In September of 1990, I was rushed to an emergency room with some medical issues. I was brought there because my blood pressure was 220 over 120 and I could barely breathe or stand up. I had experienced lighter episodes during my childhood when I was given allergy medicine, but nothing which required me to go to the emergency room.
I was 17, I worked out three hours a day and I was a solid block of muscle. My hair was long, about half way down my back, and this made the staff at Humana Hospital in Overland Park think I was just another run-of-the-mill overdose by some druggie kid. They were pretty sure it was drugs, most likely coke. In order to teach me a lesson, the staff did what they routinely did with OD's who come into the ER, they let me suffer and ride out the pain. They stuck me in a corner and just let me writhe around in agony. It was miserable pain, and nothing brought me comfort. My whole body ached. My eyes burned. My muscles kept contracting. My repeated requests for a sedative were ignored with curt replies from the nurses. Three hours later, the results from a blood test revealed that I had no drugs in my system and suddenly the attitude and demeanor of the staff changed dramatically. A nurse was willing to stay with me in my room and tried her best to ease my pain. Doctors came in and were all eager to be the first one to solve the mystery of what was wrong with me.
It was determined that nothing could be done for me at that time other than rest and observation and so I was admitted into a room in the hospital. It was during the transfer from the gurney to the hospital bed that I went in to a grand mal seziure and my heart stopped. I regained consciousness only for a second to find a tube down my throat rendering me unable to speak, cry out, or breathe on my own. I struggled against it and the attendants had to hold me down. Then I died.
I was no longer in pain and I wasn't scared anymore. I was in a strange consciousness I could not define. I found myself sitting in a chair in a dark room. A soft hand, which I knew was my grandfather's, touched my right shoulder and said, "OK." I turned to look at him and then I wasn't there anymore. It was all over.
I regained consciousness in an unfamiliar room at the hospital. I barely opened my eyes and in the dimly lit room I could see my Biology teacher, Mr. Frisbee sitting next to my bed. He was sad. I passed out immediately. I regained consciousness again and realized I was wearing a respirator. I was strapped down and was unable to move any part of my body. I was not in pain though I was very uncomfortable. I could not tell who was in the room with me. I passed out again.
The next time I opened my eyes, a large black man in a white coat was removing things from my body. He removed the respirator which allowed me to breathe on my own for the first time; he removed the restraints though I didn't have the energy to move my arms; and he started to remove other tubes in my body which generally don't feel good coming out, and for some reason I thought this man was an angel.
I asked him, "Are you an angel?" He laughed very softly and sweetly, then he turned me on my side, curled my legs into my chest and gave me a spinal tap. That's when I knew he wasn't an angel. If you've never had a spinal tap, it feels a little like all the nerves in your body are being set on fire at the same time and then ripped out of your body. It was horrible.
Doctors would come in to talk to me but they were reticent to tell me what was going on or what had happened since my heart stopped. They just kept saying, "You're very lucky to be alive and you're very strong." It turned out that they didn't have a clue and were desperate for help or insight. My family never came to the hospital so the doctors had to ask me for a medical history and all I could remember was that I used to wet the bed and I had hay fever. They gave me a battery of tests, and put me in or under all sorts of imaging machinery and eventually they found the culprit.
It's called a pheochromocytoma. It's a unique tumor (go ahead and look it up if you need to) which popped up in my adrenal glands. All it does is pump out massive amounts of epinephrine and norepinephrine into the blood stream. I shall illustrate it for you the same way they did for me.
Imagine a small boat engine putting along, barely idling. Now imagine the engine of a race car. A normal person's heart is the small engine and my heart was the race car. And every time I introduced a stimulant into my body, my heart would redline. I remember I could stay awake for three or four days at a time with no sleep but then suddenly I would need to crash for two days. Now I know why.
The "pheo" as they called it, was genetic. I was born with it. Wanna know how often that happens? Never. It never happens. Pheos are earned by exposure to immense stress. But we will talk about that later. It was also cancerous and had to come out. The longer it stayed in my body, the more long term damage it could do to my vital organs and heart. It was going to kill me before I was 25, that was what I was told. In fact, my maternal grandfather had died at the age of 25 of a mysterious heart attack which no one could explain. Of course, now we all know, but for almost forty years his death was a mystery in my family.
The problem with surgery was that in order to perform it correctly they had to give me something to make me go to sleep and no one was really sure if that could kill me or not. It was a fun time for everyone. The tumor was erratic. Odds of success... 1 in 1000.
I spent a week in the hospital preparing myself for the surgery. Doctors from all over the United States came to Humana to peek in and see this unique tumor. Because the last reported "pheo" was seen in a field hospital in the Phillipines during the Vietnam war when these tumors would occasionally pop up in soldiers. Their version of the tumor was typical and caused by extremely high levels of stress usually associated with the battlefield. The field doctors saw them so often that the surgery became commonplace during the War. In fact, the surgeon on my case, Dr. Chucky Stucky (not kidding, that's his real name) was brought in because he was a field surgeon in Vietnam and was the only person who knew how to take one out. He hadn't done the surgery in twenty years, but he was pretty sure he remembered were to find it. Those were his exact words. He was a funny guy. He said his only concern was that the tumor was genetic and he wasn't sure what changes that might bring.
The week before the surgery no one was giving me much of a chance. The hospital even arranged for me to write letters to relatives and time to "take care of any personal matters." I was also visited daily by nuns and other clergy all of whom felt it was really unfortunate what I was going through. They did some singing. That was unfortunate.
I didn't sleep for the entire week, I just sat up listening to U2's Joshua Tree album over and over again and just looked out the window. Of the stages of death, I just stayed in denial. Why bother with the rest of the stages when you have denial?
The morning of the surgery arrived and some girl from my high school arrived to stay with me during the process. She followed the gurney out of my room and down to the doors of operating room, where she was then directed to a waiting room. I went in the room and a doctor sighed deeply, then put an IV in my arm. A lot of doctors were watching and I just went to sleep. I was pretty sure I was going to die. I didn't.
I woke up in immense pain, but I woke up. They had slit me open from my bellybutton to the bottom of my ribcage at the xiphoid process, and I bear that scar today. It was easier for them to reach my kidneys and adrenal gland from the top of my body because going through the back would have meant sawing open my rib cage. When I woke up, I had a massive weight on my stomach which helped with the pain. The only good part of the surgery was waking up with a morphine drip stent inserted directly into my chest. I could press a button every twenty minutes, a machine would beep and then I would pass out in a warm haze in less than a second. But the biggest problem was my new "period."
Now that the tumor was removed, my hormones were scrambled in a way they had never experienced before. Mood swings were every other minute. Madness, rage, delusions, uncontrollable sadness, fear... And then morphine. It was a very uncomfortable existence that first month.
The other large problem was the lack of epinephrine in my body. If your body is used to the race car, it doesn't know how to behave with the small engine idling. The big threat was my heart stopping because it wasn't used to its new low level conditions. In the surgery, one adrenal gland was removed and one kidney. The genetic form of my pheo meant that the tumor had grown into my kidney as well. To be sure they got all of the mass, they cut the whole kidney out. A small cadre of doctors were watching everything I was doing to learn, and to a small extent, make sure I didn't die. With my manic mood swings, I was in no mood for people to hang around me. And then more morphine.
I finally stabilized after a month and got off the morphine... slowly. The pain went away and eventually I was able to go home. Well, I went to a friend's house. The doctors went away as well when nothing more became of my condition.The paperwork from the hospital shows that the tumor was sent to Houston for study. The entire length of my stay in the hospital, two people came to visit; the girl from school who joined me the morning of my surgery and my friend Adam, who was fired because he came to visit me. My relatives stayed away. My mother said I was doing all of this for attention.
I had to go in for chemo to rid my body of any "missed parts of the tumor." And for all the pain brought on by the surgery, the spinal tap and the heart attack; chemo was far worse. It's gut wrenching. It hurts because it burns internally. If you've ever consumed something that was too hot and it went down before it cooled off and you could feel it burning in your stomach, that's what it's like, only worse. It never cools off and it's the whole body not just your stomach. Thankfully that only lasted for two months before I said I was done with that shit and by February of 1991, it was all over.
I went into the hospital at 190 pounds of solid muscle. I came out barely 130 pounds. The doctors told me that my metabolism was shot and that I would have to monitor my health to make sure things didn't pop up. So far, nothing. My heart is weak, my remaining kidney is working double time, my liver is damaged. But I am still alive.
Here's my advice for anyone who has cancer: No matter what they offer you, no matter how odd it sounds, do it. Do every single treatment they can come up with. If they want you to eat armadillo toes covered with dog shit, do it. If they want you to inhale farts captured in bubble gum bubbles blown out of a yak's butt, do it. The one great quality that all cancer survivors share is a willingness to live and they have proven that to themselves. You will never understand how much you love being alive until someone or something is trying to take it away from you. The amount of pain you will tolerate shows you what life means to you. So no matter what they say it will take, do it.
I was 17, I worked out three hours a day and I was a solid block of muscle. My hair was long, about half way down my back, and this made the staff at Humana Hospital in Overland Park think I was just another run-of-the-mill overdose by some druggie kid. They were pretty sure it was drugs, most likely coke. In order to teach me a lesson, the staff did what they routinely did with OD's who come into the ER, they let me suffer and ride out the pain. They stuck me in a corner and just let me writhe around in agony. It was miserable pain, and nothing brought me comfort. My whole body ached. My eyes burned. My muscles kept contracting. My repeated requests for a sedative were ignored with curt replies from the nurses. Three hours later, the results from a blood test revealed that I had no drugs in my system and suddenly the attitude and demeanor of the staff changed dramatically. A nurse was willing to stay with me in my room and tried her best to ease my pain. Doctors came in and were all eager to be the first one to solve the mystery of what was wrong with me.
It was determined that nothing could be done for me at that time other than rest and observation and so I was admitted into a room in the hospital. It was during the transfer from the gurney to the hospital bed that I went in to a grand mal seziure and my heart stopped. I regained consciousness only for a second to find a tube down my throat rendering me unable to speak, cry out, or breathe on my own. I struggled against it and the attendants had to hold me down. Then I died.
I was no longer in pain and I wasn't scared anymore. I was in a strange consciousness I could not define. I found myself sitting in a chair in a dark room. A soft hand, which I knew was my grandfather's, touched my right shoulder and said, "OK." I turned to look at him and then I wasn't there anymore. It was all over.
I regained consciousness in an unfamiliar room at the hospital. I barely opened my eyes and in the dimly lit room I could see my Biology teacher, Mr. Frisbee sitting next to my bed. He was sad. I passed out immediately. I regained consciousness again and realized I was wearing a respirator. I was strapped down and was unable to move any part of my body. I was not in pain though I was very uncomfortable. I could not tell who was in the room with me. I passed out again.
The next time I opened my eyes, a large black man in a white coat was removing things from my body. He removed the respirator which allowed me to breathe on my own for the first time; he removed the restraints though I didn't have the energy to move my arms; and he started to remove other tubes in my body which generally don't feel good coming out, and for some reason I thought this man was an angel.
I asked him, "Are you an angel?" He laughed very softly and sweetly, then he turned me on my side, curled my legs into my chest and gave me a spinal tap. That's when I knew he wasn't an angel. If you've never had a spinal tap, it feels a little like all the nerves in your body are being set on fire at the same time and then ripped out of your body. It was horrible.
Doctors would come in to talk to me but they were reticent to tell me what was going on or what had happened since my heart stopped. They just kept saying, "You're very lucky to be alive and you're very strong." It turned out that they didn't have a clue and were desperate for help or insight. My family never came to the hospital so the doctors had to ask me for a medical history and all I could remember was that I used to wet the bed and I had hay fever. They gave me a battery of tests, and put me in or under all sorts of imaging machinery and eventually they found the culprit.
It's called a pheochromocytoma. It's a unique tumor (go ahead and look it up if you need to) which popped up in my adrenal glands. All it does is pump out massive amounts of epinephrine and norepinephrine into the blood stream. I shall illustrate it for you the same way they did for me.
Imagine a small boat engine putting along, barely idling. Now imagine the engine of a race car. A normal person's heart is the small engine and my heart was the race car. And every time I introduced a stimulant into my body, my heart would redline. I remember I could stay awake for three or four days at a time with no sleep but then suddenly I would need to crash for two days. Now I know why.
The "pheo" as they called it, was genetic. I was born with it. Wanna know how often that happens? Never. It never happens. Pheos are earned by exposure to immense stress. But we will talk about that later. It was also cancerous and had to come out. The longer it stayed in my body, the more long term damage it could do to my vital organs and heart. It was going to kill me before I was 25, that was what I was told. In fact, my maternal grandfather had died at the age of 25 of a mysterious heart attack which no one could explain. Of course, now we all know, but for almost forty years his death was a mystery in my family.
The problem with surgery was that in order to perform it correctly they had to give me something to make me go to sleep and no one was really sure if that could kill me or not. It was a fun time for everyone. The tumor was erratic. Odds of success... 1 in 1000.
I spent a week in the hospital preparing myself for the surgery. Doctors from all over the United States came to Humana to peek in and see this unique tumor. Because the last reported "pheo" was seen in a field hospital in the Phillipines during the Vietnam war when these tumors would occasionally pop up in soldiers. Their version of the tumor was typical and caused by extremely high levels of stress usually associated with the battlefield. The field doctors saw them so often that the surgery became commonplace during the War. In fact, the surgeon on my case, Dr. Chucky Stucky (not kidding, that's his real name) was brought in because he was a field surgeon in Vietnam and was the only person who knew how to take one out. He hadn't done the surgery in twenty years, but he was pretty sure he remembered were to find it. Those were his exact words. He was a funny guy. He said his only concern was that the tumor was genetic and he wasn't sure what changes that might bring.
The week before the surgery no one was giving me much of a chance. The hospital even arranged for me to write letters to relatives and time to "take care of any personal matters." I was also visited daily by nuns and other clergy all of whom felt it was really unfortunate what I was going through. They did some singing. That was unfortunate.
I didn't sleep for the entire week, I just sat up listening to U2's Joshua Tree album over and over again and just looked out the window. Of the stages of death, I just stayed in denial. Why bother with the rest of the stages when you have denial?
The morning of the surgery arrived and some girl from my high school arrived to stay with me during the process. She followed the gurney out of my room and down to the doors of operating room, where she was then directed to a waiting room. I went in the room and a doctor sighed deeply, then put an IV in my arm. A lot of doctors were watching and I just went to sleep. I was pretty sure I was going to die. I didn't.
I woke up in immense pain, but I woke up. They had slit me open from my bellybutton to the bottom of my ribcage at the xiphoid process, and I bear that scar today. It was easier for them to reach my kidneys and adrenal gland from the top of my body because going through the back would have meant sawing open my rib cage. When I woke up, I had a massive weight on my stomach which helped with the pain. The only good part of the surgery was waking up with a morphine drip stent inserted directly into my chest. I could press a button every twenty minutes, a machine would beep and then I would pass out in a warm haze in less than a second. But the biggest problem was my new "period."
Now that the tumor was removed, my hormones were scrambled in a way they had never experienced before. Mood swings were every other minute. Madness, rage, delusions, uncontrollable sadness, fear... And then morphine. It was a very uncomfortable existence that first month.
The other large problem was the lack of epinephrine in my body. If your body is used to the race car, it doesn't know how to behave with the small engine idling. The big threat was my heart stopping because it wasn't used to its new low level conditions. In the surgery, one adrenal gland was removed and one kidney. The genetic form of my pheo meant that the tumor had grown into my kidney as well. To be sure they got all of the mass, they cut the whole kidney out. A small cadre of doctors were watching everything I was doing to learn, and to a small extent, make sure I didn't die. With my manic mood swings, I was in no mood for people to hang around me. And then more morphine.
I finally stabilized after a month and got off the morphine... slowly. The pain went away and eventually I was able to go home. Well, I went to a friend's house. The doctors went away as well when nothing more became of my condition.The paperwork from the hospital shows that the tumor was sent to Houston for study. The entire length of my stay in the hospital, two people came to visit; the girl from school who joined me the morning of my surgery and my friend Adam, who was fired because he came to visit me. My relatives stayed away. My mother said I was doing all of this for attention.
I had to go in for chemo to rid my body of any "missed parts of the tumor." And for all the pain brought on by the surgery, the spinal tap and the heart attack; chemo was far worse. It's gut wrenching. It hurts because it burns internally. If you've ever consumed something that was too hot and it went down before it cooled off and you could feel it burning in your stomach, that's what it's like, only worse. It never cools off and it's the whole body not just your stomach. Thankfully that only lasted for two months before I said I was done with that shit and by February of 1991, it was all over.
I went into the hospital at 190 pounds of solid muscle. I came out barely 130 pounds. The doctors told me that my metabolism was shot and that I would have to monitor my health to make sure things didn't pop up. So far, nothing. My heart is weak, my remaining kidney is working double time, my liver is damaged. But I am still alive.
Here's my advice for anyone who has cancer: No matter what they offer you, no matter how odd it sounds, do it. Do every single treatment they can come up with. If they want you to eat armadillo toes covered with dog shit, do it. If they want you to inhale farts captured in bubble gum bubbles blown out of a yak's butt, do it. The one great quality that all cancer survivors share is a willingness to live and they have proven that to themselves. You will never understand how much you love being alive until someone or something is trying to take it away from you. The amount of pain you will tolerate shows you what life means to you. So no matter what they say it will take, do it.
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