A few years ago, in (March of 2001?) I was diagnosed with esophageal cancer, and from that point on, as you might imagine, my life changed dramatically. Actually, my life prior to diagnosis is kind of irrelevant now. The treatment for the cancer and the complications I was to experience following the final stage of treatment,(surgery to remove my esophagus) have resulted in my becoming a completely different human being. My memory is quite faulty, (the result brain damage incurred during two cardiac arrests and oxygen deprivation during other complications) so I will write this with the help of my friends and family.
A (not so) brief history:
200? - After an ugly divorce (thankfully, most of that got wiped from my memory) I moved from Fredericksburg, Virginia to Jackson, Missouri to begin a new job. I had been unable to find suitable employment in my field (the music industry) in Fredericksburg and having had been diagnosed with severe coronary artery disease a few years earlier, I needed a job with the benefit of health insurance that this new job provided. After working in my new job as a regional sales manager for a musical accessory manufacturer for about a month, I began to have difficulty swallowing. Having only been employed for about thirty days, my company health insurance was not yet in force. I waited and hoped my swallowing difficulties would "go away". Soon, I began to realize the difficulty swallowing was only getting worse, and had gotten to the point that I had difficulty swallowing even soft foods. I decided to seek medical attention, even without the benefit of health insurance. I'm sure the doctor knew immediately what was going on. He sent me to get an immediate CAT or PET or MRI (as I said, my memory is pretty unreliable, it could have been a BMW for all I know). At any rate, the doctor spoke to me (I don't remember if it was immediately after the examination or not) and told me that I had a cancerous tumor about the size of an orange on my esophagus. I do remember thinking "This is probably the big moment in my life, the moment I'll always remember... however long "always" turns out to be". I guess I was right.
I don't remember too much that occurred soon after that. I was in a daze, I suppose. I do remember that I found out my insurance coverage wouldn't begin until I had been employed 90 days, effectively postponing any treatment for about 2 months. This, for someone in a life or death situation as I perceived mine, was .... frustrating. I remember that I did extensive research on the Internet and found only very discouraging information regarding esophageal cancer in my stage of progression. As I recall, a 98% fatality rate within the first 5 years after diagnosis was indicated. A 2% chance....lousy.... I hated that..... even more than 2% milk! (And I really hated 2% milk) I was pretty much devastated.
I continued to work (bless them, VTG, the company that employed me, did not fire me) and I worried constantly. Almost everyone there was aware of my situation and extremely supportive. My immediate supervisor really cut me some slack and my co-workers picked up whatever work I couldn't complete. My boss had experienced the death of a close friend from esophageal cancer a few years earlier and told me "They've come a long way in the last few years".... I was sure they had, but was it enough? Not from what I was reading.
I began eating fresh fruits and vegetables (I couldn't swallow much though) and drinking green tea. This, of course, was like closing the barn door after the horses had been soaked in kerosene, set afire, and were completely engulfed in flames.... or something. I quickly became a fairly well educated person with regard to esophageal cancer. I don't remember any of it now.... and time eventually passed.
The musician friends that I had made locally and my friends at work, all helped my as much as they could. The musicians put on a wonderful benefit concert for me, to help with the medical expenses. Even though I had been a professional musician for over 30 years, I did not play that night. After having played dozens of benefits for the sick over the years, it was quite odd to be attending one for me. It was beautiful.
By the time my insurance became effective, I had researched esophageal cancer to death (pun intended). I had found that just up the street (about an hour), St Louis had a world class facility for the treatment of esophageal cancer and thoracic surgery, Barnes Jewish Hospital.... Thoracic Park, we jokingly called it. I don't remember how I was able to get in, but I started making the trip there several (?) times a week for radiation therapy. Two of my younger sisters, Emily and Kathy (Kay Tee), came and stayed with me during this time. They left their children and husbands and traveled halfway across the United States, staying for weeks at a time, to help their big brother. My parents came too, but I don't remember exactly when. They all made sure I was never alone, as I recall. I will never be able to repay them. I truly believe that their presence and actions as my advocates while I was in a coma (I'll explain later) had as much to do with saving my life as any of my wonderful doctors. I owe them everything.
I was unable to drive myself after a few treatments. I was getting weaker and losing weight. I developed thrush, a very painful mouth condition that sometimes accompanies radiation treatment. I was unable to work. I was weak, very weak. At some point I remember an ambulance coming to my apartment for me. I don't remember why. I remember wearing a face mask to reduce exposure to germs when I went out, which was rarely. I remember sleeping in the living room of my apartment, with the television always on, while my sisters slept in the bedroom. I remember we put two (I think, maybe three) twin beds in the bedroom. I had tattoos placed on my chest to aid in the placement of the radiological treatment, but I don't remember getting them. I remember it was winter, bitter cold, and we sometimes traveled in horrendous snowstorms to get to and from my radiation treatments. I remember that I was amazed at how bad the radiation was making me feel, but also amazed that I still wanted to fight. I had never been a particularly strong person before. Then, it all stopped.
The radiation treatments ended and I was allowed to rest and recuperate (I think for a few weeks) to prepare for the next hurdle... chemotherapy. I was admitted to Barnes Jewish Hospital as an inpatient for the duration of my chemo. In my case, Cisplatinuim, an evidently extremely nasty and powerful concoction, was administered via a continuous IV drip. I remember that one night, while tossing and turning, my IV line came out and my Cisplatinuim leaked out into a puddle on the floor. The people who cleaned it up looked like a HAZMAT Team. Complete body suits and head coverings. I knew I was getting some powerful stuff. Deadly stuff.
I don't remember how long I was there, how much was administered, or many other details. I do remember that I became both utterly exhausted and at the same time, afraid to sleep, fearing I would not re-awaken. I don't know if I was actually near death, but I was convinced at the time that I was very, very near.
I had tried praying before, especially since my diagnosis, (surprise surprise) but before I had prayed for some miracle, some "cure" that would make me whole again. Now I just asked God to do with me what He would. In my conversations with Him, I didn't ask to live or die, and I knew I had absolutely no control over that. I only asked that His will be done, and thanked Him over and over for the incredible, wonderful life I had lived. I also knew that, based on this "wonderful" life, I probably deserved much worse treatment than I was being given. When I knew I was going to die soon, my thoughts were not of determined fighting, not anger about my unjust disease, I never asked "Why me?" or even thought about going to heaven or hell, only about missed opportunities and mistakes I had made which were sometimes downright spectacular. I'm pretty sure that regret is the last earthly thing I'll feel someday. I don't look forward to it. But I'm not afraid. At least not right now.
Around this time, everything in my memory disappears. I don't remember finishing chemotherapy. I guess I went home to recuperate again... I just don't remember. (This will be filled in later, when my sisters and their memories are here)
All I know, is that I went into surgery and had a 10 or 12 hour surgery (I think) to remove my esophagus. I am told that the next day I remarked that I felt good. That I said that this surgery was not as bad as my appendectomy, which had been performed many years earlier during exploratory surgery.
As briefly as possible, about 10 years earlier I had gone to the emergency room suffering from severe abdominal pain. I told the doctor that I'd had the same symptoms before, been diagnosed with appendicitis, and while waiting for surgery, suddenly gotten miraculously well! I told him that the doctors sent me home at that time, and I assumed they had misdiagnosed me. I told him that even prior to that I had been to the emergency room with abdominal pain that disappeared before I could see a doctor. So I had a history of mystery. The Doctor in this case said "I don't care what "they" told you. I say you have appendicitis, and I say you are going to see a surgeon right now." He was convincing. I saw the surgeon immediately. The surgeon examined me and said, "I want to do exploratory surgery and find out whats wrong. While I'm in there I'll take out your appendix" I was so sick of the recurring abdominal pains that I said "Do whatever you think is best".
Anyway, .... He went in (about 6 inch long cut) and found my appendix hiding behind my colon and pointing upward instead of in front of my colon pointing downward. It had already ruptured, but it's unique position had caused the .... poisonous.... appendix juice? ....to be contained in one small area instead of spilling into my system and killing me. He said it had ruptured and healed at least once before, hence my prior diagnosis had been correct. He said it was very unusual but not unheard of. He also told me he had to cut through a lot more fat than he thought he would. I said "Thanks for telling me I'm a strange, fat guy" I started to say "You ain't no prize either" but I remembered he hadn't billed me yet.
Now, back to our story
They had removed my esophagus and some adjacent lymph nodes, and I have no memory of this time whatsoever. I am told that I was up and walking in a few days, and that I one day began to complain about shortness of breath. Oh oh. I'm sure I didn't know it at the time, but THAT was the beginning of the REAL challenge. That was ARDS. Acute Respiratory Distress Syndrome. Some REALLY nasty shit.
To be continued........
