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!

An Invisible Sign

I'm so glad I did the 5K for Race For Life. They raise money for Cancer Research UK. I was alone amongst this packed crowd of women in hot pink. Leggings, wigs. T-shirts, tutus. Everything hot pink. I was meant to run with a friend but she hurt her ankle. And then, clutzy me, I trip and fall over a seemingly invisible free standing sign in Paris, and fractured my elbow. Whoops! I was walking with Ari next to the Paris Plage, which is a long sandy area they bring in during summer that stretches alongside the Seine for people to play in. It's so great.. There were giant beach chairs whole families could fit in, fabulous large acoustic bands with crowds around them and plenty of sunshine. Then, just as we were passing a 125 anniversary commemorative model of the Eiffel Tower  built out of 324 red lacquered bistros chairs, I guess I was so distracted, I went down. Landed straight on my left arm and felt a slight pop in my elbow. It was like my lower arm bashed into my upper arm! I remember seeing these two cute teeny kids on scooters as I was falling and I hope I didn't yell out anything profane. Ari said I didn't... I opened my eyes, and there were those two cute little kids, staring at me. I said, "Hi! You're so cute!" They were American and their parents quickly offered help. But oddly, I was fine.  I could totally move my arm! So we wandered on. Yet the next day my arm couldn't straighten very well and after a brush with a few handsome French doctors I was told it was fractured and I was given the chicest sling on the planet to wear for 3-6 weeks. It looks like a Baby Bjorn. I think I might look like I gave birth to my arm.

So, was I going to walk this 5K on my own with a fractured elbow? I thought about it all week long. And I left the decision to the very very last minute. I needed to be in Hyde Park Sunday morning at 11:00am. I called a cab at 10:00 and I was right on time. This was a race to help people suffering with cancer. How could I let an elbow stop me? That's just not a good reason. So when I got there my favorite part was writing on my back plaque whom I was running for.  I wrote: "I am running for my mom, my sister, my dad, my Uncle Gary. For my extremely supportive family and for Monique. My stem cell donor!"

Tonight I write before I leave for NY to be at the beach with friends. And in one week we leave for LA, city of angels, to meet my angel, Monique! I love this story. I love the way this story ends. It's a really really good one. I think it's a hopeful story. And it's a story about good people. Monique did not have to do any of this. She has NO idea who I am. But that didn't matter to her. This is a pure example of generosity. I can only repay her by having a good life. And I find the challenge absolutely exilorating.

Wings!

I grew up during Charlie's Angels. During Farrah Fawcett's Charlie's Angels. I fully admit that she was by far my favorite.  So pretty and blond and soft-spoken. But you could tell Charlie really respected her and she just looked so great with a gun. Or maybe it was just all about the hair...

From 1976-1980 she was THE star. (At least in my eyes).  From my early Junior High School days, all I wanted was WINGS...I was obsessed with it.  I tried so many things. I'd blow dry my thin, fly-away, twelve year old hair until it became all burnt out looking and then I'd curling iron the front until I looked like I had two pieces of corn on my forehead. And then I'd go to school like that.  Here's a shout out to anyine who was friends with me: "Thank You!"

 I'd worry about my wings everyday, knowing that it was an absolute fail, but that there was nothing I could do.  I had completely uncooperative, split-endy, mind-of-it's-own hair.  And of course there were the girls that DID have wings.  I remember being awe-struck by them.  One girl in particular: not only did she have wings, she had fabulous lip gloss and rode horses.  How on earth could anyone keep up with that?

Well, turn the clock forward 39 years. I am so proud!! After countless rounds of chemo and losing my hair countless times, I have been rewarded with not only good health, but WINGS!!! And I just HAD to post a picture to show off.  It's a miracle! (I'm referring to the good health, of course...)

So Excited!

I could not be more thrilled. I have made a date with Monique! To meet her! And her absolutely beautful and charming daughter who is the same age as Ari.  When I first got on touch with Monique, I felt so badly like I wanted to give her something or do something nice for her. All my ideas she shot down and she finally said, "Save your money and come visit".  So I am. We have a date for early August to go the pier in Santa Monica and play.  I am so glad she's agreed.  Monique in Santa Monica! Very fitting in my opinion.

We are all flying in. I don't want to overwhelm her but there are a few people that want to meet her.  She is very loved.  I'm thrilled that Kaethe will be flying in with her daughter.  Kaethe helped me so much along the way. She set up the doner circle at Gift of Life that has raised a bunch of money allowing genetic testing for 721 donor samples which found 11 matches for people in need and thus resulted so far in a successful transplant for someone else.  She has also done tons of outreach and gotten many people on the bone marrow regisitry since I was diagnosed. She is also my oldest friend. She became my best friend in sixth grade. That was 39 years ago.  What you wouldn't believe is that she looks the same. I'm not kidding. I'm looking forward to seeing her on the ferris wheel...

I'm making a set of hair bows for Monique's daughter. She likes pink. Everything I make I feel like it's not pretty enough! I'm psyching myself out. I'm so grateful, so enamoured, so smitten, I'm like frozen.  They're just hair bows!  You can't get too precious about hair bows. I don't have girls, but given the amount of times I notice lost hair bows in the street, I realize, they are just something that pass through your life! Not something to get too attached to. I've often thought that hair bows could be a good business because people certainly don't buy them just once and they look super cute. Plus, they ain't cheap! The really nice ones can go for a high price!  So, that said, this date we have planned is a great thing in terms of my hair bow deadline. Now I have one! These are going to be cute. Pink butterflies. Pink feathers. Pink sequins.

Last week I had another round of Azacytadine, and the requesit pre-medication blood test. It is always so nerve-wracking.  If I feel the least bit tired or have a sore in my mouth, I think, "Oh no, this is it. On please, let me stay healthy just until I meet Monique. I just want to thank her in person.  I just want her to meet my husband and my boys so that she could really know us and know that she saved all our lives".  My goal, ever since that beautiful bag of stem-cells came to me on September 21, 2012, was to get well and to meet my donor and thank her.  I don't want anything to mess that up. I am incredibly relieved every month when they tell me how "brilliant" my bloodwork looks. But this month, wow, I am one month closer to meeting Monique.

Barcelona Dreamin'

Last April we had planned to go to Seville to see some Flamenco.  We ended up not going because somehow I contracted a virus called Campylobacter and ended up super sick and all dehydrated and in the hospital for three days. 

Seeing real Flamenco has always been on my list.  I think it is something I inherited from my hispanophile father. Well, at least he was an hispanophile until he went to Spain on a tour after my mother died. Sadly, he was no longer impressed, but actually disappointed. He saw too many swastikas drawn about in the Spanish cities for his own comfort. 

Last week, while I was lucky enough to be in Barcelona with Dee and Alexa, I did see some swastikas. Two of them. Near the Miro museum.  I was thrown aback though.  They had circles drawn around them and lines drawn through them.   It was all in the same hand, done by one person. A little odd: Stamp out swastikas by drawing one and then drawing a line through it? Questionably effective at best.  I had to ponder that one, albeit is better than the alternative.

I have quite a lot of affection for graffiti and and I really appreciate public art. I see it as an interesting way to learn about the state of the heart of a city.  I look at graffiti for hearts and photograph them.  I have a running log of hearts from all over the world now.

Some cities have a ton of hearts and some don't. Oddly, despite the fact that there's a ton of graffiti in Barcelona (it's mostly contained to garage doors, kinda of like "obedient graffiti"...) there are very very few hearts. The two cities so far, where I've found the most are hearts are Jerusalem and, of course, Paris. But after being in Barcelona and liking it so much, I now question whether I can judge the amount of love in a city by its amount heart graffiti.  

So anyway, Flamenco. We did get to se an impressive late night show in a teeny venue, and absolutely loved it.  I was enthralled and I think I loved it more than I thought I could!  I think my father would be proud.  

Flamenco is like an in your face lesson in "damn right someone's done me wrong but I'm going to feel it and sing and dance about it anyway!!!" The dancing is so heavy. Stamping and stomping and banging. Wood against wood. Like a toddler having a fit. And it's also incredibly light and graceful. The songs are sung so high by men with the deepest of voices. It feels like everyone is straining. But, at the same time, not at all. Despite the songs being so full of angst and loneliness, there they are, in this close group, supporting each other. There they are. Dancing, clapping, singing. It's like they're saying,  "if you have a body, you need nothing else because then you'll never be alone." 

Flamenco seems like an art of opposites existing at once. Opposites that need each other in order to exist.  Maybe you can't fully understand one thing until first you feel it's opposite.  I could relate relate to that. After being so mad at life, now I can forgive life and let it be what it is. Embracing it I don't expect one particular thing or another. It is supposed to be a dance of opposites...

I loved the keys we got at our hotel room in Barcelona. They commissioned a number of artist to create designs for their key cards. One of ours was hot pink and said "OBNOXIOUSLY HAPPY" on it. I feel like that sometimes.  I took that key home. I'm going to frame it. Obnoxious. I know.

I also keep thinking of the Picasso museum in Barcelona. It's a very fresh and proud perspective of his work. They have the earliest of his paintings there. Self-portrait oil paintings done when he was a young boy of fifteen. They were as moving as Rembrandt. In the exhibit you are able to see him develop through the years as he passes through each period. His Social Realism paintings brought tears to my eyes. He had a heart wrenching ability to depict the sadness of loving a sick person.  This is called Science and Charity. 

As he changed it seemed clear that he trusted himself. He was able to continually reinvent his approach toward creating art. This exhibit celebrated how he was continually exploring and trying new things. 

There is one room at the Picasso museum that is so ornately decorated with gold leaf molding that hardly a painting could stand up to it. The curators were brilliant not to hang anything on the walls. They built beautiful glass cabinets in the center of the room that held the most charming oversized ceramic plates that Picasso made in his very late years. Each plate had a simple asymmetrical portrait etched or built into the center of it.

 

Childlike and so evolved, much Like Matisse's paper cut outs, I admire so much how these artists were inspired and working up until the last minute. Until they couldn't anymore. They lived very very full lives. Inspirational (to say the least).

I

After the (Bar Mitzvah) Party's Over

(Written on 13 May)

What can I say post a party I'd been looking forward to for years? One I was not sure I'd make it to. One that taught me so much about friends and family and commitment. But mostly about generousity. Isaac, if you read this one day, I'd like you to know that you encompasses for me everything I love about Judiasm. You are a blessed child, and although I sometimes call you spoiled, you are not. You are kind. Studious. Committed. You are thoughtful. You deep down understand the Magic of this life. What I call 
G-d. You understand this crazy human gift we've been given and intelligently strive to perfect it; to perfect what G-d gave you. And also, you don't waste your time. I love that. I can not thank you enough for becoming a Bar Mitzvah. Although being Jewish can often be unappealing, considering Jewish history, and I know it would be so much more fun to just dance around the Christmas tree and not have to explore your Jewish side, you have done it with grace, and respect. Thank you. 

Your dad and I had the best time celebrating you this past weekend at your big party on a boat. I
Hope we didn't embarrass you too much. I love you, 

As I got my shots of Azacytadine last week, I, as always, was heavily grateful to Monique. Sometimes gratitude can feel so light and free. Like, "let's dance on the beach!" And sometimes it's just dumbfounding. Like being lost and adrift on a sailboat in the middle of the sea when some supertanker cruises by and notices you and pulls you aboard. Monique, you are my supertanker. 

We had so many friends and family surrounding us this last week. We had 14 people sleeping at our house in all crazy configurations. I loved it! I do think I was meant to live on a commune or kibbutz. 
We drank wedding wine with friends whose nuptials we missed three years ago due to my cancer and illness. 

I had the opportunity to much more deeply bond with family members whose relationships were thwarted when I was growing because of my devisive acting parents.  That was so healing!  I met the grown son of my first cousin Suzy for the first time! I took selfies with cousins with rainbows behind us and the giant illuminated midnight London eye in front of us.

I got to feed yummy barbeque and chocolate to seventy wonderful, well behaved, almost bizarrely mature 7th graders. So fun. 

And now I'm on a plane to Barcelona with my enlightened Aunt Dee and cousin Alexa. Seventy six and 21 respectively. I'm humbled that they love me and have celebrated every step of this journey with me. 
And hats off to my charming seven year old Ari who toasted his brother with such charm at the party that he brought the house with a huge ovation. Or I should say, he brought the boat down! 

I cried myself to sleep last night with how much I love life and how sad I am that we're all going to die one day. It's just so amazing here. It's paradise. Fresh air, rain, sun. Having a body to hug with. 

Happy Birthday to the African Raven and me.

Well, we checked out of the Ryokam paying full price. I just couldn't do it. You know, rip them a new one (if you know what I mean)?  Plus I thought it best to spare Andy the embarrassment. But i did snap some photos of the offending carpet and various other stains. (Who knows what I'll do with those?)  Ironically, upon check out, she gave us a gift of candy and said "it is good luck in bringing you money". We had to laugh, because it definitely worked for her!

We then took the bullet train again. Now from Kyoto to Hiroshima.  When we arrived in Hiroshima, we were met by gentlemen in suits from the shipyard and took a two hour drive to the coast, to Innoshima Island. The minute we arrived we dropped our bags off and put on hards hats and white gloves to go see the shipyard and ship number 766. We learned she doesn't get her name until she is properly christened. 

There was such affection for this giant, brand new, ready to launch, carrier of grain and wood and ore. Beautifully designed, the building of her employes 1000 people and supports the town and island. 
Today was a bright morning and as we drove back to the shipyard for her launching, number 766 was decked out in red and white banners and streamers.  Families from the island all came to watch. Shipyard workers in blue coveralls held so many balloons they looked like rainbows wearing hard hats.  An antique bell was rung ten times and then yard workers ran under the boat to remove the least neccessary supports under it.  Then, as it's god-mother, I blessed the ship, it's crew and it's owners. I then cut a red and white cord with a beautiful hatchet. This set off a mechanical momentum that caused a bottle to smash on the ship's hull and then the entire 37,000 ton ship began to release backwards into the harbor. It was huge and practically silent. The beautiful African Raven had been launched! She seems like a tough bird. I'm proud to be her god-mother. It was phenomenal. Really. 

This was such an unusual thing to do and a very cool way to spend my birthday. And although my allegiances are quite strong for September 21th, my re-birthday, I'm back to appreciating my original birthday and hope to spend both days in much celebration for many years to come. It might be hard to top today. But we can always try...

Taking Care of Myself

written saturday 29 March

When I went to New York two weeks ago to have my biopsy done I had the great fortune of getting together with my New York clique of girls who propped me up and peeled me grapes and wiped my tears and probably cleaned my puke on a day to day tag team basis with intermittent relief from other angels who flew in from all over to give them a break.  (I couldn't have done it without any of you..) 

Getting together with my NY crowd, while we talk trash and I watch them drink too much wine is one of the funnest and funniest things to do. They are a talented, smart, rowdy, witty and loving crowd. Thanks ladies...

After that 24 hour whirlwind (way too short) I took Amtrak up to Boston to see my original clique. My girls from junior high. We met in Boston to be nearest to Allison after her back surgery. Kaethe came from Denver and Susanne from Tucson. We talked and laughed and cried and analyzed and ate and shopped and walked and it went way too fast. 
I know that nourishing all these friendships is an integral part of taking care of myself.  And I know that taking care of myself is of the upmost importance. 

I'm writing tonight from a very dirty ryokan (a "traditional" Japanese hotel) in Kyoto, Japan. We spent a lovely day scratching the surface of an ancient culture. We walked through Buddhist temples that were orange and gold and filled with old smooth wood and incense. In one, I lit a candle for good luck for my babies.

The cherry and plum blossoms are just yawning open here and the sun was especially bright it seemed. There were throngs of Japanese tourists, Chinese tourists, and us. Everyone seemed so happy to be roaming around these ancient hills. I love walking around in a happy crowd. Everyone was dressed so cutely. Chic and neat. I wasn't sure where to be looking or what to be taking pictures of. I started off with the usual pictures of sights and then us in front of sights. Then, as usual, I always mix in photographing the hearts I find everywhere. But before long, I just had to start taking pictures of shoes. All the awesome shoes. Six inch high red platforms. Super glittery loafers with giant glittery bows. Colorful Dragon Beard trainers. Tiny toddlers wearing itsy bitsy high-tops.  I could hardly focus on anything until we stopped to have a soy milk green tea soft serve ice cream. (Possibly now my new favorite food on the plant, trumping dark chocolate covered almonds and steamed kale with soy sauce and tahini). 

After such a nice day, I'm still very jet lagged. Its late late and the rain is pounding down. I'm laying on my futon and straw mat, wide awake. It stresses me out because I know I should be asleep and that I need my sleep. It was the same this morning in Tokyo.  Andy and I were running to the train station in order to catch the train in time for the tour we booked in Kyoto. I was stressing out. I was sure we were going to miss our train and that all would be lost. I had bought seats yesterday specifically on the right side of the train so that we could see Mt. Fuji as we passed by. And now, I was worried we were going to miss Mt. Fuji too! At one point Andy said to me, "I didn't just sweat my ass off for the last three years to watch you stress out like this. It's not worth it!" And he was totally right. 

So tonight, I started writing this because as I lay on this hard futon on the floor in this odorous Ryokam, I'm stressing out.  Maybe I'm writing about it to help calm myself down. If I told you how much we were paying for this, it would make more sense. But I can't even bring myself to write the number down and then see it in print!  It's a lot more than the $30 that ,maybe, it's worth. 

Unfortunately, I am the one who booked this place. Kyoto was a side trip that I really wanted to take and it got planned in an unplanned hurry.  It's high season here because of the cherry blossoms, so I said yes to staying here without doing the proper research. It was suggested by the concierge at our hotel in Tokyo and so I grabbed it (against Andy's advice I must add). So later, after we did do some research, Andy pulled up trip advisor and I thought "uh oh, it's one of those love/hate hotels". People were either elated or repulsed! I started getting nervous...

Well, a really stinky smell hit us when we first stepped in to the ryokan. Now I realize that the smell is unavoidable and lingers everywhere. Then, dinner was absolutely repulsive. An inedible meal we had to sneak out on in order to find a second dinner in town. Plus, there's filthy carpets they make you take your shoes off to walk on. I am for sure, peeved and stressed out. and I know it's not good for me. 

I always liked the wit of this quote: "Resentment is when I drink poison and wait for you to die". Susanne reminded me of it when we were in Boston and discussing such things. And I'm remembering it now as I'm laying here, wound up and jet lagged, hoping someone asks me how my stay was tomorrow morning at check out so I can them tell them the truth and  only pay them the $30 they don't deserve. 

It's difficult because they're not nasty in any way. I just don't think that half used bottles of soap in the shower that is actually a hose hooked up to the sink tap, and a totally funky terry cloth seat cover on the toilet seat (not the lid) is cool anywhere where people are paying for the night. Somehow I doubt this would be what you might find in a traditional royokan. Andy and I quickly renamed this place "Royocan't".

So, in honor of my sustained health, I will try to compartmentalize this experience while I try to get a few hours sleep. I will leave this blog post in a cliff hanger as no one knows how it will end up at check out tomorrow. They're bringing breakfast to the room at 8:30 so I have a mind to sneak out to Starbucks before they arrive. I'm going to put my poison down, and set the alarm clock for 7:45...

Pristine

Yahoo! "Pristine" is how Dr. Giralt described my bloodwork and the results of my bone marrow biopsy two weeks ago.  I'm stunned, even though I felt things were good.  It's just that when that big fat corkscrew, needle, tapper, poker, digger thing starts in my hip in search of bone and marrow there's always a few nerves--a shadow of a doubt.  It brings back bad memories. But this is starting to feel real to me. I think my marrow, my body, have completely accepted this re-start. And the worries about breast cancer were nothing as well. It's all good today.

I'm coming up on my original birthday. March 31. Although I feel so much more attuned with my new, September 21st birthday, I'm going to celebrate on Monday by christening a ship in Japan! How crazy is that? How fun. How lucky.  I'm in a hotel in Tokyo right now. Late at night. Just having Facetimed with Isaac. Andy fast asleep.  It's quiet. And I'm alive.  So thankful. Pinch me!

Sitting on a Plane

I think I just watched the saddest movie I’ve ever seen while heading to NY for my  one and a half year check-up and biopsy. First, I watched Le Week-End, and I loved it. Any movie with Jeff Goldblum and Paris, to me, is simply irresistible.  Plus, being that it was shot in Paris, (spoiler alert) of course, it’s about Love.  Old love. It’s the type of love that is so deep that there’s just no chance to wriggle out of it anymore, even if you still might wish you could. There were a few good laughs to be had as well.  Highly recommended, by the way.

I promised myself when the movie was done, I’d do some work on the computer.  But then I was helpless in front of that screen with that “in-flight” display of options.  I couldn’t resist.  It’s rare that I’m on a plane by myself, so of course I want to watch the movies that most likely no one will watch with me at home. If there isn’t a super-hero in it, or a Russian spy, I’m usually out-voted. So in my lack of discipline, I perused the British Airways offerings and chose a Chinese film called The Stolen Years. The description said it was about a young woman who wakes up from an accident with amnesia and cannot remember or figure out why she’s divorced.  Sounds pretty interesting, I thought.  She can only remember the deep love she had for her husband five years earlier, before they separated. She finds him again and begs him to explain and help her remember her life. Well, guess who cried her eyes out for two hours, in the privacy of a packed 747?  Me.  First, I used up all the nice napkins and then all my tissues. I tried as best I could to dampen my whimperings so as not to freak out the guy sitting next to me. 

This happened to me once before, over 20 years ago, when Andy and I were flying to London on Virgin. It was the first time I was on a flight with an unending stream of movies to personally choose from.  We stayed up all night.  I was going to meet Andy’s parents for the first time.  I watched three movies that flight, ending on Into the West, with Ellen Barkin.  Such a sad film.  Of course, the mother dies and leaves behind a loving husband and two boys.  I was so spent when I finally met my future in laws. Who knows that they thought? 

Now, of course, all these movies I mention are about love.  Love Love Love. It’s hands down my favorite thing.  I thrive on it. I exist on it.  I could never do without it.  I know I’m obsessed with it and I’m lucky because I have the luxury to be.  I’m not the bread-winner at home. I don’t have an ass-kicking or kick-ass job. On any given day I can go to the park with my kids and my dog.  I can lay in the swing in our front garden and look up at the early blooming magnolia it’s hanging from. I can just dissolve into the love of it all. 

The other day I took an exercise class and got so much of my energy from thinking about my stem-cell donor Monique and the loving life-saving bag of grace she gave me.  I feel so thankful to her. She gave me not only my life back, but, a year and a half later, I can slowly feel my body coming back. She gave me my body back.  And I just love it. I love my body.  I love breathing, bounding up the stairs, I love hugging and cuddling and just generally having the energy to do stuff!

I feel so much forgiveness toward my body now and I totally see how forgiveness can be so freeing.  When you hold a grudge, no one cares but you.  You’re the only one feeling those feelings.  Why, when something bad happens, do we perpetuate it within ourselves? Why is it so hard to forgive?  It must be something in evolution. Like, “damn, I’m not going near that saber tooth tiger again, He was a real ass to me…”.

The only thing I have a really hard time forgiving is cancer.  I wish I could, because it makes me so angry. And who needs that?  In some ways, maybe I can forgive cancer, for me, only because of what I’ve learned from it.  It’s helped me grow, and I hope, be a better person, mother, wife and friend.  I take very little for granted now. (At least the things I am aware of).  But, I’m so mad at cancer for all the people who have to deal with it and then do not have the time to learn from it, or recover from it. 

I’ve been asked more than once what I think causes cancer. I used to have theories. I no longer have theories.  I really think it’s just crap luck.  A lot of the time I think it’s hard for people to hear that, because what can you then do to avoid it?  Not much.  I’m a huge advocate of taking good care of oneself.  But it’s not really to prevent cancer. It’s more so that you can enjoy your life.  So you can enjoy your kids, and  have a twinkle in your eye and a spring in your step. It’s so that your nagging backache doesn’t distract you from the little things.  I would hate to miss the almost thankful wink my seven year old gave me when I caught him in a lie, or the surprising fierceness my gentle, thirteen year old shows on a muddy, freezing, rainy, rugby field. 

I was reminded this week of the pain of cancer.  That feeling when I first find out.  I was at the endocrinologist because my cholesterol is out of control.  Most likely it’s because of an anti-rejection drug I take called Tacrilimus.  Most likely it will subside when I go off the drug (whenever that will be…).  In preparation for this appointment they did a Well Woman blood panel on me.  All my blood work looks lovely, beautiful, fantastic, (thanks again Monique).  So we got into discussing the little stuff: Vitamin D, Calcium, a slightly sluggish thyroid.  Then, at the very bottom on the last page there was an elevated reading for something called CA-15.3.  Of course I wanted to know what that was, so I asked.  All of a sudden the doctor turns a greenish-grey and takes his glasses off.  I thought, as all those numbers and explanations of things were swirling around in my head, that he was exasperated with me because I asked about something we’d already covered.  But then I looked at it again, and I was pretty sure we hadn’t discussed it yet.  I looked back up at him and I could see he was searching for words.  He said, “ I don’t want you to get worried or upset.  I have no idea why they even did this test, because it doesn’t tell us anything, but it’s a marker for cancer”.  And I had that feeling again.  It’s like my blood runs out and then I get this bad tingle and feel like I’m going pale and then my head falls forward and hits the desk I’m sitting at.  He gets out his phone and googles the marker and quotes how it’s, “Indefinitive.  A rarely used marker for breast cancer” and blah blah blah.  And he says, “Please don’t worry, please don’t let it ruin your day”, etc.  So I had two choices right there.  Freak out or not freak out?  Listen to the doctor or not listen to the doctor?  I decided to listen to the doctor.  Which worked, only on and off, through out the day and night.

I wasn’t going to tell anyone.  Not even Andy. But then I had to, because I couldn’t lie. And I couldn’t fake not being scared. I had to once more burden my husband with talking me down. And again, I felt angry at cancer and for all the people who have to get told shit news and then be talked down. And I felt bad for all the people who have to do the talking down and for that empty feeling they all must feel.  And then, once again, Andy sweetly said that, “You should forget about it if you can. It’s nothing.”   I know he loves me.  Old Love. A lot of love.  And that’s the reassuring thing people say when they love each other.   Whether they’re in Paris for the week-end, or not.