In the last update I wrote, I was at the beginning of the end…hopefully. And now, with this update, I'm at the end…hopefully. Also I didn't edit very much, so please ignore any grammar or spelling mistakes.
I completed 6 rounds of chemotherapy and 33 rounds of radiation therapy. I don't know that I can give a linear account of the past couple of months as I did with my previous update, but I will share as much as possible.
I finished my final radiation treatment on November 4, which was almost 4 weeks ago. I was hoping to write updates during my treatments and then again soon after. Still, the whole experience has taken me this long to gather my thoughts and process the good, bad and ugly of the past few months. I'd like to say I was a champion, and it was a breeze, but I'd be lying. It was the most challenging experience of my life. It drained me mentally and physically. If you've been through it, you'll know what I'm talking about, but I think everyone's journey is a little different and personal to them. Here's mine.
This is a piece of cake, give me another piece of cake
Since my diagnosis, I started eating healthier, which caused me to start dropping pounds. It was nice, especially after the false TB diagnosis and treatment packed on the pounds earlier this year.
I made mention of my healthier diet and the subsequent weight loss to my radiologist and my oncologist, and both of them said, "STOP!" Both said, add weight, or at least don't lose weight as I'll need that for later in the treatments.
I'm not one to go against the doctor's orders, so I went home and had two large pieces of birthday cake. It was my partner's birthday, and she had three different cakes for her celebration. I guess I had two extra pieces of cake.
I started keeping a daily "cancer log" where I would log my treatments and anything interesting about how I felt mentally and physically. It was unremarkable. The chemo wasn't that bad, it was an annoyance, but nothing I couldn't handle and the radiation was 30 minutes out of my morning. I became so used to the mask and the noise of the TomoTherapy® machine, I actually fell asleep a couple of times while strapped to the table.
It all adds up
My oncologist was always there at the start of my weekly Chemotherapy sessions. She'd have a big smile, or at least I assumed there was a smile under her deep-sea diver's style breathing apparatus.
We're in a pandemic. A deadly disease is running rampant worldwide. The doctors in the cancer clinic took extra precautions as their patients all have a weakened immune system from cancer or cancer treatment. Hence the divers mask.
She would check-in, and I'd give a positive response, "I'm A-OK, this is a breeze." She would always remind me that the side effects of the treatment were cumulative. So they creep up on you. Little by little, you'll feel worse, and when you reach a tipping point where those side effects have decided to pull you into a dark alley and beat the living crap out of you.
The first side effect of the treatments I felt was [chemo-brain.] It refers to confusion, memory loss, mental fog and brain fatigue experienced by cancer patients. I just felt dumb. My brain wasn't working as quickly as it should.
I lost my quick-wit, and my math skills suffered anytime I was wearing socks.
It wasn't too bad. For a time, I laughed at old sitcoms like Wings, but it was foreshadowing what was to come.
[Chemo Mouth ]
As my cancer was in my tonsils, the Chemotherapy drug was [Cisplatin]. It's popular because it works on a wide variety of cancers. Essentially, it will attach itself to the cancer cells to make them more susceptible to radiation. Unfortunately, it attaches itself to the other fast-growing cells in your body, of which your mouth has a ton of them.
Taste bud changes
One of the first changes I noticed was my taste buds started to get messed up. The most pronounced change was everything tasted salty.
If you've taken a big gulp of seawater and the salty aftertaste that lingers in your mouth is what I had for the entire length of the treatments.
I'm not sure if it was from the saltiness or the platinum of the Cisplatin. Still, the metallic taste was amplified when I used metal utensils, so I couldn't taste the food. I'd only taste the metal of the fork or spoon. If you've ever sucked on a penny, it's like that but less enjoyable.
Food became less enjoyable with the taste bud changes, and the selection of what I could put in my mouth without it being revolting was limited.
I enjoyed bitter, pickles, mustard, olives and anything else a pregnant woman might crave was A-ok with me.
Of all the food changes, dairy was the worst. I don't drink milk. I use soy milk for my cereal, cooking, and other places where milk is commonly used. Still, I was told I needed to maintain my weight. Eating would soon become more complicated and not just because of tastebud changes.
I was told to drink milkshakes and eat ice cream to maximize my caloric intake. In actual monkey's paw fashion, I was given permission to overindulge in all the ice cream I could handle, but the chemotherapy drug had damaged my taste buds in such a way that when I licked the ice cream, I couldn't taste the sweetness. It was like licking a frozen stick of butter.
I tried, but the expectation of ice cream and the reality of frozen butter was too extreme of a difference, and I couldn't. Even now, I don't know that I would try ice cream. The PTSD is still too real.
OK this sucks
At the start of October, all the doctor talk of cumulative side effects was coming to fruition. The salty mouth and the butter-flavoured ice cream were just annoyances. The real monster of this show was the [mouth sores]. I read about them, I knew they were a likelihood, but no amount of reading prepared me for the actuality of what they were.
I developed ulcers on the left side of my tongue and the top and bottom of my throat.
The ulcer on the left side of my tongue could be avoided when I chewed. The ulcers at the back of my throat stood like a bully ready to take my lunch money. There was no way to avoid crossing its pass, be it whether I was eating drinking.
I knew the sores were getting worse, but I tried to ignore them. My birthday fell on Canadian Thanksgiving weekend. I wanted to have one last good meal before the mouth sores made it impossible.
I cooked rib-eye steaks, and my partner made some excellent pumpkin soup to start. We sat at the table, and I took in a mouthful of soup. I guess there was a bacon bit in the soup that pinballed itself from my tongue to the top, then the bottom of my throat.
The pain was likely akin to an exposed nerve in from a cavity or some other tooth pain. It was quick and felt like a sharp jolt of electricity. As an added bonus, that jolt of electricity would shoot from my mouth to my left eardrum. It felt like someone took a railroad spike and kicked it in my ear hole as hard as they could.
It was my last attempt at solid food for over a month.
With solids out, I would need to psyche myself up to drink water. There was no avoiding the bully. I would need to cross its path with every swallow.
Psychologically, I knew the pain that would come with every swallow. My throat would tense up. My body would scream, "What the hell are you doing, don't go down there. That's where the bully lives," and my throat would tighten.
The closest description I can give would be swallowing water had become akin to drinking a handful of sand. It felt like it was scraping all the way down my throat.
As much as we need water to live, the pain from the ulcers made me weigh my options.
The more pain I was in, the less I would drink. I was told to drink meal replacement shakes like Ensure to consume enough calories, but I would take a sip and exaggerate how much I finished.
My partner Irish was a nurse, so she kept an eye on me as best she could, but as I found out later, she would go into the bathroom and cry. As much as I was hiding how little water I was taking in, she hid her genuine concern and fear for my well-being.
I've lost track of days at this point, so I know it's in October, but I couldn't tell you much more exact than that.
The doctors were concerned with my lack of nourishment. A feeding tube was considered, and by this point, I had dropped all objections. But that's when the doctors told me because I was receiving radiation treatment to my head and throat, the only way to safely insert a feeding tube was straight through the gut to the stomach.
That snapped me awake. I convinced the doctors to insert a new IV hook-up after my chemotherapy treatment. With the IV hook-up in place, Irish could keep feeding me bags of IV fluids when I was at home.
The plan was working. I was getting all my fluids from the IV. Irish would unhook me in the morning to go to the hospital to receive my radiation treatments.
That lasted about 3 days. My body was already so dehydrated, and combined with the chemotherapy drug in my body, my veins were shrinking.
If I made a rough estimate, I would guess that I was fitted for an IV in my hands about 20-30 times. Each time, the vein in my hand would quit, meaning I would need to use a new vein each time an IV plug was inserted.
The nurses switched from my left hand to my right hand to my forearms and then the crook in my arms, but weekly blood tests have also left those veins unusable.
We gave up on the home IV hook-up. I was left gritting my teeth and drinking water the old-fashioned way. Or at least that was the best intention, but I couldn't.
After a couple of days of drinking less than 500ml of water each day, Irish suggested we go to the hospital. I didn't protest.
We headed to the Makati Medical ER, where my oncologist made arrangements to get checked in. As we're still in the middle of a pandemic, the hospital was short on rooms. They put me in an isolated examination room just off the ER.
The room was about the size of a large bathroom with an exam table and a toilet. The ER nurses did their best to find a working vein, but they had to call in a specialist. A nurse from the cancer centre came down to help. She's like a vein whisperer as she found one of the few remaining veins in my hand that was capable of taking an IV hook-up.
I was in the ER exam room for about 24hrs before they found me a more permanent hospital bed.
My radiologist and oncologist both visited. I was pleading with them to let me give up, "I'm sure the cancer is gone, I'm done, let cancer do what it needs to do, I can't handle this anymore."
While I was pleading my case, I was reminded of my last chemotherapy treatment. The cancer centre was fully booked in the adult private rooms, so I had to receive treatment in the pediatric cancer ward.
Clowns, balloons and giraffes painted on the wall weren't exactly soothing, but at that moment, I realized, "crap, this is for the children that go through this hell."
Then I thought about the news stories and charity videos talking about children going through cancer treatments.
"Ugh, I'm being a whiny baby. If these children can push through this shite, what the fuck is wrong with me."
I quit pleading and listened to the plan from my doctors. Essentially, I was in the hospital until I could drink three bottles of Ensure (234ml) and drink 1.5L of water each day.
This time I had a little helper called Magic Mouthwash. It's a mixture of Maalox and lidocaine. The idea is that the lidocaine would numb my mouth and throat, and the Maalox would make a smooth path for whatever I was swallowing.
I will spare the details, but I was less than honest about my intake. The magic mouthwash gave me about 5-7 minutes of relief when I could get down water, beef broth and a bit of Ensure.
The IV fluids did their job, and after about 4 days, I was strong enough to go home with the plan of finishing my final 6 treatments starting on the coming Monday.
The final stretch
On Monday, I left my home and started the walk to the hospital. I set a goal for myself to stay strong enough to make the 1km walk to the hospital each morning. I wouldn't let an ER visit and an unplanned stay at said hospital stop me from the goal.
I made it to the plaza just outside the hospital, but I needed to grab water and sit outside a Starbucks for about 10 mins to catch my breath. I was still a little weak, but I was so close to the hospital.
I continued my journey. I made it to the radiology department but stopped for a pee in the restroom just outside radiology.
As I stood at the urinal, I looked at the stream and thought, "It's lighter than before. I must be hydrated…." I looked up at my reflection in the fixtures, then I looked at the ceiling, and the next thing I remember was waking up on the restroom floor with my pants around my knees covered in piss.
I was still groggy, but I knew well enough what happened and called out for help, but it's a private restroom, so there was no one to hear me. I caught my breath, pulled my pants up until I was decent, and made my way to radiology.
My fall was an awkward one as I sprained my knee and ankle. After years of martial arts, I knew what was wrong but tearing an ACL from fainting while taking a piss is a lot less glamorous than tearing an ACL while fighting out of a kneebar.
The nurse came to check my vitals as usual, and I explained how I just feinted taking a pee. I'm surprised the urine on my pants wasn't a giveaway. She called the doctor, who called the ER nurses and soon enough, I was loaded in a wheelchair off to the ER department again.
Unlike the week before, this was unplanned. I got the complete ER treatment, EKGs, chest x-rays and more ER nurses struggling to find a vein for an IV hook-up.
Every nurse was confident in their abilities to find a vein, but each one failed. Jab after jab after jab, I was in tears begging them to stop, "I have no more veins, please use my legs, I have no more veins."
The nurses weren't listening; they were in life-saving mode. My only reprieve from the ER butchers was a code blue. A man was wheeled into the ER bed next to me who was in far more dire condition. All the nurses intent on finding the remaining vein all turned their attention to the man next to me.
I did my best not to look, but he was a large man, missing his legs below his knees. I'm not a doctor, but I assumed it was diabetes. He wasn't there for diabetes this time. The nurses and ER doctors were all surrounding him, plugging him with IV and attaching monitors. Beep, Beep, Beeeeeeeee.
He was going into cardiac arrest. The doctors started chest compressions, pump, pump, pump, charging, ready, clear, ba-bump, and clear, ba-bump.
The doctors pulled a sheet over the man. The rest of the patients all knew he was gone. We did our best to avoid eye contact with each other. We knew whatever we were dealing what at that moment, our prognosis was more positive than what we had just witnessed.
The nurses brought me an apple juice, and the sugar boost was enough to give the doctors confidence enough, I could leave the ER.
I was sent home for a few days to get my strength once again.
Thankfully I was able to get back to finish my treatments a few days later without incident.
It's taken me a few weeks to really process everything. Much of it is still a blur. It took me until two weeks ago to slowly get back on solid foods. I still can't eat everything I want. Scratch that, I can eat everything I want, but after more than a month of no solid food, I don't want to eat a lot.
It was a good thing I added extra weight before the mouth sores really appeared. During my non-eating period, I lost close to 35lbs. It would have been wonderful if it was all fat, but I lost fat and muscle, lots of muscle.
I'm gaining some back, but I'm keeping an eye on things as I want to take this opportunity to stay at a much healthier weight than I was before.
One thing that really came into focus for me was for years, I'd hear people, the same folks who are anti-vax now, talk about how chemotherapy "Was worse than the disease."
After going through the trauma of chemotherapy, I understood how someone could have a knee-jerk reaction and come to that conclusion. In reality, cancer is a fucking horrible disease. The treatment for that disease needs to be just as aggressive to stamp it out. No matter how brutal chemotherapy is, the disease is much worse if left untreated.
At the moment, I don't know if I'm cancer-free. I'm assuming I am. The doctors were very positive and felt we got everything but the only way we'll know is if we give it some time, I get my strength back, and we do another PET scan.
If the scan comes back clean, I'm good, and I just need to do regular follow-ups to make sure it doesn't come back. If it's not clean, we buckle up for another round, but if that's the case, I won't be going in blind. I'll be better prepared for what's to come.
That said, if you're a praying person or good at sending positive vibes, please, I'll take everything you can spare.