4 Days In - Double days are over for now!

Day 4 - I've managed to get through the first 4 days of treatment, and it feels like I am beginning to feel the initial effects. 

1st day I started early by sedating myself an hour before I would be clamped down by señor mask. I needed to make a strong start and power though my short window of radiation. Ain't got no time for getting all claustro, so you got to sedate, and you'll be great. 

Julia was there to rub my foot and remind me I was okay. Then the therapists put in my chill cd, locked me down, put in the clumsy gaggy mouth guard, and told me to breath. Ahh... I sorta just gave in and found my chi. I drifted around between reality, and fractured mental images all the while pressed snuggly down around my head, nose and mouth without an inch to adjust. After about 15 minutes, I heard voices, the mask was unlocked and made it through. Relief.

2nd and 3rd days were double treatment days. First the same ritual for preparing and getting through the radiation. 

Then a short walk to the UCSC Cancer Clinic for a 5 hour long chemo infusion round. Luckily, this infusion is done while I'm sitting in a lounge chair with no restraints. 

I can read, listen to my headphones, or sleep. Over the course of the infusion, many bags of hydration and anti-nausea fluids are pumped in as well. So several times I needed to roll my drip set up along with me to the restroom. This is my sleeping set up below - headphones, sunglasses, warm blanket in the recliner.

After the 3rd day, second round of chemo, I began feeling like I was coming down with something. Aching legs, low fever, irritability, and suddenly somewhat queasy. Nurses warned me not to let the nausea set in, so I amped up my meds throughout the night, and I awoke this morning still not feeling well.

Today I finished my 4th day of radiation - my daughter Sasha drove me to the clinic and came inside to meet my therapists and watch me become one with my mask and the radiation table. Afterwards, we stopped off and had a quick breakfast together. I cherish the time alone with my daughter.

It is wonderful to have her helping me, and I love seeing her nurturing and caring, which is something I really missed since she's moved out. Sasha is strictly vegan, so she came home and made a 2nd breakfast: jack fruit and avocado tacos - yum!

By the way, I'm using a lot of artist filters on many of the photos, which somehow connects to my unreal state of mind and gives me something to do to have fun while I'm down.

Sasha and I went for a hike through the Botanic Gardens, as I was feeling good enough to get a walk in. 

That's a crow on her shoulder, looking up into the air, with a face on it's chest. Sasha fits right in.

MRI, Chemo and Cheesecake

7:30 am this morning I was back at the imaging center for an MRI of my soft tissue around my neck. The tech handed me ear plugs, locked me down to the table with a head mask, and back into the tube I went. The very loud knocking and vibration sounds are reminders that that giant machine is hard at work, but I have no sense of how it works. So I can't attach the sounds to a mental image of what's happening. Instead, I try to drift away to somewhere better and not concentrate on the noises. After 15 minutes, I'm pulled out of the tube, but he's not done with me yet. While still locked down by my head mask, the tech injects me with a dye for contrast, using a needle instead of my brand new port. First attempt was a miss, of course! Second try, after I point out the exact spot other nurses have been successful, he's in, the dye is injected, and back into the tunnel for another round. This MRI is the last thing my radiologist was waiting for to start my treatments in combination with 6 sessions of chemo.

Later at the UCSD Cancer Center in Encinitas, I attended an hour long chemo education class which covered all of the side effects, making me a little uneasy. Two other new cancer patients were in there with me, a young dad with non-Hodgkin lymphoma, and an older man whose diagnosis I did not learn. Afterwards we followed our cancer tour guide through the therapy treatment area that was filled with all types of people sitting in large chairs while their chemo medications dripped into their bodies. Some looked lonely, others looked stoic and even bored. I wonder which state of mind I will be in when I'm sitting there, meds tapped into my port, watching the new patients coming through.

A neighbor stopped by last night and brought me a homemade cheesecake. She says it's to help fatten me up before the treatments! It is delicious.

Got a Smart Port put in

Finding a vein for drawing blood or inserting an IV has proven to be a demoralizing quest for many a nurse. My veins are not easy to find, and probably 75% of the time, nurses and lab technicians miss on the first try, which frustrates me since it means more poking and pain. With all the upcoming therapy and blood to be drawn for labs, I was a perfect candidate for an implanted port catheter. A "Smart Port" power-injectable port was implanted under my skin yesterday. I was slightly sedated, although awake and talking, while the doctor did his thing. My face was shielded from view with a blue tent, which I was grateful. 

The port itself is a small metal disc about the size of a nickel, and has a raised rubber injection site called the septum. Attached to the base of the port is a narrow flexible tube that was inserted into a major artery underneath my chest.  The port can stay inside the body for long periods of time, and after the incisions heal, it doesn't limit most activities. The procedure was done in less than an hour, and I was able to get up and walk out while still feeling some of the effects of the sedation. 

Robo-man after port implant

I'm feeling like a robo-man this morning. Steve Austin. Note to self - create an app so you can read your own blood and vitals from your smartphone. Now I am ready for the chemo and weekly labs. 

On a delicious side note, our avocado tree is delivering gorgeous green treasures right now. Got to enjoy these while the taste buds are at full strength.

The missing half is on my toast

The Fuerte has a decent amount of fruit, and the quality of the avocados is remarkable. All the drip watering and the last wet winter has made a difference. Plus Julia pounds on its trunk with a rock to shock it. Time to pick. 

The Freaking Mask!

This past Monday, I went to my radiologist's office for the fitting of a mask that I was told will help hold me in place during my radiation treatments. Sounds good, let's do it! 

I roll into the clinic in a good mood, thinking that I am taking my first step in beating this beast. Feeling good. Feeling optimistic. I meet with 2 friendly technicians who explain they will be conducting my daily treatments, but first we need to get this mask custom formed to my head. 

Before I lay back on the table, one of the techs tells me I need to have a bite guard in my mouth to hold my tongue away from the roof of my mouth. Sure, let's do it! She hands me this rubber mouth guard that looks like an ice cream bar. It's big, bulky, and once in my mouth, makes it hard for me to breath normally. Shit, I do not like this thing, I am thinking as I lay back on the cold table. I can't really talk or emote my concerns as the techs bring over the mesh mask and place it over my face. A small hole is cut so the ice cream bar stick can stick out of the mesh. The techs press the moldable mesh down firmly around my face and head, similar to stretching plastic wrap over a watermelon - which my head has been compared to. 

I'm trying to relax, and breathe as the techs talk calmly, but my instinct is to get up and rip this thing out of my mouth. Heart pounding, I begin to gag on the mouthpiece while trying to move my head. Can't move, can't breathe, I lose it fast.

It truly is a frightening process to get this mask made, and be locked down tightly by your face. Here's a look:

I panicked on the first attempt, overwhelmed with a feeling of being trapped and choked at the same time, and the techs had to release the locks and let me up before the mask had set. Fail. 

I was really devastated. Here I am about to embark on this life and death battle, and I couldn't make it through putting on my armor. I got off the table feeling dejected and a little embarrassed. I ask how often this happens during the mask fittings. "Probably more than 50% of the people can't do it the first time, without some meds." Whoa - there is an option to be medicated? Yes, please. So I leave and pick up a prescription of some powerful sedatives, and make an appointment to try again on Wednesday. 

Wednesday rolls around, I take the sedatives, and bring my wife for comfort. This time, I take my shoes off, remaining barefoot as I lie on the table. I feel this keeps my mind thinking that I'm still free and unrestrained. The techs run through the same process - stick the bite guard in my mouth, press the warm mesh mask over my face, lock down the 9 tabs that hold me tight to the board. I can't talk, but I don't really care with the effects of the sedative kicking in. Locked down, now the techs and my wife leave the room and the bed moves me backwards into the scanner. I close my eyes, since I can't really open my eyelids with the mask on, and zone out as the scanner does its thing. No panic this time. 

Here's my expression moments after successfully enduring Round 2 of the mask:

As a token of my first failure, the techs give me the ruined mask to take home with me.   

I guess some people paint theirs, or turn into some type of art. Others ceremoniously burn theirs after finishing their treatments. 

Finding the Source is a Big Deal

My original biopsy results used the adjectives "poorly differentiated", which basically means the cancer cells tested is not where the cancer originated. I don't know how they know that, but it is a big deal to find out the source. 

For me, my left lymph node is hardened and full of cancer, which suggests the source could be somewhere in my throat, tongue or mouth, and more often from the same side as the lymph node. So to find out more about the cancer, and to see how far it has spread, the ENT orders a PET scan. For my scan, they injected a radioactive concoction into my veins, and put me into the CT scanner. The scan covers you from your head to your thighs, providing a detailed view into every organ and cavity in your body. The radioactive stuff acts like glucose, and the cancer sucks it up. The scan shows areas in your body that are "lit up", indicating cancer. My PET scan provided good and bad news. 

The good news was that there doesn't appear to be any other cancer throughout my body, and my cancer is localized to the left lymph node. Cool, I guess.

The bad news is that no obvious cancer lit up in my mouth, throat or tongue. No source to target. That's what is meant by "poorly differentiated", and that has repercussions for the treatment plan.

Now the ENT has to get his hands dirty and physically biopsy tissue from several spots inside my mouth, tongue, throat and nasal cavity. For this procedure a few weeks ago, the surgical team put me under with anesthesia, thank god. The ENT did his thing, and I awoke with a sore tongue and throat for about a week. 

The biopsy came back positive for cancer at the base of my tongue. This is good news because now the my team of doctors can craft the treatment plan to target these spots, and minimize the collateral damage done to areas that don't show cancer.

I have 3 doctors coordinating together for my treatment: the ENT, a Radiologist, and a Oncologist, all part of the UC San Diego Cancer system. The plan is now set - a combo of daily radiation and 3 rounds of chemo over 7 weeks. Even though I thought I had crappy health insurance, I feel blessed to have access to the UCSD Health network - these people are so good at what they do, and always help me emotionally along the way.

My Battle against HPV Cancer of the Head and Neck

One month ago, I was diagnosed with cancer of the neck and head. 

What started as a hard lymph node in my neck, ultimately tested positive for a cancer caused by the infamous HPV 16 virus. 

Here's my backstory - about a year ago, I woke up to the most painful swollen neck I've ever experienced. My neck was swollen, and I could not turn my head without serious pain. So I called my regular doctor and asked to get in right away. He saw me the same day, and prescribed a Z-Pack to battle the unknown infection. Within a few days, the swelling was gone, and my neck was functioning again. I did notice, though, that one of my lymph nodes was still very hard, but I didn't worry about.

A few months went by, and I went to an oral surgeon who was possibly going to remove my wisdom teeth, which I had been putting off for years. Nobody wants to get this done as an adult. I mentioned the hard lymph node to the surgeon, and told me I should have it looked at prior to plucking out my wisdom teeth. So I did. 

My primary doctor ordered a CT scan of the head and neck, and about a week later, the results showed a mass in my neck that needed to be biopsied. Oh shit. That doesn't sound good, I thought to myself. My doctor referred me to a ENT specialist for next level attention. 

So now I have an ENT specialist check me out. After enduring the unpleasant scope exam, he doesn't see anything out of the ordinary down through my sinus cavity, throat, and base of tongue. He sets me up with a biopsy and PET scan.  

Results of the biopsy came back and were posted on my online health chart account. I was scheduled to meet my ENT in 3 days to go over the results, but I didn't wait, and checked on the report with my wife looking over my shoulder.  

That's when the ball dropped. I read the short conclusion:

"The histologic results are positive for poorly differentiated metastatic carcinoma with head and neck primary favored. These findings are concordant with imaging."

So there it is. These words made it real. I started freaking out in my mind. An avalanche of thoughts about telling my kids, my family, my friends. Dark thoughts of dying, or having horrific surgeries and spending my final days in a hospital jumbled around in my head like a load of wet clothes in the dryer. What about my crappy HMO health care? How much is all this going to cost our family? All these thoughts, yet I hadn't spoken to my ENT about the results, or what type of treatments are out there. 

I poured over the internet searching for poorly differentiated metastatic carcinoma and... well you can probably guess what type of horrific things I came across. Somewhere I read about 7 - 9 month survival rates, and was convinced that my days were now numbered. Nothing on the internet was good. After 2 days of dread and feelings of despair and helplessness, I accepted at some level that I was going to die from this. I called my ENT's office, explained to the receptionist that I had already read my results online, and wanted to move up my appointment a day, if possible. There was a silent awkward moment on the line, and then she said "You read your results? Without the doctor? Hold on a moment!" and put me on hold. Uh, did I do something wrong? 

My ENT picked up the line (wow, this must be serious since most doctors don't actually get on the call), and said, "Hi Mr. Duncan, apparently you've already seen your results? Well, I scheduled your appointment with me because I really don't like to give out bad news over the phone." Sorry doc, but it was right there, and I couldn't wait any longer. Now I asked him about what stage I was, and what my life expectancy was. "This is a cancer related to the HPV virus, which is somewhat good news. This is treatable, and we fully expect you to survive this, Mr. Duncan."  Large sigh, eh... what? But the internet said...