It's so exciting to watch him fly straight down the slopes in French fries. He's completely unafraid. No one telling him what to do. Total freedom. He deserves it. He deserves many successes. Andy was so thrilled to be skiing with both his boys. Maybe next time mama will join. But this time I basically spent the week sleeping, trying to get over this cold, reading my book and listening to music.  Try this link to the Capitol Childrens Choir here in London singing "shake it out", by Florence + The Machine.  Goosebump worthy:

http://m.youtube.com/#/watch?v=Gj-ntawOBw4&desktop_uri=%2Fwatch%3Fv%3DGj-ntawOBw4

So today was Day One of round 3 of Azacitadine. I got my shot at around 3:30 and I have not been able to stop throwing up since 8:00 this evening. Really horrible and yucky. It's like my body wants nothing to do with this. Tomorrow I'll ask for IV nausea medicine and a liter of fluid before shot #2.  Time to hit the hard stuff. I have to figure out a way to make it through another year and a half of this. Whoa. I can do it! The good thing is that my bloodwork looked good today. Huge relief.  Thank Heaven for large things...

Slope

I feel like the seriousness of what I just went through is just hitting me. I caught a cold and it threw me into a tizzy. I thought I wouldn't get better or I'd get pneumonia again. It's the same cold that everyone else in London has but they didn't all have a transplant 5 months ago. I just want this to work so badly. I am getting better from the cold and that's a good sign. I was having visions of hospitals again.  Those are such crappy visions! I think this cold makes me really tired and at those times I start to think. Never a good thing.  I'm stressing my next bone marrow biopsy on march 7th in NY.  Waiting for those results is excruciating.  It's because this has to work...

Right now I'm in Austria in a hotel room with a loud jamming bar below and the excitement of a ski show taking place on the slope right outside our window. If I felt better I'd want to go downstairs and dance. And bring my kids too. I love dancing with my kids. There's something so fun about that. Especially when I can possibly get them to dance to a song that's from MY favorites list. Like Express Yourself, or Love Shack.

Back to this cool ski show. These ski instructors are impressive! Crazy daring. Sometimes you've just gotta be like that.

Old dusty blog

When Andy and I first met we rented a loft in the west village in NY. Our windows looked out over Christopher Street and there was a billboard across the way advertsing to come see Busty Dusty at the local strip club. It was such an on-running joke. You can only imagine. It was, at times, like Dusty was our debauched two-dimensional roomate. So now, I can't really ever hear or use the words Dusty or Busty without thinking of her. Hence, the memory popped up while I write in this dusty blog.

I still haven't heard anything from my donor. We're sending off a Valentine card that Ari made. I hope it passes the anonymity inspection.  It's very cute.  I'm going back to NY to see Dr. Giralt in early March. I'll have another bone marrow biopsy as well while I'm there. The big trick has been to stay cool in da head. Some days I am juuuuuust fine. I wake up and do a little jig because I'm so happy to be alive. And it's mostly like that. But then there is always that worry that seems to have managed to creep back in.

I remember when I worked in Soho in NY at a photographers studio. There was a fire in a building a few doors down. We basically watched the whole thing. People running out of the building. The fire trucks coming. All the firefighters, water, lights. Later, we spoke to someone we knew who worked there. He said the water from the firefighters did more damage than the fire. The whole building was an absolutle mess. Isn't that just like worry? You've got this pretty together structure of a human being and then this insidious emotion just seeps in to every nook and cranny. Pretty much uninvited. And causes this great mess.

Ari's taking this Mindfulness class. It's really great. The teacher has basically taught them about past present and future. So far she's used scents and tastes to bring them into the present moment. Or maybe to evoke memories. What ever it is.  But it seems they've gotten a real sense of time. This weeks homework has been for Ari the really taste the first bit of whatever he's eating. It really does help to bring you right up to the present moment. And he was talking to me about how he thought the past and the future really didn't exist.  That they are just things that we think about. I was impressed. He's so right. There's really not much goin' on besides this present moment. So, I'm going to taste my food and smell my soaps and flowers whenever I think of it so, I can keep myself in the proper place along the timeline. And how great is it that right now there's really nothing to worry about.