Xmas- the one year homecoming

Finally, some nice meaning attached to Christmas. I was obsessed with it this year. Amal and her family came for christmas eve dinner and I just really wanted it to be special. December 24th was one year to the day of arriving home from New York last year after the transplant. I remember shopping with Edie and NY and wrapping everything and buying two new suitcases and packing them to busting hoping I wouldn't get snagged by customs on the way in. And then I remember arriving home, the bald, Jewish, Lady-Santa Mama.  My family and Amal's family were here to greet me and we had a wonderful meal together. So now Christmas is so special to me.

This year, as we got together again. I felt like I wanted to give all of us some closure of sorts. We lit a beautiful glowy three-wick candle. Each wick for something different. I chose Bravery. We all had to be so brave in so many ways. I think you have to be so brave to support someone who is scarily ill. And if you're the one who is ill, that takes guts too. Treatments, decisions, maybe being away from home.  Sol, Amal's younger son, chose to light a candle for Cherishing the Moment.  I thought that was gorgeous. And what an amazing thing to learn by the age of 16. Brilliant.  We read favorite poems that we wrote or loved from books we had. Isaac read a poem he wrote called, Joy. It's about our dog Laila. It's really about absolute and altruistic love.  I think Laila was a big part of everyone getting through last year. Thank you Laila for coming to be our puppy.

I read two poems. YES by Muriel Rukeyser. Because I can not resist that poem. It's gotten me through a few tough spots in my life. Here's it is:

YES

It's like a tap-dance
or a new pink dress, 
a shit- naive feeling 
Saying Yes. 

Some say Good morning
Some say God bless-- 
Some say Possibly
Some say Yes. 


Some say Never 
Some say Unless
It's stupid and lovely 
To rush into Yes. 

What can it mean? 
It's just like life, 
One thing to you
One to your wife. 

Some go local 
Some go express 
Some can't wait 
To answer Yes. 

Some complain 
Of strain and stress 
The answer may be 
No for Yes. 

Some like failure 
Some like Success
Some like Yes Yes 
Yes Yes Yes. 

Open your eyes, 
Dream but dont guess.
Your biggest surprise Comes after Yes. 

Then I read:

Why I Wake Early by Mary Oliver

Hello, sun in my face.

Hello, you who made the morning

and spread it over the fields

and into the faces of the tulips

and the nodding morning glories,

and into the windows of, even, the

miserable and the crotchety –



best preacher that ever was,

dear star, that just happens

to be where you are in the universe

to keep us from ever-darkness,

to ease us with warm touching,

to hold us in the great hands of light –

good morning, good morning, good morning.



Watch, now, how I start the day

in happiness, in kindness.”

I don't really like waking early. But I do love this poem. 

Andy read a Wendell Berry poem:

THE PEACE OF WILD THINGS

When despair for the world grows in me 

and I wake in the night at the least sound

in fear of what my life and my childrens' lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the green heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water

and I feel above me the day-blind stars

waiting with their light.  For a time

I rest in the grace of the world and I am free.

I love this poem. Andy said he read it because of how much I love things that are not man-made.

I want to share what the others wrote, Isaac, Janna and Luann, but I must get permission from the authors first. Needless to say, I cried. I figure, if you have to go through something crappy, you might as well look back when it's over see if you learned anything. Why not get everything out of it you can. I think maybe it was nice for the kids, for everybody.  It felt nice for me to thank everybody one more time. 

Merry Christmas.

Love,

Dina

And Finally….The Absolutley Fabulous Monique!!!

It's funny because Monique, my stem-cell donor, told me that each time she tried to respond to a letter or card I sent her, she would start to write something and then not know what to write and then just throw it out. Now, this post should be an old post because Monique and I met online, through Facebook (probably best use of Facebook ever) a few weeks ago! I've been trying to blog about it ever since! I keep starting to write something, read it over, and either delete it, or let it sit there hanging.  Monique is right. It's really hard to write about! What do you say? From my end, it's a gift she's given me that is beyond words. But here are some things I can say about Monique in the little contact we've had so far. Not only is she witty and funny, she's beautiful with a big gorgeous smile, a hard worker, a great mom, and very loving. She cares about people.  Plus, she is a true altruist. Something I have only aspired to be.  

Our match is curious. She's only 1/4 Jewish yet we have ten identical genetic markers. Science works in magical ways, or magical ways work in science. 

I wish her and her family so much love this holiday season. She has given me this holiday and all holidays to come. If this lady never does one more good deed in her life, in my book, Let it Be. The rest her life should be a holiday. She's filled her quota. But, from the little I know her, she's going to contribute a lot more to this world. 

Thank you Monique. From the deepest heart of my family to yours. 
Peace,
Dina

The Bar Mitzvah

I was laying on our massage table for my Wednesday morning accupunture and Tui Na treatment with Steve. I had been feeling differently lately.  Maybe for about two weeks. Different from my constant state of elation that I've been feeling for over a year now.  I was so suprised by it.  And for me to be surprised by that is truly silly.  I used to be the Queen of mood dips. Those all of a sudden, can't quite figure out why, moments when things just flip, and it would be really hard to figure out why. But looking back, I think it was that my emotional state was typiclly pretty negative and when it was on the upside, it was a real pleasure. 

So, cancer was a really hard teacher. but it gave me the wherewithal and the time to get a grip on it. The depressed feelings truely weren't doing me any good. Hence, all the councilling, self-help books and powwows at the beginning of my cancer treatment four years ago. It was excruciating. My friends bombarding my first hospital room by taping up the walls with home-made affirmations. I still have them. This was my initial launching into throwing off old, unwanted, unneeded things.  Looking back, I am truely thankful indeed, because today, my emotions don't control me. They are just emotions. But, worth being looked at, because I find if you don't give them some attention, they'll just badger you until you do. 

Usually, Steve will ask me how I am, and then pop me on the table face up. He'll get his needles out and begin. Some needles I hardly feel going in.  He'll ask me if it's "achy pricky" and I'll tell him. My hunch is that if it is, it's for sure hitting a needed spot. And if it does hurt I usually ask what that point is and he'll usually answer things like, lungs, blood tonification, liver, etc.

Steve's a really straight-forward but relaxed person. And this week, he's mentioning the function of a few points and then he puts one in my ear that REALLY hurts, says "grief" and keeps on going. Now, first of all, I don't think he's ever mentioned an emotion in relation to the accupuncture before. And I'm like, "What?" and he's like "What?" And I realized he nailed it. I've been feeling grief. The weird emotion that had been getting me down finally got a name. 

But what the heck was I grieving? It took a good think to figure it out. I know I had been feeling pissed about lost time in Ari's childhood. Adorable years I missed. But, I'm here! And that's always been my attitude. Then I've also been thinkng a lot of the fact that I have not heard from my donor and might not.  I've been starting to let go of that possibility. Then I thought maybe I've just been suffering because of my sub-conscious personal medical experiment in which I didn't take my drugs for three days and brought on the worst GVH crazy whole body itching attack. Skipping the steroids was stupid. I've learned I definitly need them. I just have such a love/hate relationship with medications. I obviously  needed to find out for myself. Which I did. Two weeks later and now up on a much higher dose of steroids, I'm still itchy. But better. 

Then, I think it hit me. It was the Bar Mitzvah. One of the most beautiful days of my life. Our week in Israel was perfect. Surrounded by friends. Isaac's hard hard work blossomed in a seamless, meaningful, fun ceremony. We could not be prouder in any way. And this left me with a high for many weeks and still does. But after the dust settled, I realize, Isaac is 13. And there's no going back. Only forward. And he's big, and mature and not a baby, in any way.  No matter how you slice it, that's hard on a mama.

It really hit me this week when he came home from school and told me they were studying blood diseases in science. He asked my why I never told him that you have a 50% chance of dying if you have Leukemia. I told him that I never believed in those statistics. To me it's really 0% or 100%. There's no in-between. "And", I said, "why would I tell my nine year old something like that anyway? It would have worried you horribly". He answered that, yes, he was nine, but then he was ten and eleven and now thirteen. I apologized. And I asked him what he thinks he would have done differently if he had known that. He said, "I wouldn't have been so bored when I went to visit you at the hospital".  

There's such a depth of caring in there. But I'm still glad I never told him those statistics. 

So, while I've been writing this my itunes songs have just been shuffling around. And this perfect Abbey Lincoln song came on. Here are the lyrics:

Throw It Away

I think about the life I live
A figure made of clay
And think about the things I lost
The things I gave away

And when I'm in a certain mood
I search the house and look
One night I found these magic words
In a magic book

Throw it away
Throw it away
Give your love, live your life
Each and every day

And keep your hand wide open
Let the sun shine through
'Cause you can never lose a thing
If it belongs to you

There's a hand to rock the cradle
And a hand to help us stand
With a gentle kind of motion
As it moves across the land

And the hand's unclenched and open
Gifts of life and love it brings
So keep your hand wide open
If you're needing anything

Throw it away
Throw it away
Give your love, live your life
Each and every day

And keep your hand wide open
Let the sun shine through
'Cause you can never lose a thing
If it belongs to you

Throw it away
Throw it away
Give your love, live your life
Each and every day

And keep your hand wide open
Let the sun shine through
'Cause you can never lose a thing
If it belongs to you

'Cause you can never lose a thing
If it belongs to you
You can never ever lose a thing
If it belongs to you

You can never ever lose a thing
If it belongs to you
You can never ever lose a thing
If it belongs to you

And here's a link:

http://www.youtube.com/watch?v=ALhAmEhKqsQ

And if you've made it to the end of this blog entry, there is some very good news!

I just learned the other day that my donor DOES want to make contact with me and we can begin that process!! I'm so excited. I found out while reading my emails on the 46 (phantom) Bus (it never comes) from Hampstead Heath to St.John's Wood at rush hour. I started that weird laughing/crying thing. The happiest lady on that crowded route. 

Twisty

I have to spin back the clock a bit in order to lately capture what I've been doing, thinking and feeling as a person one year out of a transplant.  This blog is about a lot of things, but mostly it's about my physical self, and my emotional growth around Leukemia and healing from Leukemia. So as I turned my watch back here in England on Saturday night, I was lucky enough to be in a quaint hotel room in Cornwall with an extra hour to put some thoughts together. I've been having some old, old memories pop-up out of nowhere lately. Most recently was of my grandmother's warm, minty breath and the butterfly kisses she would give me on my cheek with her eyelashes.  As I was walking on the beach in Cornwall I was really noticing how much I've lost my sense of smell. Most of the time I don't miss it, but I do when I'm at the beach. So I started thinking about smells I really miss and my grandma Minna just came whirling into the scene. 

I was in Cornwall because I'm taking a class (patting myself on the back) that involves reading something serious, watching the movie inspired from it and then DISCUSSING it!  We read Rebecca, by Daphne Du Maurier.  Cornwall was her stomping ground, so the class took a quick trip to visit.  It was a pleasure. Great women, beautiful place. It's all been a pleasant challenge to the brain. PLUS, I'm NOT reading about cancer, or a self-help book, or a spiritual book!  What a gift.  

Turning the clock back even further, and speaking of evoked memories, four weeks ago I found myself, yet agin, crawling into an emergency room, 6:00am on a Friday. Andy, pale, in tow. (Or I was really the one in tow). Once again, I flumoxed the doctors, (hate that) with intense abdominal pain. I'd already had my appendix out during my very first induction, so it couldn't be that. (Although they mentioned that the "stump" could have gotten infected. Goodness!)  Maybe it was kidney stones? Bladder infection? Something reproductive? Some nasty bowel blockage (yikes!).  One CT-Scan, MRI and sonogram later, they're still flumoxed.  They wanted to watch me. They gave me morphine and Andy and I slept for hours. 

Not until the next night when the scan-reading guru, a 6"6' doctor named Saeed came in, and worked his magic, did anyone realize that my ovary had actually twisted. Owww! Doesn't that sound awful?!  Now, women of the world, don't panic. This is NOT common. I had no fallopian tube on that side (that's another story) and after 50 years, this ovary decides to twist while I'm sleeping... 

On Sunday, I had my third abdominal laparoscopic surgery (and that's in additon to two c-sections) and the ovary is out, pain gone, and I'm all good. Except that I'll never have 6-pack abs again (again?). Biggest problem: I was supposed to get on a flight to Israel for Isaac's Bar Mitzvah six days later!!!  And although I now had the new pain of recovering from this surgery, there was no way I was not getting on that plane. Everything might have seemed up in the air, but not in my mind. In my mind, I knew I would be up in the air. Eye on the prize!

The next days were spent coming down from the shock of just having had a surgery. Saying bye-bye to "Twisty", slowly packing summer clothes for me and the kids, and trying to get all those hopital feelings and thougths out of my brain.  It sucked. And it had to suck for my kids. Mommy's in a hospital again? What do they know from serious or not? What could they have been thinking? Especially that little one. I've been trying so hard to get Ari grounded. I want him to trust my health, and to rely on my permanence as much as the next kid.  Needless to say, he gets a lot of cuddles, occasionally all night long in the king size bed, and we explain as much to him as we can so that he feels like he gets it. 

With small and big miracles in hand, we made it on to our flight, and landed in a place to spend a week that was more life changing than I ever could have expected. I thanked my body for the good timing and stumbled across this Albert Einstein quote the other day:

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” 

I'm pretty much convinced of column B.

Happy First Birthday

And this one is to all of us. To everyone who helped me to see this transplant through. My family, my friends, acquaintences. My doctors and my donor.  Old friends, very old friends and new friends.  Spanning two continents. And including encouraging prayers from possibly all the continents (except, I'm pretty sure, Antartica).  I'm a very lucky girl and an extremely happy citizen of this planet. I have a giant smile on my face most of the time and I have enough energy to have a pretty good spring in my step.  

I must say, I feel different. I have had the unusual pleasure in this lifetime to understand what it is to be happy without having to try.  I'm thrilled because it frees me up to think more easily about other things. It also just frees me up to just enjoy the moment. Whatever that might be. Walking the pup (in the rain). Joining first grade on a school trip. Chopping bell peppers.  Planning a Bar Mitzvah. I think, in fact, I might sometimes be annoying. Isaac was hungry and aggrivated watching Ari play soccer the other day, and I just let him complain while I'll continured on my conversations next to the football pitch on a partly cloudy sunday morning. And then he just screamed at me, "I'm not like you! You're always so damn happy!" He's right. I guess that's got to get old. But not for me...

I sent my lovely donor a happy birthday letter. I still haven't heard from her. And at risk of being annoying, I think I'll always continue to write her. She saved a life and a family. I just can't leave it alone. Unless one day she asks me too. (Hope not). 

I registered yesterday to become an Immerman Angel. This was the organization in Chicago that helped me so much when I first was diagnosed. I was so angst ridden about what decisions to make that I interviewed about twenty people who had had AML. Ten who had chosen to do chemo and ten who had chosen transplant. It was so good to speak to people who were alive and well and happy with their choices. In the end I came out just as confused, but I think the real benefit was that I reached out. It was incredibly comforting.  Well, they were all Immerman Angels, and the organiztion hooked me up with them.  So, now, I'm on their list and might one day, have the priveledge of returning the favor.

It was a little freaky regisitering for them. I had to write down my entire medical story. I had to go back in to my papers and figure out all the different types of chemotherapy I did. How many times. What the outcomes were, etc. If I calculated correctly, I did 12 rounds of chemo that put me in the hospital for about 30 days each. Over a period of almost four years, collectively, I was in the hospital for a year. And in that time I had about nine different types of chemo. As I was calculating this I was starting to feel really toxic, and freaked out. Almost like it was too soon for me to be looking at this. But this didn't really dawn on me until I had almost completed the questionaire. So I just moved through it and hit send.  Because more important to me was to hopefully set myself up so that maybe I can help someone else one day. And hopefully this is just a beginning. 

So, Happy Birthday again. We're going to the countryside tomorrow for one night at a nice hotel, with the kids and the dog. We're going to romp around in the woods. Swim in a heated pool, Have a picnic. AND it's supposed to be sunny. All I wanted to do for this birthday was to be with my family and be in nature. A human on a planet.  Lucky me. 

And thank you again. And again.
Love,
Dina

Summer, Blood and Boobs. It's all Good

This summer was dreamy. It was a summer where you say to yourself, "If I survive this transplant, I want to have a summer just like this one..." We travelled like crazy. Some short trips, some long. To Rome, Paris, Greece, Scotland, NY and CA.  It was a post-transplant travel extravaganza. Everyday I wake up and life is like this giant cup cake I just want to gobble. 

So, it's officially post Labor Day in the US.  And I guess that means summers' wind-down. There were things about London today that reminded me so much of NY autumns. Golden light. Long shadows. It made me think of corduroys and looseleaf.  And of grabbing whatever remainders of summer you can.  Today I played tennis and walked everywhere, as much as I could. I went in for my Azacytadine shot and they were so pleased to see me in my tennis outfit. I secrectly knew they would be. It's got to feel great for a healthcare provider to see a patient doing really well. What a great field to be in...medicine. If you're in on the right side of it, boy, you can really contribute to the world.

I had a recent biopsy in NY with Dr. Giralt, on August 22nd.  He was kind enough to email me two days later with initial results that there was NO evidence of AML.  AT ALL!!! None! Complete remission. And although I kinda sorta knew that, having a biopsy is nerve wracking and always throws me back into the throes of worry and fears. I can't help but brace myself for the worst.  I think it's because I never felt sick from the stupid disease. It was never something I could gage within myself. I couldn't judge whether something made me feel better or worse. The stupid disease would just creep back on me.  But now, I've got kick-ass donor cells that ain't gonna put up with that monkey business.  I am thrilled. Just thrilled. And I'm completely in awe of my donor, my doctors, my family, my friends, for staying so strong during this nighmare and holding me so tight as I had to go through this. 

I had a complete check-up and check-down while I was in NY. And I had the great big boob smash. Mammagrams are tough!  The woman conducting my tests was cleverly very chatty. She keep me distracted. She was also a massage therapist and herbalist. Then the eek eek ow! That was when she stopped the masher and went off and took a picture. They squeeze your poor booby between two glass plates until you can't stand it anymore. That's when they stop to scan you. Women just by nature of what our bodies do, have to have a high high tolerance for pain. Otherwise we'd have underpopulation and a lot of beaten up mammographers...

Just Being Here

My mother-in-law Roxanne sadly passed away quite suddenly. She died from a choking accident in a restaurant. She hadn't been well.  She'd been dealing with unexplained pain for about 5 years and was on many pain killers. Awful. 

The saddest thing for me at first, was that we were just on our way to seeing her and she was so excited.  I really wanted to reconnect. She hadn't seen my kids in a long time. Living so far away from them has been hard. On both ends. I would just hate it if my grand kids lived in another country.  I think I'd go nuts.

Is it ok to follow your kids around wherever they go? What if you have more than one and they don't go to live in  same places!? 

At Roxanne's funeral I was just so glad to be there for my boys. For Andy too. Of course it's hard to understand when your grandma is in a pretty green urn and gets set in a wall. Very hard. But they do absorb what's happening, and I could be there to hold them if they needed it.  My relief at being there was almost overwhelming.  Thankful. Thankful.  So thankful. And in some sense, it added to my goal of creating normalcy for my kids. Things were happening in the proper order. The way it "should" be. In order of age. And although she was very young to have passed, it was still in order. 

Roxanne is with her community. Her parents are buried maybe 100 meters away. Her friends from high school live near by. They sang beautiful Ukrainian songs at the ceremony. They had such good voices. It made me cry.  They are so nice in this community that they held a mass just for me while I was getting my transplant. What a caring thing to do for a nice jewish girl. And it worked! 

Many of them were WW11 survivors or refugees. If you were Ukrainian during the war, your country and families were torn apart,  first by Stalin and then Hitler.  Many Ukrainians became freedom fighters against both. Roxanne's grandfather ended up in Auschwitz   and then Eban Haezer.  After he survived that, he was freed by the Americans in 1945.  He then wandered around Germany looking for his wife and daughter. They were miraculously reunited and emigrated to the US in 1948. Hard. Hard. Times. 

Her friends have more in common with my mother- in-law than we did as her family. They knew her and understood her in a completely different way.  In a way that was very reassuring to her, I'm sure. 

This makes me rethink the idea of wanting to chase my kids around. Raising kids is so temporary.  This is probably good, because It's like this wild amusement park ride.  Fun, thrilling, surprising, exhausting. To the point where it can feel like hard work! Right?

And then when they go, (am I freaking out because Isaac's turning 13? Um, yeah) they gotta go! It's just what happens. And you want them to, right? (Wrong). So then who are you back with after that? Your friends. Your husband. Your wife. All your buddies.  And that will be a pleasure. It'll be like being back in high school. (Andy thinks I never really matured much further than high school. I take that as a compliment. Those were goods times).

I just watched the movie Amour on the plane from CA to NY. It was really poignant after Roxanne dying. She had been taken care of by her husband and care providers for a few years now. It was beautiful in the movie how their dignity was of the upmost importance to them both. His dedication to his wife being surrounded by kindness and love was chilling. When she cried out in the movie for her mama it made me realize again what being a mama means.  Having and needing a mama runs so deep. The nurse in movie said it becomes a reflex to call out for your mother. I'm not saying others don't get deep into the souls of children. They do. But mommies just seem to melt in to every cell.  And then, in the movie, when in the husband answered her as if he were her mother...gorgeous. 

How?

How do people blog and live a life at the same time?  

I had the pleasure of catching up today with a visit from an old friend and work mate, Elizabeth,  from probably my first meaningful job out of college. No offense to anyone I worked for or with previous to when I started teaching English as a Second Language and Adult Basic Education to garment workers. But teaching helped give my life some nice significance at a time when I really needed it.  Much more so than being in the commercial photography business. That was fun, but it lacked that aspect of feeling helpful I was looking for. 

I have such fond memories of teaching and it was so reassuring to see Elizabeth. She has not changed at all. (Besides having two boys and a career teaching college anthropolgy in Boston. Not shabby)  I can't tell you how reassuring it is that people don't change too much.  I appreciate so much when I can go back and be with people from different times in my life and feel like I'm there again. It's like time travelling.

 I think it's because I feel like I've changed so much since my beautiful-successful-awesome-life -saving-stem-cell-transplant.  (There's a juicing/healthy life advocate/cancer survivor named Kris Karr who calls everything Crazy Sexy. She even has a book called Crazy Sexy Cancer. I'm going to borrow from her and call my transplant my Crazy Sexy Transpant).  Elizabeth suggested  this feeling of change I haven is something called "Post-Traumatic Growth". I've never heard of it but I love it.  It's so American.  Optimistic. If you google it, you get tons of articles and "research' on it.  

On the questionable side, I could see this placing pressure on people who don't feel it to think they should, and then in turn, making everything worse for them.   It teeters on that same pressure to "heal" yourself of cancer or to figure out and change what ever it was that caused your cancer in the first place. Like it was your fault. I can't stand that. Take one look at a baby with cancer and try to apply those ridiculous rules. BUT! I have to say that the growth aspect of being post cancer does just naturally resonate with me.  I am so grateful for that.  And lucky.

The other excellent thing Elizabeth suggested was to actually plan out a time in my week to blog. Duh. So simple, right? But I truly hadn't thought of it.  I get very busy organizing my kid's lives and all the other mommy stuff, that I have completely left my blog out. Whoops! The only thing I have scheduled in my life are my magic, freaky, very awesome accupuncture appointments and some yoga.  But I can go beyond that!  I can schedule in a blog or two... It's helped me so much to blog. 

So, each day I still wake up and pinch myself.  And double take at my lovely family.  I still marvel at practically everything, which might make me slightly annoying. I'm not sure. 

I still have a horrible short term memory. My goodness, how many times a day can I say to myself, "What was I thinking? What was I doing?" Yikes.  It's crossword puzzles for me! If I can remember to do them...

I'm still getting Azacytadine once a month for 5 days. My acupuncturist says I can no longer get the shots in my belly.  It goes straight into my chi. So I got them in my arms last week and it's was so much easier. And I had no side effects!  Hope to say the same next month. 

I still get to live in London and travel to lovely places. I've been to Rome with Isaac and Paris with my Aunt. Fantastic. I get to go to Greece with my family and Edinburgh for the Fringe festival.  And to Israel for Isaac's bar mitzvah. I feel proud of that. Jews are an endangered species. We need to fight that. 

I'm hoping to become an Immerman Angel. They are a fantastic non-profit in Chicago that links up cancer survivors with people who are just beginning their cancer treatments and might want to talk to somebody who's been through what they are thinking about choosing for treatment.  At the beginning of my diagnosis they hooked me up with about 20 people. I talked to all of them. At the time, I think it might have made me partially crazy to have so much information, but when I look back, it was so helpful and reassuring to talk to all those ALIVE people! I feel so ready to offer my story or path in hopes that it might help give someone clarity to someone.  Cancer is scary stuff. 

And lastly, (for today at least) I remember years ago, (almost 4?), when I ended my first year of treatment and thought that was it. Done. So,  I asked if anyone wanted to join me in a juice fast/detox fest.  I got a lot of takers but we never did it. I guess I was too distracted with moving to London, or whatever. But since, I have bought a juicer (a Phillips) and I'm obsessed. If I can get in 3 juices a day, I'm in bliss. In yoga there's a word "prana" which means life force. I feel like the juicing fills every single cell in my body with the most fabulous prana. Here's my favorite recipe:
Carrots
Kale
Spinach
cucumber
beetroot
ginger
lemon
apple
apricot
It is sooooo yummy. I'm sure you think I'm crazy. I totally suggest the whole world try it. Find your own fav recipe. Pass it on.
much love always, Dina

Body As Priority

Now that I've been blessed with this bodily do-over, it just dawned on me the other day that my body is now my priority. Taking care of my body has always been an after thought. I'd always manage to get to it, but it was after everything else was done.  And you know, there's always something else that can be done. I know everyone doesn't struggle with this like I do. I see them everyday.  Jogging, doing exercise circuits in the park, Tai Chi on the grass...  I think the healthiest I've ever been was when I was teaching yoga. Was I so committed because I was getting paid? No... Because people were depending on me? Maybe...  Now, I hoping to get more comfortable catering to myself, just cuz it's important. 

I saw an interesting bodyworker yesterday. Steve. He's does accupunture and Tui Na (Chinese Medical Massage). I need to tone my internal organs apparently. Makes sense. Think of the beating they've endured. Countless rounds of chemo and then a transplant, then tons of pills everyday. Oy my liver! Oy my kidneys!  My first assignment is to drink 2L room temp water everyday. That's a lot! And I shouldn't have anything cold or raw! Oh no! I LIVE on cold and raw!  These things actually cause your body to warm up as they rev up to warm up the cold food you've eaten. This is initiated by the liver (which is already taxed by medications) and causes more inflamation.  Toning the organs means working to relieve inflamation.  And eating soups and drinking room temp water is called for. Yikes.

I do actually feel like I run hot. My face is red with graft vrs host. I have to be a vampire now and stay totally out of the sun, or else I turn into a tomato! I've been appreciating living in rainy London.  Also. whenever I get fevers now, they run high! Like 104. Like a little kid.  Plus, my hips were hurting the other day from an old recurring dance injury, and when I felt them, they felt hot. (I'm meaning hot in temp, not hot sexy...)

So, the next nice day you see me, I'll probably be looking like a Katherine Hepburn wanna-be (check out her Pirate hat) or aspiring to look like one of these other gorgeous ladies:
http://www.bluetramontana.com/2010/03/vintage-hats.html

They are hot and cool at the same time. Enjoy.

Where to Re-Start?

Fifty was not the party I thought it would be. I'm still eyeing a party, but not right now. So all the "sick" ended me up in the hospital for two nights over my 50th birthday.  Rats!! Severely dehydrated and then with this intense allergic skin reaction to the antibiotic they put me on.  I feel like I'm the person who should always buy trip insurance.  We did get to have a really nice holiday together as a family though. We cancelled going to Seville, so that remains on the bucket list. But we did get to climb around southern Portugal for a week.  Basically exploring beaches and eating. I think there's nothing I like better than seeing my kids, any kids!, running around outside, wind blowing through their hair. Of course mine also throw sand at each other (and me) and squirt each other (and me) at point blank with water guns.  

Next trip, we decided, no electronics come along.  It's such a battle. Mommy vrs. the iPad.  And I am so much the loser. Even if I win, I'm the loser.  I'm like the bad guy. I've never really been the bad guy before, so it's kind of interesting. I swear (now I could be projecting), that when they turn the things off, there's a sense of relief.  Am I fooling myself? And believe me, I feel silly when they ask, "Then what should we do?" and I say, "Just look out the window!"  At least I don't say things like, "I looked out the window when I was little and I'm fine..." Because honestly, it can get boring, driving around, looking at yet another lush green hill coooooovered with deeply rich colored wildflowers, while you're on your way to the beach. Ho hum.

I'm really just kidding. I treasure these time with my family.  They're rare. And it's always hard when Andy goes back to work.  If feel there's still so much healing to do.  Just inside this precious little family. I can tell the kids are still nervous about me.  Andy too.  He'll give me an extra long hug and I just know. It's been so tough. I'm sure the kids still wonder, am I staying? Am I going? Why am I sleeping late? (By the way, I have been loving sleeping lately!)  Really it's just one day at a time. I have my freak out moments still too.  If I get a red dot on my arm, the world comes crashing down and Andy has to talk me down off the rafters, yet again.

But honestly I know in my heart we will heal from this crazy upheaval. This life changing event called Leukemia, called Transplant.  Andy and I did yoga outside in the early morning sun the other day. It was so fantastic. I could feel my body moving on from being beat up twelve ways from Sunday.  Just moving on. It's not something I can push. I just have to listen to what I need. So, I might sleep, but I ain't going anywhere kids. Maybe that's the re-start. 

Immune Systems

Well, it seems everyone in London is sick, or "unwell" as they like to put it here. And that includes us. Dacy's all had fevers hovering around 104 this week and various other accompanying symptoms which remain unmentionable (although that obviously seems like I've mentioned them, doesn't it?)  I knew things were particularly bad today when I called the pharmacy to see if a perscription was ready and the pharamist said it wasn't because everyone was out sick!  What do you say to that?

I feel like I take so many drugs already. Anti-everything. Anti-gvhd, rejection, virus, bacteria, fungus. And then pro, stomach protection, Vit D, Multi, I'm sure I'm missing some. So, to be adding in, tylenol, Immodium, cough syrup...it makes me crazy.  I just want my new immune system to do its fabulous new thing. But the pills I take compromise it so that my body doesn't reject the transplant. It's a scientific ballet. Although graceful I ain't feelin'.

So, each day, I still wake up with this giggle. And still the smallest things bring tears and smiles to me. I probably cry from joy at least once a day. Today so far was two cries. First was when Dumbledore told Harry that his mother infused him with love, and that's what makes him so special. I'm miss quoting, but it's close to that.  And the second was when Pres. Obama awarded Burt Bacharach and Hal David the Gershwin Prize for life achievement.
Here's the link.  http://video.pbs.org/video/2237921072
We're major Burt fans. Burt reminds me of the best of my childhood. He always put the whole family in a good mood. I think I might know all the words to all the songs. I could easily beat anyone at a Name the Tune Burt songfest (if there ever was one).

So, about immune systems. Many people often ask me if I'll ever go back to Goldstone here and tell him I had a transplant, etc, and thanks for your cowardly advice to go home and get my things in order. Honestly, he's killing people by not fighting for looser restrictions for who can be transplanted. I'm soooooo unimpressed and it's so messed up.  There's work to be done here and I just need to get my head around how! I had this image yesterday of Michelle Pfeifer in Batman. Such a great scene. She finally accepts her new role as Cat Woman. She walks into her sweet little apartment that has the neon HELLO THERE sign on the wall. She takes a high heel and punches out the the O and the T. "HELL HERE". I love it. I'm hoping to get in touch with my inner Cat Woman.
Cheers.

Happy 1/2 Birthday

Do you celebrate half birthdays? Somehow we created some precedent for that and now we've got a tradition going. We forgot Ari's in February so he's been racking in the Legos this week online to make up for it. Little Legos. Lego "guys". He's really into them these days.

When he was "little" he had this really cute way of singing the birthday song.  After everyone was finished, he'd get up on a chair and start over. But in his own way. Arms up in the air, top of his lungs, "Happy To You Birthday!!!! Party!!!"  So for a long while when it was someone's birthday, we would say, "Happy to you!"  So, what might seem like an odd digression actually makes some sense. Today is exactly six months from my transplant. September 21 to March 21. It's my half birthday! Happy to me! Plus, I've got all the equinoxes covered. Maybe not exactly, but close to for sure.

The final results from this last biopsy are stellar.  All of my cells are 100% donor cells, meaning non of my sneaky old cells are in me at all.  And as well, the blood-type switch over has happened.  I am now my donors blood-type. I am no longer B+, I am now an A-.  I'm up a half grade and I can still be positive if I feel like it.

I still walk around stunned. Stunned. Stunned. Stunned.

Happy to you!

Self-Portrait in Numbers

I could gaze at this all day. It's golden. It's a clean slate. It's miraculous.  Previously, those numbers would all have an L or an H for low and high, next to them. Now, nothing. Mid-range. Smack down the middle. It might be the most beautiful thing I've ever seen (and I've seen a lot of beautiful stuff).  It's shock and awe in a good way.

Dr. Giralt and the entire hospital of Sloan Kettering went over me with a fine tooth comb last week.  They are meticulous and fabulous. The preliminary look at the marrow biopsy looks, quote/unquote, great! The only thing I have is some GVHD in my mouth and a low Vitamin D level (lack of sunshine much?)  All treatable of course.

And I'm still in love with NY. My comfy blanket. And it, as a city, was even better this time because I still haven't gotten back my sense of smell from the cold I had. So NY smelled GREAT!  Can you imagine? It's like watching annoying TV with the sound down.

I had tons of fun. Sharing a studio with Susanne, Allison and Kaethe. Processing a bit of what this year has been like. For them. For me. For everyone taking care of me. Some I remember, some I don't. But ever grateful I am.

We had a great night Karaokeing (sp?) with all my NY beauties and some of their husbands too! I never even realized that the song Spill The Wine was really saying "spill the wine".  I'm not sure what I thought, but it wasn't that. We all had sore throats the next day...
LoveLoveLove

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.

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