NOTE: Video is at bottom, skip there if you wish
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Today, May 4, 2024, marks several notable dates for me.
Today is, of course, Star Wars Day, “May the Fourth be with you”. Read that out loud. Now recall the Star Wars trope quote “May the Force Be with you.’. That may have required some explaining to the Sith out there, whose day is May 6, aka “The Revenge of the Sixth”.
May 4 is also the anniversary of the death of my late father on May 4, 2015. That is one of the pivotal key dates of my life, and those of you who recall what I went through back then and since will understand why Dad’s passing was so traumatic. I still have much unresolved grief over his passing. I have written extensively about Dad and his passing and will do so again someday.
But there is another May 4 that overwhelms all as it not only left psychological trauma, but physical trauma as well.
.
.
May 4, 1994,
thirty years ago today,
was the date I had the mutilating surgery that saved my life from colon cancer and the date my life changed drastically forever.
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On that grim date, I had a surgical procedure called a permanent colostomy. My rectum was removed and my large intestine was redirected to a new hole in my belly. The medical term for this extra hole is a “stoma”. For the last thirty years, I have had to glue a plastic bag to my belly to collect feces. I have no control over when the flows will occur and multiple times over the years I’ve had some embarrassing incidents.
The surgery took place only a few weeks after my mother had died of lung cancer. I had been with her almost every day for the last 8 months of her life. I kept an audio recorder with me and recorded her telling me stories about her life for me to write her life story. I still need to digitize those aging cassettes and transcribe them to write her life’s story.
When I asked Mom what I should title her life story, she said “The Little Train That Could”, because as a child, when she was often abandoned by her terrible parents, she would repeat to herself the mantra of the little storybook train climbing the mountain, “I think i can, I think I can, I think I can!”
After mom died, I had a lot of mental trauma that I had the opportunity to resolve before I was diagnosed with colon cancer several weeks after her funeral. I never had that chance to begin to get over my mother’s death when I was facing my own death.
I had been an engineering student at Cal Poly University in San Luis Obispo as my mother's health declined. Since I knew the type of cancer my mother had, I decided to enroll in a class called “Biology of Cancer”, which was a pre-med elective class for future doctors. In that course, we studied a large number of different cancers, including my mother’s specific cancer, and large-cell lung cancer. It was from this course that I learned how serious my mother’s condition was, and how little time she had left.
I also learned about my then-undiagnosed colon cancer in that cancer class. I learned that the then five-year survival rate of patients with my type of colon cancer was only 10%, or to put it another way, there was a 90% chance I’d be dead within five years.
When I tried to tell others about Mom’s limited time, I was not believed because my family was hugely dysfunctional. When I’d say “Mom doesn’t have much time left”, the reply was “You mean you don’t want her to have much time left”, as though pointing out the facts of her condition meant that I wanted Mom to die, or that by speaking truth I was causing that badness to happen.
If not for the internet, I would have been completely isolated. I had begun posting frequently in the early 90s on USEnet newsgroups at Cal Poly University, first about life, philosophy, religion, and more, and then when Mom got cancer, people I knew kept asking about how she was doing, so I started regularly posting updates and many people became aware of Mom’s status right up to the morning she died.
Mom tended to be a night owl and was often awake at night when everyone else was asleep. Knowing that there would soon be no more last chances for last chances, I stayed up with her almost every night and slept in the day. This got me criticized as lazy for sleeping all day, ignoring I’d been up all night. I slept as little as possible because I did not want to be asleep at the end, yet, I was asleep at the end.
At about 9 am on March 11, 1994, I was asleep in bed, having only falling asleep a couple of hours earlier after spending the night up with Mom. Suddenly the bedroom door flew open and my brother said something like, “there’s something happening with Mom”. I jumped out of bed and ran to my parent’s bedroom. My sister was with my mother on her bed and screaming over and over “SHE’S NOT BREATHING”.
I called the hospice and they sent someone out to collect the body. Everyone else left the bedroom and the house. I stayed with Mom until the undertaker took her away.
When I was diagnosed with cancer a few weeks after Mom died, I posted in the same USEnet newsgroups the news I had cancer, and I was met with disbelief. “NO, you don’t have cancer” was one response. “ARE YOU JOKING”, was another response. I had to double and triple down that I did indeed have cancer and this wasn’t some con to continue my Mother’s cancer crisis to my own.
On top of that, those around me were mostly in denial about my condition, and I was treated as though somehow I was pulling a con despite the surgeon preparing for my surgery.
The day I went in for surgery, I’d posted on USEenet about the surgery, and many people from Cal Poly were following my progress. I someone from Cal Poly had called to find out how i did and had posted my survival through surgery online.
I recall waking up after surgery. I was on a table being wheeled through the hospital hallway. It had been a complex nine-hour procedure. I started thrashing involuntarily so much that there were nurses holding down my arms and legs as I bounced around. They told me to relax but my body took over from my mind and was unresponsive to my will. I then heard the words that changed my life as my surgeon said to my ear, “I had to give you a permanent colostomy”. There had been some small hope he would only have to take out a small chunk of the tumorous intestine, but the placement of the tumor did not allow that option.
It was a very nearly too late situation. The tumor was only millimeters from my hipbone, and it wasn’t certain it had not spread to my bones. I had been having symptoms of the cancer, namely blood-soaked underwear, but I was not going to address the situation until after Mom died. If she’d lived just another month or so, my cancer likely would have spread and I would not be here.
In fact, I’d been having bleeding symptoms for about a year prior. I’d gone to a doctor who told me that the bleeding was hemorrhoids. When I asked him if it could be cancer, he looked at me like I was a paranoid idiot and said in a demeaning voice, “People your age just don’t get colon cancer”. I was 33 at the time. I sometimes wonder if I should try to look him up and tell him how wrong he was and how severely he ruined my life. If I’d been diagnosed a year earlier, perhaps I might have avoided the colonoscopy.
A side effect of the surgery has been multiple hernias that developed over time causing my guts to bulge out making my belly appear much larger than someone intact of my height and weight would appear. It makes it dangerous for me to lift more than about 20 pounds or I’ll tear them open even more.
I spent much of the next few years preparing to die.
As the odds were 90% I’d be dead within five years, the first few years were spent wondering. Everything I did in the years after surgery was aimed at leaving a legacy or living my remaining days as well as I could. Every new lump or pain made me wonder if it was a sign of the impending end. I wrote as much of my life story at that point and made a collection of my writings as of then as well. However, if I’d died then, I have no doubt my family would not have preserved it, and indeed likely would have actively destroyed it.
A few months after my surgery, I joined a cancer support group. There I met another colon cancer patient who had the same colon cancer as me, located in about the same place, with the same surgery, but different chemotherapy. His cancer and surgery had been about five years previously, and he spent several years hoping he’d be ok, but alas his cancer returned and when I knew him, he was in the final stages. He knew he did not have much time left. He told me, “People like you are going to live because people like me died”. He meant that by his experience, doctors would learn what didn’t work and use that knowledge to save others. He died a few months later. It is one of the great regrets of my life that I did not write down his name.
About year four, I was still alive, and it was only then that I dared to consider that maybe I’d survive.
I’ve had some people in my life over the years claim that because I did not die decades ago, I was never in any danger. I've been accused of exaggerating the danger and what I've been through over the years as some kind of long-term con for some vague and unspecified sinister reasons. I’ve also been accused of being a hypochondriac, in spite of the mutilation I’ve undergone.
A few weeks after my surgery, while my surgical wounds were still weeping red blood and yellow pus, and I could barely stand, one of my family SCREAMED at me to “QUIT FAKING IT AND GET A JOB”.
My colostomy has been a constant, hidden, presence in my life.
To others, I appear to be mostly normal, but under my clothing, I’m mutilated.
Every so often I start to feel normal, but then I fill the pouch and I’m reminded that I’m not normal.
One factor the colostomy has affected has been my dating life. There were several times when a relationship got to the stage where I needed to reveal I had a colostomy. Somehow always the relationships faded at that point. Sometimes they would just ghost me, but sometimes they would be blunt. One woman was particularly blunt when she said “Intelligent women only date healthy men.” It’s probably a good thing she departed my life.
I have survived, obviously, or you would not be reading this or have any idea who I am. I bring it down to the fact that if there was a good time to get colon cancer, 1994 was it. The statistics of 90% mortality over five years were correct, but they were correct for the old techniques and chemotherapy drugs. I got then-new chemotherapy drugs, plus I was fortunate to have a very good surgeon who took his time to get set up to handle my then 400 pounds. Even so, there was a distinct possibility, due to my large size, that I’d die during surgery or soon afterward. I went into the hospital having printed out my journals, my then-autobiography, and my writings and giving them to my father, who I learned later quickly lost them because he saw zero value in them.
Now thirty years on, it’s hard to remember when I was intact. Being alert for an unexpected fecal flow is a constant background buzz. I have to take great care to make sure the “appliance” is secure and not leaking gas is vital, and sometimes the pouches do leak and the smell can be embarrassing as I pretend nothing is wrong as people around are sniffing and glancing at me, probably thinking I’m farting. Thankfully by now, I’m pretty knowledgable about how to keep my appliance leaktight, but sometimes feces occurs.
I’m writing this down is as a part of an ongoing project to write my life’s story. I’ll be posting a lot more soon.
I’m at a point where I hope I will celebrate my 101's birthday alive and mentally intact, but I could be taken by the universe any moment.
Life can change in a moment.
I could go on but that will do for now. Expansion will come later.
Please feel free to ask questions or clarification. Your feedback will help me expand upon this for the ultimate writing of my autobiography.
If you read through all that, thank you.
#jtg
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HERE IS THE PROMISED VIDEO