Steve has been asleep (not his choice) since Monday night, February 9. First with a tube down his throat. Now with a tube in his neck. But with many new white cells nestling in his newly grafted bone marrow.
It has been complicated, challenging and a little frightening. Okay, very frightening. But it looks as if Steve will be back blogging sometime soon. I don't know when exactly, but I'm hoping it will be by sometime next week.
With any luck, he'll focus the determination that brought him through all of this still breathing, into bringing him back to all of us wide awake and full of words.
Thank you all for your prayers and thoughts. Please keep them coming.
Mary Beth, wife of the Ex-Vampire
Monday, February 23, 2009
Thursday, February 12, 2009
Prayers for an Ex Vampire
Steve hasn't been doing his blog because he has been in an induced coma since Monday, and is fighting for his life. He is a tough guy, and we know he can do this. But every prayer sent his way would be welcome.
We are waiting for his new bone marrow stem cells to create new white blood cells to fight the infection and fever that are challenging him now.
We were given a little hope today. His white blood cell count went from 200 yesterday to 300 Thursday morning, to 500 in the evening.
Keep thinking white. And hope.
Mary Beth Garber for Steve
We are waiting for his new bone marrow stem cells to create new white blood cells to fight the infection and fever that are challenging him now.
We were given a little hope today. His white blood cell count went from 200 yesterday to 300 Thursday morning, to 500 in the evening.
Keep thinking white. And hope.
Mary Beth Garber for Steve
Sunday, February 8, 2009
Thursday, February 5, 2009
Night:
I guess there must still be some vampire left in me that the chemo hasn’t destroyed.
Because here it is midnight. And even given all the sleeping pills I am wide (or almost) wide awake.
And my mind is roaming, thinking about how this whole nightmare started.
It didn’t seem like a big deal. Not at first.
Seventeen years ago I needed back surgery. The surgery required a blood test. And the blood test led to MB getting a phone call from our Family Doctor, who just happened to be an old friend. “The surgeons found a little something in the blood tests. When Steve’s feeling better we should do some more tests.”
A little something in the blood test meant a visit to a hematologist/oncologist. Which led
to a bone marrow aspiration. A very painful bone marrow aspiration, which after 17 years of more humane aspirations, I now realize never had to be THAT painful.
The cavalier attitude with which the Dr. did that aspiration should have prepared us for what was to follow. But back then -- before I’d seen the dark side of life as a Vampire -- I believed that most people were like the people I called friends.
People who had consideration for others. People who knew that enough pain killers could help manage the pain of an aspiration. People who knew that hope can heal. And that words can not only hurt –- but kill.
How fast I learned that not all people are humane. Not all Drs. are gentle. And that some Drs. not only have no bedside manner, but are -– whether they mean to be or not -- cruel.
How else can you describe a Dr. -- who you’ve only met twice for a total of 15 minutes --telling you in no uncertain terms that, “with your MDS you’ll probably have 3 good years, 3 not so good years and with lots of transfusions, maybe 10 years total.”
We still have the note pad that MB was writing on as we listened…and it still has the long jagged line running down and off the page.
Looking back I don’t know how I was able to speak. But I looked at that Dr. and asked,
“Are telling me not to make any long-range plans?’ To which he replied, “Yes.”
Today when we look back at the appointment we always refer to the bearer of that
hope destroying news as Dr. Death. For if we had accepted not only his diagnosis -- but also his prognosis -- I would have missed some of the most memorable and meaningful
moments of my life.
Instead we began a journey that brought us to Drs. that offered hope. Drs. who urged that we try any and every old, new and experimental drug. Drs. who fought with us against insurance companies who tried to deny the help and the drugs we’d paid for.
Doctors who were humane, gentle, tough and innovative.
But most of all Drs. who understood that the wrong words and actions could suck the life-blood, hopes, dreams and will to survive right out of a patient.
While the right words could summon the hope that helps to heal.
It is to these Drs. that I am forever grateful. For these are the healers who helped us
on our journey to this hospital at The City Of Hope.
I guess there must still be some vampire left in me that the chemo hasn’t destroyed.
Because here it is midnight. And even given all the sleeping pills I am wide (or almost) wide awake.
And my mind is roaming, thinking about how this whole nightmare started.
It didn’t seem like a big deal. Not at first.
Seventeen years ago I needed back surgery. The surgery required a blood test. And the blood test led to MB getting a phone call from our Family Doctor, who just happened to be an old friend. “The surgeons found a little something in the blood tests. When Steve’s feeling better we should do some more tests.”
A little something in the blood test meant a visit to a hematologist/oncologist. Which led
to a bone marrow aspiration. A very painful bone marrow aspiration, which after 17 years of more humane aspirations, I now realize never had to be THAT painful.
The cavalier attitude with which the Dr. did that aspiration should have prepared us for what was to follow. But back then -- before I’d seen the dark side of life as a Vampire -- I believed that most people were like the people I called friends.
People who had consideration for others. People who knew that enough pain killers could help manage the pain of an aspiration. People who knew that hope can heal. And that words can not only hurt –- but kill.
How fast I learned that not all people are humane. Not all Drs. are gentle. And that some Drs. not only have no bedside manner, but are -– whether they mean to be or not -- cruel.
How else can you describe a Dr. -- who you’ve only met twice for a total of 15 minutes --telling you in no uncertain terms that, “with your MDS you’ll probably have 3 good years, 3 not so good years and with lots of transfusions, maybe 10 years total.”
We still have the note pad that MB was writing on as we listened…and it still has the long jagged line running down and off the page.
Looking back I don’t know how I was able to speak. But I looked at that Dr. and asked,
“Are telling me not to make any long-range plans?’ To which he replied, “Yes.”
Today when we look back at the appointment we always refer to the bearer of that
hope destroying news as Dr. Death. For if we had accepted not only his diagnosis -- but also his prognosis -- I would have missed some of the most memorable and meaningful
moments of my life.
Instead we began a journey that brought us to Drs. that offered hope. Drs. who urged that we try any and every old, new and experimental drug. Drs. who fought with us against insurance companies who tried to deny the help and the drugs we’d paid for.
Doctors who were humane, gentle, tough and innovative.
But most of all Drs. who understood that the wrong words and actions could suck the life-blood, hopes, dreams and will to survive right out of a patient.
While the right words could summon the hope that helps to heal.
It is to these Drs. that I am forever grateful. For these are the healers who helped us
on our journey to this hospital at The City Of Hope.
Tuesday, February 3, 2009
February 3,2009
Today is the day.
The day when I begin the journey back to ordinary.
The chemo is already attacking the enamel of the fangs-
along with the stomach and the mouth.
Today I do not have the energy to swoop down on an unsuspecting soul,
let alone the desire to sink my teeth into a tender neck.
A short walk down the corridor was all it took to send me back
to the comfort of my bed.
Where I wait.
Wait for the cells that arrived last night. Taken from a 24 year old stranger
who I one day hope to know. And thank.
Even now those cells are being counted. And decisions are being made
about the number of cells that will be dripped into my body.
They tell me this is my new birthday.
It is one I will now share with my own mother. Yes, vampires have Moms.
Wives. Husbands. Children. And Grandchildren.
It is from my family and friends that I draw my strength.
From my wife, a cancer survivor, who defied the odds to survive and give birth to our son.
From our son, who at the age of ten, fought for his life with a determination that has characterized his whole life.
And from our grandson, who in his incubator, held tight to his parents’ hands as they willed him to breathe.
I am doing this for me. It would be stupid to deny the obvious.
But I am doing it for them.
Because even Vampires love.
Today is the day.
The day when I begin the journey back to ordinary.
The chemo is already attacking the enamel of the fangs-
along with the stomach and the mouth.
Today I do not have the energy to swoop down on an unsuspecting soul,
let alone the desire to sink my teeth into a tender neck.
A short walk down the corridor was all it took to send me back
to the comfort of my bed.
Where I wait.
Wait for the cells that arrived last night. Taken from a 24 year old stranger
who I one day hope to know. And thank.
Even now those cells are being counted. And decisions are being made
about the number of cells that will be dripped into my body.
They tell me this is my new birthday.
It is one I will now share with my own mother. Yes, vampires have Moms.
Wives. Husbands. Children. And Grandchildren.
It is from my family and friends that I draw my strength.
From my wife, a cancer survivor, who defied the odds to survive and give birth to our son.
From our son, who at the age of ten, fought for his life with a determination that has characterized his whole life.
And from our grandson, who in his incubator, held tight to his parents’ hands as they willed him to breathe.
I am doing this for me. It would be stupid to deny the obvious.
But I am doing it for them.
Because even Vampires love.
Sunday, February 1, 2009
The lesson
Today's headlines started me thinking about the kind of Vampires whose stories are now impossible to ignore. The former self-proclaimed gods and golden boys (they never did get around to letting ladies into the club) of the investment banking, finance, mortgage and home building industries.The “I can't wait to get my tanned mug shot into another ‘celebrity profile’” type of CEO.The ones who just a few years ago couldn't take enough credit (or stock options) for making all the supposedly brilliant decisions that drove their company's stock prices and their compensation to unrealistic heights. The very same guys who are now finally willing and eager to give all of the credit (and the accompanying indictments) to their long suffering, slightly less outrageously compensated underlings.
But this being the second full day of my transplant, I decided to focus on a more uplifting subject.(I'll get back to the Vampires of Wall Street when my counts are higher.)So instead I spent most of today thinking about the message left on our voice mail the night before I checked into the hospital.The message from our gardening service was simple. "Hi, this is Juan, Lucio's boss. Please call us tonight."By the way, Vampires love their gardens--almost as much as they love blood.And before a lack of oxygen made me too tired to rake and low white count could turn a rose prick into a nasty infection-- I was quite a gardener. And only a little bit obsessive.
So a lot of gardeners came and went while I searched for one that could maintain the appearance of an exotic, hands-off, natural setting. All while cutting and clipping to create perfect symmetry.
And then my lovely wife, who'd grown tired of following me around with Band-Aids and Neosporin every time I ventured out with my clippers --found Lucio.The day I came home to find him hand weeding between the rocks of the ornamental stream I told Mary Beth it was safe to put away her Band- Aids. I was laying down my shears.
When I'm home Lucio and I talk. We share our diet cokes and discuss how each fern should be pruned and which flowers can be planted for color without destroying the green on green background. And just that morning, we talked about my cancer, the transplant and how I 'd be happy to pay extra for him to do an extra drop-by every week to make sure the garden was getting what it needed until I came home.
So while I waited for Juan to answer his phone, I began calculating the outrageous amount of money the drop-by would cost, now that they knew my situation.
But I was wrong. Juan wasn’t interested in sucking a few more dollars out of me; instead he was calling to wish me luck. To let me to know that he or Lucio would come by to check on the garden throughout the week. They’d also be sure to put in the flowers we talked about, so it looked pretty for the Ms.
And they wanted me to know that they wouldn’t be charging us for anything for the next several months.
I started to protest. And then Juan said, “We are friends, people take care of their friends.”
What a concept. Bernie Madoff and the rest of those Wall Street CEO’s should have had a gardener like Juan.
They might have learned something from him. I did.
But this being the second full day of my transplant, I decided to focus on a more uplifting subject.(I'll get back to the Vampires of Wall Street when my counts are higher.)So instead I spent most of today thinking about the message left on our voice mail the night before I checked into the hospital.The message from our gardening service was simple. "Hi, this is Juan, Lucio's boss. Please call us tonight."By the way, Vampires love their gardens--almost as much as they love blood.And before a lack of oxygen made me too tired to rake and low white count could turn a rose prick into a nasty infection-- I was quite a gardener. And only a little bit obsessive.
So a lot of gardeners came and went while I searched for one that could maintain the appearance of an exotic, hands-off, natural setting. All while cutting and clipping to create perfect symmetry.
And then my lovely wife, who'd grown tired of following me around with Band-Aids and Neosporin every time I ventured out with my clippers --found Lucio.The day I came home to find him hand weeding between the rocks of the ornamental stream I told Mary Beth it was safe to put away her Band- Aids. I was laying down my shears.
When I'm home Lucio and I talk. We share our diet cokes and discuss how each fern should be pruned and which flowers can be planted for color without destroying the green on green background. And just that morning, we talked about my cancer, the transplant and how I 'd be happy to pay extra for him to do an extra drop-by every week to make sure the garden was getting what it needed until I came home.
So while I waited for Juan to answer his phone, I began calculating the outrageous amount of money the drop-by would cost, now that they knew my situation.
But I was wrong. Juan wasn’t interested in sucking a few more dollars out of me; instead he was calling to wish me luck. To let me to know that he or Lucio would come by to check on the garden throughout the week. They’d also be sure to put in the flowers we talked about, so it looked pretty for the Ms.
And they wanted me to know that they wouldn’t be charging us for anything for the next several months.
I started to protest. And then Juan said, “We are friends, people take care of their friends.”
What a concept. Bernie Madoff and the rest of those Wall Street CEO’s should have had a gardener like Juan.
They might have learned something from him. I did.
Friday, January 30, 2009
Jan. 30, 2009
Turns out that ridding your neighborhood of the local Vampire and ridding a body of the disease that turned you into one, are pretty much the same.
With the local Vampire you simply drive a stake through its heart.
With an MDS patient you start by driving a pic-line into an arm.
Welcome to my first full day of Transplant.
Maybe- just maybe- it's not as bad as I've made it sound. But it's not something you wake up in the morning looking forward to with a 'Gee, I can hardly wait to get started' attitude.
Unless you're a glutton for punishment. Or facing the fact that after 17 years of praying for the next new thing and fighting your insurance company for virtually every on label , off label and experimental drug that's come along- you are out of options.
Because even with the hope of a cure -or at least a long remission- riding on every second of the next 100 days.Even with the professional, charming and extremely skilled doctors and nurses and a hospital campus that resembles a luxury spa. Deep in your soul you know you've been found guilty of being sick and sentenced to an undetermined term of hard labor.
By the end of the first day you've been sent to a well-furnished, sun-filled isolation cell.
The rules of detention have been carefully explained. And you've listened intently because you know that any infraction of these rules can lead to the most extreme of consequences.
You look at the lines connecting you to the 4,5,6 or seven bags hanging on a pole and dripping god knows what into your arms. You're told that at 11:30 that night you'll have a bag of mustard gas derivative pumped into your body...and you can't help it. Deep in your conscious you hear Susan Sarandon's voice is whispering in your ear and picture Sean Penn taking that long, last walk.
And then you remember that you've fought too long and worked too hard to let fear win out. At least for today.
If fate is intend on putting a stake through your heart, it's going to have to run awfully fast to catch you.
Turns out that ridding your neighborhood of the local Vampire and ridding a body of the disease that turned you into one, are pretty much the same.
With the local Vampire you simply drive a stake through its heart.
With an MDS patient you start by driving a pic-line into an arm.
Welcome to my first full day of Transplant.
Maybe- just maybe- it's not as bad as I've made it sound. But it's not something you wake up in the morning looking forward to with a 'Gee, I can hardly wait to get started' attitude.
Unless you're a glutton for punishment. Or facing the fact that after 17 years of praying for the next new thing and fighting your insurance company for virtually every on label , off label and experimental drug that's come along- you are out of options.
Because even with the hope of a cure -or at least a long remission- riding on every second of the next 100 days.Even with the professional, charming and extremely skilled doctors and nurses and a hospital campus that resembles a luxury spa. Deep in your soul you know you've been found guilty of being sick and sentenced to an undetermined term of hard labor.
By the end of the first day you've been sent to a well-furnished, sun-filled isolation cell.
The rules of detention have been carefully explained. And you've listened intently because you know that any infraction of these rules can lead to the most extreme of consequences.
You look at the lines connecting you to the 4,5,6 or seven bags hanging on a pole and dripping god knows what into your arms. You're told that at 11:30 that night you'll have a bag of mustard gas derivative pumped into your body...and you can't help it. Deep in your conscious you hear Susan Sarandon's voice is whispering in your ear and picture Sean Penn taking that long, last walk.
And then you remember that you've fought too long and worked too hard to let fear win out. At least for today.
If fate is intend on putting a stake through your heart, it's going to have to run awfully fast to catch you.
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