True Dedication

Had I known my path, I would have dedicated this blog right from the beginning. Instead I do it seven years after I started it. Sitting around on a Saturday night, I feel so on the other side of my transplant; on the other side of leukemia. But deep inside, I know I will never really be casual about this. I spend hours upon hours just feeling grateful. And lucky. Because lucky is all I really am. And lucky is all my family is. My heart aches for everyone ever taken down by leukemia and it aches for all those people who loved them.  My life has swung around in so many radical directions: from  thinking it was no big deal, to thinking I was doomed, to then to being back in the fight, losing it all and then being swept back up into the game again and finally winning. It was a dizzying, sickening, madness. And now I’m just a regular gal again. But what I’ve learned is that none of us is regular. We all have our shit. And we all have our miracles.   Shit usually comes in a really large and hideous looking package, while miracles come in all sorts of packages, (some the tiniest you can ever imagine).

I like the word miracle. It comes from the Latin, to wonder. And I’ve learned that for me, a meaningful life is a life of wonder.  I am an unabashed lover of art of every single type, babies, animals, nature, color - like the different blues of my boys’ eyes. I do things like choose in my mind the type of rocks that would most represent the strength of my husband. I’m including a picture. I brought these home from Bergen in Norway. They're silvery and soft and have taken a beating from the sea. But they're just as solid as ever.

I do things like see the poetry that follows around every woman I’ve ever known and loved.  In Spanish, mira means to look.  It’s so simple. Just look- miracles are constant. From your heart beating without your asking it to, to a generous young mother who said yes to donating stem-cells to someone she'd likely never know.

This blog is dedicated to my rock and husband Andy. To my two sons who breathe beautiful life into me every second of my existence. To the women who propped me up when I’d completely fallen down, and to my stem-cell donor, Monique, whose awesome Latina, Native American DNA miraculously matched this Jewish girl.  For you, I will follow what you told me, and live a good life.  The meaning of thanks is to think with gratitude. I understand this more deeply now than I ever thought I could.

Making Peace

I'm always shocked when I get back from New York after my biopsies and everything is still Ok. Even though I have my bloodwork done monthly, it's always unnerving to have the biopsy. I think it's because of the number of times I've heard things like, "the marrow's just not right", or "the cells are ugly", or "seems like things have gone pear shaped". It's the exposure to that excellent bedside manner that some doctors just seem to have. They have no idea that what they say can just stick with you forever...

But now I remain lucky. Luck is a huge thing in life. Luck and Hope. Hope keeps your head in the right place, and Luck, well without it, you're F**ked. 

Arpine came with me for the biopsy. It's always so nice to see Dr. Giralt in his pink V-neck sweater and blue bow tie. It didn't hurt that much this time. Arpine didnt watch. Kept her head down and sweated it out with me. Much better for her. It's gotta be pretty yucky to watch a giant needle go into someone you love.  In fact, I still do wonder who this whole thing was harder for? Me or those who saw me through it all. Sometimes I think about (god forbid) if the roles were ever reversed, how horrible it would be. When you're a carer you have practically no control. For me, I could decided how hopeless or perseverent I wanted to be. No one could do that for me. They could just encourage and watch. And hope...

So amazingly, I have only 1% leukemic blasts in my marrow. Your average healthy Joe can have up to 5%! That's so fantastic. It's those superior Monique Aguirre cells. She's a magic super hero! I know it!

I do have some Graft vrs Host Disease.  My skin and lungs and maybe my eyes. To Dr. Giralt, a chronic cough for six months is not OK. And skin rashes and burning itchy eyes, also not OK. They're much more ready to treat for these types of things in NY than they are in London. He said if you don't, I could end up in the hospital on oxygen, or worse. So, he's momentarily upped my medicines.  This of course,  bummed me out.  Somehow I see it as medicine = failure. Not sure where I got that? Yoga? Like I think I should be able to have a green juice everyday and this will keep the doctor away. Fat chance. This is transplant land baby.  He said I need to get used to going up and down on medicines my whole life. And so, I'm making peace with it.  

I knew at one point I'd have to make peace with this. And honestly, I feel so much better on the increased medication that it hasn't been that hard to accept. I needed this turning point. The transplant still often seems like just a bad dream. A dream, not a reality. But now I'm feeling more and more like, yes, this happened. This happened to me and my family and my loved ones.  I can own that. And luckily I can move forward too. It involved A LOT of medicine. A lot of really helpful medicine. And a lot of luck and love and always, hope. 

I'd like to say thank you so much to anyone and everyone who took some time out of their days to read this blog. This journal of leukemia. Most of the time now, I forget about making entries. What was once a vital source of maintaining my sanity has become an old friend. If you ever know anyone who is going through something hard, (and we all have our sh*t don't we?), please pass this blog onto them. Because although it's gets hairy at times, it's a good ending. Maybe it could be helpful. I would love to think that this blog might help someone. Even in the smallest ways. 

And the best thing I've learned: Love Heals and Enjoy Everyday Day. 

All my love to you,

Dina

Kerfuffle

September 21 marked two years since my transplant. I've been meaning to write since then. I like to write on these important milestone days because I like the way the dates look when the entry gets posted. But, alas, I missed it on the 21st. So, October 3rd will just have to do.  I've always liked October and I'm very glad to see another one. Isaac was born in October. And so were Allison and Kaethe. I just love Libras. What's not to like?

But we did make September 21 a very special day this year. We drove out to Wales and we got another puppy! She's the same breed as the lovely Laila but a sweet apricot color instead of Laila's beautiful basic black. Her name is Scarlett, but we call her Kerfuffle.  She causes a real stir wherever she goes; serious outpourings of love.  She's twelve weeks now and she sleeps a ton.  She will pass out right in the middle of a conversation.  Today, after a little bit of mini tennis ball chasing she lay down in the middle of a soccer pitch to take a nap. It made her look so tiny! Shes so little she can get up the stairs but wouldn't dare try to get down. She just sits at the top and gives a little squeak for assistance.  I can't yet leave her at home without a human very long so I carry her around London in a scarf tied around me like a baby sling.  I think I am attachment parenting my dog!

The week we got Scarlett I think was the quickest week I've ever lived. You know how some weeks go so fast and others don't? That one hurtled forward like a comet! It was almost scary. I feel panicky when days go super fast.  Lately I've been resenting sleep. I know it's probably the thing I need the most, but it just annoys me. What a waste of time! Tonight, as I was putting Ari to bed and reading him The BFG, by Roald Dahl, the giant talks about just this! Apparently giants don't need much sleep.  He was ridiculing humans for sleeping our lives away. He said that by the time you're 50 you've slept for 20 years. According to him, that would make me only 30, and Ari four. We laughed. But there's such a part of me that wishes it were so. I want all my years back! Which obviously is impossible, so instead, I live in this, "Quick! I wanna do everything!" state of being.

I was thinking of concluding my blog today. I don't write in it very often anymore. And my original hopeful goal was to end it after I met my donor. Now that I've met Monique, in my mind, I still feel baffled. Still overwhelmed but what happened to me. To us. My family and friends. And I'm still stunned by this happy ending. So much so, that I don't think I could gracefully end this blog today. I think there's still more to process, still more to learn. There's still some more thinking I must do, and thanking I must do. So, for today, I am just gong to say, "Welcome Scarlett". And, "Wake-up baby girl! There's no time for sleep!"

California Dreaming

It was dreamier than I could have imagined. But at 2:45am in London I'm so jetlagged. I'm not dreaming at all!!!

I'm "sleeping" in the living room so I can toss and turn and grumble all I want and only bother the poor dog, while the rest of the house snoozes away. I don't get it! How are they sleeping? Tonight I fell asleep at 9. I was bumping into walls all day and I couldn't keep my eyes open anymore. But then woke up at 10:30. Done! Clearly I need more than 90 minutes of sleep. I'm going to be more horribly bitchy tomorrow than I was today! Oh no!

But I do like laying here "dreaming" about California (where it is 6:00 in the evening, by the way).
I got such a wave of sadness sitting on the plane in San Francisco waiting for take off. I didn't want to leave. I didn't want to leave Monique.  Meeting her was so special. She's a nicer person than I could even have imagined. And believe me, I imagined she was. She did NOT have to donate her bone marrow to me.  It took general anesthesia and doctors digging into both her hips for tons of bone marrow for some imaginary person in need somewhere in the world. Not everyone would do that!  Literally.  When I tell people about it, many have said, "Yikes! I wouldn't do that!"


I know if Monique reads this she'll be embarrassed. (Sorry honey, but I just have to gush about you).  But she's simply a good person. Which isn't always so simple! She cares about people. All people. It's just so clear.  It's funny. She used to do intake in an emergency room. And it makes sense, because when you speak with her she has a clear grip on many things medical. But she's also so reassuring in her demeanor. If I was being wheeled in to an ER I'd be so glad to see her face at the front desk.

I know when we first hugged at a pretty beachside restaurant in Santa Monica there were a lot of tears. My friend Susanne said it was so emotional it was like being at a wedding or a childbirth. In a way I feel like Monique gave birth to me. And I would walk down the aisle with her anytime if she'd let me. (Too bad we're both taken). But I feel committed for life to her, just like I do my family and friends. I kept saying to her, "there's no way for you to understand what you did for me, for us, you saved my family!" And she replied, "Ok! Then just live a good life!" I promised I would. I hope that my friends and my family and the party on the beach sufficiently overwhelmed her. I hope it was a big giant hug from us: my handsome grateful family, my gorgeous friends, my beautiful cousins, my extraordinary aunt, that Monique will always remember.

I was so pleased that she accepted an invite to spend the day at Universal and come to a second party in her honor that next evening. I hope it means maybe she liked us too.  We had a fun time. Screaming on the Terminator ride, watching the kids swim in the pool, talking about schools and life and raising 7 year olds. Sipping red wine.

It's difficult being so far away.  I feel super homesick for everyone.
I will now end this 4:00am GMT blog entry. Cuddle with the dog and hope for rest. London is wet and balmy right now. Tomorrow I will head into it. Leading a good life. Thank you Monique. I love you.

The Best Days of My Life

The day I married Andy.
The day Isaac was born.
The day Ari was born.
The day Marty Tallman got me back into remission enough to have a transplant.
The day Sergio Giralt told me he could transplant me.
The day of my stem-cell transplant.
The day I came home after six months in New York.
The day Isaac was a Bar Mitzvah,
Yesterday; the day I met Monique, my stem-cell donor, and her daughter Aneeya.

My hope is that I'll quickly feel less gob-smacked, that I'll be able to process this full full circle, and eloquently write about it. Soon.

Today is the Day

August 10, 2014
Monique is on her way. We are waiting for her here in Santa Monica. Santa MONIQUE-A!!!  I had to get her a sweatshirt that said "LIFEGUARD". I know it's corny but that's what she is!
This trip here has been so life affirming. Surrounded by Kaethe, Allison, Susanne and my family. Walking on the beach. Everyone healthy, running, breathing, drumming, surfing. Laughing. Loving.
I raise my glass to life. To opportunities taken. To obstacles overcome. To family. To friends. To the power of love. To Monique.

Bridge

So excited. On my way. JetBlue to LA. I'm not sure what to do with myself. We're heading toward a giant convergence of love on this trip. The kids and I had the comforting start to our whirlwind vacation by going to Bridgehampton to stay with Andrea and her family for a week. We basked in her generosity and humor and had a great time. The Hamptons are always reassuring to me, I have such pleasant and abundant memories. At the end of each summer, while I was growing up, my parents would rent a buggy wooden house in Amagansett and we would luxuriate on the beach and buy sunflowers from the outdoor market. The sun was always so golden and the shadows were long. We would spend afternoons rolling around the roads taking in all the fascinating modern houses made from what looked like driftwood. I could still, easily, spend hours doing that. Except now, of course, a lot of those houses are replaced by much bigger, much fancier digs. But despite all the changes, traveling to Long Island will always comfort me. There's nothing like my high school  memories of being stuck in traffic onthe way to Jones Beach. Having in depth conversations with people in other cars, dead stopped on the Long Island Expressway traffic.

The plan in LA is to meet up with Kaethe, Allison, Susanne and Jenny. As well as Aunt Dee, and my cousins Adam and David and their families. We're going to have a lovely beach party on Sunday for Monique and her family. I just have a feeling she's going to be the coolest person I've ever met.  I mean cool in terms of clear in her thoughts and beliefs. Clear in what she knows is important.  It's not that this is so uncommon, but it can certainly be rare when you're in your early 30's. Which she is. I have so much respect for her.  Somebody taught her at a young age to approach life with a lot of love. And I love that! Maybe there's a gene for it and it'll rub off on me!