JET FUEL IN MY VEINS: My Experience with Cancer
I have written a lot about a wide variety of topics on which I have had personal experience;
catch-as-catch-can wrestling,
libertarian political theory, hypnotism,
rhetoric and epistemology... However, I have never written anything about my personal experience with overcoming cancer as a teenager, until now.
As trite as it may seem, I hadn't really wanted to write about my experience until watching the protagonist in the television show
Breaking Bad go through his radiation and chemotherapy treatments. The way the writers, actors, and director have presented the treatment has really resonated with me, so here I am typing about my experiences with cancer from two decades ago.
In 1989, I was 15 and a half years old when I was diagnosed with
Hodgkin's Lymphoma. Hodgkin's is a specific type of cancer that attacks the lymph nodes (your lymph system are part of your immune system and you have them throughout your body; in your neck, armpit, stomach, groin, behind your knees, etc.). Unluckily, this wasn't the first time I had faced a serious illness during childhood but I am not sure I can muster the will to write about the time that I nearly died of gangrene poisoning as the result of a botched appendectomy (I even had emergency surgery on the Fourth of July holiday, between third and fourth grade). That will have to wait for now...
Granted, treatments and surgical techniques have GREATLY improved since I experienced them in the late 90s. I am often amazed at the advances in treatment when I talk to other survivors who've had their surgeries or treatments years after mine. However, I am sure survivors who had treatment prior to my treatments in 1989/1990 that feel the same way when they'll read this.
DIAGNOSIS
Anyway, as best as I can recall it all seemed to start in February 1989. I was at rehearsal for a play,
The Taming of the Shrew. I was excited not only because it was my first play but also because I was the only sophomore that landed a speaking part (I was originally cast as Biondello but was later "promoted" to play Gremio). Understand that my parents had been divorced since I was 4 years old and at this time I was living with my father. So you can imagine my surprise when my mother, who lived all the way across town, showed up my rehearsal. Come to find out, my Dad suffered two massive heart attacks that day.
We didn't go to see him that night because he was in the ICU and the doctors wanted him to stabilize. So we made plans to visit him the very next day. However, when I woke up the next morning I had completely broken out with the chicken pox. This is important not only because the heartache it created because I wasn't allowed to see my father at the hospital due to the virus but because there may be
a common cause between Hodgkin's and Chicken Pox.
My father's condition got better and while having dinner with he and his girlfriend Sandy a month or two later, she noticed some swelling on one side of my neck. Now because I had been growing a lot and doing lots of activities (like martial arts, lifting weights, etc) neither my dad nor I had noticed the gradual swelling. Sandy, however, was acutely aware of such swelling since her daughter had also serendipitously survived Hodgkin's disease just a few years earlier!
She recommended that I see a doctor and have the swelling in my neck
biopsied. So in March of 1989 I had surgery on my neck to remove a lymph node so they could look at it under a microscope to make a diagnosis. I was awake for the procedure and it was a tad surreal. In fact, after they removed it they showed it to me as lied there on the table while they sewed me up. The severed lymph node looked like a white piece of cooked shrimp or cauliflower. I still have a massive scar on the left side of my neck that is hard to miss to this day from the operation.
The results came back positive for Hodgkin's. To determine the
staging however, they needed to do more surgery and biopsies. First they performed a bone marrow biopsy which was rather excruciating. All I remember was seeing the rather large, thick gauge steel needles before they ask me to lie face down on the bed so they could push one into each side of my hipbone to
suck out some bone marrow for testing. Fortunately, despite the pain, the results came back negative. So far so good!
Next up was major abdominal surgery where they'd remove lymph nodes as well as perform a splenectomy. The incision ran from my sternum to just below my belly button. Kindly they cut around the belly button, giving me a scar that looks like a giant upside down question mark. I remember waking up from the surgery in a panic in the recovery room because of the pain I felt everytime I breathed (it would stretch my abdomen at where the fresh stitches were).
I also remember how completely awful it was to have a catheter. It was so awful that the very first day after surgery I insisted that the nurses pull it out (
ouch) so I could get up to go urinate, to prove I didn't need one. It was a very poor decision, since anyone who has abdominal surgery knows, your digestive system sort of shuts down as a result and I had to have the catheter put back in again, this time
without the benefit of being anesthetized (
double ouch). (An interesting side-note, recovering in the room next to me was college football star
Sal Aunese. Sadly, Sal would only live a few more months before succumbing to stomach cancer.)
The results of all these secondary biopsies came back negative, so they diagnosed me with stage 1. I spent the rest of the summer recuperating, very relieved to learn of the high cure rate for stage 1 Hodgkin's lymphoma. Little did I realize then that the real battle, a
battle of attrition, was about to begin: radiation and chemotherapy.
RADIATION AND CHEMO
Between the radiation treatment and the chemotherapy, I found the radiation treatment to be worse and with long lasting (in some cases, permanent) side-effects. I went to nearly daily radiation treatments for 6 or 8 weeks (I can't remember which), which started out rather easy but were rather tough to handle by the end. First off, they gave me little tattoos so that they could precisely line up the radiation gun to ensure that only the affected areas were irradiated (they look like little freckles). Next they fitted me with a custom made mouth piece that I had to bite into to further guarantee proper alignment.
After putting a lead apron on my private parts, the technicians would then leave the room, power on the radiation machine for a few minutes, then turn it off and come back to let me go. The first ten days weren't that hard. The turning point happened while I was at a weekend family reunion in Breckenridge, Colorado. Now like a lot of boys in the late 80s/early nineties, I sported the awful hairstyle known as "
the mullet" (i.e., "business in the front, party in the back"). I spent the first day talking with my aunts, uncles, and cousins and having fun only to wake up the next morning to the "party" portion of my mullet falling out in clumps. It was bizarrely shocking and fascinating at the same time to just be able to painlessly pull out fistfuls of hair.
It wouldn't take long for the full-blown radiation sickness to kick in. Soon I was beseiged with fits of vomiting, I completely lost my appetite because everything I ate tasted like metal, and when I no longer had anything in my stomach to throw up, I continued to heave until I was throwing up bile (very nasty tasting stuff, trust me). By the end of the radiation treatment, the skin of my neck was black as is from a very very bad sunburn. I had wasted down from being 160lbs at 6' when treatment started to just 117lbs at my lowest point.
The only lasting side-effects from my childhood illness came from the radiation. I cannot grow hair on my head or neck between my ears and my collarbones (where I was shot with radiation) and I cannot grow muscle (the radiation caused muscle growth inhibition). Now my rather persistent and very stubborn nature meant
I would continue on with
wrestling and martial arts after I recovered (much to the chagrin of nearly ever doctor I've had since my treatment), but unfortunately it also lead to my serious neck injury and the stinger in my arm I've had since 1994.
Strangely enough, I don't remember the chemotherapy being as difficult even though treatment had a longer duration. First off, it wasn't daily. I only had to go in on Fridays for 6 months. Second, I never lost any hair from the chemo. Only the "mullet" area on the back of my head from radiation treatment (an area that still won't grow hair). I remember a few names in the chemo-cocktail I was given (
vinblastine,
bleomycin, and
vincristine).
One thing that really stood out though was when my oncologist told me that one of the ingredients could fuel a jet. While I am not sure what that was, that statement has lead me to believe it may have been
hydrazine sulfate that they pumped into me.
Now while I didn't suffer hair loss or extreme side-effect like I did from radiation, I did have severe intestinal ulcers that were so bad that I couldn't sleep (this is when I was first introduced to
hypnosis) and I did have very bad nausea. One strange
flashbulb type memory I have is sitting in the bathroom on Saturday mornings after treatment and having to strip naked to feel better while I say on the toilet, weird (apologies for the crude setting). As I'd sit there, I'd stare at the veins in my forearms; veins that were once bluish in color were now brown and dark, from taking the chemotherapy intravenously the afternoon before.
It was always sad when you'd grown accustomed to seeing someone in the waiting room as you both awaited treatment, grow sicker and weaker, then they are suddenly not there the next week when you go for chemo.You knew they had died and that you hadn't said goodbye. It did get tough toward the end of treatment, not only because of the nausea or intestinal ulcers, but my veins kept collapsing and scarring from the frequent blood draws and IVs. It made it more an more difficult for the nurses to access my veins. I remember sitting, toward the end of treatment, with my arm in an emptied plastic wastebasket full of hot water in an attempt to open up veins for the IV. Not fun.
Now keep in mind, prior to my illness I had been active in martial arts, theatre, etc. But with the cancer treatment kept me out of high school a lot as 1989 approached 1990. With extra-curricular activities cut, I was forced to focus on academics, which ended up landing me
academic and leadership scholarships (scholarships that I may not have otherwise received). Also, the ridicule, bullying, and taunting from the other high school kids were pretty rough at times, especially when I felt particularly weak or awful. However I do credit those experiences for helping develop
my thick skin and inoculating me against bullying, unwarranted ridicule, etc. today.
After treatments were finally complete, my dad got me a summer job as a plumber's apprentice with the Denver Public Schools. What this meant was a lot of digging ditches in the sun fixing sprinkler systems and lugging around heavy tools and equipment, but it was a good way to get my strength back.
Thank you, if you read this piece all the way through, I sincerely appreciate your indulging my post. I am not really exactly sure why I've felt the need to write this right now, other than watching Breaking Bad. Perhaps it will be cathartic and hopefully other cancer survivors and their families can take some sort of solace in reading it...
