Friday, 1 August 2014

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.

Tuesday, 15 July 2014

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...)

Saturday, 21 June 2014

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.


Thursday, 29 May 2014

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

Sunday, 18 May 2014

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. 

Monday, 31 March 2014

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...