Poignance

Each time I take my circular exercise walks around the halls of all the different hospitals I've been in, I take my music with me. Tonight, the first songs that came on were love songs. "You Got the Love" by Florence and the Machine, and then "Nothing's Real but Love", by Rebecca Ferguson.  

Sometimes I can't help peaking in on the rooms that have their doors ajar, or door shades open. Tonight, with tears in my eyes, I saw so much of that love. Caretakers, family, lovers, friends, sitting next to their loved ones. Wearing masks to protect them.  Tucking blankets around their chilly feet, redirecting vaporizers (this is mostly a lung floor), brushing back stray hairs. They'd take encouraging gentle walks pushing wheeled poles laden with saline, chemo, anti-fungals, anti-virals. 

I know everyone thinks it's harder for the person who is sick. And I'm sure it's true in most ways. But this poignant marriage of worry and love is palpable in all the people who live through and support the paths of those close to them who are ill. 

If you're sick, your only job is to get better, (that's what people tell you and want you to do).  But caretakers here kiss their spouses, partners, friends, lovers, mommies, daddies, goodnight and then go home and sleep alone. Or they go home to be both mommy and daddy to their kids, trying to make them laugh and feel safe. They do all the bills, eat what they can, cry when they can, make sense of suffering, and try like hell to take care of themselves so they can be everything to everybody while their loved one heals, or not. 

Day 4 Complete

What a longing I have for my family. I would have been terrible at some job that required me to travel a lot and it makes me feel bad for all the many people that do. I think of the ten years that Andy constantly traveled before we moved to London. It's was absolute torture.

I'm indebted to Roberto Garcia, the engineer who created FaceTime. My kids will just use it whenever. It's more natural to them than picking up the phone! They live and play so much through screens. They're so comfortable with them. Right now for them, it's all about the XBOX and the IPAD and if it means that they're in touch with me more, it's absolutely a great thing.

Isaac and I watched Chandler and Monica get married on "Friends" today. He sat on his bed in London and put the DVD in his laptop and then set his Ipad in front of it so I could see it and we and laughed at Chandler's cold feet. "Bing's just don't have good marriages!!"

Ari called later to tell me about his weird dream. He's complete jet-lagged still. Andy said Ari fell asleep last night completely wrapped around Andy's body. Holding tight. Sometimes you think you could never love your kids more, and then, viola, you do.

Tomorrow is my last day of chemo. Marty seemed keen on letting me go if all looks A-OK. Maybe Wednesday. The real effects of this round probably won't kick in until a week after it's completed. And maybe it won't be so bad? That's, of course, my hope. I told Marty I hope he's really hitting me hard. I can take it. He laughed and made a power fist. All I want is for these leukemic cells to back down. It's all any of us want. He thinks everything is going exactly as it should and again, he calms me down. 

So much of life is perseverance.  Watching the Olympics is of course a prime and inspiring example. Seeing the other folks on this floor at Sloan Kettering is a prime example. Their  goals were not chosen but actually just slammed in their faces! "You must go through these treatments to get better and you have no time to practice beforehand!" You have no coaches, just cheerleaders. But you have to go for it. 

Think about this crazy blog and my original intention to document a stem-cell transplant and the 100 days of recovery afterward. Who knew two donors would fall through and my remission as well?  Getting back into remission and a healthy donor was the hurdle before the actual hurdle. Or the Pommel Horse before the Pommel Horse.  

This is just like when Andy and I were building our family. Again, it took years of pure perseverance.  We had five miscarriages before Isaac, and two before Ari. At no point did I consider stopping. We had no practice, no coaches, lots of cheerleaders and we finally reached our goals. The payoff has been bliss. 

Just as in making kids, beating cancer involves a lot of luck. So many things have to go right. Little things, big things. Creating life, maintaining life, this is stuff that we expect to just happen. But it doesn't alway go so easily. We do our best to do our best. Love helps a bunch. I've never felt that more than now. 

Day 2 at Memorial Sloan Kettering

Sloan Kettering: 

Saying good-bye to my boys on Thursday night was one of the hardest things I have done in a long long time. I knew it would suck. No surprises there. I dramatically cried my eyes out while standing on the corner of York and 67th as their limo headed for JFK. 

We spent the whole day in the pool and ran out of any time they might have had to take me to Admitting or to my room. They had a plane to catch, and honestly, I didn't really want my kids to have to escort me to my hospital room. Yuck. They've been so brave and supportive. At this point, I just feel like protecting them from all this. Hospitals, chemo, seeing lots of sick looking people milling around. They've done their time. It's just me who hasn't. 

When I got to my room, I sat on the bed and continued to cry. I've never done any of this without my family or close friends right next to me. Although I do have a roommate here. Her name is Dina too. And she immediately gave me a hug and did a little visualization with me. She was open and generous emotionally, to a complete stranger. I'll never forget that. 

She has two boys too. Eighteen-year-old twins. And she has leukemia as well. We lit electric shabbos candles together and shared challah and grape juice. I'm definitely in New York. 

My being a wreck has dialled down a bit. FaceTiming with the guys has been really helpful. I just wish there was SmellTime, so I could breathe in their heads, a delicacy I like better than food. 

They've been on major jetlag in London, sleeping till 1:00pm. And watching the Olympics.  Ari likes the swimming competitions. Maybe he's inspired considering he proudly nailed swimming for himself this past week. I love watching the swimmers. They look so free. 

Sloan is a very different hospital from Chicago and London. Being in New York for me is really comfortable. I swear, everything is cultural.  Marty continues to have a very calming effect on me. There's a lot of optimism here and everyone gets my jokes. 

I'm nervous about being here without Andy. He usually acts as my ears and my brain. It's so important for a patient to always have an advocate and Andy is a great one and has always been a cab ride away. When I was nervous about this round of chemo not being strong enough, because I didn't get into the clinical trial, or because I can not do any more Idarubicin with it, Andy's the one who looked at Fludarabine for me and said, "Don't worry, this is strong stuff".  He reminded me that Marty knows what he's doing. Fludarabine is typically used as a prep for bone marrow transplants. I'm pretty optimistic this can wipe out my leukemic cells. It has to. It will. And it has to. This is why...

Tomorrow is the Day

I don't know if it's stall tactics, but I've managed to delay my admission to Sloan Kettering till tomorrow. It sort of just worked out, between the pre-treatment tests I needed to do, and my wanting to be with the kids as much as possible while they're here. They go home tomorrow and I go in tomorrow. It will be long and excruciating counting the days until they come back.

Isaac and I stayed up late last night talking. I'm so proud of the person he is. He's heartfelt and supportive and is going to make some fabulous life partner very happy one day. 
Ari learned to swim yesterday with no floaties. Isaac and I had been working with him in the pool all day. And then Andy came home and went for a swim with him and BAM! Ari's swimming. Not sure how that happened? But he so proud of himself and we're so proud of him. It's the cutest thing in the world.

It was just a matter of confidence. Such an important life skill. But as I saw in Ari, sometimes you just can't be confident until you're ready. Otherwise, you're kind of being an idiot. Who wants to swim when you can't swim? It makes total sense.

So, speaking of confidence, Andy and I went to go see Marty and his team on Tuesday. My lungs are perfectly fine, so I breathed a huge sigh of relief. I was so worried all day, and then I saw Marty and I felt so much calmer. I think it's a matter of confidence. My confidence in him...

He told us I might be eligible for a clinical trial for a new drug that when mixed with a commonly used drug makes it into an entirely new drug that targets leukemic cells specifically and effectively. It's a randomized study, so if I get into it, it means that not only did I qualify for it, I also luckily got randomly selected for it by a computer. I'd love to be in this study. My fingers are crossed and my prayers are in place.  If not, then I do the original FLAG drugs, (Fludarabine, Idarubicin and Granulocyten and Cytarabine) that Marty suggested. But, I've done so much Idarubicin type chemo that to do any more might risk heart damage. So, that drug might be out.

I had an echocardiogram yesterday. It's like the sonograms you get when you're pregnant. I kept looking for a baby in there. But, no baby. Although the heart looks amazing and so alive on video. It's like this relentless cheerleader. Little valves clapping together in rhythm. Go Go GO! I was feeling very appreciative and grateful.

Speaking of grateful...When I was staying at Andrea's house, the people in the building across the way put the letters spelling GRATITUDE across their loft windows facing out. So when I woke up every morning I would see that word. And now that I'm staying in Rye at Tracy and Larry's, I take the New Haven trainline on Metro-North into the city when I need to go to the hospital. There's a big billboard sign, just at the top of Manhattan that reads GRATTITUDE (2 T's, I don't know why). And I haven't missed seeing it on any train ride into the city yet
. 
Maybe that extra T is for Tomorrow.

Stayin' Alive

It's kind of weird to be in Westchester County. I love staying with Tracy and Larry. It's very secluded and you could be anywhere lush in the world. Tonight Ari was skinny dipping in the pool. Free as a bird.

As soon as we venture out though, it's my childhood all over again. Last night we drove by my old temple and the house I grew up in. Really to show Ari, although I'm not sure he really cared. 

But today was hard. We went out for Tapenaki and driving home from White Plains, we passed the hospital where my mother died. I think it was called Westchester Hospital then. It's now an assisted care home. I always asked my mother why she wouldn't go to Sloan Kettering.  She didn't want to be far from my father or to make it hard for him to visit her. I totally get that. But I also totally don't. And I didn't then either. As I'm facing a really difficult situation for my family to visit me, it feels like the worst thing in the world, but the best thing for me to do. What if my mom had gone to Sloan Kettering? What if...

As of now, Marty wants to admit me on Tuesday. We'll have a meeting with him on Monday afternoon and discuss results from the lung biopsy. No news so far. It wasn't so bad. Arpine hung out with me and made the time go by, even though they were delayed big time.  And today I have a sore throat and I keep thinking, "Oh no! I have a sore throat! I can't do chemo next week!" But then I remember I'm supposed to have a sore throat. It's all bruised from the lung procedure. 

I'm so sad about the shootings in Colorado today. It's unthinkable. Too many guns in this country. My heart goes out to everyone involved. I hope prayers can help because I know so many people are praying. But the obvious more realistic fix would be some super strict gun law. I don't think you can pray your way into gun control. I know you can't pray peoples' children back into their lives.

Arpine said when she was driving across Westchester from Hastings-on-Hudson over to Rye to see us here, she was on the insane, turn-y, curvy, confusing connection between 287 and The Hutchinson River Parkway and "Stayin' Alive" came on the radio.  Weaving in and out of trucks, she's singing along and she realized that it was such an appropriate theme song for me. It is exactly what I am doing here. I'm staying alive. And it couldn't be more fitting as I reminisced about days long ago when Kaethe, Allison and I were in 6th grade, and we would do The Bump and make-up dances to the "Saturday Night Fever" soundtrack.  And the dance continues and continues.

I Guess It's All Starting

We came to our friends Tracy and Larry's in Rye yesterday and it's warm and green and blissful. They are so generous, offering us to stay here whenever. I've been floating around in the pool with Ari, after cuddling with him all night long. And then the hospital called. I have to maybe have a bronchoscopy tomorrow. To make sure that the fungal pneumonia I had is all all gone. It's hospitals and tests and everything starting. I can't cry in front of Ari, but if I could, it would be a flood. Just feeling it today, that's all. Love surrounds me. I know that. I'm blessed in so many ways.

I Heart NY

A year ago, when I was in Paris with Susanne, her son Isaac and my son Ari, we decided to go on photo hunts together. Isaac hunted pandas, Susanne hunted Buddhas and Ari and I hunted for hearts. 

Soon after that, I started a little folder on my Facebook page where I posted all the hearts I found. And of course, you can imagine I found tons and tons of hearts in Paris, the city of love. They were everywhere: graffiti, stores, clothes, bridges, you name it. And then I continued with this adventure and found that London has quite a few hearts too. If you look around, hearts are really pretty easy to find.  And then I came to NY...

I couldn't help but notice the glaring lack of hearts in NY,  besides the classic, I Heart NY slogan. To find them, you really have to search. But really, you have to turn off your searching mind and just turn on your intuitive mind. It just starts with a feeling. But if you're really at a loss, graffiti is always a good place to start looking for hearts, and I eventually did find one. It was small and embedded within a bunch of other graffiti on a median divider on Chambers St that had all sorts of yellow crime tape stuck to it blowing around.  

But that heart came after my walk over the Brooklyn Bridge where when I was at the midway point, I thought to myself,  "I haven't seen a heart in a long time." And then I started thinking about my friend Susanne who I've known since I was fourteen.  And I started thinking about her children and the tragedy of her losing her daughter Shay to Epilepsy.  All of a sudden I felt this overwhelming feeling of Shay. And I became amazed at how Susanne is so much a part of me. And I started to feel that intuitive "heart" feeling.  I knew I was about to come upon one. And three steps later, there was a beautiful, chalk-drawn, pink heart on the pedestrian walkway of the bridge. I looked down, and it took my breath away. I thanked Shay for her sweet visit to me and photographed the heart like ten times to get it right. 

Don't get me wrong, I think New York has lots of heart. It's just not in your face. And sometimes you have to look for it and sometimes you have to just let it happen. New York embodies the intensity of life very well. It's why I and ten million other people, are so attracted to it. What I like about it is that it kicks ass, has a fabulous sense of humor, and is full of people with really big hearts. Hearts that you have to look for, and hearts that you just have to let happen. 

Thanks for the Memories Bone Marrow

It wasn't until I was sitting by the water today in the DUMBO part of Brooklyn, staring at the Brooklyn Bridge, that I realized that walking over it has been on my Bucket List for years. I forgot that I always wanted to do it! And there it was staring back at me. It feels kind of uncomfortable, when you're "sick", to take on physical things. And even though I  feel very very well, these stupid tests keep telling me, "No, no, no, you're sick..." So then I start thinking, "Oh no, what if I can't make it across the bridge. What if something happens!" So then, thank God, there's this other part of me, that's like, "F#ck That!" So I went!  Plus, I think it helped that my friend Anurag, whom I spent the day with, told me that it's only a mile long. Wow, sometimes things sure can get built up in your mind! You know? Like, for example, stressing out about getting a stem cell transplant.

But in terms of the transplant, what's to be scared about? The alternative is not a good option. At all. I realized today, laying on the grass, that I really need this transplant. I just don't think the Spontaneous Healing route is an option anymore. Yoga is great. Eating well is great. Thinking well is great. Breathing well is great. Healers are great. But my bone marrow is shot. Whatever switched off its intelligence, it really did a good job. My marrow just doesn't know how to behave anymore. It is confused, and just needs to be written out of the script. It's OK bone marrow, we're going to replace you. You don't need to play this role anymore.  It's like Marilyn Monroe in The Misfits (although she was great in that). The movie just made you feel like you wanted to save her, or give her a break, or just tell her, "It's Ok. Go home. Heal yourself. You've done a wonderful job."

This is actually hard for me to accept. This whole time, in the back of my mind, I thought my body was going to figure this out. I thought that it was going to remember the correct way to make happy blood.  I've truly have never given up on it. But I think it's time to say good-bye. Thanks for getting me to age 49, but I'm moving on and getting some new bone marrow because this just isn't working out. I guess we're breaking up. But thank you for all the good times. 

I haven't written much about my young years, other than describing how my friends actually parented me in the true and loving sense. They helped stave-off the effects of being raised by people who didn't love themselves and did not love their children properly but instead belittled us to heighten their own sense of self-worth.  I was twisted with tears daily, often reduced to a clump on my bedroom floor. I remember a distinct feeling that there was something wrong with me, on a cellular level. Something I couldn't take care of on my own. 

It's funny because, despite this glitch in blood making, I've got a very strong constitution. I'm so grateful to have been able to tolerate so much chemotherapy and still do things like walk across the Brooklyn Bridge. And do yoga. And enjoy Manhattan like everybody else and enjoy my family and friends like everyone else. Even if I am the lady with the shortest hair in town.

Relationships

It's not that I haven't had anything to write. It's just that my head has been spinning. I just couldn't focus and really couldn't hold a pen (or laptop) until right now...

The best news of all is that they are completely willing to work with me at Sloan Kettering. In a way, there's nothing more to say?!  But, I'll say more anyway...

Seeing Marty Tallman was a warm reunion and reassuring. You can tell that the folks at MSK are no slouches. In anticipation, I was worried that we'd walk into the building and it would feel like a Big Pharma Cancer Machine. But it didn't. Not at all. It feels family-ish.  People are warm, with BIG senses of humor and big hearts and big brains. When I was getting my blood taken, there was a pamphlet tacked on the corkboard behind the nurse that read, "Relationship-Based Care". Isn't that cutting-edge? I think so. 

The biopsy went extremely smoothly because I had Allison there with me.  She drove down from Cape Cod and held my hand for three days straight. She stroked my hair and made me laugh and we played songs off my playlists that we used to sing when we lived together in NY after college.  The sweetest of those songs that day probably being the Beatles, "Here Comes the Sun".  Plus, the doc who did it was a smooth mover. Not too painful...

I wish the results of my biopsy had been better. They're not horrible but not ideal. I went back up to 14% blasts in my marrow and now 2% in my blood. Not great. But at the same time, my platelet count is very very good. And platelets are the first thing affected by leukemia. So, I'm chugging along.  

But since my blast count is up a bit, I must do yet another round of chemo with Marty. Then after that, I will quickly begin the "conditioning regime" with Dr. Sergio Giralt, for my transplant (which basically means even MORE chemo).  

The 15th floor at MSK actually is a solarium and has an outdoor space that I will be allowed to go out on during this first round. It will absolutely save my mental/emotional/spiritual butt.  When I go to transplant, that will be on the 8th floor and it's much less of a party. According to the calculations we did with Dr. Giralt today, if I start this chemotherapy on this coming Thursday, (God willing all my organs test out a-ok and I can start) my date for my new beautiful, brilliant, life-saving stem cells going in will be August 24, which is Allison's daughter Arden's birthday! I love that! 

It was a tough week for me emotionally. I have NEVER missed my family as much as I did this week. Having that time with Ari and Andy in Greece was a precious gift and a beautiful reminder of how close we are. And having Isaac be away at camp for four weeks...it feels like forever! We're all in different places and honestly, I hate it. But, as my wise friend Heidi says, "It's Life".  

This will be a long haul. After I get the cells, I'll be in the hospital for maybe 5 more weeks. Then I can stay somewhere nearby (no idea where yet) and I will need a 24 hour a day caretaker to be with me at all times until I can go home in December. THAT is a hard one. Who has a 24 hour caretaker?? I don't have a mommy. My husband is holding down a fort that includes two boys, a dog, and a very consuming job, in another country...

I will need help. I will need to maybe ask friends to take turns. I have been leaning so hard on my friends. So hard. But I will need this so that in the future I can be there for them and take care of them.  And in the meanwhile, play, laugh, explore, support and love them like they've loved me. 

My friend Arpine was with me yesterday all day after Alli left. I love her dearly and one of my favorite things about her is she takes pictures of everything. Both her parents were photographers and she got the gene. She's completely captured relationship-based care in two photos she took of me with Marty and with Sergio. It's all about relationships.

Unpack & Re-pack

It's pouring here in London tonight. Four days in Greece made us forget all about that! Poor England. Having a muddy summer. It was nice to hang up my down jacket for four days (I'm not kidding). Greece was a delight. And I got to meet people Andy has known and been working with for over 20 years. I loved them all. Warm, passionate, funny, generous people. 

I did a session with Michaelis the Healer in Athens. His hands really are HOT. It seems like he worked mostly on my third-eye and my solar-plexus. It felt nice. Hands-on healing can be THE nicest "complement" to chemotherapy and hospitals and regular old doctors.  Michaelis is an energy healer and I wouldn't be so intrigued if there weren't SO many people I had met that have been cured of something by him or knew someone that had been cured. Everything from severed nerves, colitis, and cancers. He doesn't speak much English. But I think I understood that he thinks I could be cured working with him for nine months twice a week. He also said he'd work with me after the transplant if I decide to have it. 

It's sad the Nora Ephron passed away. She had AML and wasn't a good case for a transplant. I realize that just having a donor match is a blessing. It's a HUGE thing!!!  And my being and feeling strong are also huge. As Michaelis scanned my body he said that I did not have any organ damage.  It's a relief. And I'll be so interested to see if all the tests I'll have this week at Sloan Kettering will confirm that. 

I leave tomorrow for NY and will meet with Marty on Monday at 4:00 and have the biopsy at 5:00. In the UK when they do a biopsy, they sedate you with valium and it just makes the whole thing so bearable. In the US, you get nada. Just some local anesthesia that hurts maybe more than the damn procedure itself! Americans are TOUGH! 

So, on Monday at 5:00pmEST please send me some pain enduring vibes and I'll do my best to be a good patient. One time, in Chicago, I was getting a cavity filled and the guy was so bad I punched him. It was honestly involuntary! But I was kind of glad I did it.

Living Life

It' late at night. But it feels OK. We've booked my ticket to NY on Sunday to stay for one week. Allison will meet me there. Thank you Alli. And we'll meet with Dr.Tallman who still signs his emails to me with an xoxo. And I'll meet Dr. Giralt. It feels right. And although it's so tough on all of us, it's the right thing to do so I can get better. 

We have also last minute have decided to go to Greece for four days. Lucky us. Andy will show me all his work stomping grounds and I'll get to meet some of the people I've heard about and that he's worked with for years and years. And Ari will play at the beach. Yay! 

I've got some pretty new headscarves and I'm ready to go. 
Love and Light and Blue Skies,
Dina xoxo 

Now That I'm Really Thinking About It...

I'm so nervous to be so far away from my family while I get a transplant.  I'm considering not getting this tailormade transplant because it means I could stay here in London. Maybe in my mind, I'm making it seem worse than it will really be for everyone. For my kids. For Andy. For me.

Andy likes to call me "The Hearth".  I guess he means something like the center of the home. It's such a compliment.  And I just hope my kids are OK while their hearth is getting better in New York City for four months.

My friend Heidi just left this morning. She was here with us for a week. It was supposed to rain all week and we had lovely sunshine instead. The thing about Heidi is that for her, everything is life. The good, the bad. You just keep on going. There's no expectation that everything is going to be perfect, but you use your ingenuity to deal with it all. Gracefully. 

She's got an upbeat attitude. She was a huge part of my embracing London. When I was so sad to leave Chicago, she always reminded me of what an adventure we were going on. And she'd remind me that nothing's permanent. "If you hate it you'll come back".  Like nothing is the end of the world.  And whenever we would part and I'd get teary-eyed, she'd say, "Don't worry. You can't get rid of me that easily."  And thank God for that.

Well, I'm just a bundle of nerves this week. Next Monday will likely be my bone marrow biopsy. After which we'll jump on a plane to meet the doctors at Sloan Kettering and wait for the results of the biopsy. After which a ton of decisions will be made. What kind of transplant? When do I start? Do I just stay in NY and begin or will I return home first and then come back? Who will be with me? When and how do my kids come? How does Andy coordinate all this and work as well? What will my mental state be like? Will I be blessed with more waves of strength or will I be a mush?  What about the dog???

I didn't realize till today how far over on the east side Sloan Kettering is! I'm not much of an east sider, but it's not far from Serendipity III. It's one of my favorite restaurants in NY because it's rife with good childhood memories for me. It's changed a lot since I was young, but you can still get a Frozen Hot Chocolate and a Ftatateeta Sandwich which is basically cream cheese on french toast with apricot jam. Yikes! 

So, just to calm myself down, I realize I've done a lot of chemotherapy in my life. I haven't done transplant chemotherapy. But I've probably done close to it. I have survived so far. Gotten through things like dehydration, blacking out, super high fevers, appendicitis, fungal pneumonia...  I'm sure I'm forgetting stuff because I think it's like childbirth, you just forget the bad parts and the world is overpopulated!  

The other possibility is that the chemotherapy has completely scrambled my short term memory, (even though whenever I mention that anyone else they say, "No, I have that too! It's not the Chemo."  Alrighty then. I guess it's true then that we all can't remember what we had for dinner last night but we can remember what we ate on prom night? (That was a Japanese steak house for me. The shrimp dish). 

Today Ari has gone off to the zoo with our friend Lucie. She is a dream of a person. She has an easy laugh. Loves to help. Is logical. Rational. And so hugable too. She's our neighbor, our friend and feels like one of the family. She calls Ari, "Monkey Business" and she's so right. And I'll bet they're off visiting the monkeys right now. 

Isaac's officially been at camp for one week and we get to have a 10-minute phone call with him this evening at 6:30.  I remember phone calls at sleep away camp always made me homesick all over again. We're going to try to keep it cool and not say things like OMG WE MISS YOU SO MUCH COME HOME RIGHT NOW!!!!  I think we can handle that?