Recently I have received several e-mail messages asking the question "how did the warrior get krippled?" So rather than keep writing that e-mail going to answer that question right here today. For those of you who have been longtime followers of my blog this is a rehash for you and you may want to skip it completely. For everyone else...
In late March of 2006 I started suffering symptoms that led doctors to believe that maybe having heart trouble. Short of breath, heart racing, totally exhausted after mild exertion and general lethargy. But after a battery of EKGs in which all measurements associated with sinus rhythm were normal, the Dr. ordered a basic battery of blood tests and sent me home to await results.
on April 7, 2006 at around 1:15 in the morning, my phone rang. It was not unusual as I was on call 7/24 at work. However this was not the help desk calling it was a doctor at the emergency room at Kaiser Permanente. After confirmed he was talking to the right person, he told me I need to come to the emergency room immediately, my blood tests have returned but he did not want to discuss it on the phone. After a long night and most of the day in the emergency room admitting me to the hospital and told me that oncologists would be in to see me soon. The blood test showed that I had almost no red blood cells and all of my white blood cells were immature. This condition can be caused by leukemia or aplastic anemia. No way to tell for sure which, without administering a bone marrow biopsy.
The biopsy confirmed that I had acute myeloid leukemia (AML). The prognosis was not good the Dr. said that this type of disease has a lesson 25% survival rate at five years. But they sent my bone marrow biopsy to an expert in Los Angeles for confirmation. In the interim I received blood transfusions to revitalize my system and keep me from keeling over. This went on for about two weeks, getting transfused every other day, until the results returned. There was a new diagnosis I had a very rare subset of AML which was manifest by a chromosome transfer between T 13-15, a condition known to be caused by exposure to the chemical benzene. Until the year before my diagnosis this rare form of leukemia was 99% fatal despite bone marrow transplants. But in the interim the Communist Chinese had found that megadoses of retinoic acid would actually cause a transposition between T 13 and 15and correct the condition. I was administered the drugs in the form of 11 large capsules four times a day, I don't remember what the total dosage was. But I remember it was huge. In addition to the retinoic acid treatment the oncologists insisted on giving me traditional chemotherapy in an effort to; "kill off the cancerous leukocytes that were roaming in my body."
DAUNORUBICIN
this chemical was injected into me intravenously once every day for seven days. Hanging from the IV pole the clear plastic bag and clear plastic tubing the drug resembled orange Kool-Aid almost fluorescent in color I remember being told the chief concern was to not get the chemical on my skin as it would burn me. Somehow, having it inside my blood veins was not a comforting thought. They kept me in the hospital for another two weeks to monitor my condition but also to protect me because his chemical would suppress my immune system so drastically that a normal cold which would cause a runny nose and watery eyes for you, would most certainly kill me. I was allowed to go home for short for our visit but I was told I must wear a surgical mask, have no physical contact with anyone and I must return before 6 PM. When they finally release me to go home I was told to stay at home and not visit public places were I could catch a disease. And no hugging or kissing the family members.
on the Friday before the Fourth of July, 2006 I got him a motorcycle and rode to work for the company picnic. I was 6'4" and weighed a whopping 147 pounds. Bald as a lightbulb, in fact all my body hair fell out, I'm quite glad that no pictures of me exist from that time. I was still not clear by the doctors to return to work as a felt a second round of chemotherapy was in order. This despite the fact the bone marrow biopsy confirmed the chromosome transfer had been reversed (the retinoic acid had worked).
CYTARABINE
in August of 2006, I returned to the Outpatient Treatment Ctr., Kaiser Permanente and was hooked up to a infusion pump that I carried on my hip 7/24 for the next week returning every second day have the pump recharged with the chemicals. The doctor told me I could stay at home with this pump as long as I remain in isolation, for the reasons listed before, with the warning:
"if you get a fever above 101.6°, return emergency room immediately." The side effects of this drug were very unpleasant the rather gross, so I'll skip those details but almost one week after the infusion pump was removed by temperature was measured at 101.7°, and I was taken to the hospital.
what happened next, is from things that witnesses told me. I have no recollection as I want almost immediately into a coma. A condition that lasted the better part of a month. Kept alive by a ventilator the team of diligent experts, despite the fact that my body had all but shut down. As it turned out a common intestinal bacteria had crossed over into my bloodstream and sent me into sepsis, more commonly known as toxic shock, a condition where your blood is actually poisonous and damaging to the tissues of your body. My kidneys shut down and I was placed on dialysis. In response to the condition my body went into defense mode my blood pressure dropped to almost 0. To counter that blood pressure drop I was hooked up to huge bottles of intravenous saline water. I was given so much water that the skin on my hands and arms broke open the water poured out. I ballooned from the 147 pounds to over 350, all water weight. There were several occasions during August and September of 2006 the doctors call my family to warn them if they wanted to see me alive they need to come now. Looking back on it I often joke, "those doctors did everything they could. But, I lived anyway."
sometime in late September of 2006 I opened my eyes in response to someone asking me to. I have a vague recollection of people speaking to me during that time period when I was in a deep coma, words but not faces. So when someone tells you a comatose person can't hear you, please rest assured that they quite possibly can. I did! When I awoke the only thing I was aware of was an acute, continuous, exquisite pain in every fiber of my being from the tips of my fingers to my eyelashes everything screamed out in agony. The most intense pain relieving chemicals in the world were of no relief. It was unbearable for things to touch me anywhere. The weight of the sheets laying on me cause intense flashes of white-hot pain to shoot all over my body. For some reason, because I did not know at the time that I was paralyzed, the medical staff came in and told me on my side every two hours. I'm quite positive that the string of profanities and curses that I leveled at them in response to the pain that I was experiencing, still echoes in the halls of the hospital, lo these five years later.
As I just told you I did not understand but I was paralyzed. I knew I could not move. But I thought it was due to some form of physical restraint. And because of that I was on wood mechanically rotate and tilt to relieve pressure, it felt like sleeping aboard a ship, something I had done for 17 years of my life. So in my mind I picture myself tied down on a table top aboard some small boat. I begged visitors to please untie me. I quite distinctly remember threatening my wife with divorce once I finally got loose, because she would not untie me.
Conditions:
paralyzed from the neck down, different doctors use different terms to describe it some said quadriplegic while other said quadraparetic.
my lips and mouth were red sore and covered in scabs because of the dry air forced in and out by the ventilator.
My kidneys were functioning but my liver was barely hanging on as my blood test showed high levels of liver enzymes.
Because of the restricted blood flow caused by the zero blood pressure both of my feet were black and gangrenous.
I would drift in and out of consciousness because of the various infections I was experiencing. And for the next year I was given enough antibiotics to cure a small third world nation of all its ills.
at the end of October 2006 the hospital discharge me into the care of a nursing facility near where I lived. Not so much because I was well again. The more likely because they couldn't do anything else for me. My condition had stabilized, although temporarily, enough that it did not warrant me being on inpatient status. So I was checked into a care facility which was not covered by my insurance, was paid for by the gracious love of my mother-in-law. The day staff people were very kind loving and considerate people. But for the two months I lived there I lived in terror of the midnight staff. That story is written another part in this blog roll back and find it.
the Kaiser Permanente physician who attended me at just care facility refused to allow me access to any form of physical therapy. He told me that I was a hopeless, flaccid muscled quadriplegic who was under his care for custodial purposes only. Unable to move to use a call button doing that I had for contacting the staff was my voice. I often joke that I don't have an indoor voice, I have actually been asked to leave a bowling alley for being too loud and I wasn't even drunk! So I would holler at the top of my voice to get attention from the attending staff. The night staff would come in shut the door behind them and scold me for being noisy. Being paralyzed and unable to use the bathroom facilities I was in a diaper. The night staff would ridicule me for messing myself, like I had some other choice. There are other abuses would keep to myself. I endured them because I thought I had no other choice. Who was became known that my insurance would cover home healthcare, I immediately moved home in the hospital bed with doctors and nurses coming to visit me on a regular basis sometimes almost daily.
Benzene
The only time I had ever been exposed to benzene was in the United States Navy service. It was, and quite possibly still is, using every paint product that the Navy had. As part of preservation of the ship every sailor becomes an experienced painter. And you get the paint on your hands and body. But rather than try to scrub it off with soap, practice was to wash her hands in pain thinner which major ingredient was benzene. Benzene was also a drying agent in the paint itself, as well as the primers used before applying paint.
when friends and relatives heard about what happened to me, everyone told me to get a hold of the VA as this is a clear-cut case of line-of-duty chemical exposure. So we submitted paperwork requesting VA assistance. But immediately was shot down. The denial letter said it was because I did not indicate in my application that benzene was the cause of my actual problem. Despite the fact that they acknowledged that benzene does cause that and that it appeared as though I had been exposed. Typical bureaucratic bull shit. We were allowed one rebuttal this time we asked my primary Dr. to please write a letter in support of my request. It took three years from that point but in the end the VA grant me a 100% service connected disability.
In the 2007 2008 infections continued. I was admitted to the hospital on the verge of another, being pumped full of antibiotics and painkillers and was asked to submit to exploratory surgery of my abdomen. The surgeon was a practical man they told me quite plainly; "if once we are in there we discover something wrong with the large intestine we can either repair or remove that part. But if the problem is with the upper intestine, well quite frankly you may not survive the week. Do you give us permission to go in and fix whatever we can find?" of course I said yes!
what they found was the interior lining of my large intestine had been eaten away by the bacterial infection that started this whole thing off. And it was removed. Also sometime in 2008, the date it eludes me, I finally got well enough to undergo surgery for removal of my gangrenous feet. My left leg was amputated below the knee because the destruction of tissue had incorporated into the bones of my foot and ankle. My right foot however have miraculously healed enough that all the toes needed to be removed. Shortly thereafter I experience another setback in the form of pancreatitis in some sort of gallbladder ailment. Both of these conditions mounted new levels of pain the required me to take hallucinogenic doses of morphine six times a day and eight 500 mg doses of Vicodin every day. My medicine cabinet was quite capable of kickstarting the 60s all over again.
unable to eat I had a feeding tube inserted through my side directly into my stomach. Because of the gallbladder ailment, the doctors fear that without it will survive another surgery, I had a drain inserted into my gallbladder through my skin. Because of chemotherapy drugs have virtually destroyed my blood vessels I had long line peripheral catheters inserted in my arms for the administration of antibiotics. I remember looking up one day at the IV tree and counting six different concoctions being pumped into me. My immune system had been so totally suppressed by the chemotherapy that it took that many drugs to keep me from succumbing to the normal bacteria that inhabit my body.
While Kaiser Permanente spent probably millions of dollars keeping me alive, that was their sole means of determining success. But I was still alive and sucking wind. It doesn't mean he didn't care. The individual doctors and nurses that I dealt with in the home care system Kaiser Permanente some of the most caring loving considerate and compassionate people I've ever met in my life. But that healthcare organization is not equipped to deal with the level of destruction that my body had suffered. If I had to do it over again, the only change I would make would be to decline the second round of chemotherapy. When I waffled on the issue back in 2006 the Dr. assured me it was quite possible I would relapse and die without it. Today I know there are things much worse than death. They're going to have to burn the woods and sift the ashes to find me and make me do chemotherapy again.
THE VA
When most people think of the VA they're talking about the administration portion. Like all bureaucracies is full of things that can be made more efficient. There is another part of the VA, the hospital system while you may find some people who want to complain about it, I am not one of them I have had nothing but top notch A-1 care at the San Diego VA regional medical center. From the very first day when the VA took over my home healthcare my life has begun a path back in the direction of living. My home healthcare Dr. on her very first visit to: my hand at my bedside and said "are you about ready to get back into life?"
My answer was a resounding "yes"
since that time showing over a year ago my progress has been miraculous, literally. Why am still not able to walk yet, there have been some very big changes in my life. More about that later.
as I stated the beginning of this all I wanted to was provide a place where people could come and get the answer to the question; how did you get crippled?
And now you know!
