Sunday, 27 May 2012
Research
Canadian researchers seemed to have found something wonderful concerning AML and other cancers. I've just emailed the doctor. Maybe I can be part of the trials. If it's true, it would change everything in the cancer machine, the big pharma machine. I pray this info is not squashed. Keep your eye on it. Let's see what happens...The article was sent to me by my friend Edie who's been praying so hard for me I think her head might pop off. Love you Edie.
I can't tell you how much I want my life back. I don't want to wake up and go to sleep thinking about this anymore. I want my teeny weeny grumbly old stupid problems back. No more dark cloud above me. But, oh yes, there is only this moment. The moment in which Isaac wants me to make him crepes. Thank goodness for short-term plans...
Saturday, 26 May 2012
Planning
Although life is what happens when you're making plans, life without any plan is really dull. Very uncomfortable. Even though life is richer when you stay in the moment, it's so much easier to be in the moment when in the back of your mind, you've got something to look forward to.
There are heavy lessons to be learned when your life is in limbo. I can only try to maintain some grace as any results from the medicine I'm taking now won't be for a while. A month and a half probably. And while I'm waiting, my immune system is really low, so I can't hang out in any places that are crowded or germy. So I still can't take my kids to school, or do pick-up. I really miss doing that.
Last week Kaethe stayed with me two nights in the hospital. My electrolytes went really low and wow, did I feel it. Completely knackered. One flight of stairs felt like a marathon. It was nothing some good old potassium and phosphates couldn't solve.
Today was a beautiful day here. We spent the whole day at the park with the dog and the kids. I'm living in a world of opposites. One that's happy and sad where I'm worried and grateful. Everything all at once, while nothing is really happening. It's a life where I want to make plans, but can't
There are heavy lessons to be learned when your life is in limbo. I can only try to maintain some grace as any results from the medicine I'm taking now won't be for a while. A month and a half probably. And while I'm waiting, my immune system is really low, so I can't hang out in any places that are crowded or germy. So I still can't take my kids to school, or do pick-up. I really miss doing that.
Last week Kaethe stayed with me two nights in the hospital. My electrolytes went really low and wow, did I feel it. Completely knackered. One flight of stairs felt like a marathon. It was nothing some good old potassium and phosphates couldn't solve.
Today was a beautiful day here. We spent the whole day at the park with the dog and the kids. I'm living in a world of opposites. One that's happy and sad where I'm worried and grateful. Everything all at once, while nothing is really happening. It's a life where I want to make plans, but can't
Sunday, 20 May 2012
Optimisms Ups and Downs
Kaethe arrived today from Colorado. Thank you, God. A childhood gem. She raised me and has coached me and kept me in line through every inch of my life. She's a bottomless vessel of compassion and good sense. We had a really hard cry about how horrible things are, and all of a sudden I felt better.
What is optimism, pessimism, feelings, emotions? They fleet. It's just absolutely impossible to stay one or the other. It's clear these things are just meant to be watched, listened to, validated. But they're just not meant to be permanent. And this is a good thing. It would be impossible to be elated all the time. It would ultimately lose meaning and become torturous. And it would be impossible to be depressed all the time. You would learn nothing from it and it would kill you.
I went to a Buddhist Psychotherapist yesterday. I sat with him for a bit in meditation. Then I had to go puke in his bathroom. This medicine is so intense. He was very nice. Very clear energy. He has this massage table in his office and I asked what it was for? He said he also does Cranial Sacral therapy. I asked him about it and he said it was relaxing. And that sounded good to me. I asked if I could lay on his table and if he would just put his hand on my heart? He did. And I cried a bit.
My heart has been literally hurting with heartbreak. I totally get it now, why they call it heartbreak. I've been trying to heal it. Kisses from Andy, touches from friends, holding the dog. I'll take it all. As much love as I can get.
Today was my last shot of Azacytadine for this round. Now it's 18 days off. I asked Marty for an optimistic email that I can read over and over. He wrote me this:
"Hi Dina. Hang in there! Let's see how the Aza does. We've had good experience with it. We have a plan! M"
I've read it about 100 times already today. Marty is the definition of a Mensch.
Mensch Definition: (Yiddish) means a decent, upright, mature and responsible person.
What is optimism, pessimism, feelings, emotions? They fleet. It's just absolutely impossible to stay one or the other. It's clear these things are just meant to be watched, listened to, validated. But they're just not meant to be permanent. And this is a good thing. It would be impossible to be elated all the time. It would ultimately lose meaning and become torturous. And it would be impossible to be depressed all the time. You would learn nothing from it and it would kill you.
I went to a Buddhist Psychotherapist yesterday. I sat with him for a bit in meditation. Then I had to go puke in his bathroom. This medicine is so intense. He was very nice. Very clear energy. He has this massage table in his office and I asked what it was for? He said he also does Cranial Sacral therapy. I asked him about it and he said it was relaxing. And that sounded good to me. I asked if I could lay on his table and if he would just put his hand on my heart? He did. And I cried a bit.
My heart has been literally hurting with heartbreak. I totally get it now, why they call it heartbreak. I've been trying to heal it. Kisses from Andy, touches from friends, holding the dog. I'll take it all. As much love as I can get.
Today was my last shot of Azacytadine for this round. Now it's 18 days off. I asked Marty for an optimistic email that I can read over and over. He wrote me this:
"Hi Dina. Hang in there! Let's see how the Aza does. We've had good experience with it. We have a plan! M"
I've read it about 100 times already today. Marty is the definition of a Mensch.
Mensch Definition: (Yiddish) means a decent, upright, mature and responsible person.
Wednesday, 16 May 2012
There are Options
It was nice to talk to Marty. The first thing he said was that he'd missed us. I just thought that was really nice. I was on the call with Andy, Susanne, and Amal. They all felt very positive after the call. I'm going to take their word for it. Marty thinks the drug I'm taking now (the invaginating love drug) is a good one. He wants me to extend it to two ten-day courses in 28 days.
He also would like to find a hospital in London that would transplant me at above a 5% blast level. He didn't want me to have to "schlepp" to New York. But if that's not feasible, he would do it at Sloan. But I've got to get to a 12% level first. So, as I proceed to these two rounds of Azacitidine, I have to stay cool somehow. Will it work? Will it not? Lord let it work, please.
After, we all stayed on the phone and decided to call my other old doctor, Panos. He immediately picks up like he always does and we barraged him with questions out of the blue. Poor guy. We'll see him this weekend to talk more but he said he is very interested in something they're doing in Germany called LAMPSA. It seems hard-hitting but it gets people to transplant.
Then I talked to a friend of a friend of a friend. A German guy who's had THREE transplants. Holy cow! But his last one was in 2005 and he's doing well.
I am still very strong. But I am so sick of Chemo. I'll do it, but, my poor body! How can I detox from this? Is it really possible to detox? I've read tons on it, but still, I wonder. I'd like to see a double-blind study on a detox, like a juicing program or a macrobiotic program. I'm worried about my liver because of how harsh the Mylotarg is. It's fine now, but after more chemo, it can be a concern. That's what Marty said.
Honestly, I am so disappointed in my doctor here in London. He made me, us, feel so absolutely terrible. He watched us cry our eyes out in his office and said nothing except that I had three to six months to wrap up my affairs. Horrendous bedside manner considering there ARE options for me. What a fool. Protecting his own ass. If they transplanted me and it didn't work, it would look bad for his stats. His stats are more important than my life. He should pack it in. Take his shingle off his door.
I pray to stay positive. I pray to stay in the moment. I pray to enjoy each day as it comes and not let this fucking disease wreck that. All days are precious. No matter what.
All my love,
Dina
He also would like to find a hospital in London that would transplant me at above a 5% blast level. He didn't want me to have to "schlepp" to New York. But if that's not feasible, he would do it at Sloan. But I've got to get to a 12% level first. So, as I proceed to these two rounds of Azacitidine, I have to stay cool somehow. Will it work? Will it not? Lord let it work, please.
After, we all stayed on the phone and decided to call my other old doctor, Panos. He immediately picks up like he always does and we barraged him with questions out of the blue. Poor guy. We'll see him this weekend to talk more but he said he is very interested in something they're doing in Germany called LAMPSA. It seems hard-hitting but it gets people to transplant.
Then I talked to a friend of a friend of a friend. A German guy who's had THREE transplants. Holy cow! But his last one was in 2005 and he's doing well.
I am still very strong. But I am so sick of Chemo. I'll do it, but, my poor body! How can I detox from this? Is it really possible to detox? I've read tons on it, but still, I wonder. I'd like to see a double-blind study on a detox, like a juicing program or a macrobiotic program. I'm worried about my liver because of how harsh the Mylotarg is. It's fine now, but after more chemo, it can be a concern. That's what Marty said.
Honestly, I am so disappointed in my doctor here in London. He made me, us, feel so absolutely terrible. He watched us cry our eyes out in his office and said nothing except that I had three to six months to wrap up my affairs. Horrendous bedside manner considering there ARE options for me. What a fool. Protecting his own ass. If they transplanted me and it didn't work, it would look bad for his stats. His stats are more important than my life. He should pack it in. Take his shingle off his door.
I pray to stay positive. I pray to stay in the moment. I pray to enjoy each day as it comes and not let this fucking disease wreck that. All days are precious. No matter what.
All my love,
Dina
Tuesday, 15 May 2012
Fierce Love
The day was spent mostly in knots. Just waiting to find out what time we'll be speaking with the doctor tomorrow. But hanging out with friends this morning helped. Talking constantly about love, god, spirituality. What's right for me? What's right for the next gal?
Later, I was on the phone with Kaethe and she easily summed me up "Your religion is love". And I'm like, "Oh yeah, you're right!" She's known me since I'm 11.
So I woke up this morning feeling like this disease just really needs to be loved out of me. Later when I was watching "Friends" with Isaac, it was the one when Ross had this weird growth on his butt and went to the doctor. He said "You just have to cut off that third nipple!" and the doctor said, "It can't be a nipple when it's on your ASS!!" and proceeded to invite 20 colleagues in to see this strange growth.
In the next scene, Phoebe suggests Ross go see her herbalist, Guru Saj, who puts some ointment on it but then panics and says, "Oh no! We've angered it!" Ross yelps "What?" and the herbalist says, "We must heal this with LOVE!" and then, of course, he by accident rips it off Ross' ass because it got caught in his watch. Gross. But anyway, ain't that a coincidence...?
So, Susanne has been reading reading reading for me all afternoon and night. She has one of the largest and most functional brains of anyone I know. She wants to be prepared when we speak with Dr. Tallman tomorrow at 1:30. She's been reading about this new drug, Azacitadine, that I've been getting shots of in my belly. It appears to be a love drug! It does something called Invagination. It causes good cells to envelop or hug bad cells and then absorb them.
Invagination. You might think I'm confusing this is my imagination, but I'm not. It's a sexy chemo.
Invagination Definition:
The action or process of being turned inside or folded back on itself to form a cavity or pouch
I highly recommend a most beautiful song by Victoria Williams called: You R Loved
Later, I was on the phone with Kaethe and she easily summed me up "Your religion is love". And I'm like, "Oh yeah, you're right!" She's known me since I'm 11.
So I woke up this morning feeling like this disease just really needs to be loved out of me. Later when I was watching "Friends" with Isaac, it was the one when Ross had this weird growth on his butt and went to the doctor. He said "You just have to cut off that third nipple!" and the doctor said, "It can't be a nipple when it's on your ASS!!" and proceeded to invite 20 colleagues in to see this strange growth.
In the next scene, Phoebe suggests Ross go see her herbalist, Guru Saj, who puts some ointment on it but then panics and says, "Oh no! We've angered it!" Ross yelps "What?" and the herbalist says, "We must heal this with LOVE!" and then, of course, he by accident rips it off Ross' ass because it got caught in his watch. Gross. But anyway, ain't that a coincidence...?
So, Susanne has been reading reading reading for me all afternoon and night. She has one of the largest and most functional brains of anyone I know. She wants to be prepared when we speak with Dr. Tallman tomorrow at 1:30. She's been reading about this new drug, Azacitadine, that I've been getting shots of in my belly. It appears to be a love drug! It does something called Invagination. It causes good cells to envelop or hug bad cells and then absorb them.
Invagination. You might think I'm confusing this is my imagination, but I'm not. It's a sexy chemo.
Invagination Definition:
The action or process of being turned inside or folded back on itself to form a cavity or pouch
I highly recommend a most beautiful song by Victoria Williams called: You R Loved
Massive In-Pouring of Love
My Goodness. Thank you so much. Your calls and emails have been unbelievable. Sweet, funny, poignant, charming, uplifting. I'm a high maintenance girl right now and your support has really made me feel not alone.
I still have Susanne here with me, thank God and we've spent a few days talking about God and Faith. We tried church with my lovely friend Evadney and I had this sweet lady named Susie pray over me. Then my friend Edie came and prayed too. I love prayers. They feel so nice. I have a stack of spiritual books that reaches up to Heaven. Buddhist books. Yogic books. Jewish books. I visualize my body filled with light and I watch my breath flow in and out. It's all helpful. And then watch my thoughts go wackywingo all over again, and it's back to the beginning.
We spent yesterday waiting to hear back from the doctor in NY. He says he's working on something for me and wants to have a phone call on Wednesday. Waiting is hard.
I spoke with a very supportive Leukemia survivor yesterday named Ibby. She had a transplant four years ago when she was not in remission. They did this at Dana Farber in Boston. She is doing amazingly well. Beautifully. She is by far the most enlightened 30-year-old, ever.
This is what I worry about today: Some kind of big harrowing horrible decision to make. Something like, do I go to Sloan Kettering where I know they'll want to do more chemo to lead to a transplant, or to Dana Farber where they'll maybe just go straight to transplant? What if the chemo at Sloan doesn't work and I'm worse off? Or maybe it will work and then I get to do a transplant while in remission? This is crazy-making stuff. But today I don't really have enough info. Just enough to freak myself out.
But the goal for me is still a transplant. My donor is still on hold ( I LOVE YOU DONOR!!!!!). And I LIVE one moment at a time. I AM STILL HERE! STILL KICKING.
I know spiritually there is a lot of discussion about attachment. And I know that attachment brings fear. Fear of losing what you love most. But I also have to say that what I love and what I'm attached to is why I fight. It's why I will never take no for an answer despite the wretched prognosis. This love is what I live for. As it says in Corinthians:
But now remains
Here's a link to one of my favorite Joni Mitchell songs, LOVE. Have a listen, it's beautiful.
http://www.youtube.com/watch?v=PlzIRXzcjY8
And as always, I love you,
Dina
I still have Susanne here with me, thank God and we've spent a few days talking about God and Faith. We tried church with my lovely friend Evadney and I had this sweet lady named Susie pray over me. Then my friend Edie came and prayed too. I love prayers. They feel so nice. I have a stack of spiritual books that reaches up to Heaven. Buddhist books. Yogic books. Jewish books. I visualize my body filled with light and I watch my breath flow in and out. It's all helpful. And then watch my thoughts go wackywingo all over again, and it's back to the beginning.
We spent yesterday waiting to hear back from the doctor in NY. He says he's working on something for me and wants to have a phone call on Wednesday. Waiting is hard.
I spoke with a very supportive Leukemia survivor yesterday named Ibby. She had a transplant four years ago when she was not in remission. They did this at Dana Farber in Boston. She is doing amazingly well. Beautifully. She is by far the most enlightened 30-year-old, ever.
This is what I worry about today: Some kind of big harrowing horrible decision to make. Something like, do I go to Sloan Kettering where I know they'll want to do more chemo to lead to a transplant, or to Dana Farber where they'll maybe just go straight to transplant? What if the chemo at Sloan doesn't work and I'm worse off? Or maybe it will work and then I get to do a transplant while in remission? This is crazy-making stuff. But today I don't really have enough info. Just enough to freak myself out.
But the goal for me is still a transplant. My donor is still on hold ( I LOVE YOU DONOR!!!!!). And I LIVE one moment at a time. I AM STILL HERE! STILL KICKING.
I know spiritually there is a lot of discussion about attachment. And I know that attachment brings fear. Fear of losing what you love most. But I also have to say that what I love and what I'm attached to is why I fight. It's why I will never take no for an answer despite the wretched prognosis. This love is what I live for. As it says in Corinthians:
But now remains
faith, hope, love,
these three;
but the greatest of these is love.
Here's a link to one of my favorite Joni Mitchell songs, LOVE. Have a listen, it's beautiful.
http://www.youtube.com/watch?v=PlzIRXzcjY8
And as always, I love you,
Dina
Sunday, 13 May 2012
Best Job Ever
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
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
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.
Tuesday, 8 May 2012
I'm So In Control. Hahaha...
When you're feeling very ill, or as they in England, "unwell within yourself", it makes perfect sense to be in a hospital. If you can't take care of yourself, then someone else has to. Especially if you're dealing with things like chemo and cancer. Even though my neutrophils are still down, I'm feeling just fine. I've been able to go out with no problems, and I'm not sleeping well here. I need my own bed. I'm feeling like as far as this round goes, I've done my time.
I know that Tuesdays and Fridays are the ward rounds for the big guns. I knew I'd get to see my doctor and his entourage today as they pop around to all the patients on the floor.
It was about 8:15 and I could hear them coming, making jokes in the halls, suiting up in their plastic aprons. I'm fully ready to say it. "Prof Goldstone, I want to go home today. I mean really, home, not just a visit, but home." But, instead, he comes in and says, as always, "How are you?" "Fine. I'm great..."
"Good, we'd like to do a biopsy today."
"Huh? What? Should I be freaking out?"
"No." He says, "It's just time to take a look."
This was completely not my plan. My plan was to do a biopsy when my counts were completely up, sometime next week, when Susanne was here. She just finished nursing school! Not when poor Allison, who tends toward the green in these situations, has to decide between staying with me and the risk of fainting, or just going and getting a Costa Coffee (better choice).
When I did my very first round of induction in Chicago in August of 2008, my cells came back so slowly that they had to do three biopsies before they could decide whether a nascent white cell was actually leukemic or normal. They can look the same... And by the way, in Chicago, they do NOT sedate during biopsies. It really hurts. Don't ever think that mid-westerners aren't bad-ass.
Allison remembered that the doctor said last week he might want to do a biopsy this week. I tend to have no short term memory left, especially for the unpleasant. So I have to go with whatever those around me can remember.
So I hear this news and I fall into a stupor. I start to cry, I call Andy. Allison rubs my back. I think they want to do it because something is wrong!
Whatever. I trust him. I trust my doctor. He just wants to see what going on. And if it's good, then we can crack on. This could be good. This chemo was designed for a gal like me.
So now we wait for results, preliminary and then full. After my freaking-out, I remember what my friend Kaethe says to me a bunch, "There's always hope.". Ask Bill Clinton says, "It ain't just a town in Arkansas".
I know that Tuesdays and Fridays are the ward rounds for the big guns. I knew I'd get to see my doctor and his entourage today as they pop around to all the patients on the floor.
It was about 8:15 and I could hear them coming, making jokes in the halls, suiting up in their plastic aprons. I'm fully ready to say it. "Prof Goldstone, I want to go home today. I mean really, home, not just a visit, but home." But, instead, he comes in and says, as always, "How are you?" "Fine. I'm great..."
"Good, we'd like to do a biopsy today."
"Huh? What? Should I be freaking out?"
"No." He says, "It's just time to take a look."
This was completely not my plan. My plan was to do a biopsy when my counts were completely up, sometime next week, when Susanne was here. She just finished nursing school! Not when poor Allison, who tends toward the green in these situations, has to decide between staying with me and the risk of fainting, or just going and getting a Costa Coffee (better choice).
When I did my very first round of induction in Chicago in August of 2008, my cells came back so slowly that they had to do three biopsies before they could decide whether a nascent white cell was actually leukemic or normal. They can look the same... And by the way, in Chicago, they do NOT sedate during biopsies. It really hurts. Don't ever think that mid-westerners aren't bad-ass.
Allison remembered that the doctor said last week he might want to do a biopsy this week. I tend to have no short term memory left, especially for the unpleasant. So I have to go with whatever those around me can remember.
So I hear this news and I fall into a stupor. I start to cry, I call Andy. Allison rubs my back. I think they want to do it because something is wrong!
Whatever. I trust him. I trust my doctor. He just wants to see what going on. And if it's good, then we can crack on. This could be good. This chemo was designed for a gal like me.
So now we wait for results, preliminary and then full. After my freaking-out, I remember what my friend Kaethe says to me a bunch, "There's always hope.". Ask Bill Clinton says, "It ain't just a town in Arkansas".
Fierce Sun
When the sun comes out in London, it is something…
It has really been raining a lot. And all the English people are cheesed-off. For me, I haven’t cared so much. I’ve had to be inside, and the rain has sort of been an expression of my mood. Waiting for the sun to come out = waiting for my neutrophils to come up. And then I can have my biopsy and it can look A.OK., and everyone can stop worrying about me, including me.
It has really been raining a lot. And all the English people are cheesed-off. For me, I haven’t cared so much. I’ve had to be inside, and the rain has sort of been an expression of my mood. Waiting for the sun to come out = waiting for my neutrophils to come up. And then I can have my biopsy and it can look A.OK., and everyone can stop worrying about me, including me.
But lately, as I’ve been stealthily allowed to go out during
the day, I’ve been nicely thrown back into the fray of normal society and the rain has
started to bug me. I feel bad for
my kids, that our backyard is soggy and muddy and the trampoline is slippery and soaked. It’s May for goodness sake. Throw us a
bone here! A couple of nice days
would be greatly welcomed because London’s a lovely town in the sun.
Today Alli and I wandered down Tottenham Court Road, the
commercial street near the hospital, and ended up in a beautiful home
store called Heal's. They have garden and lounge
furniture in their huge front windows that look out onto the sidewalk and passers-by.
I saw a beautiful lawn chair that just beckoned to me. It was woven rattan in a wenge color with a lighter brown comfy Temper-pedic feeling cushion on it. The chair was long and had many notches exacting your desired height for the back, and a cup holder... What else do you need?
I said to Allison, as I lay down on the chair, “This is my goal: to be post-transplant, at home, in my backyard, laying on a comfy lounger.” Then we both noticed the sun came out and was shining on us. People walking by were as charmed with us having become part of the window display as we were content just to sit there, in the sun, watching them go by.
I saw a beautiful lawn chair that just beckoned to me. It was woven rattan in a wenge color with a lighter brown comfy Temper-pedic feeling cushion on it. The chair was long and had many notches exacting your desired height for the back, and a cup holder... What else do you need?
I said to Allison, as I lay down on the chair, “This is my goal: to be post-transplant, at home, in my backyard, laying on a comfy lounger.” Then we both noticed the sun came out and was shining on us. People walking by were as charmed with us having become part of the window display as we were content just to sit there, in the sun, watching them go by.
Thursday, 3 May 2012
Forgetting
There’s so much one can learn through cancer, or any illness
really. I mostly learned to get my spiritual ducks in a row (even though they
keep getting out of line, those crazy ducks) and to appreciate and be grateful
for every day. As I’ve written before, that, at times, has been overwhelming. I’ve been completely immersed in wonder and just on the edge of functioning. Often having to force myself
back. These are lessons or
teachings that can really change your life, in a good way, and of course, I want
to hold on to them.
Last summer, just before I relapsed, I was saying to myself, “you’re starting to forget…” I noticed myself doing things I thought I had stopped doing. Like compare and despair stuff or hating my fat baby belly that I still had five years after birth. I truly dislike those types of thoughts. They are a useless waste of time. I know we’re all plagued with them but I thought I had really turned the volume down on them, and then, BAM!, they were back, dialed up and blaring.
But, then I relapsed! What a horrible way to get back in touch with what’s important in life. So once
again I will attempt, as I go through and recover from treatment again, to maintain
that pureness in some way.
This time around somehow I don’t mind sitting and meditating. I always pretty much hated it. Being left with my own brain to defend myself. Yikes. But now, I just listen to my breath and the birds outside and I love it. So that’s good. Allison told me that Orthodox Jews say a prayer of gratitude for virtually every action they take during their day, including things like having the ability to open their eyes in the morning or the ability to hear the birds in the trees. They pend their days not forgetting.
This time around somehow I don’t mind sitting and meditating. I always pretty much hated it. Being left with my own brain to defend myself. Yikes. But now, I just listen to my breath and the birds outside and I love it. So that’s good. Allison told me that Orthodox Jews say a prayer of gratitude for virtually every action they take during their day, including things like having the ability to open their eyes in the morning or the ability to hear the birds in the trees. They pend their days not forgetting.
When I did my advanced yoga training in New York, Swami
Asokananda told a story I’ve never forgotten. It was about his three-year-old
nephew. The parents had just had
another baby and his nephew kept begging to be alone with the baby. And the parents kept asking why. He just kept saying he wanted to talk with the baby! So let him have some time alone with the
baby, and of course, listened through the monitor in the room. They were very surprised to hear that their
oldest had a question for the newborn. He asked the baby, “Can you remind what God is like? I’m beginning to
forget”. Gives me chills every time.
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