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.
Friday, January 30, 2009
Wednesday, January 28, 2009
Jan. 28th, 2009
Most normal people will tell you that Vampires have never roamed this world.
That they exist only in pretentious novels, TV shows aimed at the important 18-34 demographic and movies starring actors and actresses trying to prove that they’ve got more than just a body and a face. They have talent with a T. And they’re just waiting to dip their bloody fangs into a role that will prove it.
Well, I’m a normal person or at least what passes for one in Los Angeles and environs. And I believe in Vampires because I’ve become one.
No, you won’t find bloody fangs spoiling my previously perfectly braced teeth. And I promise I’ve never swooped down on an unsuspecting victim and left two perfect punctures in a tanned neck (sprayed on or natural).
But for the last two years I’ve lived on other people’s blood.
Somewhere in the neighborhood of 100 bags of ‘packed red cells’ have rushed through
my veins to my oxygen starved organs. Bags and bags of platelets have plied their way into my arteries in an ever more futile attempt to stop a cut from turning into an external bleed that would leave me lying in a puddle of my own blood. Or from a bump or a bang that would cause an internal bleed that could leave my brain as swollen and useless as a stomped on melon.
Yes, I am a normal person who is a Vampire. But I’m here to tell you that you and yours have nothing to fear from me or those like me.
We are your friends. We are your neighbors. We are your family. And what we fear is that there will not be enough blood to go around. That a natural disaster, a terrorist attack, a simple lack of people caring enough to willingly give of themselves or a rejection letter from an uncaring insurance company will leave us lacking the blood we need to survive.
And yet, speaking only for this Vampire, what we dread is waking up each morning and knowing that there is a bag (or bags) of precious blood waiting for us at our infusion center, doctors or hospital. That our port will be punctured, the needle attached and hours of what could have been a productive day will be spent hooked up to the blood that most people take so for granted.
Yes, Vampires exist. They walk among you. They’re in the car next to you on the freeway. In the office or cube next to you at work. They’re working out on the machine next to you at the gym. And at home - kissing their wives, lovers, children and grandchildren good night.
It’s not necessarily a life one would choose for themselves.
But it is interesting. The people you meet. The friends you make. The changes you go through that help you reflect on the person you were and define the person you have become.
Four days ago I began a journey. A journey I swore I’d never take. A journey that for years was as scary to me as evil Vampires are to those who believe in them.
I hope my stem cell transplant allows me to shed my Vampire persona and emerge as the man I used to be. Only better.
And hopefully I will during and after this journey have the time to share some of the experiences I’ve had as a Vampire as well as what those experiences meant to me. And hopefully you’ll find something in those experiences or my mental meanderings that strike a nerve in you. If so I hope you’ll share. Because in one-way or another we are all Vampires. We live off the blood, the work, the love, the despair and the hope of others.
Let our journey begin.
Most normal people will tell you that Vampires have never roamed this world.
That they exist only in pretentious novels, TV shows aimed at the important 18-34 demographic and movies starring actors and actresses trying to prove that they’ve got more than just a body and a face. They have talent with a T. And they’re just waiting to dip their bloody fangs into a role that will prove it.
Well, I’m a normal person or at least what passes for one in Los Angeles and environs. And I believe in Vampires because I’ve become one.
No, you won’t find bloody fangs spoiling my previously perfectly braced teeth. And I promise I’ve never swooped down on an unsuspecting victim and left two perfect punctures in a tanned neck (sprayed on or natural).
But for the last two years I’ve lived on other people’s blood.
Somewhere in the neighborhood of 100 bags of ‘packed red cells’ have rushed through
my veins to my oxygen starved organs. Bags and bags of platelets have plied their way into my arteries in an ever more futile attempt to stop a cut from turning into an external bleed that would leave me lying in a puddle of my own blood. Or from a bump or a bang that would cause an internal bleed that could leave my brain as swollen and useless as a stomped on melon.
Yes, I am a normal person who is a Vampire. But I’m here to tell you that you and yours have nothing to fear from me or those like me.
We are your friends. We are your neighbors. We are your family. And what we fear is that there will not be enough blood to go around. That a natural disaster, a terrorist attack, a simple lack of people caring enough to willingly give of themselves or a rejection letter from an uncaring insurance company will leave us lacking the blood we need to survive.
And yet, speaking only for this Vampire, what we dread is waking up each morning and knowing that there is a bag (or bags) of precious blood waiting for us at our infusion center, doctors or hospital. That our port will be punctured, the needle attached and hours of what could have been a productive day will be spent hooked up to the blood that most people take so for granted.
Yes, Vampires exist. They walk among you. They’re in the car next to you on the freeway. In the office or cube next to you at work. They’re working out on the machine next to you at the gym. And at home - kissing their wives, lovers, children and grandchildren good night.
It’s not necessarily a life one would choose for themselves.
But it is interesting. The people you meet. The friends you make. The changes you go through that help you reflect on the person you were and define the person you have become.
Four days ago I began a journey. A journey I swore I’d never take. A journey that for years was as scary to me as evil Vampires are to those who believe in them.
I hope my stem cell transplant allows me to shed my Vampire persona and emerge as the man I used to be. Only better.
And hopefully I will during and after this journey have the time to share some of the experiences I’ve had as a Vampire as well as what those experiences meant to me. And hopefully you’ll find something in those experiences or my mental meanderings that strike a nerve in you. If so I hope you’ll share. Because in one-way or another we are all Vampires. We live off the blood, the work, the love, the despair and the hope of others.
Let our journey begin.
Tuesday, January 27, 2009
We have embarked on an amazing journey.
Two days ago I received my first round of out-patient chemo at City of Hope in preparation for a Stem Cell Transplant that will hopefully cure my Myelodysplastic Syndrome.
The out patient part will continue through this Thursday.
Then on Friday I check-in for the heavy duty chemo and on Feb. 4th I will receive my donor's Stem Cells.
We have been fighting this disease for over 17 years and couldn't have done it without all the support given us by our family, friends and caregivers who have become like family. There may be times when I'm too tired to write...but keep checking.
And don't be too surprised if this story turns out to be not just about my journey but about journeys we all take and decisions we all make.
Steve
Two days ago I received my first round of out-patient chemo at City of Hope in preparation for a Stem Cell Transplant that will hopefully cure my Myelodysplastic Syndrome.
The out patient part will continue through this Thursday.
Then on Friday I check-in for the heavy duty chemo and on Feb. 4th I will receive my donor's Stem Cells.
We have been fighting this disease for over 17 years and couldn't have done it without all the support given us by our family, friends and caregivers who have become like family. There may be times when I'm too tired to write...but keep checking.
And don't be too surprised if this story turns out to be not just about my journey but about journeys we all take and decisions we all make.
Steve
Subscribe to:
Posts (Atom)
