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.