Cancer...
Now there's a word that'll cause a wide array of responses.
How does it make you feel?
We all know someone who had Cancer. Some survived, some didn't.
Other words like carcinoma, melanoma, malignant and benign are associated. How about this one, Invasive Squamous Cell Carcinoma? That's my flavor. It's enough to make your head spin.
Then there's the treatments like chemotherapy and radiation. Testing via CT scan, PET scan, blood work and biopsy. Sores in the throat making swallowing and talking impossible, and requiring a feeding tube.
I detected a lump in my neck in May of 2024. Since then I've seen a regular GP Dr., an ENT, another ENT, as well as a medical and radiation Oncologists. Not to mention the many techs and nurses who run the tests. I've been sedated and had a biopsy in my throat. I've had a torture device mask made for radiation treatments that snaps down over your face and head to the bed holding you absolutely still. It's rather claustrophobic to say the least...
The above was written while I was in the throws of treatment. I'm now two years out from the completion of treatment and ready to spill the beans on what I experienced and felt along the way.
In the beginning, I noticed a lump on the left side of my neck. It was a little knot that stuck out. I let it go for a week or so then I had a routine checkup at the VA and pointed it out to my Dr. She put in a consult for a CT scan. They called me the next day and scheduled it for two weeks out.
I went to the ER the next day and they immediately got me in for a CT scan. My wife Anita and I sat in an ER bay for about three hours waiting on results. The Dr. finally came in and shared that it appeared to be Cancer. He went on to explain the suspected type but my mind heard nothing more after the word cancer came out. I was in some kind of purgatory just hovering in the room with no clear thoughts, sitting on my hands with the thousand yard stare into a blurry mist... The word cancer swirled endlessly in the air...
The Dr. handed me a copy of the report and we walked out. I didn't know what was next. I was silent for most of driving home still reeling internally from that word cancer. I'd lost my dad to pancreatic cancer and his brothers and father also died early from cancer and it had started to hit my oldest male cousins, eventually taking my eldest brother. I figured it was my turn to bear the genetic curse.
I found out I was being referred to Community Care, which is medical care outside of the VA. I wasn't contacted for a few days so I started calling the Community Care department and stressing that there was a need for urgency. I finally got scheduled for an ENT and he in turn referred me to the Oncologist. The ENT scoped my throat through my nose with a camera on the end of a wire. The image appeared on screen. My wife saw it, a hideous bumpy mass surrounded by healthy pinkish flesh. She said nothing. The ENT scheduled me for a biopsy. The results came back that it was Squamous Cell Carcinoma and with a blood test determined it had been caused by HPV. We learned this can lurk in your system much like shingles can suddenly rear it's ugly head. It was in stage one. An early detection meant more than I understood at the time.
We went to SCOA, South Carolina Oncology Associates, a one hour drive from home. The Oncologist ordered a PET scan and blood work. He explained that the treatment would involve chemotherapy and radiation. I thought it was odd that he exclaimed more than once, "you're young, strong and you've got great kidneys!" He also strongly recommended a feeding tube but it was my option. I was in my early sixties, didn't feel young and had no idea what my kidneys had to do with anything. I had been battling fatigue for the year prior. It frustrated my wife that my life was sedentary. I was not the energizer bunny she'd married but she now understood the cause. Anita made it clear that she'd be there at every appointment.
Again I urged the VA to move quickly on the feeding tube installation so I could get started on the cancer treatments. Everything seemed to take a week or two to get some action. I had to stay on the VA and keep urging them to take action. It was odd to have this tube with an attachable funnel coming out of my upper stomach area. I did my best to tape it down and hide it beneath my shirt.
The first thing SCOA performed was making a molded mesh mask that covered my head neck, chest and shoulders. It was very tight and quite claustrophobic. While laying there snapped down, unable to move, I learned to close my eyes, shallow my breathing and imagine I was playing golf on courses from may past. Making it to the end of a treatment and being unsnapped from the mask was truly the epitome of relief.
I was scheduled for thirty five radiation treatments which would pinpoint the cancerous mass and three triple dose chemotherapy treatments given once every three weeks to kill any radical cells trying to metastasize elsewhere in my body. Everybody I met and talked to that was undergoing chemo as well, had a single dose administered once a week. The nurse even commented she'd never seen a dose this big when hooking me up.
Initially it all seemed so easy. All the staff were incredibly kind and the nurses were good at finding a vein, I didn't get a port put in my chest as many do, my veins were very inviting and I didn't mind getting stabbed each time. You could relax in a reclining chair and have your water bottle and a snack on a table next to you, while playing with your phone and talking with your mate for about an hour or so. No major ill effects, still able to swallow and eat. But gradually the effects worsened and I realized I was in a battle.
I lost the ability to eat and started utilizing the feeding tube pouring chocolate Ensure drinks down the tube followed by a warm water rinse. No fun but easy enough. The nausea hit me and I couldn't even keep the Ensure or water down. Constantly feeling sick was the norm. The weight was shedding. I looked gaunt and my color was pale.
The toughest thing was having to go get more of what you knew was making you feel the worst you'd ever felt in your life. I grew sick and tired of being sick and tired. I wanted to die. I couldn't sleep much and rather than keep Anita up, I moved to the reclining couch. The one thing that brought relief, oxycodone, made me constipated. Just another discomfort. Two hours of sleep at a time, always a nearby bucket to puke in. Store-bought enemas and suppositories became a daily ritual. Such fun!
At some point I was given something like tramadol for the pain and it wasn't helping me sleep so I took another one and got one hour of sleep then took another one. I fell on the floor three times trying to get to the bathroom and back to the couch on Christmas eve. I wound up just laying there and trying to call out to Anita for help. I didn't have the strength to make enough noise so I just stayed there on the floor feeling defeated and sorry for myself. Eventually I was able to crawl back to the couch. It was the worst night of the whole process.
Anita drove me to and from nearly every appointment, only missing two due to medical obligations of her own. We had to be at SCOA by 8AM most days and made it home after noon on Chemo days and by10:30AM on radiation days, which were five days a week.
The treatments broke my body and mind down so bad that not wanting to endure anymore and wishing I was dead was the only thoughts that had relief as the goal. Anita encouraged me. I tried to barter with the Radiology Dr. to give me 25 treatments rather than 35. He said that 35 was the protocol. They almost delayed the final chemo treatment because my kidneys were damaged. I wanted to get it over with and they proceeded. I got up from that and rang the bell to celebrate completion. The next two weeks were the worst of all. I dropped 40 pounds. I had to go seven days a week for about a month, to get fluids to flush my kidneys.
Somewhere along the way I asked Anita to stop by the Toyota dealership. My car was 10 years old and had 200k miles. I was ready for an upgrade. Having been looking on the dealership website I was surprised to see there on the showroom floor, exactly what I wanted. I went round and round with the salesman and the manager, having to take numerous breaks to go puke and dry heave the nothingness from my gut. It took 6 hours and I couldn't sit through all the paperwork signing. Anita completed the process for me. It was the single best thing that I accomplished during this time.
It seems odd but in times like that, your relationship draws closer. I had been Anita's caregiver and the roles reversed. She still had her battles but she stepped up and filled the gap. I could see it taking a toll on her but she'd have it no other way. I really did want to die and she continued to encourage me when needed. I'm so thankful for her and it furthers my view that she is the best human I've ever known.
Eventually I was able to swallow and Egg Drop Soup became my every meal. A suggestion from Jon G's BBQ in Peachland, NC.
Two years out cancer and HPV free. I still see both ENT's and the Oncologist at six month intervals now. I'm finally shedding the fatigue all of it brought. I'm out walking and not living the pitiful sedentary life that had me in it's grasp. I needed to lose 15 pounds to get into my Marine Corps uniform for the upcoming 251st Ball in November. I'm down five with ten to go and very determined.
Life feels good. I find joy every day. I'm laughing again and Anita says there's a sparkle in my eyes. I have some lingering issues, like I don't salivate very well and that makes it hard to breakdown bread and nuts. My kidneys are shot to hell and back, operating at 32% of normal. My neck spasms and I have to rub them out on a daily basis. These are the new normal.
We were able to fly to Hawaii for our 20th year together and 18th anniversary where we renewed our vows. We made a couple trips to knock some stuff off our bucket lists. I recently played in a Veteran's benefit golf tournament and volunteered at a Veteran's retreat serving a meal, cleaning a cabin and working in the garden. I'm going to participate in a photography outing. I consume a lot of water and eat more vegetables. All in all I'm in a good place and I wish it'd last for ever. The bipolar pendulum swings and Anita and I just ride that wave through the light and dark days, together, always together and that's the best part of my life, that will never change.
