I'm really going to enjoy Christmas next year!

Christmas is a multi-layered holiday, typically filled with buying gifts, going to many parties with friends and neighbors, and enjoying some sort of feast on Christmas day. These are things that I love to do and be a part of, with my family, and with my social circles. Well, maybe next year.

I've been holding off on writing in this blog, because, frankly, I've gone a bit dark due to physical reasons. Primarily, my mouth, gums, tongue and throat have been blasted from the radiation treatments, and I have to mask the pain with pain killers and numbing liquids. It actually hurts to talk, swallow, or even open my mouth. If you've ever seen someone with a broken jaw that was wired shut, that is what I am like when I try to talk. Not a great conversationalist at parties (all of my wonderful friends have lots of questions, and my adrenaline tricks me into thinking I can talk just fine). I've also lost hair in patches at the back of my neck, and even my neck whiskers have just fallen out.

Then there's the food tease! Fresh baked cookies being dropped off by neighbors. Homemade chocolate nut peanut brittle. Cardiff Crack (local marinated tri tip) grilled to perfection so that the meat is falling away from the knife as I carve it up. Grilled salmon. Seared ahi. Baked potato with butter, sour cream and chives. Broccolini spears, all of which I grilled outside as the sounds of neighbors toasting, and enjoying their family dinners wafts through the air. I won't be able to even sample a bite of the Cardiff Crack.

Julia asks me if I can join her in 1 small sip of her favorite Rombauer chardonnay, to toast the eve. No, sorry, alcohol is acidic and stings. Debbie Downer here, checking in for my shift! I am in some sort of torturous prison. 

I am blessed to have both Sasha and Luke sitting together at the dinner table. Also, Torchie and Dan are with us, so it is a small family celebration. Everyone loads their plates, while I hope to be able to soften a mashed potato with sour cream and chicken broth to wash it down. I get 2 bites in, and my mouth says no. So chicken broth it is. I hung around the dinner table and enjoyed everyone's company, then I headed back into bed at 7pm. 

As I went to bed to rest, the kids both went out with friends, Torchie and Dan left to get home early, and Julia followed shortly behind me to get to sleep early since she didn't want to just be by herself in an empty house. Pretty weird Christmas.

This morning I started my new week of radiation treatments. I met with my doctor today, and he's worried I'm losing too much weight. I told him it feels good to get my weight down, but he says I lost 14 lbs from last week, and that's too fast given how little I'm eating. Still feels good to me! So I either need to eat more (not sure how to?) or consider the feeding tube.

3 weeks in

Today I completed my third week of daily radiation treatments. There have been 2 major changes since my last post. First, the pancreatitis event that put me in the hospital turns out to be a bigger deal than I had understood. My oncologist told me that we can't take a chance on using the same chemo medications again, as another triggered pancreas attack could end my life, or is likely to be 10 times worse than the last one. That could put me in the hospital for weeks and put an end to my cancer treatments. So the doctors are moving me to a different med called Erbitux. The chemo medication is very different from the Cisplatin they were using before. The good news: no more nausea sickness. The bad news:  it causes very bad acne. What? Come on! I did that already, when I was 16, and it wasn't a good look. Well, at least I'll be keeping my hair - maybe I'll comb it forward over my face : )

The second change is from the radiation. Eating or wanting to eat is an issue. I can no longer taste anything like sweet or salt. Everything tastes like cardboard. Coffee, bacon, water, sandwiches, salads, vegan hamburger with mushrooms and swiss cheese... CARDBOARD. The only thing I can taste is spice, as in heat. Unfortunately, spice burns my already burnt throat. Since I no longer produce normal saliva, my mouth and throat is dry all the time. 

Next week, I will begin having the new chemo infusion once a week for 4 weeks. Anyone have any Stridex Pads? Plus 21 more radiation treatments. The doctor has my last day of treatment scheduled for January 17, 2018. Happy Birthday!

Every day, I try to focus on something good in my life so I don't get overwhelmed. Ziggy is always happy.

And fantastic sunset sitting with good friends on the bluff. I got a good shot of the kite flying into the sun.

In God's Hands

9 radiation treatments down. The little Halo oranges don't have any taste at all to me. My gums are getting sore now, throat is scratchy, and everything including water has an odd metallic taste. 

I met with my internist yesterday and discussed my bout with pancreatitis. I mentioned that the hospital staff and doctors were interested in getting the pancreatitis to subside, and not really focus on how it happened. He shook his head and said, "Many people don't come back from Pancreatitis. If you get it again, it can do you in. We need to find out what specifically triggered it." So we went over my chemo meds, examined known side effects, and there it was. Pancreatitis is listed as a side effect for Decadon, a steroid anti-inflammatory that was given with the chemo and also in pill form following the infusions. I will work with my oncologist on Monday to determine if there are other options so this does not happen again in 2 weeks.

God works in mysterious ways, for sure. About 9 months ago, Fe, a client of Julia's was looking for help in renting out her La Jolla Shores beach house. Julia suggested that I would be a great fit to handle all aspects of the short term rental, having years of experience with our own house in Olivenhain. Fe lost her husband last year to HPV-related cancer, and is a leading advocate of vaccinating and finding a lower impact cure. What a blessing to have Fe's strength and knowledge to help me navigate through this disease. She and her husband started The Immunotherapy Foundation, donating and raising millions of dollars to create one of the West coast's only immunotherapy cell processing labs, which is associated with UCSD Moore's Cancer Center. This innovative treatment replaces chemotherapy by growing white blood cells and injecting into the patient so the patient's own immune system can fight the cancer. You can read more about the Whitworth's, and the work of their foundation located right here in San Diego. 

And what a blessing to be able to manage this property for the Whitworth family. Have you seen this place? Check out more at www.LaJollaShoresBeachHouse.com 

Many thanks to all of you who have been reaching out via phone, text, commenting on the blog, and prayer. It is hard to articulate how very much I feel you all, and it really pulls me up when I go dark. I am dearly grateful for having you all on my side and giving me tidbits of encouragement in so many ways.

Weekend at the E.R.

I was feeling good for completing the first full week of treatments. Saturday a.m. I awake with a dull ache in my stomach. I ate scrambled eggs and a bagel to soothe it, comfort food. No coffee or tea, just water. Pain started aching more and my stomach was bloating up. I figured it was indigestion from all the meds, and it would soon be gone. By lunch it was getting worse, so I thought vegan barley soup and mashed potatoes would coat my stomach and chill me out. Wrong. I spent the next few hours trying to walk around, burp or anything that would release the pressure building in my gut. I walked around the block - twice. Tried to lie down and sleep it off. Pain's getting worse, so I call the weekend on-call answering service around 5pm, speak to the oncologist, and she simply tells me to go check into the ER at Scripps. "Well, that doesn't sound like any fun. Is there something else I can try, or just wait it out to see if it's indigestion?" The doctor tells me I'm on "chemo watch", and after having chemo, all kinds of infections can spark up and deal you a serious blow. 

On to the E.R. So I do try to wait it out another hour, thinking it's nothing or a gas bubble, but it's difficult to stand up straight, sit down or lie down now, and it's Saturday night in Encinitas during the Holiday Parade. I figure if I got to go to the ER, best get in there early before the weekend rush. Julia takes me in, and I get put into a little exam room within 5 minutes. The place is dead! I get a nurse trainee who rolls in my room like he knows what he's doing, tells me he's going to take an EKG and starts to pull out the sticky things for my body. He places them in the wrong spots, rips them back up (ouch!) and places them in a new spot, but now they won't stick. I'm looking at him, and can tell he doesn't know what he's doing. The wires are all tangled - he's pulling sticky tabs off and trying to stick the one that is now full of my arm hair back on me. What the heck? Finally his training nurse pokes her head in and sees the carnage, and calls him out on it. The guy's pride is hurt, but I'm not a training exercise, bro.

The first ER nurse isn't very comfortable with accessing my new port catheter, so the attending guy does it - thank god! I didn't want another person practicing on me. The attending RN tapped into my port, but without the typical sedative or numbing spray. That's when everything went downhill for me. I could feel the connection, and visualized what was going on which immediately turned me queasy. They have me sitting straight up, which adds to the stomach pain and difficulty breathing normally. RN needs to draw blood from the port before he can put in the pain meds, but my blood pressure drops and my color leaves me. The RN's assistant hands him the wrong collection container. I break into a clammy sweat and start hyperventilating my breathing. Julia is staring at me, "breathe". I beg the RN to hurry, but they need several panels to test, and I'm fading fast. After 5 minutes, I am white as a ghost, sweating, and dizzy. They get to the morphine, and that hits my system fast. Everything slows down.

An hour later, I am rolled into the CT room for a scan with contrast of my abdomin. Then back to the ER room waiting for results. Doctor returns later and explains I have Pancreatitis. I'm thinking, okay, give me the meds and I'm out of here. No. Apparently, pancreatitis is extremely painful and heals very slowly. They admit me, roll me into a private room due to being on chemo watch, and put me on i.v. fluids only. No water, nothing to eat or drink by the mouth. Check my vitals every few hours throughout the first night, so I was in a haze.

So that's how I spent Saturday eve, Sunday and Monday. Just i.v. fluids in my little hospital room. 

Around 10 a.m, my radiologist contacted the hospital and helped get me discharged in time for a late radiation treatment. If I had to miss today's treatment, I would be delayed a whole week, which sucks. Still have to be on a liquid diet for the next 3 days, so I'm trying to figure out some things that are nutritious and won't inflame the pancreas again. Don't mess with the pancreas! 

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...