...and...100!!!

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

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

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

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

Amal and her kids made these for me :-)

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

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

May Everyone Have a Sweet New Year. 

Brush Your Teeth.

Love Each Other.

Love Yourself.

Eternal Thanks to You All for Pulling Me Through 2012.

Here's to More Blessings in 

2013.

Love, Dina

I Am Home

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

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

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

On the plane

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

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

Day 91

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

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

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

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

Hooray for Hollywood?

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

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

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

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

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

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

Blog Humbug

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

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

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

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

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

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

Shakes, yoga and luck

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

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

19 days in NY

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

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

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

A visit

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

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

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

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

LimboLand

Just woke up! It's midnight and I'm starving and just had some eggplant parmasen. Today had  the wackiest bouts of gains and losses in energy. Up early, did some errands. Took a Benedryl for my rashy face and had lunch with Arpine. Then came home, and took a nap. Got up and started cleaning and unpacking and totally lost energy again and took a nap and just woke up!  And I feel like I could probably go to sleep again.

I sorta went with the flow today, which is a good thing, because when I go home, mommies don't really get to go with the flow. Not their own flow anyway. Not when your kids are little. This is my first "go with the flow" in 12 years.  So, I'm really trying to take advantage of it. But it feels weird.
What will it be like to go back to full-time mommy again? Will my kids take me seriously? I actually feel like I'm going to have to regain some authority. I've started reading parenting books again...

So, about the rashy face. Giralt says it's a good thing. He's pretty sure it's Graft vs Host Disease. (GVHD). This is something you want a little of after a transplant. It's the new cells attacking my cells, seeing my skin at foreign. That means that they are fighters and they would attack any Leukemia if it were there (but it isn't, so that's good too).  Too much GVHD is a bummer because it could really attack, like your organs, and really make you sick. But luckily I seem to have this controlable amount, and most people think I just have these rosy cheeks...

So, in a way, I'm waiting to see how the GVHD pans out, waiting to see how my lack of authority at home pans out and just plainly waiting to go home. I wish I could take all my friends here home with me. Leaving them will be hard. It all feels like Limbo Land. But... in reality, is it? Not when you take each day at a time, right? I'm pretty much forced to do that here arent I? Am I going to spend these precious days, that everyone says I fought so hard for, worrying about these things? Probably. But I'm going to try really hard to just stay in the moment.  Give myself gentle reminders about it. Just doing what I'm doing right now and breathing. Oh yeah, breathing. I forgot about that.  Good reminder...

And Now For The Good News

Dr. Giralt gave me the OK to go home! He stuck to his offer of "before the holidays". He had a big smile on his face and shook my hand.  And I'm on hold with Delta right now booking my flight for the 23rd.  I already have the shakes from the medicine I'm taking, but now I have the double shakes! Excited, relieved, and nervous.  So nervous to leave my doctors here.  Am I overly in awe and grateful for them? I'm like a devotee!

Last Thursday

Thankful. Yes.

Day 60

Wow. Yesterday was day 60. I'm starting to be able to delineate between past present and future. I feel so much less anxiety since my family arrived. It was such a giant relief when they walked through the door. I think for all of us. I could tell Ari was hugely relieved to see that mommy really was in NY while he went on with things in London. That people exist in different places. Isaac I could tell was just at a huge deficit for hugs. Has needed lots of them (my pleasure). Andy's had a content smile on his face. I think it's just our all being together...
Everyone says I'm doing well and looking good.  I take that. It's hard to embrace at times because of how I feel, still so weak, and shaky from one of the drugs I'm taking. Tremors in my hands. But I think compared to how I did look and seem before, this is a lot better.
Dr. Giralt said he might try to get me home before the holidays! I thought that was amazing. But I'm not going to depend on it too much because he doesn't always stick to what he says . But the idea of it is great.
Tomorrow is thanksgiving. We're going to spend it with Tracy and her family.  It's a thankful day, for sure. I feel so thankful to my donor. I hope she's going to have a beautiful day tomorrow, surrounded by family, or great friends, or both. I hope she feels my appreciation and my love.
Yesterday Ari asked me, "mom, what happened? Why'd you get sick?" And I said, "I don't know why. It just happened." And he asked, "but way back in the beginning, in Chicago, what happened?"
I answered, "the thing in my body that makes blood just started doing it wrong. So I had to get it fixed." And he said, suspiciously and said, "that's exactly what daddy said. Exactly!" Like we're in cahoots and that's not a good enough answer. Then he asked if it's ever going to happen again, and I said, "No, it's not".  It makes no sense for me to think in any other way. I feel so confident in this process and those new cells, and the fact that  I'm meant to be with my family a long long time.

Time

I've kind of spent the last two weeks holeing up. Very stuck to the bed and sleeping. Last week I had 3 good days and three bad days. Mostly tired and tummy aches. I slept a lot. Luckily I had friends who came by and my step-mom who spent the day, to get me up and out. Walking about.  Other I think I could have slept all day and all night. Very attached to the bed.

I was also counting the minutes till the kids and Andy came. I just wanted time to go by, to go fast. And now that they're here I want time to stand still!!! They arrived and 9:00pm to Tracy's front door and nothing has ever felt so right.  To have them in my arms. to play with them. to put them to bed. They even let me cuddle with them at the same time! I LOVE that.

Grown. They have both grown. Ari is tall and Isaac has muscles! They're still very funny and silly and kind. I felt a huge relief in Ari when he saw me and hugged me for the first time. Like he wasn't sure it was really going to be true, or that mommy was going to really be the mommy he rememebered.  They both hated my new wig. Oh well. I got it on friday on a whim. All the grown ups I know like it. It's probably too brown for the kids. They know me mostly with long blond hair. but since this chemo fiasco, i think I've lost my hair probably 8 times! So in between I've had ALL hair. Short brown, short blond, really short, short and curly, longish and curly, and brown. So the wig is brown and layery and above my shoulders with a bit of fringe.  It's not horrible. It's not the real human hair one becuase they are extremely expensive and this is temporary. But it still wasn't cheap. Almost $600!! that's the cheap one!  and in time mine will grow back. In time.

I'd like to put this week into a time capsule.  A slow motion, enjoyable, ride through time and space that elongates my time with them so that there;s no chance to missing a moment. So that they're time to appreciate it all.

they're on terrible jet lag, It always seems to happen that they come here, it's already that it's five hours later for them, and they end up goofing around and staying late even for NY. They feel asleep at 11:00 tonight. That's 4:00am for them. That's crazy. We all said we would wake up at 9:00 tomorrow. Let's see how that goes. Time...

Better Energy?

I think my energy has been better. It's been so erratic I don't really want to say anything about it incrementally moving forward, but it seems like it is. I've done some good walking around and really have only needed one nap, not two. And Leslie gave me a massage today and I actually felt like maybe I had some muscles. It wasn't like I was a ragdoll where she could do whatever she wanted to me and I would hardly feel it. Today when she went into the muscles in my legs it hurt a bit! Yay for it hurting a bit? Yes, yay.

Last night I spent on my own. I went food shopping at the healthfood store and made myself dinner too.  The best part of it being sauteed kale with Annie's Goddess dressing. Yum. I'm sure if polled, the world majority would not come down on the side of "Yum" to that dinner... But I have to say I was proud to have made it. It felt so good to take care of myself.  Then I went straight to bed...

Dr. Giralt is taking me further down off the Prednisone. On Friday I'll be down to 25mg. That's a lot down from the 60mg I started at. I do have tremors in my hands. Pretty shakey. I could never eat sushi gracefully now. Luckily I can't have it anyway. I wonder when I can have sushi again? A year? Hmmm.  Also, I don't spontaneously bust and cry for no apparent reason anymore.  I just cry because I miss my kids or I'll get this weird feeling of trauma come over me and have to shed a few tears...

Although today I cried because I'm so tired of being bald. It's cold, and it's hard to find cute hats and wigs are so unbelieveably uncomfortable. It's an identity crisis. Men walk around bald. No biggy.  For women, it's just too much of a statement I feel like making right now.  At this point I don't remember my transplant, much less make a statement about it. It seems the further out I'm getting, the less I remember. I remember the round of chemo I did with Marty before the transplant chemo. But after that it's a blank. I remember friends visiting. I remember being stuck in the room because of Rhino Virus. I think I was in the hospital close to 6weeks. I don't even want to go back and count. And the more people mention what an incredibly hard run I had of it, the more I don't remember... It's a little freaky having blocked memory.  It's a good question for the doctor.  Will my brain come back like the rest of my body is expecting too?  Do I want to remember this? I guess I could go back and read my own blog... But i can't say I feel ready to do that...

Day 51

I'm a bit dumb-founded I think. It's hard to describe. I couldn't sleep last night. Wanted to try to do it without any sleep aids and ended up awake all night. I figured I could try to sleep on my own because the most anxiety-ridden weights have been taken off my shoulders. But I still bounced around the bed feeling all anxious. I took an Attivan at 8:15 this morning and slept for three hours then. Once again I find myself on California time :-)

You'd think I'd be totally elated all the time considering the great news we got. But my emotions are still all over the place.  The doctor reduced the prednisone to 30mg a day which is great. That's got to help with kookoo emotions.  One minute I'm exhausted, flat out on the couch and the next minute I'm like, "Let's go!"  It took me till 3:00 to get motivated but then Trudy and I took a long long walk today, up through Central Park to the Upper West Side. Dawdling around for four hours. Where did that energy come from? Beats me.

I'm a slowish walker, certainly by NY standards and the muscles in my skinny chicken legs are nil.  I can do a complete forward bend and lay my upper body on my legs and there is no tension because there are NO muscles! Makes for a great forward bend.  Not so great when you're trying to climb the stairs, a hill, or get somewhere quick.

We had our celebration dinner last night. I got a tummy ache in the middle of it, so that wasn't so perfect. So I thought we'd try again today and got some soup and pasta at Isabella's on Columbus Ave. We sat outside under the heat lamps, no kids around. And as I'm eating, I'm realizing, I can't really taste anything, My tastebuds are still really whacked out.  I don't really notice it when I cook my own food because I don't expect it to taste all that good anyway. But when you're at a restaurant your standards go way up. You really want to enjoy your meal, right?  That's when I realized tonight that everything still tastes bitter, like metal, or like nothing...

Well, my count up calendar today says to watch some Friday Night Lights. I'm going to keep it simple and do exactly what Allison says. If you haven't seen this series, it is so good.  I like football but even if you didn't you'd get completely sucked into these characters and relationships.

I know that with this great outcome from the transplant, I need to keep my eye on the goal of healing, resting, relaxing. Listening to my body. Breathing. I keep thinking "can't I go home now?"  But I had a lucid moment today-I'm not ready to leave these doctors. I need to be near them still. It's just how I feel. So as hard as waiting out this next 50 days will be, I have a hunch that it's the right thing.  Luckily, in one week from now exactly, my kids will be in my arms.  This is my fuel...

Great Good News

It's good! I"m in remission! Seems most of my cells have converted over to the donor cells. My blood counts are normal and I only have 3% leukemic blast. All of us do have some of those cells. Anything under 5% is normal. After a day of shaking, waiting to talk with Sergio on the phone, I got good news. I'm so relieved I can't keep my eyes open.
love and kisses, Dina

Health & Care

Feeling good about Obama. Phew. If it's just for the sheer fact that he cares if people are covered for healthcare. That's enough for me. I had my bone marrow biopsy today. Finally. And I felt so lucky to be surrounded by all these smart concerned people at Sloan. Everyone deserves that. Everyone.

Biopsies are never pleasant. Darcy came with me and held my hand and I think she couldn't help but watch a bit. I'm sure it's fascinating. Drawing marrow out of someone's hip while they're laying there awake. I'd probably watch too. And then probably feel sick for the rest of the day...Thanks Darcy.

Preliminary results should be back tomorrow around 5:00pm. I have a conference call set-up with Dr. Giralt and Andy. I can't do those phonecalls by myself at all. Good news/bad news goes right out of my head and I have no idea what anyone has said.

But 'Care' is the operative word here. It's important for me to know what kind of care helps me the best. And to find it, or ask for it. And to also take the concept of taking care of my health for the rest of my life really seriously. To take a really strong interest in my healthcare without feeling selfish about it is different from how I think I've approached it before. There can always be something more important than taking care of yourself. There's always something else you can do instead.  But this changed for me as I was reading today that aftercare for a stem-cell transplant lasts your whole life. It is a second chance on life and you want to care for it really well.

Historically, I have a hard time saying to myself "Relax. Eat really well. Rest. Sleep. Walk a mile every day" These are things I should just "do" because I'm a citizen of ME (and I don't mean Maine). My goal is to make this the new normal, without yucky mean pressure, but with love. And love for this transplant. It's a very precious gift. A gem. I wouldn't just let it lie around getting dusty.

I'm clearly not the only one who thinks of this as a foreign concept. Half the United States can't get on board with offering healthcare to its fellow citizens, or even themselves!  As though it's not something you should just have because you're a person, a citizen, pay taxes or are sick.

One more prayer request for the good results of the biopsy. It's being checked in the lab right now. God bless it. and all of us.
Lots of love and care!
Dina

Silent Through the Storm

What a long hard week for so many people in this area. Serious hardship. I feel in many ways I've just been holding my breath while things get fixed from the hurricane. And although NY has done an amazing job getting the city going again, so many people continue on homeless and there's a big cold storm on it's way in here on Wednesday.  Worries me for sure.
And then, of course, there's election day tomorrow!  I feel like Obama's going to win, I really do. He just has to. But even if he does, it still worries and shocks me so much how far Romney came in the poles. I can't for a minute understand how citizens of this free and outstanding country would consider for a minute jeopardizing women's rights to have control over her own body.  Throwing our daughters to the wolves.  I can't stand it.  I feel so strongly about protecting women and children. They are the poorest people in this country.  So many without health insurance, or housing. How could making decisions about what they do with their bodies if they get raped possibly be any politician's first line of business?

I think recovering from my transplant has taught me again that I am a worrier. Especially when I feel I don't have much control over something. It's part of the reason I moved out of Hope Lodge.  I think it's an amazing place. But just not for me. There is for sure a camaraderie there because every other person is dealing with having cancer, but for me, it became more people to worry about and be sad about.  I'm going through a moment here where I really hate cancer. I just want to punch it in the face. And the more people I meet who have to deal with it, the more I want to punch it in the face. So, moving out into a regular apartment in the regular world has been good for me. I think it will be good for my recovery.

A lot of recovery for me has been dealing with my thoughts about it. This is an unusual recovery in that although it's mostly incremental, you can easily have twisty turny awful days after you've had a great day. So, I get frustrated and will then somehow blame myself for not doing it right. Not very healing.  And then I'll get mad at myself for doing that because it's not very healing. Then I'm in this merry-go-round tizzy because of my roller coaster recovery.  Then I either call Andy and cry (poor guy) or take an Attivan, or both.

But this is the whole reason why, years ago,  I fell in love with yoga. Yoga helped me move out of the worry zone and understand a little bit how to be in the moment. And I started doing yoga in 1985! So this is not new news. What to do with my thoughts when they're being unhelpful.  I feel like I'm getting closer and closer to being able to do yoga again, I mean on the mat, on the floor (as long as it's a really clean floor). But right now even just twisting while I'm sitting on the couch clears my mind so much more than staring into my thoughts and trying to have victory over them.  There's no way I can win that one. Although Leslie had a great piece of advice for me to just tell these nerve-racking thoughts, "Not right now".  Sort of putting them off without dis-ing them completely. Pretty tricky but it works well for me right now.

So on Thursday, I will finally have the bone marrow biopsy. The results of which of course have me nervous. Dr. Giralt told me I am in remission and does not seem concerned at all. He thinks I'm doing great. So between his encouragement and my worries, I think it's all canceled each other out and I'm just going to not think. At least "Not right now...:

Testing 1 2 3

Well I'm still here at Sloan. I've watched Sandy wreck it's havoc on NY and NJ. Places I know. It will take some time to recover. Those are some wet wet subways. And my heart is so sad for anyone who lost their precious life during this. Mostly from downed trees. Seems so unnecessary. Random. Everyone I know and love here seems to be fine thank goodness. Even Sue B. sitting in the dark with her elderly mom on long island. Commitment really shows in these situations. To your family, your friends, your town. Small things are appreciated, like finding some extra birthday candles in a drawer, or open dunkin donuts. And I was appreciating that the girls from Bay Shore they were interviewing on CNN seemed really intelligent and cared for. We used to take the ferry from Bay Shore to a Fire Island summer house share we had in the '90's and Bay Shore seemed so forgotten: bridal stores with dresses from the 70's in the windows next to empty stores all around. I imagine Fire Island took a big hit from Sandy. I love the beach so much and I so dislike when they get pummeled.
I think the healthiest lifestyle I ever lived was two years in Florida. Biking, jogging, kayaking with the dolphin and manatee and getting up before sunrise to do sea turtle conservation. It felt like the first time I actually lived on a planet. And I fit right in...

Well, this week has been a real Sloan week.  I'm not saying I fit right in but they've taken good care of me. It seems since I came in with chest pain, they don't want me to leave until they've figured out why. So they want to put a scope down my throat into my belly and see what's up. But I need to have another echocardiogram first because last time they did this my heart went racing. So I had to sign the "what if" scary papers. I hate those. Just in case yuck yuck bleh bleh. I asked Dr. Giralt if he thought this was worth it and he said definitely. So OK. And then tomorrow I think maybe is the bone marrow biopsy. If the labs are open. I'm praying for a beautiful marrow. The doctors seem to be most excited about my platelets doing so well. And well heck, so am I. So, I know so many of you have prayed and continue to pray for me and my family, please I ask if you have a moment for a healthy biopsy prayer we will take it in with much love and appreciation. Lots of tests to pass, but that by sure is the most important one.
Love you
Dina

Fierce

Up and down. Leslie and I had the nicest day on Saturday. Taking a cab to central park and walking among the beautiful changing leaves. A treasured hour-long walk. Finding Mallards, autumn light, my legs. Being physically weak is shocking to me every day. And the recovery seems roller coaster-y, not progressive. Yesterday, in fact, I felt so sick with what was just heartburn but I was completely convinced I was having a crushing heart attack. We came to the Urgent Care at Sloan. No heart attack. But we all decided I should stay over for observation and I think it was a relief for all that I'd be here at Sloan during hurricane Sandy and not at Hope Lodge with Leslie being worried and my anxiety out the roof. It's so hard to be vulnerable. All I can remember saying to Leslie is "do we have enough water?". Over and over.

Hope Lodge: I've only been there two nights. It's very hard to make any comments. A bit dorm, a bit hotel (kinda) and a bit sad.  That's only becuase seeing people with cancer makes me sad. I can't help it. It just does. It's a sucky scary thing and I hate it. Hope lodge seems to do a great job with events and different spaces to hang out in. I'm not sure I can stay the whole time there. You need to have a companion with you every night and it's such a tall order for all my friends here. Andy is looking into alternatives for me. 
I never could've banked on how hard post-transplant would be. On every level. I did see people at Hope Lodge , post-transplant, that looked like they felt just as crappy as I do. I'm not sure I find that sort of thing reassuring.  Just makes me feel sad for everybody, and all their families and friends. 

But on the good note, I did not have a heart attack! And my blood counts look good. And Dr. Giralt has rescheduled my bone marrow biopsy for Wednesday. 
I've lost track of what day this is. Need to get back to my calendar! 
Right now I'm looking out the window as Sandy slowly creeps in. I wish everyone safety tonight as nature reminds us of her fierceness. Fierce. It's something we all need to be at times. 

Negative thinking

Negative thinking.
I'm going back a few days because this has just been on my mind despite all the transitions this week and computer roadblocks to blogging. I know I've mentioned how hard prednisone has been on me emotionally. I cry really easily and get sucked back into the shock of the transplant experience really easily.  I'll miss my kids and cry a river. Often people will advise to stay away from negative thinking. Which always gets me thinking....  Just about our brains, and how each of us is wired and how darn difficult it can be sometimes to think positively. And I noticed, being here in the states during this frustrating campaign season, that negative thinking must fill a huge hole somewhere in our humanoid-ness. Why would a candidate pay gigantic money for an ad that simply lists their opponents' faults and missteps and at the end simply say they approve the message. That means that a list of negativity is just as powerful and efficient advertising as providing people with positive things you may have accomplished as a candidate yourself.  If it didn't work they wouldn't do it. People must thrive somehow on the negative. It's serving us. Is it just natural? Should we just admit we're drawn to that like rubbernecking or something? I see it in myself. I'm like rubbernecking my own transplant. Like "what the f### was that?" and I want to turn around and drive by again, slower, to see if I can see some more or figure out what happened.
I'd like to remove negative thinking from my brain as much as I wish there would be campaign finance reform. But it's hardest to do when the drama is high and the stakes are high. But I think I'm ready to accept today that my mind is a rubbernecker, and the good positive pleasant uplifting thoughts have to be airlifted in by a SWAT team. Phew. What are friends and family for? Because I just can't seem to run a clean campaign here by myself.

Tricked into Sleep

Kaethe arrived on Monday from Colorado. My best friend from 6th grade, and counting. I blubbered (as my Aunt Dee calls it) for a while at the front door. But since then my blubbering has become a little less constant. Easier for everybody I am sure. The doctor also pulled me down a peg off the Prednisone and I am sure that is helping. But I still hadn't slept at all by Monday night and I was all worked up about it in my mind. It was like I had forgotten how to do it and was afraid of every sleep-aid staring at me from the bedside table. The doctor said to try taking double the Ambien. That had me double freaked out. Would it double not work? Would I be awake all week? And then Tracy and Kaethe take over. It's bedtime, they're in my room with me telling funny stories about people who sleep, people who don't, maybe we should import some medical marijuana from Colorado... and then all of a sudden Tracy's got those 2 Ambien in her hand and hands them to me, says, "take them", and I did. And I slept. And again last night too. Those tricky girls. But, talk about the difference between night and day. Corny.

Today is a bit of a big day. I go for a bone marrow biopsy this morning. Not only are they painful, more importantly, they show the whole deal of how your bone marrow is growing. So they're a bit nerve-wracking.  My blood counts since the transplant have been very good. The doctor seems really pleased. And it's all I can do to just steep myself in her words and not let my wandering mind go off anywhere it has no business being (which is its favorite pastime...)

So tonight is my last night at Tracy and Larry's beautiful home till I move over to Hope Lodge tomorrow. I can not thank Tracy and Larry more for embracing me so hard. There's a whole lot of love here. And just being able to sit outside, walk in nature, breathe real air. I think I've become a bit of a nature girl. Especially when it comes to healing. And I have to say I'm a little nervous to go live in the city for two months. I'm curious about Hope Lodge, and I know the proximity to the hospital is huge. But to me right now I'm kinda wishin' Hope Lodge was on top of a mountain in California overlooking the water where I can just sleep on warm mossy rocks.

Today is Day +33: Plan the next 4 girls trip. 

The 4 girls are Kaethe, Allison, Susanne and me. I written about them many times here. Somehow we were anointed with the title, 4 Girls, I don't know when. High School probably. They have always been my foundation. Unchanging even as we've changed and moved through our lives.  We've taken some fun trips together. But way too few. And my complete healing from this transplant will definitely be celebrated with a trip for us. For three years they have been next to me every step of the way. I think of the tears, and exhaustion and laughs, and I can easily start blubbering again. For me, just to PLAN something is such a gift. It brings a sense of peace to me I can't describe.

Tired and Wired

Rest. It's something you would think I could be potentially very good at. First certified yoga training in 1985. That's a long time to study, practice, or at least be aware of the concept of rest. Relaxation. Breathing.  And if it was you I bet I could talk you down into a blissful deep relaxation ASAP. But for me-- what a rig amoral! To get myself to sleep. Haven't been able to do it. But I have great expectations for tonight (expectations, those should help...)

I"m going to take an Aveeno bath and maybe NOT take an Ambian.  I think I'm the only person in the world Ambian has a reverse effect on. Is that even possible? Maybe I just forgot how to sleep at night? But I stayed up all day today and I'm hoping to start leaning more toward normal everyday. To have faith that my strength will return. To have faith that I will in due time be very capable of taking are of myself and my family again. To have faith in body, mind and soul and live in that place as often as I can. And it pops up again--to be gentle with myself. It's been a lifelong challenge. Gentle with myself. Gentle with myself. Gentle with myself.  I need a blackboard and some chalk so I can write it 100 times. But that's not even funny! That's not being gentle with myself at all! Yeah! I could punish myself into being gentle!

Ok. Must breath. I bid you all a restful, beautiful night.

Day +30-- REACH FOR THE STARS (sounds a lot like yoga to me...)

I'm Officially Post-Transplant

Dr. Giralt discharged me today.  It was the biggest relief I've felt in such a long time, I immediately fell asleep, detached from my IV pole, flat out on my belly. I could not move. Emotion, exhaustion, disbelief, belief.  Waited all day for the final discharge and left with a giant bag filled with drugs. I mean GIANT. Tracy dragged me out of there and Jennifer organized all those medicines and I just couldn't stop eating. I had a little bit of everything: barley soup, tiny burger with ketchup, honeydew, avocado, a piece of a rye bagel with cream cheese, 3 small pieces of cheddar, a peanut butter and jam sandwich, and some chocolate that still doesn't taste right. I'm still waiting for water and chocolate to come back to themselves-- they're still off in wildly wrong taste-bud land. 

It really struck me how long I'd been in the hospital today when I got out of Tracy's car at her house and went to climb her front steps. I literally felt like I was on Jupiter. The gravitational pull was completely unfamiliar. I could hardly understand my legs or get up those steps. It was shocking. But as I'm confident my taste for chocolate will return, so will my ability to get up the stairs with grace. 

I will now continue this journey, taking care of my new baby self.  Never would this have happened without the extreme devotion and care of my family and friends.  How would I have been able to laugh my way through the ICU (at least that's how I remember it...).  I'm just going to rest, laugh, enjoy,  and heal.   That really corny expression: Today's the First Day of the Rest of Your Life... Hmmm, well that actually applies...

Day +29 :   YOUR BOYS ARE LUCKY

Let's Dance

Today the calendar says, "Dance in Place". It's very practical advice. Especially if you don't know if the doctor is going to say yes or going to say no to discharging me tomorrow.  It's up to Dr. Giralt. He's the man on duty tomorrow. It is a matter of whether he's comfortable with having found my correct Tacrillimus dosage for my mouth.  

I had some good advice from friend emails today reminding me to take deep breaths. Clear my mind a bit... And that i actually a lot like "Dancing in Place". 

I also took Attavan a few times, which for sure slows the music down.... 
Remember "Dancing in Place"?  At Middle School dances? Maybe on a lucky Friday evening some boy would ask you to dance a slow dance (most likely Stairway to Heaven---whoa that's a long song...) and there'd be no communication between you other than that you could put your head on his shoulder if you dared. There was such a mixed comfort of: Who's watching?
What's his face like? 
Are his eyes closed? 
Do I even like this person? 
When will this song ever be over? 
Hmm, this is actually really pleasant... 

Stairway to Heaven is so long that if you don't eventually stop roaming in circles, you'd both fall over together. And you can't have that!  So, "In place" became the place to be. It's really like a rocking. And rocking is so comforting. We do it to our babies all the time...

I asked if I could be unhooked from my "pole" today and the nurse said yes! So you can be sure I am sleeping on my belly tonight.  All the baby things for me today... And just think, I can walk through these halls and let both arms swing! I think I may have forgotten how to do that!



Day +28 Dance in Place

I Love the Way My Friend Lana Pronounces "Tired". She says TIYID! I'm Sooo TIYID!

I wouldn't want to do anything RASH, but this one's really got me down.  So itchy and red and uncomfortable (my favorite Grandpa Louis word, after he had eaten too much). So much so that I would accept anything they had to offer here, all day. So that's why I'm Tiyid! Lots of Attavan today.  It aint for me for anviety. It just knocks me out. But I get the attraction. Peacefulness certainly ain't something I can easily conger up.  And that's because it's NOT easy, or else we wouldn't be tripping over self-help sections in bookstores and yoga studios on every corner! 

They're trying to figure out if the rash is a medicine allergy or a possible form of GVHD. This is where my mind goes blaaaaaaank and I ring the nurses' bell for more drugs. 
"You raaaanng?" 
"Yes Lurch, please bring me my happy doses of Attavan and Ambien!" 
"Grrrrrrr".  Always his response....

I was reminded last night of the last section of the New Testament where God wants Jesus to go to the cross and Jesus is bargaining with God, like, "Really? Please! Isn't there something else I could do? Something a little less horrible? "
But there wasn't and he had to do it. And that was so we could lay our burdens down. Hand them over and say, God, thank you for taking this one, because otherwise I'm not sure I'd know how to get through the day. It's probably where the expression "LORD, Give me strength!!!" came from. (Another great phrase I adopted from Lana).
It never feels like a fair deal for God. We're always handing over our yuck. For example, "God, please heal this gross itchy rash for me, so I can sleep like a baby tonight..." Does that seems fair...?

I think this is tied to why I feel so compelled, or just plain excited, to pay it forward. I'm curious to see how I can take all that's been given me so I can snowball it in some great way. But that "way" will, of course, reveal itself at the right time. Because right now I'm still just shy of the healthy side. Still daydreaming about walks, yoga, real sleep and real food. And besides, I'm really quite TIYID!

Day +27: EAT WELL

happy dreams Lurch,
Dina

Bad Day? Am I Still Allowed to Have Those?

So when I saw the doctor this morning she was like, "you're doing so great! you're amazing! We're so happy! You're doing SO well that we can't discharge you till Saturday!" They're spending these days getting me on to all medicines by mouth and this very important anti-rejection drug, Tacrolimus, dosage is measured by it's effect on your liver.  So each day they give you a dose and check how it's taxed the liver. Can't be too much or too little.  My liver keeps healing more and more everyday and so they can't catch the right number for me.  So I get to stay an extra day...

And then there's the crazy yellow paint medicine that has my face and neck in a rash that itches and burns. It's had me in tears all day.  If you read the literature on it, this is a side effect, but it's not on the severe list.  Plus, it's a medicine that prevents a deadly pnemonia. So as much wimpering as I do, I'm not going to get out of taking it. 

And then, more people today than ever have said things to me like, "Wow, I've been reading about you, you've had a really hard run".  Or "Wow, you got through one of the hardest protocol we offer here at Sloan Kettering. You had a tough time, but you did it!" Apparently my liver was filling with fluid and my heart was racing out of my chest and it cut supply to my brain and made me severely delusional. That was part of what bought me a week in the ICU. "Luckily those things return", said the informer of that news.  

In a way it was good to hear about some of the things that happened because I feel the effects of having gone through something really hard without knowing if that's true or not. Potentially a little crazy making.  Maybe a little delayed stress? Maybe just wigged-out and worn down by a rashy face. You see, the thing is that, yes I had a miraculous transplant, and so it makes me feel less entitled to any negative emoitions about it. It's kind of horrible.  Any time I have a complaining thought there's part of me, and other people too, that says, "Yeah but, you just got a do-over! You're so lucky! don't complain!" 

I feel like I got to go surfing in the hardest but most beautiful waters in the world, and got hit by a wave that knocked my ass back on the sand, sitting facing the ocean, thinking, "What is that?" And feeling bumped and bruised up and someone walks by and says, "Yeah man, but you just surfed the Great Kahuna Wuna!" Like if I'm not in this super grateful stupor at every moment than I've really missed the point of this...

I've never really been a naturally optimistic person. I'm more of a worrier and on the timid side of life. I'm semi-adventurous. Not out of choice. Just nature. Fear? I don't know. And I think part of me was hoping that the transplant would take away that fear and make me just a natural go-getter. I work really hard on trying not to pass this thinking onto my kids and I'm doing well at that, but when it comes to me, it doesn't feel at all like that "change-a-brain surgury" I thought I was coming here for. It feels like me, Dina, post-transplant.  Dina struggling with having a bad day.  Kind of making the whole thing worse, no? 

I feel like there's some reconciliation that needs to be made. I've been fighting so hard for three years for my life.  It can feel really discouraging when your own body, or life, works against you. But I don't have that anymore.  And I base that on the pure glee on the doctor's face today.  I do know that right now is crucial for me still and I got freaked-out, almost mad, today when I heard someone sneeze. Germs scare me. Having to be super-duper strong scares me.  Having a compromised immune system scares me. And I don't just naturally think, "don't worry. everything will fine..." I want to. I really do. Boy, am I having a bad day...

Healing and Recovery

It's 2:00 in the morning here in NY. I can't sleep for nothing and I am sooooo starving all the time!!!
Friends have started bringing me food I keep in the fridge and I'm now the Queen of the 1:00am snack!

The word on the ward here is that they are trying to discharge me either friday or saturday! THIS friday or Saturday.  They are working hard to get me on medicine by mouth only and are tweeking all the important dosages. The thought of it is what is keeping me sane. It's this IV pole that follows me around everywhere, although of course friend, can feel a bit as though it's over stayed it's welcome. I yearn for freedom. I yearn to see who and how I am with my new cells, walking in the woods, feeling sunshine, reading a book outside. 
I've been thinking about my lovely donor today all day. I hope she had a great day.  Her cells inside me feel so correct. And in my mind they've been shape shifting away.  For the past week there's been this monolith feeling in me. Like a universal, untouchable paragon of strength. Today this image shifted into a really large crystal. Natural, clear, and unearthed to do powerful work.  And sometimes what's in me feels like these adorable baby cells, crying, laughing, eating their toes. This is when I really feel like I have to take care of myself. Big time. I'm like a baby.  I still think out of a hospital is better than in a hospital for a baby.  Way fewer grems. But, like most grown ups, I don't tend to baby myself.  This will be a really interesting path. Healing & Recovery. And all without guilt. I think that's the part I'm up against that's hardest.  I think the only good path for me will be through love. Friends and family reminding me to slow down, that it's good to sleep in the day, this is my job... Love is so much more effective than anything punitive, isn't it?  Even on old mommies whose immune systems have been reborn...

COPING--- Friday October 12, 2010

People coping is such a fascinating subject isn't it? What we do to get through. I was so proud of Isaac today because he knew he had a few hours where he'd be alone and sad after school, so he saw ahead and planned himself a playdate. My relief!!! My kid knows how to self soothe in this really planned mature way! The other day he sent me an email that made me and the Prednedsone spin off into the hugest late-nite cry-cry session in a long time. It was about his sadness. And he was able to express it. I won't print it, but I'll print my response:

"My love, I'm so sorry, I feel like I lost being in good touch with you last week. I had my transplant and it was harder than I thought it would be. But ultimately it did go well and I feel I'm getting better now and they're hoping to move me out of the ICU tonight.

I want you to know how much I love you. I know you know, but no one ever expects love to hurt or ever be painful, but oddly enough it is sometimes. It's NFF. (Not f---ing Fair).
Please know you are never alone in this. Even though I'm in NY, I love you the same way as everyday. And dont forget that that is MAMA LOVE and that ain't no joke!

And thank you sweetheart because You're so brave and supportive even when I bet you just feel like screaming some days! You're visits here have been so special, fun, cuddly. You're amazing. I'm so blessed Isaac.

I will be home as SOON as they say Yes. Please always call/FaceTime/write and don't stop till you get me. Sometimes I could be asleep but that's me just healing up and being a bit tired from the transplant.
Don't Forget, I'm always always yours,
Mama Friend. "

It might have been much, but for some coping reason I needed to spread it thick. I wanted to. Everyword the truth...



I know I still had anxiety about the whole transplant. It was helpful when the doctor said " You killed the tiger! Now don't be afraid of it's skin!" He was right. 

So, I think I went to ICU somewhere around day 12 and they let me out yesterday Day 20. I know Andy came and went. It was so hard to have him go. I don't even think he saw me at my worst, but as I got better, I could see the imploring in his eys. I am doing this for the future of our family and he believes in that and knows it so firmly. It gave me an extra kick in the hospital gown I needed that day. 

My hunch is that part of the reason they finally let me out was because I stopped shaking nurses and instead would copiously thank them for taking care of me. And I was begining to tell all the doctors how sure I was that their mothers were proud of them...the was for sure my usual M.O.  My usual way of coping...



Here are the The Sweet Sayings so far from the Count Up Calandar of 100 days. Maybe it should be called the Coping Calandar of 100 Days...

September 30, Day+9:  Cherish This Morning

October 1, Day +10: Elbows With Butter and Salt

October 2, Day +11: Rock On

October 3, Day +12: Power House

October 4, Day +13: Breezes on the Water

October 5, Day +14: Laugh Today

October 6, Day +15: Smooch

October 7, Day +16: :-)

October 8, Day +17: Love Yourself

October 9, Day +18: Love Conquers All

October 10, Day +19: Count Your Lucky Stars

October 11, Day +20: BELIEVE

October 12, Day +21: Puppy Breath

October 13, Day +22: You Have 2 Birthdays Now

October 14, Day +23:  Call Your Friends

October 15, Day +24: Laugh at Yourself

October 16, Day +25: Breathe

October 17, Day +26: Have Faith in Yourself

The Lost Days of the ICU

It"ll be interesting to write this hearsay. I remember sooooo little. I rememeber some serious muscle pain and pushing the pain pump a lot. I remember that what seemed so real after I started hallucinatiting apparaently was not. I remember a nurse being mean when I kept taking off my oxygen thing and my telling her that the nostrels part hurt me and that she could be a lot nicer.   And then I think it got low and dirty, to the point where I apparently shook her by the collar.  Nut's. And then things got weirder and I thought she was living in the hospital with her mother and she said she was part of a food contest,  that had something to do with rainbow fish and doctors as judges and that I had ruined her chances for winning. And then I screamed at her about how ridicuous it was to involve cancer patients in food contests...! 

I think the next thing I knew, I was in the ICU having hit the pain pump one time too many. Apparently I was suffering with some breathing issues, pain issues, liver issues and heart regulation issues.  It all happened fast and I think I thoroughly freaked out my friends and family.  But, vless them all, despite their being freaked out, I remember it was an inccessant party in the ICU. I think people know I like it that way.  "Ok! Strapped down to 12 medications nd a bed? Let's laugh a whole lot and have a party!!!"  I realised in the ICU how laughing is so important to me;  how important it is that my friends and family get my silly, and occassionally quite witty jokes...
Back to hallucinations.   Mine seem so darn real!!!  Duh... don't they all?  Mine started out on the dramatic side. Important mythical figures.   Visits fromK ing Kong, Ghandhi, MY grandfther, my father and and large spirit dog. . And appearance from my doctors's brother in Australia who, in my world, does amazing native aboriginol healing dances.  Sounds all very Jungian no? 

And then they got really commonplace and acceptable: tiny bugs that just hung around, lots of puppies and kittens. Tiny new born things. And this was while my body was crazily sucking in beautiful new stem cells.  It was like this never ending milkshake. And as well, there was the black button at the front of the room that  fogged the glass when you pushed it.   And that is when the little boys would come out, all Ari's age, those skinny six yr old arms. They'd take these long lingering Pina Bausch steps cross the room, stop and pose, and then contunue on. To me, they felt normal hanging around. Alll the visitors, real and temporary made the room really crowded. And it was exactly what I think my brain knew I needed to get through the transplant days.    

Day+8 september 29, 2012

This is funny. So as I've reconnected to so many of my fantastic friends from College, the tried and true New Yorkers here, it's really lucky, because I never would have remembered an ounce of my transplant. The reason I do remember is because my friend Darcy TOOK NOTES!!! It's something she was always so good at!! And she did it, for me! Did she know I'd never remember this on my own? Well I thank her because honestly I remember so little. I remember people saying to me before hand, " Oh you won't remember anything. This will all be a blip on the screen". Part of me likes that idea, but part of me abhors it!" All this work and a blip???! 

I could feel (as the more pain killer I used), the more my own private little experience transplant was going to become. But I wanted to continue sharing it too. No doubt it helps me.  Anyway, on this day of Sept 29 there was a lot of talk about the auspiciousness of the date of the transplant, 9/21/12. Just think how many potential dates there were and the one I ended up with.  Shabbat/Tshuva. It's the same date that Isaac's BarMitzvah will be next year. It's between two jewish holidays. I know I've written about this before but I loved the way Darcy put it in her notes. It's not just a day of repentance, but one of new beginnings, opportunity and reconciliation. How gorgeous is that? 

It helps me to answer the confusing and painful question I've been holding close for the last year: "Why, three years ago, when I was trying to make the excruciating decision whether to do the chemo or do the transplant, was my intuition telling me to: "Do The Chemo, it will save your life" and then I relapsed a year later..?  I'm such a strong believer in intuition. I believe that's where God sits, I believe it's a beautiful place you can always go to listen. I believe Intuiution is always you're best bet...And in this case, it wasnt even just intuition. This was many moments so of meditation, this was the agonizing involvement of my dearest friends and husband who cried with me everyday, read the pertinient papers and tried to explain them, stayed up late at night on the phone and made sure I was never ever alone in this, not one minute. And the answer came to me today. "These were the right cells".  Is that crazy? I don't know. But I engrafted so quickly; like I got surrounded in a spinning love. It was so quick that the doctors at MSK needed to pull back on the medicine that helps engraftement.

I take nothing for granted. I just am wondering. I'm getting to see a little bit of the truth of the "When" of my transplant. Something I've been wondering about for so long...

Count Up Calendar: Go With The Flow

Day 7

The original reason behind this blog was so that I could write about the first 100 days after transplant. And now that I'm finally post transplant and I can't figure out what day it is! Or month?  I have this "as needed for pain button" on my thingymahooji (that all the medical drips hang from) and it's taken me two days just to have the guts to use it. I don't really like sleeping more. I'll sleep a little but then I'll wake-up, stare at the clock, the crach of light behind the roller curtain or the sky, and be compleletely confused.  

I asked alIi for a Bone Marrow Transplant, Avent Calendar, to remind me that today is Friday, September 28, 2012.  Day 7 etc; etc.  And in her likely manner she got RIGHT on it?...Allison created one for me.   She made a count up calendar with an inspiring saying for every day. Today is "Stars will shine tonight for you"
Sweat Dreams
Dina

Day 5. Wednesday September 26th.

Wow, just reading back on the last two days you can tell how much pain killer I'm on. How does one manage to slur their written words? But I have managed it and I'm sure will continue to do. The days are loooooong. My goodness. Usually when I take a nap during the day I  mess myself up and then feel like I'm in a million different time zone for days.

As I will continue to blog and to describe the "fun physical" side to transplant,  I will try to temper it with some visits from "those in the know": the first being: Marty.  He said I was looking good or serene or something, but that was before I told him I was on my maximum amounts for Fentanyl for pain and Attavan and for itchyness and nausea.  Then Sergio stopped by. He said I'm doing great and that the reason I'm feeling so crappy is because we just punched out the leukemia so hard that they have black x's for eyes and they're just falling down and dying everywhere.   I think I have a high standard for myself,  in terms of post transplant party dance card.  I forgot to schedule in that anytime I take a shower and even hit the loo, I need to block an hour of naps to recover.

Every part of me hurts. Head, shoulders, knees and teos, knees and toes... Eye and ears and mouth and nose. Plus, my esophagus feels like this:










Marty says that by Day 14, I should be feeling much better!

Day 4

 exhausted! It's exactly what they  they said I would feel

Day 3

Thank god Allison is here with me. This is like a slo-mo roller coaster ride. They spent the day today re-arranging some of my medicines because  of some side-affects I might be having.  Could be that the Dilauded is what makes me SO itchy, not the Tacrolimmus.  So they switched me from that onto Fentanyl with a clicker button, meaing I can give a dosage to myself if I want, (every 15 minutes).  

So as I tried that today,  I kept sleeping in this 15 minute increments. I'd fall asleep at 2:30 and then wake up thinking I slept all day. Yet, I'd get this quick massage from the sky that the sun is pretty much in the same position and so I hardly slept. It's the day that lasted forever!  

Or I'd fall asleep listening to Allison on the phone trying to round up volunteers for the Wellfleet Fall Oyster Festival, and then I'd fall asleeep, have this quick dream about what a success the Festival was, and the I'd wake up, still today, no oysters and beers having been had by anyway. 
And then I start to cry... No idea way. Maybe because they whipped me off the anit-depressenant I have been using since the day I day diagnosed... Apparently the stuff is not good on the liver. And they are very much trying to take care of mine....

But anyway, there's lots of reasons to be emotional.  But Day 3 is done. And we move on!