Just Being Here

My mother-in-law Roxanne sadly passed away quite suddenly. She died from a choking accident in a restaurant. She hadn't been well.  She'd been dealing with unexplained pain for about 5 years and was on many pain killers. Awful. 

The saddest thing for me at first, was that we were just on our way to seeing her and she was so excited.  I really wanted to reconnect. She hadn't seen my kids in a long time. Living so far away from them has been hard. On both ends. I would just hate it if my grand kids lived in another country.  I think I'd go nuts.

Is it ok to follow your kids around wherever they go? What if you have more than one and they don't go to live in  same places!? 

At Roxanne's funeral I was just so glad to be there for my boys. For Andy too. Of course it's hard to understand when your grandma is in a pretty green urn and gets set in a wall. Very hard. But they do absorb what's happening, and I could be there to hold them if they needed it.  My relief at being there was almost overwhelming.  Thankful. Thankful.  So thankful. And in some sense, it added to my goal of creating normalcy for my kids. Things were happening in the proper order. The way it "should" be. In order of age. And although she was very young to have passed, it was still in order. 

Roxanne is with her community. Her parents are buried maybe 100 meters away. Her friends from high school live near by. They sang beautiful Ukrainian songs at the ceremony. They had such good voices. It made me cry.  They are so nice in this community that they held a mass just for me while I was getting my transplant. What a caring thing to do for a nice jewish girl. And it worked! 

Many of them were WW11 survivors or refugees. If you were Ukrainian during the war, your country and families were torn apart,  first by Stalin and then Hitler.  Many Ukrainians became freedom fighters against both. Roxanne's grandfather ended up in Auschwitz   and then Eban Haezer.  After he survived that, he was freed by the Americans in 1945.  He then wandered around Germany looking for his wife and daughter. They were miraculously reunited and emigrated to the US in 1948. Hard. Hard. Times. 

Her friends have more in common with my mother- in-law than we did as her family. They knew her and understood her in a completely different way.  In a way that was very reassuring to her, I'm sure. 

This makes me rethink the idea of wanting to chase my kids around. Raising kids is so temporary.  This is probably good, because It's like this wild amusement park ride.  Fun, thrilling, surprising, exhausting. To the point where it can feel like hard work! Right?

And then when they go, (am I freaking out because Isaac's turning 13? Um, yeah) they gotta go! It's just what happens. And you want them to, right? (Wrong). So then who are you back with after that? Your friends. Your husband. Your wife. All your buddies.  And that will be a pleasure. It'll be like being back in high school. (Andy thinks I never really matured much further than high school. I take that as a compliment. Those were goods times).

I just watched the movie Amour on the plane from CA to NY. It was really poignant after Roxanne dying. She had been taken care of by her husband and care providers for a few years now. It was beautiful in the movie how their dignity was of the upmost importance to them both. His dedication to his wife being surrounded by kindness and love was chilling. When she cried out in the movie for her mama it made me realize again what being a mama means.  Having and needing a mama runs so deep. The nurse in movie said it becomes a reflex to call out for your mother. I'm not saying others don't get deep into the souls of children. They do. But mommies just seem to melt in to every cell.  And then, in the movie, when in the husband answered her as if he were her mother...gorgeous. 

How?

How do people blog and live a life at the same time?  

I had the pleasure of catching up today with a visit from an old friend and work mate, Elizabeth,  from probably my first meaningful job out of college. No offense to anyone I worked for or with previous to when I started teaching English as a Second Language and Adult Basic Education to garment workers. But teaching helped give my life some nice significance at a time when I really needed it.  Much more so than being in the commercial photography business. That was fun, but it lacked that aspect of feeling helpful I was looking for. 

I have such fond memories of teaching and it was so reassuring to see Elizabeth. She has not changed at all. (Besides having two boys and a career teaching college anthropolgy in Boston. Not shabby)  I can't tell you how reassuring it is that people don't change too much.  I appreciate so much when I can go back and be with people from different times in my life and feel like I'm there again. It's like time travelling.

 I think it's because I feel like I've changed so much since my beautiful-successful-awesome-life -saving-stem-cell-transplant.  (There's a juicing/healthy life advocate/cancer survivor named Kris Karr who calls everything Crazy Sexy. She even has a book called Crazy Sexy Cancer. I'm going to borrow from her and call my transplant my Crazy Sexy Transpant).  Elizabeth suggested  this feeling of change I haven is something called "Post-Traumatic Growth". I've never heard of it but I love it.  It's so American.  Optimistic. If you google it, you get tons of articles and "research' on it.  

On the questionable side, I could see this placing pressure on people who don't feel it to think they should, and then in turn, making everything worse for them.   It teeters on that same pressure to "heal" yourself of cancer or to figure out and change what ever it was that caused your cancer in the first place. Like it was your fault. I can't stand that. Take one look at a baby with cancer and try to apply those ridiculous rules. BUT! I have to say that the growth aspect of being post cancer does just naturally resonate with me.  I am so grateful for that.  And lucky.

The other excellent thing Elizabeth suggested was to actually plan out a time in my week to blog. Duh. So simple, right? But I truly hadn't thought of it.  I get very busy organizing my kid's lives and all the other mommy stuff, that I have completely left my blog out. Whoops! The only thing I have scheduled in my life are my magic, freaky, very awesome accupuncture appointments and some yoga.  But I can go beyond that!  I can schedule in a blog or two... It's helped me so much to blog. 

So, each day I still wake up and pinch myself.  And double take at my lovely family.  I still marvel at practically everything, which might make me slightly annoying. I'm not sure. 

I still have a horrible short term memory. My goodness, how many times a day can I say to myself, "What was I thinking? What was I doing?" Yikes.  It's crossword puzzles for me! If I can remember to do them...

I'm still getting Azacytadine once a month for 5 days. My acupuncturist says I can no longer get the shots in my belly.  It goes straight into my chi. So I got them in my arms last week and it's was so much easier. And I had no side effects!  Hope to say the same next month. 

I still get to live in London and travel to lovely places. I've been to Rome with Isaac and Paris with my Aunt. Fantastic. I get to go to Greece with my family and Edinburgh for the Fringe festival.  And to Israel for Isaac's bar mitzvah. I feel proud of that. Jews are an endangered species. We need to fight that. 

I'm hoping to become an Immerman Angel. They are a fantastic non-profit in Chicago that links up cancer survivors with people who are just beginning their cancer treatments and might want to talk to somebody who's been through what they are thinking about choosing for treatment.  At the beginning of my diagnosis they hooked me up with about 20 people. I talked to all of them. At the time, I think it might have made me partially crazy to have so much information, but when I look back, it was so helpful and reassuring to talk to all those ALIVE people! I feel so ready to offer my story or path in hopes that it might help give someone clarity to someone.  Cancer is scary stuff. 

And lastly, (for today at least) I remember years ago, (almost 4?), when I ended my first year of treatment and thought that was it. Done. So,  I asked if anyone wanted to join me in a juice fast/detox fest.  I got a lot of takers but we never did it. I guess I was too distracted with moving to London, or whatever. But since, I have bought a juicer (a Phillips) and I'm obsessed. If I can get in 3 juices a day, I'm in bliss. In yoga there's a word "prana" which means life force. I feel like the juicing fills every single cell in my body with the most fabulous prana. Here's my favorite recipe:
Carrots
Kale
Spinach
cucumber
beetroot
ginger
lemon
apple
apricot
It is sooooo yummy. I'm sure you think I'm crazy. I totally suggest the whole world try it. Find your own fav recipe. Pass it on.
much love always, Dina

Body As Priority

Now that I've been blessed with this bodily do-over, it just dawned on me the other day that my body is now my priority. Taking care of my body has always been an after thought. I'd always manage to get to it, but it was after everything else was done.  And you know, there's always something else that can be done. I know everyone doesn't struggle with this like I do. I see them everyday.  Jogging, doing exercise circuits in the park, Tai Chi on the grass...  I think the healthiest I've ever been was when I was teaching yoga. Was I so committed because I was getting paid? No... Because people were depending on me? Maybe...  Now, I hoping to get more comfortable catering to myself, just cuz it's important. 

I saw an interesting bodyworker yesterday. Steve. He's does accupunture and Tui Na (Chinese Medical Massage). I need to tone my internal organs apparently. Makes sense. Think of the beating they've endured. Countless rounds of chemo and then a transplant, then tons of pills everyday. Oy my liver! Oy my kidneys!  My first assignment is to drink 2L room temp water everyday. That's a lot! And I shouldn't have anything cold or raw! Oh no! I LIVE on cold and raw!  These things actually cause your body to warm up as they rev up to warm up the cold food you've eaten. This is initiated by the liver (which is already taxed by medications) and causes more inflamation.  Toning the organs means working to relieve inflamation.  And eating soups and drinking room temp water is called for. Yikes.

I do actually feel like I run hot. My face is red with graft vrs host. I have to be a vampire now and stay totally out of the sun, or else I turn into a tomato! I've been appreciating living in rainy London.  Also. whenever I get fevers now, they run high! Like 104. Like a little kid.  Plus, my hips were hurting the other day from an old recurring dance injury, and when I felt them, they felt hot. (I'm meaning hot in temp, not hot sexy...)

So, the next nice day you see me, I'll probably be looking like a Katherine Hepburn wanna-be (check out her Pirate hat) or aspiring to look like one of these other gorgeous ladies:
http://www.bluetramontana.com/2010/03/vintage-hats.html

They are hot and cool at the same time. Enjoy.

Where to Re-Start?

Fifty was not the party I thought it would be. I'm still eyeing a party, but not right now. So all the "sick" ended me up in the hospital for two nights over my 50th birthday.  Rats!! Severely dehydrated and then with this intense allergic skin reaction to the antibiotic they put me on.  I feel like I'm the person who should always buy trip insurance.  We did get to have a really nice holiday together as a family though. We cancelled going to Seville, so that remains on the bucket list. But we did get to climb around southern Portugal for a week.  Basically exploring beaches and eating. I think there's nothing I like better than seeing my kids, any kids!, running around outside, wind blowing through their hair. Of course mine also throw sand at each other (and me) and squirt each other (and me) at point blank with water guns.  

Next trip, we decided, no electronics come along.  It's such a battle. Mommy vrs. the iPad.  And I am so much the loser. Even if I win, I'm the loser.  I'm like the bad guy. I've never really been the bad guy before, so it's kind of interesting. I swear (now I could be projecting), that when they turn the things off, there's a sense of relief.  Am I fooling myself? And believe me, I feel silly when they ask, "Then what should we do?" and I say, "Just look out the window!"  At least I don't say things like, "I looked out the window when I was little and I'm fine..." Because honestly, it can get boring, driving around, looking at yet another lush green hill coooooovered with deeply rich colored wildflowers, while you're on your way to the beach. Ho hum.

I'm really just kidding. I treasure these time with my family.  They're rare. And it's always hard when Andy goes back to work.  If feel there's still so much healing to do.  Just inside this precious little family. I can tell the kids are still nervous about me.  Andy too.  He'll give me an extra long hug and I just know. It's been so tough. I'm sure the kids still wonder, am I staying? Am I going? Why am I sleeping late? (By the way, I have been loving sleeping lately!)  Really it's just one day at a time. I have my freak out moments still too.  If I get a red dot on my arm, the world comes crashing down and Andy has to talk me down off the rafters, yet again.

But honestly I know in my heart we will heal from this crazy upheaval. This life changing event called Leukemia, called Transplant.  Andy and I did yoga outside in the early morning sun the other day. It was so fantastic. I could feel my body moving on from being beat up twelve ways from Sunday.  Just moving on. It's not something I can push. I just have to listen to what I need. So, I might sleep, but I ain't going anywhere kids. Maybe that's the re-start. 

Immune Systems

Well, it seems everyone in London is sick, or "unwell" as they like to put it here. And that includes us. Dacy's all had fevers hovering around 104 this week and various other accompanying symptoms which remain unmentionable (although that obviously seems like I've mentioned them, doesn't it?)  I knew things were particularly bad today when I called the pharmacy to see if a perscription was ready and the pharamist said it wasn't because everyone was out sick!  What do you say to that?

I feel like I take so many drugs already. Anti-everything. Anti-gvhd, rejection, virus, bacteria, fungus. And then pro, stomach protection, Vit D, Multi, I'm sure I'm missing some. So, to be adding in, tylenol, Immodium, cough syrup...it makes me crazy.  I just want my new immune system to do its fabulous new thing. But the pills I take compromise it so that my body doesn't reject the transplant. It's a scientific ballet. Although graceful I ain't feelin'.

So, each day, I still wake up with this giggle. And still the smallest things bring tears and smiles to me. I probably cry from joy at least once a day. Today so far was two cries. First was when Dumbledore told Harry that his mother infused him with love, and that's what makes him so special. I'm miss quoting, but it's close to that.  And the second was when Pres. Obama awarded Burt Bacharach and Hal David the Gershwin Prize for life achievement.
Here's the link.  http://video.pbs.org/video/2237921072
We're major Burt fans. Burt reminds me of the best of my childhood. He always put the whole family in a good mood. I think I might know all the words to all the songs. I could easily beat anyone at a Name the Tune Burt songfest (if there ever was one).

So, about immune systems. Many people often ask me if I'll ever go back to Goldstone here and tell him I had a transplant, etc, and thanks for your cowardly advice to go home and get my things in order. Honestly, he's killing people by not fighting for looser restrictions for who can be transplanted. I'm soooooo unimpressed and it's so messed up.  There's work to be done here and I just need to get my head around how! I had this image yesterday of Michelle Pfeifer in Batman. Such a great scene. She finally accepts her new role as Cat Woman. She walks into her sweet little apartment that has the neon HELLO THERE sign on the wall. She takes a high heel and punches out the the O and the T. "HELL HERE". I love it. I'm hoping to get in touch with my inner Cat Woman.
Cheers.

Happy 1/2 Birthday

Do you celebrate half birthdays? Somehow we created some precedent for that and now we've got a tradition going. We forgot Ari's in February so he's been racking in the Legos this week online to make up for it. Little Legos. Lego "guys". He's really into them these days.

When he was "little" he had this really cute way of singing the birthday song.  After everyone was finished, he'd get up on a chair and start over. But in his own way. Arms up in the air, top of his lungs, "Happy To You Birthday!!!! Party!!!"  So for a long while when it was someone's birthday, we would say, "Happy to you!"  So, what might seem like an odd digression actually makes some sense. Today is exactly six months from my transplant. September 21 to March 21. It's my half birthday! Happy to me! Plus, I've got all the equinoxes covered. Maybe not exactly, but close to for sure.

The final results from this last biopsy are stellar.  All of my cells are 100% donor cells, meaning non of my sneaky old cells are in me at all.  And as well, the blood-type switch over has happened.  I am now my donors blood-type. I am no longer B+, I am now an A-.  I'm up a half grade and I can still be positive if I feel like it.

I still walk around stunned. Stunned. Stunned. Stunned.

Happy to you!

Self-Portrait in Numbers

I could gaze at this all day. It's golden. It's a clean slate. It's miraculous.  Previously, those numbers would all have an L or an H for low and high, next to them. Now, nothing. Mid-range. Smack down the middle. It might be the most beautiful thing I've ever seen (and I've seen a lot of beautiful stuff).  It's shock and awe in a good way.

Dr. Giralt and the entire hospital of Sloan Kettering went over me with a fine tooth comb last week.  They are meticulous and fabulous. The preliminary look at the marrow biopsy looks, quote/unquote, great! The only thing I have is some GVHD in my mouth and a low Vitamin D level (lack of sunshine much?)  All treatable of course.

And I'm still in love with NY. My comfy blanket. And it, as a city, was even better this time because I still haven't gotten back my sense of smell from the cold I had. So NY smelled GREAT!  Can you imagine? It's like watching annoying TV with the sound down.

I had tons of fun. Sharing a studio with Susanne, Allison and Kaethe. Processing a bit of what this year has been like. For them. For me. For everyone taking care of me. Some I remember, some I don't. But ever grateful I am.

We had a great night Karaokeing (sp?) with all my NY beauties and some of their husbands too! I never even realized that the song Spill The Wine was really saying "spill the wine".  I'm not sure what I thought, but it wasn't that. We all had sore throats the next day...
LoveLoveLove