To all my American Mama Friends,
Happy Mothers Day!
Much joy and love to you today. I've had a lot of jobs in my life, but mommy has by far been my favorite one.
Thank you to my kids for coming to be my babies.
Thank you to Andy for being as persistent as I was through seven miscarriages.
Thank you to so many for mothering me through this really hard time in my life. I promise to keep fighting because I did not have those babies to leave them now.
May Peace, Love, Mama Earth and our mama selves be celebrated today.
love,Dina
Sunday, 13 May 2012
Saturday, 12 May 2012
This morning
I can feel myself fighting this depression. I have a lot in my bucket to help me. I woke up to prayers sent by email from friends. I woke up to a sunny day in London. I woke up to Ari asking, "Can I play on the iPad?" I woke up to a tight huge and I Love You from Isaac and a plea for me to make him crepes. I woke up to Laila's puppy breath.
But all of this is coupled with panic. I'm sitting on my yoga mat as I write this. This new drug I'm taking is injections in my belly and the two spots from yesterday are sore. I'll do whatever yoga I can. No bow pose, that's for sure. Ouch.
Allison went home today, and Susanne is still here with me. They have vowed not to leave me alone. They are precious soul mates. I'm not so good alone. I tried it yesterday when I lay down to take a rest. It pretty much sucked. I'm like a deer in the headlights. Blogging through this seems to help me. It's not lonely. At first, I thought it might be, but it's not. It's different. It's not a letter, not a diary, not fiction writing, maybe a little bit memoir and a little bit Rock 'n Roll.
Speaking of letters. Should I start writing them to my kids? Ones they can open through the years on their birthdays or for when they get their first girlfriend or graduate from High School and College? For when they get married? For when they make decisions, without a mom?
Do I have just a few months left? Or do I maybe have years? We all have to live with not knowing.
love you
Dina
But all of this is coupled with panic. I'm sitting on my yoga mat as I write this. This new drug I'm taking is injections in my belly and the two spots from yesterday are sore. I'll do whatever yoga I can. No bow pose, that's for sure. Ouch.
Allison went home today, and Susanne is still here with me. They have vowed not to leave me alone. They are precious soul mates. I'm not so good alone. I tried it yesterday when I lay down to take a rest. It pretty much sucked. I'm like a deer in the headlights. Blogging through this seems to help me. It's not lonely. At first, I thought it might be, but it's not. It's different. It's not a letter, not a diary, not fiction writing, maybe a little bit memoir and a little bit Rock 'n Roll.
Speaking of letters. Should I start writing them to my kids? Ones they can open through the years on their birthdays or for when they get their first girlfriend or graduate from High School and College? For when they get married? For when they make decisions, without a mom?
Do I have just a few months left? Or do I maybe have years? We all have to live with not knowing.
love you
Dina
Friday, 11 May 2012
Addendum with Hopefulness
Andy emailed today with Dr. Marty Tallman. The doctor I had in Chicago who recommended the transplant in the first place. He has since has moved to Memorial Sloan Kettering in New York. He recently published a paper studying people like me. Those who relapsed from AML and who had a hard time getting into remission. They had success and the majority of these people went to transplant and were doing well two years out. It seems like some could have even had higher Leukemic counts than I do.
Marty is working on a plan for me. My entire outlook changed when Andy received that email. I kept reading it over and over. Crying and crying with thankfulness.
We had such a bad meeting this morning. The doctor just dumped me. The nurses cried.
I am ready to go anywhere, do anything.
Love you
D
Marty is working on a plan for me. My entire outlook changed when Andy received that email. I kept reading it over and over. Crying and crying with thankfulness.
We had such a bad meeting this morning. The doctor just dumped me. The nurses cried.
I am ready to go anywhere, do anything.
Love you
D
Broken Hearted
The chemo didn't do what it was supposed to do. My marrow looks worse. I am sad and mad and panicked. I'm home now and I hear everyone having sushi in the kitchen. I think they think I fell asleep. I can't sleep. Afraid of nightmares. Waking and sleeping.
I'm doing a drug that's supposed to help diminish the blasts so that maybe in the meantime we can find a trial study or a more aggressive approach in the U.S. They will not give me the transplant here in London. I might just have a few months. Or I might get lucky. For everyone praying for me, and who loves me, I love you back and I'm praying too and thank you.
My children. They are so beautiful and so young. Ari is five and Isaac is eleven. Their heads smell like heaven, their voices are serene and their eyes are something to get lost in. They are full of humor and love, each in their own way. My husband Andy is so sad. I will do everything I can to stay here. I really really like it here. It's so beautiful. There is so much beauty. In family, in friendship, in soul mates. In trees and flowers and blooms and buds. In babies and music and the wind. And in being able to say everything's ok. I wish it was. I wish it was.
I love you.
I'm doing a drug that's supposed to help diminish the blasts so that maybe in the meantime we can find a trial study or a more aggressive approach in the U.S. They will not give me the transplant here in London. I might just have a few months. Or I might get lucky. For everyone praying for me, and who loves me, I love you back and I'm praying too and thank you.
My children. They are so beautiful and so young. Ari is five and Isaac is eleven. Their heads smell like heaven, their voices are serene and their eyes are something to get lost in. They are full of humor and love, each in their own way. My husband Andy is so sad. I will do everything I can to stay here. I really really like it here. It's so beautiful. There is so much beauty. In family, in friendship, in soul mates. In trees and flowers and blooms and buds. In babies and music and the wind. And in being able to say everything's ok. I wish it was. I wish it was.
I love you.
Thursday, 10 May 2012
Going to Bed, Hoping to Sleep
Ok, let's all Say A Little Prayer...
The song's been going around my head all night...
"The moment I wake up
Before I put on my makeup
I say a little pray for you
While combing my hair now,
And wondering what dress to wear now,
I say a little prayer for you..."
"Forever, and ever, you'll stay in my heart
and I will love you..."
The song's been going around my head all night...
Before I put on my makeup
I say a little pray for you
While combing my hair now,
And wondering what dress to wear now,
I say a little prayer for you..."
If you wouldn't mind, while you're getting all dolled up tomorrow morning (or duded-up), say a little prayer for me. We'll be getting some results from this last round of chemo. It should probably inform some of my next steps. That's all I can say besides how glad I am to have Andy, Allison and Susanne coming with me to this meeting.
"Forever, and ever, you'll stay in my heart
and I will love you..."
Wednesday, 9 May 2012
A Note Written by Allison
At this point in my adult life, I am all too familiar with the idea that I must tell those I love how I feel before the time gets passed us. Tell them everyday! We always did. Dina is packing up her clothing so we can leave this hospital today, trying on one shirt, asking if she'd fare better in a skirt or bell bottoms, and I am propped up on the hospital bed watching her. Flashback to the 70's, the 80's, the 90's and to this decade, replace this hospital blanket with a tapestry from Traprock Suite, a fancy head shop nestled between a New York deli and a stuffy stationers store, and we could be back 30 years. We have always played this way. It never took much for us to enjoy each other's company. And we have always let each other know how we feel about one another, since day 1. That is surely one of the precious pieces of the the friendship between Dina, Kaethe, Susanne and myself.
And so, as I ready myself to greet Susanne who is tag-teaming me here in London, and I swallow hard at the prospect of leaving Dina tomorrow, I reflect on just how lucky I am for some of what this horror has allowed me. How often do we get the opportunity to leave our adult lives, overgrown lawns, and sticky fingerprints to spend solid weeks with our best friends? Once plans are made for keeping work at bay and the house "set" while I am away, I step out of a cab and into a beautifully long stretch of time for falling asleep laughing, crying , holding, complaining, reminiscing.
My high school yearbook quote holds true even today: "We are one person, we are two alone, we are three together, we are four each other."
(I now, am finally a published author!)
And so, as I ready myself to greet Susanne who is tag-teaming me here in London, and I swallow hard at the prospect of leaving Dina tomorrow, I reflect on just how lucky I am for some of what this horror has allowed me. How often do we get the opportunity to leave our adult lives, overgrown lawns, and sticky fingerprints to spend solid weeks with our best friends? Once plans are made for keeping work at bay and the house "set" while I am away, I step out of a cab and into a beautifully long stretch of time for falling asleep laughing, crying , holding, complaining, reminiscing.
My high school yearbook quote holds true even today: "We are one person, we are two alone, we are three together, we are four each other."
(I now, am finally a published author!)
Think Happy Thoughts!
Yet another night unslept. So weird. And that's with a Lamazapam or Tamazapam or Lalapaloozafan. I'm just awake.
I just told the doctor I need to go home. Whether or not the results from my biopsy are good or not so good, I've got to go be with my family, in my space. If I go straight to transplant (please please please) from this round of chemo, being home first will give me those recent memories that act like high-octane fuel for me when I'm in the hospital for a month pulling at all sorts of things to rely on for sustenance.
I'm not saying that little things don't sustain me as well. For example, this hospital stay, I've made some beautiful wrap bracelets (if I do say so myself). But, I've been wrestling with my needlepoint purchase that I was so pleased with when I first got it. First of all, (here comes another good reason to always read the small print), the design isn't even printed on the canvas! It's a blank canvas with the design on a separate sheet of grid paper. It's enough to make you batty! Counting counting counting all the time. And get this, the rainbow lettering on this special purchase reads, "Think Happy Thoughts!".
The more I got into this needlepoint, the more it was bugging me. "Think Happy Thoughts". Is this wisdom? Who says that? Glenda the Good Witch? Shirley Temple? Yoda wouldn't say it. It kind of sounds like Yoda. But Yoda wouldn't really say it. He'd say something more like, "Thoughts help not with being peaceful".
I know in other blog entries I've written my credo down as "Don't Think". And that has helped me for sure. But that would look o weird sewn onto a needlepoint pillow. So, now I've got this blank canvas and some really pretty jewel-colored yarn and nothing to say. It could be anything. Got any ideas? I think it should be witty. It can't be schmaltzy, and it has to be something you'd want in your living room, meaning limited profanity. I'm looking for something that when you look at it you're like, "Oh yeah! That's a good reminder..."
The suggestion box is open.
I just told the doctor I need to go home. Whether or not the results from my biopsy are good or not so good, I've got to go be with my family, in my space. If I go straight to transplant (please please please) from this round of chemo, being home first will give me those recent memories that act like high-octane fuel for me when I'm in the hospital for a month pulling at all sorts of things to rely on for sustenance.
I'm not saying that little things don't sustain me as well. For example, this hospital stay, I've made some beautiful wrap bracelets (if I do say so myself). But, I've been wrestling with my needlepoint purchase that I was so pleased with when I first got it. First of all, (here comes another good reason to always read the small print), the design isn't even printed on the canvas! It's a blank canvas with the design on a separate sheet of grid paper. It's enough to make you batty! Counting counting counting all the time. And get this, the rainbow lettering on this special purchase reads, "Think Happy Thoughts!".
The more I got into this needlepoint, the more it was bugging me. "Think Happy Thoughts". Is this wisdom? Who says that? Glenda the Good Witch? Shirley Temple? Yoda wouldn't say it. It kind of sounds like Yoda. But Yoda wouldn't really say it. He'd say something more like, "Thoughts help not with being peaceful".
I know in other blog entries I've written my credo down as "Don't Think". And that has helped me for sure. But that would look o weird sewn onto a needlepoint pillow. So, now I've got this blank canvas and some really pretty jewel-colored yarn and nothing to say. It could be anything. Got any ideas? I think it should be witty. It can't be schmaltzy, and it has to be something you'd want in your living room, meaning limited profanity. I'm looking for something that when you look at it you're like, "Oh yeah! That's a good reminder..."
The suggestion box is open.
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