Back in February, I wasn’t feeling so hot. Then one night, my lymph nodes on the left side of my neck blew up. I waited a week for them to go down, thinking it was just a virus or flu of some sort.
But a week later, I went to the walk-in clinic to get them checked out. The doctor figured it was just an infection. We did a round of heavy antibiotics, but after ten days, there was no change.
Then my mind started racing, and lymph nodes swelling has me thinking of Hodgkin’s lymphoma, but unlike most people who use doctor google, I do my best to eliminate the scariest options.
I know people, my partner included, who go straight to the worst results. “There’s a bump on my big toe, OMG it must be toe cancer. We need to amputate immediately.”
In 2012, I woke up with sweats and pains in my jaw. A stiff neck and I took to Dr. Google to try to eliminate every possibility until I realized, “Shite, I’m having a heart issue. I need to get to the hospital.”
Thank goodness it wasn’t a heart attack. It was a result of stress which mimicked a heart attack. Still, it meant a week in the hospital and all the fun that goes with it.
After the antibiotics did not affect the lymph nodes the doctor recommended an ultrasound which showed the extent of the swelling. It wasn’t a determinant factor, but it gave us more clues about what was going on.
The next step was a fine needle biopsy in his office. He sticks a giant needle into the lump in hopes of pulling out tumour tissue to be sent to a lab for further investigations.
The needle went in deep, and when the doctor extracted it, the syringe didn’t get any blood or flesh. It was all pus.
Which by his account was a good sign, or at least didn’t indicate something much worse. We did another round of antibiotics and sent the samples to the lab.
What in the Scrofula is going on here?
In the Philippines, Tuberculosis is still quite common, and there is a variation of the disease that resides in the neck called Scrofula. The lab said they found TB bacteria in the sample. Tuberculosis is a dangerous disease, especially if it gets into your lungs, where it leaves serious scars and generally makes breathing challenging.
I immediately went on heavy antibiotics, which were 5 daily horse pills, and the treatment calls for those pills to be taken every day for six months.
The side effects are itchy skin, skin rashes, bruising or yellow skin.
Upset stomach, nausea, vomiting, diarrhea or loss of appetite.
Lack of feeling or tingling in the hands or feet.
Changes in your eyesight mainly change in red or green colour vision.
I got all the side effects, well, except the loss of appetite and the weight loss. I gained 20lbs in 3 months. It was a massive disappointment for me as in 2020, I committed to losing weight, and I dropped 45lbs, so giving almost half of it back hurt.
After three months of severe side effects, I went back for my monthly follow-up, but the lymph nodes hadn’t reduced in swelling.
The doctor looked at me and said, we need to get in there and see what’s going on. He referred me to the head of Ear Nose and Throat at Makati Medical centre.
Dr. Cedeno is a good man, a good doctor. He didn’t sugarcoat anything and didn’t try to downplay anything. When I asked, do you think it’s Cancer, he said didn’t mince words, “That’s highly probable. Let’s do another biopsy to see what we can find.”
He set up an ultrasound-guided punch biopsy. It combines ultrasound for targeting and then a needle that looks much like a harpoon. Once plunged into the mass, he clicks the trigger, and the harpoon needle retracts quickly with a sample.
There is no chance of missing flesh with this unit. He took six chunks and sent them to the lab for testing.
It took a week for the results to come in, and it was the first sign of Cancer. They found enough signs that we needed to set up a lovely procedure called a neck dissection.
The Neck Dissection
When I heard the procedure’s name, I immediately flashed back to grade nine science, where students would dissect a frog. Then when I researched neck directions on doctor google, I was thankful these cuts were being made by a professional and not a dumbass 13yo.
I checked into Makati Medical the day before the surgery, with the schedule being first thing in the morning.
Anxiety was very high; I’ve not been under a general anesthetic since I was 16 when my wisdom teeth were removed. Even then was just gas. This was the real deal, unconscious, intubation tube down my throat.
For the people using intubation to avoid COVID hospitalization, it wasn’t pleasant. Thankfully I was only under for 3-4 hours. I couldn’t imagine the pain and recovery if it was days or weeks.
The morning of the surgery, they wheeled my bed to the pre-op room. We did the surgical pre-check with the cardiologist, Dr. Gamboa-the anesthesiologist, and Dr. Cedeno, who would be performing the surgery.
The difference between Dr. Gamboa and Dr. Cedeno was almost comedic. Dr. Gamboa’s specialty is putting people to sleep, making them relaxed and if you handed him a mai-tai, and put him in a tie-dyed shirt and a straw hat, his demeanour wouldn’t have been out of place. “So we’re going to give you a bit of this drug that will relax you, then we’ll just give you a pinch of this that will get you sleeping. Then we’ll put the tubes in your throat. It’s all good maaaan, just relax and enjoy the ride.”
My only question for him was, “Will I dream?” I wanted to know if I would be closer to death or just dead asleep.
“Oh, you’ll dream my man, groovy dreams, enjoy. We’ll be with you the entire way.”
I’m sure his Dr. Hippy schtick might put some people off, but it was exactly what I needed to help with the anxiety.
I got wheeled into the OR, and the nurses set me up on the table and started attaching the tubes and blood and heart monitors.
I glanced over to the corner where Dr. Cedeno was getting ready. His demeanour was juxtaposed to that of Dr. Gamboa. He looked focused and intense. You could drop him in any locker room before a championship game. He wouldn’t look out of place. I half expected him to start slapping his face and start screaming, “LET’S DO THIS,” before letting out a primal scream.
I lay my head down, they hit the switch on the anesthetics, and I was out in seconds.
There were about two seconds of this feels pretty aweeesssssooommme, and I’m dreaming. I wonder if there is a way to make those two seconds last a full minute? I couldn’t tell you what I dreamed, but I remember they were groovy as Doctor Gamboa promised.
My next conscious moments were moving from the operating table back to the hospital bed for transfer to the recovery room.
I was hooked up to oxygen monitors with a mask over my face feeding me oxygen. I was in pain, groggy and sweaty, and dizzy. The mask was heavy; even though it provided me oxygen, I felt it was constraining me.
I remembered those videos of people coming out of general anesthetics and people filming them saying stupid shite. I made a mental note, don’t say anything out loud. There’s no guarantee it will be sane.
I would be in the recovery room until my blood oxygen levels were sustained in the high 90s on the O2 meter. I started playing a game to speed up the recovery. I’d begin to move my toes, then ankles and worked my way up my body.
The alarm would sound on my O2 meter, and I would start gasping until I could bring the score back to the 90s.
During this, while I wasn’t speaking for fear of saying ridiculous things, a nurse brought some paperwork. I couldn’t read it, I couldn’t understand what the nurse was saying, but she handed me a pen to sign.
I’m assuming it was paperwork saying I wouldn’t sue.
I grabbed the pen and made a scribble that didn’t look like anything, and I remember it covering half the page. I stammered out, “I’m not in any condition to sign a contract. This contract is not legally binding.”
I don’t think she cared, but for that moment, I felt protected, legally speaking.
After an hour in the recovery room, I was ready to return to my room.
As soon as I was back, I grabbed my cell phone to snap some photos to get a view of the damage. With my entire neck covered in bandages, I looked like a fancy Englishman wearing a cravat, blood-covered cravat.
I didn’t feel much pain. Of course, I was in IV pain meds, nothing fancy or enjoyable beyond pain relief.
After an hour or so, Dr. Cedeno came into the room and asked how I was feeling. He asked me if I wanted to see pictures of the surgery and the lump.
I do want to see pictures.
Surgery was to take 2-2.5 hours, but the whole operation extended for 4 hours as the lump was attaching itself to my neck muscles and my jugular vein.
The stubborn tumour forced the surgeon to remove two chains of lymph nodes and my jugular vein. I heard that and said, “don’t I need my jugular?” I forgot we have both left and right jugular veins. Now I just have a right jugular vein. One is enough to return the blood from my brain to my heart. The rest of the veins in my head start to compensate—the wonders of the human body.
The lump weighed 500g or about a pound for those who prefer. I think half a kilo sounds better, more ominous.
It’s Cancer, for sure this time.
The lab results came back, and finally, we knew it was Cancer, but the lymph nodes were not the primary source.
The doctor had me do an entire body CT scan to look for the source of the Cancer while I was in the hospital. Unfortunately, they didn’t see anything.
I checked out of the hospital. It was not cheap but more on that later. I'll write another update on on my renewed appreciation of Canada’s public health system and the security of knowing you'll be treated without being out of pocket.
A week after my surgery, I went back to the doctor to get my stitches removed. He shoved a camera up my nose and down my throat, hoping to find the Cancer source.
Nothing, everything looked normal or, to use the medical term, unremarkable. We inspected your body, and it’s pretty unremarkable.
It was time to go nuclear. The next test in the cancer search was a PET scan, like a CT scan but in full colour. You’re injected with radioactive glucose, which will be sucked up by the cancer cells hungry for energy to keep growing, then show up brightly on the scan.
When the chemicals were injected, I could taste metal in my mouth and a warm rush all over my body. I’ve never been an intravenous drug user, but for a moment, I thought, Ok, I can see how this could be attractive; of course, that would be with something other than nuclear sugar.
The Results - Tonsil Cancer
Tonsils have never been part of my conscious thinking since I was a boy. I’d watch kids’ shows where the child would go to the hospital to get their tonsils out. They’d be scared, but then all their fears would subside with the promise of all the ice cream and Jello they wanted after the surgery.
Thankfully this went a lot quicker, it was about an hour, and I knew everything to expect, except the pain. GAWD, I had my neck dissected, and it wasn’t a fraction of the pain from the tonsils coming out. TV promised me Ice cream.
Follow up and the next steps
Dr. Sedeno removed the tonsils but didn’t get everything he wanted, as the tumour was close to my carotid artery. I have two of those as well, but that’s a more drastic procedure to remove. Although without my left jugular and my right carotid, the blood would flow clockwise through my head.
We had a team meeting with the doctors now, an oncologist, a radiologist, and my ENT surgeon.
The doctors set the treatment plan to include Chemotherapy and Radiation. 7 weekly doses of the chemo drug cisplatin, and 33x radiation treatments.
Anxiety level 10
It was three weeks between the Tonsil removal and the start of treatments. Dr. Google took hold of me. I went down the rabbit hole, researching up all the side effects. And all the horror stories of all the side effects. My mind would run 100 mph until I would finally crash asleep at 5 am. I’d wake up at 7 am to begin the day.
With throat radiation treatment, they focus it as best they can on the affected area, but there is a chance that my salivary glands will shut down after a couple of weeks. Eating becomes a chore.
Imagine eating a handful of saltine crackers with no water, just a dry mouth. I read stories about a woman who had to drink water every time she put a fork in her mouth. It was to moisten the food for chewing.
I figured ok; my mom wasn’t always the best cook. I’ve had to eat a pork chop or two with that technique. Then I thought, what if it never comes back?
Then I started reading about feeding tubes; a plastic tube goes from your nostril to your gut. High-calorie liquids are sent through the line to bypass all the chewing and swallowing requirements.
I’m going to do what it takes to avoid that contraption. I have a case of Ensure, and I’ll choke it down whatever it takes to avoid the tube.
So it begins
Finally, this week, I began Cancer treatment.
On Monday, Sept 6, I went to Makati Medical's oncological radiation department to get fitted for a mask. I was under the impression that the radiation mask was to protect the rest of my head from the radiation. It’s there to lock my head in position so that I don’t flinch, and they don’t miss.
On Wednesday, I went to the Makati Medical Cancer centre, where I was welcomed with kindness. I needed to sign some papers and pay some bills.
As I sat waiting for my treatment, I saw all women, all wearing long head scarves to cover balding heads. Each shuffled along with a look that frightened me, it was like seeing someone who's seen your future and they won't share, just knowing you need to experience it yourself. I tried to give a warm smile as I made eye contact but we were all labouring to smile.
The nurses at the Cancer centre are a special group. Even the security guard was kind and comforting. They’re all dealing with people at different stages of the disease and coping with various expected outcomes.
They helped bring my anxiety down a couple of notches with clear explanations and just kindness and the smiles that were so laborious for the rest of us.
The chemo room has a lazy-boy chair, a small table, a tv and an IV rack to hang the medication.
First, it was an hour of IV fluids to make sure I was fully hydrated. Then some anti, um, anti-vomit meds to keep me from rejecting the chemo meds and hurling everywhere. Then an hour of chemo drip.
I could feel it flowing through my body, but it wasn’t overwhelming.
I just put on an audiobook, Cultish, which talks about the languages of cults. I highly recommend it. It talks about the Jim Jones type and heaven’s gate type cults to lesser nefarious cultish type groups like fitness and yoga groups, like Bikram and crossfit and the cultish multi-level marketing. It was insightful helping you recognize the language patterns to insulate yourself from their influence.
Once the chemo drugs were in me, there was an hour of rehydration, and then I was ready to go. Other than feeling a little clumsy, I was able to keep it moving.
Irish insisted we take a car home, but I think I’ll be able to do the walk next week.
On Thursday, I was in the mask. It was now a rigid, unforgiving restraint compared to the warm, soft plastic used for my fitting. It was tight. I lay on the table, and the radiologists clamped the mask to the table. I could feel my elevated heartbeat through my cheeks. I’m not claustrophobic, but if I were, it would have been much too much.
I did some 4/4/4/4 breathing to calm myself.
Breath in or a count of 4
Hold for a count of 4
Breath out for a count of 4
Hold for a count of 4
Then repeat until the anxiety subsides.
The mask was so snug against my face. I couldn’t open my eyes. I continued my breathing and just let go.
After 7 minutes, I drifted off to that place between sleep and awake. Your thoughts are dancing between dreams and reality and back.
After a couple of whirls of the machine-it was done.
The first session took longer, but Friday’s session was quick.
I was on the treatment table at 7:50 am. I was off the table by 8:10 am. Now I just have 30 more treatments to go.
My anxiety has subsided now. My BP before the first session was 140/90, but before the second, it was normal 120/80 with a heart rate of 70. The unknown is the only source of fear, but I can just deal with it once I know what to expect.
I should say, the prognosis for tonsil cancer is good. I’ll give more updates and they’ll be shorter because if you’ve made it this far, I appreciate you and I thank you.