...and...100!!!

This is it! The last day of 2012 and the last day of my most fragile months after transplant. Day 100. So now it's just BEYOND...

It's really exciting to me. All happy inside. I left a message on Robin Roberts Facebook page. She's the anchor from Good Morning America who was on the transplant floor the same time I was. She's really loved and has lots of fans. She received her cells from her sister. I heard she's had some rough patches (no surprise) and I hope she's doing much much better. She also had the brilliant Dr. Giralt.

I can't tell you how much I miss Drs. Girlat and Tallman and all my sisters in the USA.  What an incredible time of change and healing that was for me.  And I feel that will always continue. As our first nanny Carol used to say all the time, "Life is no joke".  She's right. EVERYONE has their story! Everyone. Andy and I were reading about Dave Mathews the other day. His sister's life ended tragically. So sad. And yet he continuesd to write and gives the world songs like "Everyday" and "Steady As We Go". Sheer gifts. Brilliant.  If you have a chance, take a moment and listen.

It continues to be so wonderful to be home.  So much lovin' and snugglin'. Smiles. Kisses. Hugs. And although life is no joke, it;s the jokes that get me through. 

Amal and her kids made these for me :-)

And then my crazy kids ate them and lost their teeth!!!!  What's that about?

Just kidding. But it's so funny that they're both loosing teeth by the handfuls at the same time.  

May Everyone Have a Sweet New Year. 

Brush Your Teeth.

Love Each Other.

Love Yourself.

Eternal Thanks to You All for Pulling Me Through 2012.

Here's to More Blessings in 

2013.

Love, Dina

I Am Home

What a beautiful Christmas Day. So many smiles, hugs, family, friends. I couldn't help but make a few toasts to me!  It's not really me, but it's the miracles of this whole thing. Of life. Of the strength of my family and friends.  That I am doing so well. I still can't help but remark on the sheer life force of those cells! And the receptivity of my body. Talk about turning over a new leaf!  This is a new Life.

I hope my donor had a nice day. I hope she feels really good about her gift to me. Hope she gets my letter soon. It's a real labaryinth to get a letter to her. It's all snail mail. It gets sent from me, to the doctor's office for approval, to the donor coordinator for approval, the Bone Marrow Registry for approval and then sent to my donor. Then, hopefully, she'll read it and follow the same procedure to get a letter back to me. That's a lotta red tape, approvals and people to get past.  What if she doesn't write back?  She will, right? I'm sure...

I hope everyone who stopped by to read this entry today felt loved in some way today.  Got a hug, gave a hug.  Had some yummy food and a fantastic dessert. I even took a moment to thank Jesus. I was born a yoga doing Jew, but he's certainly such a peaceful, miracle making, misunderstood guy.  For him today, I'm thankful.  Thankful for birth and babies and life.  Thankful each time I connect with my inner peace and each time I feel understood by those I love.  There's nothing better.

On the plane

Delta 5. It's so James Bond sounding. But it's just a flight number. A very special flight number. It's my flight home. Home to my guys and my puppy and my house and this life that I started in London. I feel like the Cheshire Cat. I have devious smile on my face. I beat the odds. For years I felt like I was being kicked out of my life. I hated it. It was limbo. I feel so different now. I feel grounded in this life. On this planet. I'm looking to expand my bucket list. My priorities seem different. My guilt levels have decreased. My giving a hoot about whatever's happened in the past has decreased. Admittedly, I still do have pangs of worry about the future. Bloodwork, biopsies. All that. But not to the point on ruining this moment. It's just pangs, not a deluge.

Tonight I dedicate my transplant to my girlfriends in NY. Ladies, without you I could easily not be here writing this tonight. I might not remember anything. But I remember you.
Lots of forever love.
Bon Voyage and see you soon!
Cheers (as they say, a lot, in england)
💝Dina

Day 91

It's been 91 days since September 21st. Doesn't that seem like a lot of days? Three months sounds shorter. It feels like one could get a lot accomplished in 91 days. But in three months? Less. I think that time is this crazy twisty curvy thing. Although really the way we look at it culturally is linear. It makes no sense otherwise. But how could my friends and I from sixth grade be planing our 50th birthdays together? 50. Wow! When did that happen? They still seem 12 to me (a very mature 12, of course). h Honestly, I like to think about time sometimes, but who really cares? Mostly its just spinning off, doing its own thing.  At this point I just know i have more of it and I'm here and I'm glad to be celebrating. I'll celebrate anything these days.

Today is my last day in NY. But only till February. It's been such a nice time here, albeit for a transplant. But it was a great transplant (in retrospect). I've been nursing this cold so I've turned down some fun invites from Janet and LJ to Christmas parties, and I turned down tea with my cousin Nancy. I'm not usually one to skip a party, especially now that I have truely embraced the Life is Short motto. Lets do it all!! But I also understand on a deeper level than ever before, that I have to take care of myself.  I'm my number 1 girl now. I have to be. I understand this more solidly than ever. I actually feel really proud of my body. She's so good! I just want to thank and take care of her because she rocks, and she's a trooper and surprised us all. Thank you body.

So I did a little floating around this shopping crazed city today. There were lines to get into stores! Ugg! (Literally). I almost bought these cute cheetah print fur lined loafers there until I just couldn't find one way in which they'd be practical in London. Fur lined loafers that you can't get wet and look bad with socks. So if its a chilly day and you want to wear your furry purchase, your freezing ankles will be sticking out all day. For me fashion and practical need to meet. But it's a challenge. It's hard to look cute in the winter. But we can keep trying, right? Or for me, starting Monday, it's to look cute in the rain.

Most important are my boys, who have been waiting and waiting. But, at least They're always cute, in every season, and now I'm sure they have been struggling with "time" and for sure have  a cockamamie sense of it too. Just like their mom. See you Monday morning at 9:30 at heathrow boys. I love you!

Hooray for Hollywood?

It's been one heck of a week.  The tragedy in Connecticut is felt so deeply in NY. The whole country. The faces of those kindergarteners... I have a kindergartener.  How do those families not let this ruin their lives?  How do you not let tragedy  ruin your life? Time I guess.

I spent an hour or so reading the second amendment.  It's a really tough one. Where's the loophole? I couldn't find one except that the amendment is so subjective. But that only breeds a lot of arguement. What's a militia and what are arms? When it was written they were thinking muscats, not assault rifles. And I know that the saying " people kill people, not guns" is obvious, but guns sure do make it easier!  Plus, it's clear there were massacres way before hollywood movie themes became so violent, but what is this obsession with The Gun?  I don't get it but its creepy and brings out the worst in this country.  I hope that what happened in Sandy Hook will bring out the best in people. Create some good changes.  Because this really is an amazing place.

I'm going home to London on Sunday. It's really a miracle. I know I say that a lot. But I'm thrilled and goosebumpy all the time. Speaking of Hollywood, I'm getting my own truely American happy Hollywood ending. I had a biopsy on Tuesday and the preliminary results on Thursday showed that I have 2% blast cells. That's normal. We all have some. But 2% is low. Yay! In a week or so they will know if all my cells are still donor cells. Last biopsy, two months ago, they were. And that's what you want. You want those donor cells to take over, take charge, and do their thing. My bloodwork is all normal too.

Dr. Giralt asked if I could somehow get the word out in England that it doesn't seem to be so important to only transplant people who are in remission. I'm a great success story and there's many others like me. Maybe at Sloan Kettering it's almost like they're questioning or at least pushing the envelope on what remission is? Who knows if I could ever find the right audience to spread this word. Head of the NHS? I don't know yet. I will try for sure. But there's  millions of people on the Bone Marrow Registry willing to help, I think medical policies should at least let them try.

I found out that my fantastic beautiful amazing generous donor is American. It means that I don't have to wait two years to meet her. Just one. If she wants to. There's a reunion party every year in October at Sloan for recipients, donors, and doctors. Apparently the crowd grows and grows each year. Maybe my donorband I could meet there? I would love that.

Oh, it's so late. I took a nap today because I'm nursing a cold before I get on the plane. And here I am on California time right before I go to London. Good night friends
💝Dina

Blog Humbug

No. I'm just kidding. I love blogging. And it's not intentional to turn this into a weekly blog at all. Speaking of weeks. This has been a very fun one. Dee was here with me and I dragged her to every possible thing I've been wanting to do or can do. Even if it meant seven things in one day. She's a great playmate AND a family member. How great is that? We'd walk across town. Down town. To the MOMA to see "The Scream". To the Zeigfeld to see Life of Pie. To the MET to see Matisse. Downtown to see Thr Fitzgeralds and then eat at my favorite veggie place, Angelica's Kitchen. And more.

I've been kind of on fire. Being well has turned into Do It Now for me. As long as I've got engery,  I'm doing it! It's a welcome attitude for me . I've often be the one to think, "oh, we'll do it later." Or, "I'm sure we'll be back this way another day".  I can't do dat no more. It's like an old dress that doesn't fit. Not sure if its too big or too small but I just know it doesn't fit,

My dear friend Allison's father passed away here in NY on 12/12/12. He fought pancreatic cancer with all his might and did quite well. But Wednesday was his last day, here with us, in his body. He was a renowned pediatric oncologist. He saved lots of children. And made available the first pediatric bone marrow transplant in this area. He did a lot of good in this world, and I heard today, that while the family was in tge hospital room staying quiet to create a peaceful environment, and his breathing was shallow and his blood pressure low, he all of a sudden said, " donate my clothes!" He was still thinking of ways he could help.

 He was given such a lovely funeral service today. He would have loved it. At the gravesite I cried the most when the dirt was being shoveled. Ashes to ashes. Returning to the earth. To what we're made of. He has four children, but I was saddest when he wife, his brother and his youngest grandchild added the dirt in to cover the coffin. His second wife Judy cared for him like a saint, and now she had to heal. His brother Simon escaped the Nazis with him. His youngest grandson Eli won't know him like the others do.

The rabbi said two things that come to mind now. One was, "love is stronger than death". And the other was, "it is what it is".  I believe both those things. They resonated so deeply with me today. These were the thoughts that got me through my transplant.  The prayers from people all over. The love. I clearly felt it bolstering me. Without doubt. And I also had to take each challenge one at a time. It is what it is.

People are amazed at how well I'm doing and how well I seem. So much so that I guess I'm amazed too. The doctor is so happy. My friends are so happy. My family is so happy. And me too. I'm a lucky lady. Those were amazing donor cells. And even though as I was thanking my doctor yet again for the many-eth time yesterday, and he said, ".honey, 95% of this is voodoo", I know it's more than that. It's can-do and wanna-do and how do you do, and a bald hair-do. And now all I want to do is do do do.

Shakes, yoga and luck

So I have been struggling a bit with the shaking hands since the transplant. Like I can never eat sushi with chop sticks gracefully again. And today suddenly they've disappeared. I don't want to get beyond myself- transplant symptoms do seem to come and go. But last night Janet and  I took a restorative yoga class at the integral yoga institute, and it was amazing. This is where Janet and I, and a few other friends did our original yoga teacher trainings. I hadn't been there in years. It was such a pleasant blast from the past, and so nostalgic, I had goose bumps, and tears in my eyes and glee in my heart. And then we take this really cool class that wasn't about stretching, it was about releasing and letting go. It had a fabulous chunk of meditation and chanting and deep relaxation (no yoga class is proper without this, in my opinion). And for the postures, you would set yourself up with props: bolsters, pillows, belts, to support your staying comfortable in a posture for a pretty long time, and just consciously breath, and relax and watch your breath and mind and just stay there in this yummy reclining twist, or whatever it was. We were SO relaxed afterwards. It was unusual and brilliant and if you ever have the opportunity...

Today was the last shot of the first round of Aza. I've been dehydrated and dizzy still and getting fluids everyday, which helps s lot. My aunt Dee came in for the week and that always puts me in a great mood. We get to talk about everything. She's my friendmom/momfriend aunt. I'm very lucky to have her.  I'm lucky to have everyone who's taken care of me, not only for my whole life, but during my transplant. I'm just sorry things got so scary and touchy at times. I'm sure that couldn't have been fun. Thank you again to everyone who never seemed to leave my side. It was an incredible rotating crowd of angels. I  am a very lucky lady.

19 days in NY

We are counting the days at chez DACY in London. Is there anyway I could meld the people and fabulousness of these two great cities? I guess it's just to bounce across the pond a lot. I'm not usually a bouncer. I'm usually a chicken. But maybe I am more of a bouncer now. I feel a little bit more brave after this, Still cautious because Im always a mama first, unwilling to entertain what I might not have in the past. I have friends in London who pick up their kids and go anywhere. Safaris. Treks. Far away islands. Long plane flights. They always come back with smiles on their faces. Such a great influence for me.

I started my first week of Azacitadine on Monday. I feel like I had 20 minutes of feeling good and free and a bit back to me and then week one of Aza quickly flew in. It's not horrible. It's out patient. Gives me a tummy ache and fatigue. And an ouchy bruisey belly. Sometimes I find that distraction is the best medicine and sometimes it's just being horizontal. Yesterday I did both. Rested all afternoon. Thank you attavan. And then went to my friend Mark's 50th bday karaoke party with friends from college I've know for 30 years. They're all gorgeous and if anyone's changed its only for the better. We sang "give me one reason" by Tracy chapman and "say you love me" by fleetwood Mac. We were on fire! So much fun...

Today I bring my poor belly back for shot number three. Ouch. And then I hope to go to lunch with Penny and Dave whom I met at Hope Lodge. Besides being braver, I also feel compelled to keep better touch with friends from everywhere. And I had a long talk with my brain yesterday and we've come to terms. We're going to be friends and we decided the we've filled our quota of guilt and worry and we're going to just enjoy.  I'm sure we'll be having reminding conversations, especially because my brain can't remember anything. Poor girl...

A visit

I went to see a dear friend and her family today at the hospital. Her father is there with complications from cancer. He's actually been really kickass the last year, fighting it like crazy. Survived a really complicated abdominal surgery and nasty old chemo. Doing well. And then earlier this week he had a apple Danish and his stomach went kaplooy on him. Very mysterious. Just stopped working. And they're trying to figure it out. Meanwhile he hasn't eaten in 10 days. He's 81.
I actually loved seeing him and im so sorry he's going through this. i know him since I'm 12. And his family. So dedicated. They all came in to NY because they thought maybe this was "it". But it's definitely not it. I could take one look at him and I felt like he's not going anywhere. Because there are things they can do and many glimmers of hope, he'll keep on.

You know, we complain about life, but as soon as it gets threatened, we're like "no f-ing way".  I actually think it's probably really hard to die. We fight tooth and nail against it. We're fragile, but we're strong too. No one gives up easily. I'll bet that once it is your time to move on it's probably hard to do with some grace. I think It's impossible to fight cancer and prepare for death at the same time. Just impossible. Didn't Einstein say you can't simultaneously prepare for and prevent war? I love that.
And it's similar. Cancer sucks but it turns you into a fighter. Find mr one person who's died of cancer and didn't fight their ass off...

I know I just went through a big big fight. A giant event in my life. I'm here because of fight, brilliant science and luck. People have been telling me how bad it was because I think now that we're pretty safely on the other side, about 70 days out, everyone's starting to process what the hell just happened. Seems like that chemo damn near killed me. But at the time I was completely unaware of that. And I continue to have NO memory of it. It's a gift I think. I believe that I didn't think at any time that I might die. I know I was bummed, and cried a lot, and felt guilty to put everyone through this craziness.  I was completely dependent on my friends and family who always bolstered me, protected me and helped me heal.  THAT I remember...

So tonight I wish my friend's father a bit of  peaceful rest (yeah right). And strength to keep his eye on the glimmers of hope that exist for him. Gotta go for the glimmers...