Tuesday, March 15, 2016

One More Time

On April 7 it will be 10 years of survival

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 I may be having heart trouble. Shortness 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 time it was not the help desk calling, it was a doctor at the emergency room at Kaiser Permanente. After confirming that 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, they admitted me to the hospital and told me that the oncologists would be in to see me soon. The blood tests 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.

A week later, 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 less than 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 only 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 itself. 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."


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 this 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 a short four hour visit but I was told I must wear a surgical mask, have no physical contact with anyone and I must return to my hospital room before 6 PM. When they finally released 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 on my 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 cleared by the doctors to return to work as he 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).

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 I get a fever above 101.6°, return emergency room immediately." The side effects of this drug were very unpleasant and rather gross, so I'll skip those details to myself. But almost one week after the infusion pump was removed my temperature was measured at 101.7°, and I was taken to the hospital by ambulance. I have no memory of that ride as I quickly slipped into a coma.

What happened next, is from things that witnesses told me. I have no recollection as I went almost immediately into a coma. A condition that lasted the better part of a month. I was kept alive by a ventilator, 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 my blood actually turned 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 and 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 called my family to warn them, that if they wanted to see me alive they needed to come immediately. 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 even touch my skin. The weight of the sheets laying on me caused intense flashes of white-hot pain to shoot all over my body. For some reason, because I did not yet know that I was paralyzed, the medical staff came in and turned me on my side every two hours. I'm quite positive that the string of profanities and curses I hurled at them in response to the pain they caused, still echoes in the halls of the hospital, lo these 10 years later.

As I just told you I did not understand that I was paralyzed. I knew I could not move. But I thought it was due to some form of physical restraints having been applied to keep me from getting up and walking out the door (something I threatened to do on an hourly basis). Because of my paralysis I was placed on a specialized bed that was able to mechanically rotate and tilt to relieve pressure, it felt like I was sleeping aboard a ship, something I had done for 17 years of my life in the navy. The pain drugs caused hallucinations, so in my mind I pictured 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.

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. But 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. Scroll back and find it.
The Kaiser Permanente physician who attended me at that 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. I was unable to move or to use a call button so the only method I had for contacting the staff was my voice.  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. When I became aware that my insurance would cover home healthcare, I immediately moved home on a hospital bed with doctors and nurses coming to visit me on a regular basis sometimes almost daily. I stayed there in that bed in my livingroom for 5 years.


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 coma. Being pumped full of antibiotics and painkillers, I was asked to submit to exploratory surgery of my abdomen. The surgeon was a practical man and he 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 that the interior lining of my large intestine had been eaten away by a bacterial infection. And so, 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 had miraculously healed enough that only the toes needed to be removed. Shortly thereafter I experienced another setback in the form of pancreatitis and some sort of gallbladder ailment. Both of these conditions mounted new levels of pain that 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 who feared that I wouldn't survive another surgery, choose to insert a drain tube into my gallbladder through my right side just below my ribs. Because the chemotherapy drugs had virtually destroyed my blood vessels I had long line peripheral catheters, along with sub-clavien catheters inserted 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 several millions of dollars keeping me alive, their sole means of determining success was based on the fact, that I was still alive and sucking wind. It doesn't mean they didn't care. The individual doctors and nurses that I dealt with in the home care system from Kaiser Permanente are 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, because that's when the real trouble started. When I waffled on the issue back in 2006 the head oncologist 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.

When most people think of the VA they're talking about the administration portion. Like all bureaucracies, it is full of things that can be made more efficient. There is another part of the VA, the hospital system that I deal with on an almost daily basis. And 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 on 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, approximately 5 years has passed and my progress has been miraculous, literally. I attend Occupational Therapy and Dialysis 3 times per week at the VA. I have recovered full  range of motion in all four limbs. And thanks to the mental health group I'm  still one very charming guy.
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!