Category Archives: Daily Updates

Scheduled Appointments

Last Infusion Treatment: September 19th

Blood Labs Checkup @UCLA: September 26th

Consultation with Cardiologist: October 2nd

Next Infusion Treatment: October 9th

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Well, here we are several weeks into treatment, and so far I am learning a lot. I think the biggest lesson has been to stay flexible. There will be good days that might turn into bad days, and then back into good days. Sometimes a medication will save my ass, and the next time may be less effective. Pain will come and go and pop up somewhere else. In short, everything is in flux all the time.

If you’ve read my “Aftermath” post then you know a little about how my first week went post-infusion. Things got better (like a LOT better) for a few days after that but then I backslid a bit. I also had a check up with my UCLA Oncology Team last Thursday where they collected 10+ vials of blood for testing to see how my body has been responding to the infusion therapy. The good news there is that my white blood cell count had not dropped too much after the first dose, which is one of their concerns. They are going to do this blood panel check-in again after next infusion so I guess I’d better get used to it. The last appointment we were there for six hours so I’m hoping that’s not the case every time!

On October 2nd (which is currently tomorrow), they have me seeing a cardiologist to check out my heart due to some irregular rhythms they had noticed on EKGs. They weren’t super concerned about the EKG itself, but this is more housekeeping for the Clinical Trial side. They want to eliminate any heart condition that might skew the study database so it’s required to be done.

My upcoming Infusion for October 9th will basically be a repeat of the last dose, but I will also be starting the Clinical Trial drug at that same time. I’m a little bit anxious to see how that will affect me, especially having just experienced the side effects of the first round, but I will have to play by ear.

Thank you to everyone who has been following my story and reaching out to stay in touch, offer prayers, support, or just to say hi. I know that this journey will be a tough one and it is only beginning, but the support and encouragement from loved ones has been overwhelming and I appreciate it from all of you.

Thanks all!

I thought a lot about how I could describe the days that followed my first chemo infusion. I was torn between a part of me that wanted to chronicle the pain and suffering in agonizing detail, to really give it its “due”, and another part of me that wanted to deny that most pitiable of moments its time in the limelight. Part of the reason is that I’m not all that excited about reliving the experience, if I am being completely honest. Still yet, another more practical reason was that I simply lacked the mental horsepower to even attempt the task.

How many times a day are we surveyed about our basic well-being by those are most often too busy to listen or even more commonly just don’t care? The clerk at Starbucks, the gas station attendant, the gal who calls from the hospital to perform an obligatory survey about the quality of your stay…they all ask “How are you today?”,or some iteration of the same question. I’m not convinced that anyone actually wants to hear that answer, or at least they are few and far between. Even more rare is the person willing to answer that question honestly because, let’s face it, life is complicated and full of struggle. Setting aside these general rules of engagement, here is how I might have answered that question during any of those seven hellish days.

Pain

The varying presentations of pain that I have experienced during the initial months of my dance with cancer could best be described as a moving target. First, my shoulder. Then my upper chest which quickly moved to my neck. Later these would disappear with proper pain medication and I would be left with pain in the lower left side of my ribcage that was acute enough to exceed the capability of the narcotics to mask it. Then I would have a thoracoscopy that would consist of three incisions in my left side, including the site of my chest tube, which prevents me from sleeping on my left side (or right side due to the way my left arm hangs and aggravates it).

By this time I would long for the days when my shoulder was just a little bothersome. Advil handled the job in those days, then when that wasn’t enough it became Norco for a short time, which quickly upgraded to Percocet, and then simply Oxycodone. When that was no longer enough I was prescribed OxyContin, Oxycodone’s “long acting” cousin. Now I was on a round-the-clock regimen. Never a moment that wasn’t medicated in some way or another. I would love to say that was finally enough to manage things, but with each new hospitalization and new pain symptom, the team of doctors had to reach higher. At some point only liquid Dilaudid delivered intravenously did the trick, and I had a sincere concern that I would never be able to step free of the hospital again. Before they released me back into the wild, the team of palliative care professionals had me on Fentanyl slow release skin patches, and Dilaudid in pill form for breakthrough pain relief in crisis situations. If you have been following the development of the pain management regimen and thought to yourself “Wow, that’s a lot of drugs…” you aren’t alone. I was formerly someone who didn’t even like to take Ibuprofen for headaches just because I am not a fan of pharmaceutical interventions. Funny huh? Now my poor pharmacist gives me a concerned look every time I go to pick up new prescriptions. A soft spoken Indian man who is rarely roused to interact more than the minimum amount for any reason, he now gives me the same cautionary look and disapproving furrow of the brow that so many parents have worn when trying and failing to guide their offspring away from a troubled path.

So how did the chemotherapy affect my pain levels that first week after coming home? Probably not at all. Here’s the thing, I don’t know that I could say for sure that there is any pain directly associated with chemo for me. Or, if there were going to be, perhaps I was on so many drugs that it was just a drop in the bucket and they were already provided for in advance. Don’t get me wrong here, this isn’t to say that there was no pain during that time, in fact quite the opposite, but I don’t know that I could attribute it to the chemotherapy or immunotherapy drugs. Instead it was the same feeling of heavy suppressive fire being applied every day to my overall resistance, pain tolerance, and fighting spirit while I welcomed a whole new host of symptoms for which I was most wholly unprepared.

Nausea

Coming home from that first chemo infusion, I actually felt ok. There is a pre-infusion medication suite that really helps getting you off on the right foot, and I must say that I was lulled into a false sense of wellness that would not have fooled a more experienced Chemotherapy Patient. The first day back home was a Friday and my older brother Dan came over to visit with me on his day off and spent the majority of the day hanging out. He hopped into action manning my Big Green Egg in the backyard and fed me a King’s spread of Seared Tuna and Smoked Salmon. We spent the better part of the day in a state of semi-relaxed vigilance, knowing that symptoms should be expected and forthcoming, but at the same time, hoping for the best.

Up until that time, my nutrition had been somewhat of a topic for concern. For one, I had been in and out of the hospital a lot. My last week spent there started out as an ER trip because I couldn’t eat or drink without pain, and became an extended stay out of concern over a GI bleed that resulted in an Endoscopy and two (yes that’s right- two) colonoscopies. These procedures both required fasting beforehand, and the latter of the two also required a full bowel cleansing regimen (ingesting 8000 liters of foul liquid designed to clean out your digestive tract) that had to be repeated twice. So to recap, no eating and lots of….cleansing. In addition to all of this, pain medication, odd sleep schedules, GI procedures, and just generally being hospitalized do not make for the best eating conditions. On top of this, I retained a lot of liquid that I will credit Mandi for noticing when my doctors did not find as much of a concern. I was bloated to kingdom come. I really wish I had taken a photo because it was a sight to behold. My torso looked like an ice cream cone that had been entrusted to a child on too hot a Summer’s day, bulging on one end and melting on the other. My ankles were canned hams, and I could feel the fluid pressure in my shins the moment I tried to put my weight on them. Given all these things, it was easy to miss the other changes happening to my body. I ended up losing a lot of weight during this time without really realizing it. When I left the hospital after the GI adventures I weighed around 200 lbs, which was normal enough for me. But within a couple weeks, after addressing the swelling and extra fluid retention the scale would show me down 27 lbs to a paltry 173, which is a number I had not seen in my entire adult life.

And with each minute that passed I fell further into that deficit, lacking the calories needed to keep me from wasting away. Food seemed impossibly disgusting and it turned my stomach just to think of it. Meals were out of the question, and most days I subsisted on a few spoonfuls of applesauce and saltines. Even the pills that I so desperately needed to take to control my pain and other symptoms were nauseating to contemplate. It got to the point that even sips of water had to be carefully planned in advance if they were to be executed with any degree of success. Perhaps the worst part of this all is that I was so unaccustomed to the symptoms of nausea that I was terrible at identifying when “anti-nausea medication” would be helpful. Too often I was already at the point of vomiting before I had realized the reason I had been feeling so shitty was nausea related. Live and learn.

Then there were the smells. One of the benefits of being hyper nauseated is an acute sense of smell. Just ask any pregnant woman. But for me the hyper alert sense only served to make me hate and avoid even more things. I thought I had found a friend in Cinnamon Toast Crunch, until I got the scent of cinnamon stuck somewhere in my olfactory glands and became convinced it was also poison. I couldn’t eat it any longer. Then it was my toothpaste that became associated with that disgusting queasy feeling thanks to my habit of brushing my teeth after tossing my cookies (it’s a figure of speech, I couldn’t even eat cookies). I had to change brands to something less minty. And then there was just the smell of anything else in the house that I could detect at all. I became convinced that I could smell death and decay everywhere and had to either wash, clean, shower, scrub, or shampoo the items in question to purify them. Since I was nowhere near useful enough to efficiently keep up with that, I was more likely to run from these smells and preferred to be out in the fresh air whenever possible.

Sleep

Of course, when you are in pain constantly, and feeling sick to your stomach around the clock, sleep is a luxury that not many can afford. I was no exception to this and sleep was one battleground that I feared most. The night approached inevitably with the passing of each tortured day, but never brought the relief that I was once accustomed to in better days. I did most of my sleeping during the day since it was somehow easier to find a comfortable position for me to relax and lie down. I would later learn that many of my sleep issues were related to my chest surgery and nausea issues combined together into a miserable super-duo.

In any case, my days were largely consumed by long and unplanned naps thanks in part to my rough nights, and the other half thanks to narcotics. When I finally did stir in between naps I was usually approached by Mandi with the latest batch of pills I hadn’t taken on time, or to try to force some food or fluid into my system. I reacted with all the cooperation of a dementia patient and refused to take all of my pills, food, water or even advice if it seemed too much to swallow. To her credit, most of the resistance was presented in the form of non-verbal grunts or disgusted faces, and little dialogue, and she still persevered. Sadly, despite my terrible side-effects and the impact they had on me, Mandi somehow was tasked with not my only keeping me alive, but running our entire life by herself. I wouldn’t have blamed her for dropping me off at the fire station.

Despair

And so the sum total of my side-effects from chemotherapy could best be wrapped up in that one word…despair. Probably the single most impactful, permeating, and intrusive of all was the feeling of despair. On a pretty regular basis, I would say that my normal disposition is balanced, and even leaning towards optimism. Definitely not someone who focuses on downsides, but rather helps others to see the silver linings if possible. It is a primary personality asset that helps me get through a great many challenges in my career, relationships, conflicts, and to just have a generally good time in life. But this is also why it is so scary to watch that spiritual armor wear down to the point of virtual non-existence.

When I was able to be alert enough to notice them, I found myself watching people go about their day and perform normal tasks. Walking to their cars. Pushing a baby stroller. Summoning a burst of energy to beat the expiration of a crosswalk signal. It became impossible not to envy their command of mind and body, a connection that I once had that seemed long severed. My body no longer did the work that my mind commanded, and in my drug-washed wakefulness I found myself mentally dissecting them, as well as myself. I wished for that state of being, prayed for it to return. And then wondered why it had all abandoned me.

I often hear people speak of a moment of clarity that is a common experience among people who have been diagnosed with cancer or another serious disease. They often feel a sense that they will no longer take the small blessings of their life for granted and can walk away with a sort of gift of awareness. Whenever I hear those stories I totally understand them and agree that to recognize this is a gift, except for me it was nothing new. I already knew how good my life was. I knew how many ways I had been blessed, and I counted them often. Why did I need this extra lesson? Perhaps they are fruitless questions, but I asked them as I watched parents walk their children to and from school in the manner that I used to just months ago. I wondered when I would be able to again.

The cumulative effects of the chemo had a way of siphoning color from everyday life until there was nothing to see but shades of grey. Even the sounds of things that I loved, my kids screams of glee, the excited yelp of the dogs playing, they now had a way of beating me into a retreat. It was as if they were spoken in a language that I no longer understood, and that language was joy. They only made me want to crawl away and hide. I began to imagine futures that only included suffering, and that only included pain. To think about all of the ways that you could be burden to those who once counted on you for support and those you loved most and to become caught up in a whirlpool of self doubt that is truly bottomless. For me I never felt the danger of becoming lost in any real sense, but it was easy to see how one could do it. To peer into that abyss must be one of the most terrifying experiences for anyone.

Fortunately, I came into this with knowledge that I “wouldn’t feel myself” and my doctors had advised me that I would have thoughts that seemed very foreign to me. I couldn’t have thought of a better description for those thoughts. They weren’t me. But I was having them all the same. I fought to suppress them, and to hold out until things turned around. My oncology team all reassured me that I would turn the corner at any moment.

Relief

And finally there was a change. Thursday evening at 7pm if I had to mark a specific moment of realization, and a full week since I had undergone the infusion therapy the Thursday prior, the symptoms began to break. The first thing that I noticed was the hunger. I was actually hungry for food. I woke up the next morning and felt a slight shift in my mood, was it…hope? I actually felt eager for the day to begin and was ready to go after it. The color and temperature began to return to things and then seemingly, all at once, I felt like me again. It is difficult to communicate how quickly my mood, appetite, energy level, and even pain improved. As if being rewarded all at once for my suffering, I was able to do the things I couldn’t or didn’t want to just a day earlier. I had finally reached the other side.

A restless night of sleep made me long for bedtime to be done. As soon as I felt I could get away with it, I left bed for good. It was about 5:00am.

Mandi woke as well, setting about her daily routine. Brush teeth, change into workout clothes, count out my pills remembering to account for me taking several off schedule last night. I leaned over onto some object in our bedroom in a position my doctor calls “tripodding”, it allows my lungs to fully expand so I can catch my breath. The morning went by in a blur, with Mandi heading down to the gym to get her workout done after she had dropped off my pharmaceutical breakfast. Dannon OIKOS drinkable Greek yogurt, an 8oz serving of apple juice with Miralax laxative mixed in, about 8 different pills, coffee and water. I choked down the breakfast and retreated to my extra plush blankey to watch more Seinfeld at 6am.

I was awoken again by the sound of the kids coming into the room. A sweet sound on any day, its inherent sweetness multiplied by the events of late. It was nearly time to leave for school, which meant that behind the kids, Mandi would be sure to follow. A whirlwind of excitement, laughter, yelling, showers, blow dryers, and electric toothbrush noises. Before I knew it, I was slowly dressing myself and giving goodbye hugs to Bode and Scarlett in the closet, having missed the deadline to be ready in time to walk them to school myself.

It had been a fast paced morning, for a Thursday, but a big day indeed. Thursday, September 19th 2024 would forever mark the day of my first chemotherapy infusion treatment. I struggled the majority of the time spent in the commute to UCLA’s facility, half of the time spent in pain and the other half just trying to organize my thoughts in any useful way. As a matter of fact, this post could have been finished that same day, under slightly different conditions.

Treatment Plan

My treatment plan consists of three parts. Chemotherapy, Immunotherapy, and Targeted Therapy.

The first thing to understand is that the term “chemotherapy” actually refers to a group of anti-cancer drugs that is developed to treat address cancer in a very specific manner. Even though there are other drugs that will be delivered to a patient during a “chemotherapy” infusion, only certain drugs are considered by the doctor to fall into the category of “Chemotherapy”.

Chemotherapy, in my case, is basically two different drugs, delivered intravenously at these things called “infusion appointments”. These chemicals are the ones typically responsible for classical chemotherapy side effects. The second group of drugs in my case would fall under the category of Immunotherapy Drugs, even though they are administered and delivered by the same methods and at the same time as the others.

The last and final group of weapons in the arsenal are drugs known as Targeted Therapy drugs, which are tailored specifically to my cancer’s genetic makeup and are “targeted” to treat it based on its specific features and chemical makeup. In my case, these treatments would not begin for several more weeks, since they are part of a clinical trial, but they will be a very important final component in my treatment plan.

Today’s Infusion

Today’s appointment began at 10am and was over by about 3pm. It consisted of blood work and labs as soon as I arrived at 10am to determine that I was healthy enough to receive the treatment, and they do this each time to ensure that they aren’t unsealing $20,000 worth of medication only to find out it cannot be used. I got the green light and eventually was moved into a spot by the window looking out over Santa Monica. Not the worst view.

As far as the actual “infusion” experience, I must say that it was rather pleasant. Something tells me that it was at least in part due to the several IV bags of fluid that were directly entering my bloodstream, never mind that some of them were basically poison. If I can give any advice to someone who is starting chemotherapy for the first time – go into it hydrated.

Other than that, Mandi and I made a day-date out of it. We packed some snacks and drinks, we found a decent little Mexican restaurant that was within walking distance of the clinic and I’m sure we will be regular customers there.

If only the days to follow could be a fraction as pleasant.

For at least the last two weeks I have struggled to find a good time to post a blog update. Or at least I felt like I was struggling to find time. In reality, the time was not the biggest problem that I was having. See I have lots of time, and I spend a lot of it with visitors , friends, and family who have come to hang out. Or recently I spent a lot of it watching a new show like The Rookie (killed that whole show- all six seasons), or rewatching all of the original seasons of Seinfeld, a show that helped form me as a human being.

The problem that I have, is that my brain doesn’t work in the way that it used to just a few short weeks ago. My ability to construct, deconstruct, substitute, and bend grammar and language into meaningful communications has sadly fallen victim to ever increasing pain medication and prescribed drowsiness. This brings me to an interesting predicament whereby I have information and news to share, but I am lacking the standard delivery vehicle for the information.

Even now, as I type sentences the letters become blurred and increase the rate of mistakes, but then when deleting my mistakes, my thumb presses the “delete” key and I nod off ever so briefly. The unplanned nap is enough to destroy the desired sentence, but sometimes three to five minutes of previous time investment. So many posts have been born and died in this exact manner.

All this is to say that I will be posting more often, in more of a “stream of consciousness” delivery method. So much has been happening so fast, it’s the only way that I can imagine to keep on top of it. You will hear more soon, and hopefully more often!

Following our initial visit with the doctor down at UCLA, we had a second visit scheduled with a more local oncologist here in Oxnard, on Wednesday afternoon at 4pm. We had heard a mixed bag of reviews regarding this office, but feedback was mostly positive, indicating a very competent doctor, with a less than stellar bedside manner. I was open to a meeting, since bedside manner isn’t everything (although it’s definitely not nothing).

Now before proceeding with that story I should let you know that I nearly didn’t make it to this appointment and ended up at the ER instead, but there will be time for that later.

We arrived to the appointment at 3:40pm, right at the requested early time to be able to fill out their redundant stack of medical questionnaires. The documents were standard fare, and easily overcome, but nonetheless annoying. On the other hand, exactly at 4pm, the appointment commenced with the medical assistant opening the little special door allowing access to the back room containing all of the doctor’s offices. At the outset of each appointment, the nurse typically asks that I step on a scale, while simultaneously taking my blood pressure, and sometimes temperature. As someone who has checked his weight almost daily since the days of wrestling in highschool, I knew that the only proper method to this was to be completely nude, or in a pinch wearing nothing but briefs. It should come as no surprise to anyone that I was always slightly uncomfortable with the fact that they were recording a weight that was highly inaccurate and unreliable, varying by as much as 5 pounds depending on the outfit, accessories in pockets, type of shoes etc. Despite my strange personal hang ups, I couldn’t help but to notice even that inflated number climbing ever lower on the scale, today only 195.3. Given the roughly 5lbs or so in weight of my clothing on this day this would put me at a comparative 190lb-191lb “true weight”. Not a normal number for me by any means, and it represented a nearly ten pound weight loss that I had not desired to achieve, but made all the more concerning by the fact that my digestive system was several days “behind schedule” at this point. Once we walked back to the waiting room for the doctor, we got settled into our chairs and began our obligatory wait. Mandi pointed out to me that she had been expecting to sit across his desk from him in his office on for this consultation, rather than sitting in the same room with the paper-covered slide out table that you might if there for an annual physical. I hadn’t realized until she said it, but I was expecting the same. Perhaps we watch too many movies and medical dramas. Finally Dr. PW stepped into the room (name changed to protect the innocent) and introduced himself. He wore a mask, blue medical grade, but not the fancy N95 variety. A tall, Chinese man with dark hair and mild manners, his weary eyes were peeking out over his gold trimmed eyeglasses. He launched into his canned presentation about Chemotherapy vs Immunotherapy, we discussed my particular case a bit, and we asked him lots of questions. Throughout the course of our conversation it became apparent that his tendency was to live a bit on the pessimistic side.

By the end of our meeting, we were discouraged in multiple ways, but determined to find more answers.

Good morning everyone.

This is Mandi. 

Just wanted to post something here since I know the lack of posts is concerning to many. John wants to update everyone as soon as he feels up to it. For now, just know that he’s in good hands and we’re thankful for all the support and prayers. We appreciate it very much. Please keep the prayers and positive vibes coming as we continue on this journey. 

Many thanks, 

Mandi 

It’s the time you wake up to get ready for a doctor’s appointment in Santa Monica. Well, maybe not for a normal person, but by the time you add an hour for pills to take effect, an hour for your now slow-moving self to shower and dress, and two hours to allow enough buffer for traffic through LA.

So now I sit in my navigator’s seat, while Mandi drives my car to meet with the UCLA oncologist for the first time. I have said it before, but a real silver lining of this whole shit circus has been the opportunity to spend so much more time with my wife and best friend. If only it were under different circumstances. I have been looking forward to this meeting for a while now, mostly because I have felt no sense of progress at all since the date of my last failed surgery. Even before that date, I was frustrated that there was no progress being made before the surgery. I am so eager to get together a plan of attack and to be on the offense for once, instead of just playing defense all the time. I’m hoping that this meeting provides that path and some clarity, however difficult it may be.

This past week I have been mostly quiet in terms of posting updates, which is unfortunately due to one overwhelming and oppressive factor – pain. Pain is distracting. Pain zaps your energy and motivation. Pain rewrites your plans for the day. And pain makes you take more painkillers, which puts your brain in a foggy and unfocused state, suitable only to track basic plot lines in old network television series. In my case it’s “The Rookie”, a great series I’m now catching up on. Mandi and I lately have been trying to unravel the enigma that is my pain. It affects me so much worse at some times than others. What is causing it to become worse? Is it too much activity? A lack of activity? The way I’m sleeping? A lack of sleep? How much can be attributed to post-op surgical pain? How quickly should that be resolving? Should I take extra pain medication until getting through this period, or is this my new normal? Each day seems like a new data point in the study, but they are each earned with considerable suffering. We are hopeful that the latest tweaks to medications and daily routine will make things more manageable.

I have another appointment with a local oncologist tomorrow at 4pm as well. Between the two we will come out with a plan to move forward. I’ll update after today’s appointment.

It’s Friday today, and the start of a three day holiday weekend. In normal times, I would be preoccupied by a weekend sales plan, establishing sales goals, and preparing stores and sales teams for a potential busy retail weekend. No need to plan a Labor Day BBQ, a trip out of town, or a weekend beach trip of the weather was nice; I always knew what my plans were.

This year, of course, is different. For once, I won’t be preoccupied with retail holiday concerns, but as fate would have it I also will not be busy with any holiday weekend trips or BBQs. And so continues the theme of the past few weeks, a mix of gratitude for the extra time spent with family and at home, contrasted with a desire to return to normalcy. To work a long holiday weekend means that you’re healthy, and that should never be taken for granted again.

I arrived home Wednesday afternoon, and was glad to sleep in my own bed, to see my kids and put them down to sleep, even for the routine of endless questions from Scarlett at the exact moment she is to go to sleep. Every night, she aims to prolong the inevitable as though she were a death row inmate who has already eaten her last meal. There are things that are more difficult at home, of course. More activities to be involved in, more things to make me tired, or sore. I typically try to be ready to drop the kids off at their school down the street by 8:00am. Sometimes this requires minimal effort, and sometimes the effort is gargantuan. Thursday morning was my first morning back, and I got myself ready in time to take them. Success so far. However, they are still slow to get ready and easily distracted, which resulted in them both making it out the door with no time to spare. No problem, that just means we have to hustle to school, but that ended up being the problem for me. As I urged them to move their little legs faster, I noticed that I was falling behind. I watched as Mandi, Bode, and Scarlett formed a triplet in front of me that became smaller and smaller in my field of vision as they grew more distant. I hobbled faster to close the gap, but became so short of breath I completely ran out of gas. I had to slow my already pathetic pace to a slow walk just to catch my breath. The crossing guard, who we had named Chris Cross years earlier, looked at me with concern (or pity, it’s hard to tell which sometimes) as I got closer. “Are you ok?” he asked. Even if I had possessed the breath to respond I would likely have offered back the same nod and continued on. By the time I arrived to the school, the kids had already gone inside and I had essentially missed drop off. I wanted to be upset with myself for not being able to make such a basic walk, but decided that I deserved a little grace period. It was my first day out of the hospital, after all.

I knew that my body needed to rest, and I was in more pain than normal. My doctors had prescribed me extra pain meds to get me through this period of post-op healing, and it worked but made me very sleepy. I spent a lot of time those first couple of days dozing off in bed or on the couch, and in between existing in a state of waking dream. I ate meals, and rode passenger while Mandi ran errands, or went on a walk with the dogs, but always with the threat of sleep looming overhead. Still, my body has been getting the rest it needs, and I can feel the wounds slowly healing. Good thing too, since I still have a lot of fighting left to do.

Friday was our 11th wedding anniversary, Mandi and I. It truthfully didn’t feel like 11 years to me. In some ways it feels like less, because I can remember our wedding like it was yesterday. In other ways, it feels so much longer than that. For one, Mandi and I have been together since we were 19 years old. While we have been married for 11 years, our relationship is nearly 20 years old, and from very early on we have been the best of friends. The amazing thing about finding someone who is truly a compatible life partner and companion, is that you love them more at the end of 20 years than you did when you fell in love, or even on the day you married them. Love is an interesting thing, that becomes stronger the more hard times you have endured together. You get to see what kind of person you have chosen, and how they will rise to the challenges that life offers, and support you through them. We chose to book a trip to Nashville, Tennessee for our 10th anniversary, and it’s a good thing too. I would never have been able to keep up with that city this year.

We instead booked a quiet, early dinner for two at a local restaurant and had the kids hang out with Faith, Luis, and their cousins. We sat down at a table on the outdoor patio, and ordered drinks. Sauvignon Blanc for Mandi, and a local craft Pilsner for me. I’ve been off of alcohol entirely but thought I would indulge for a night. We perused the menu, while taking in the scenery. One of our favorite all-time couples activities is to pick a group of people that doesn’t make sense, and then try to determine their relationship to each other. Friday’s group was a table of three, a man in his early forties, a woman in her early fifties, and a young lady that could have been anywhere between 17 and 23. The common configuration would have been husband/wife/daughter, but this was not the case. The manner in which he spoke to the young lady did not suggest father/daughter. He was trying way too hard. And very little input from the older woman. Perhaps his girlfriend? Meeting the daughter for the first time? Wait, he mentioned arriving to school late…is he a teacher? Could be the girl’s teacher but, kind of an inappropriate parent/teacher conference. Hmm. “Should we get salads?” Mandi, breaking my train of thought. “Yeah let’s get the Pomegranate Caprese salad and share it?” I risked sharing something with her against my better judgment. It always dumbfounded me how two extremely compatible people could have such little overlap in taste when it came to food. After some back and forth, we decided on two different salads, share a lobster bisque, and then two entrees. Salmon for the lady, and a 14oz ribeye for me. I’ve been trying to get my weight up, but have such a pitiful appetite lately. Our waiter reappeared, “Can I refill your drinks?” His name was Martin, and he looked a bit like a Mexican Mr. Clean, except he a had a moustache and had never seen a gym in his life. I glanced down at my half full beer, and realized that I wouldn’t be finishing it. So disappointing. I gave him the universal “no more” wave and grabbed Mandi’s hand from the table. Even though I was not feeling the best, I was so glad to be with her in this moment. I reflected over what we had accomplished together in the weeks since this diagnosis. A weeklong stay in the hospital, numerous scans, biopsy procedure, attempted tumor resection, post-op recovery, and now the latest victory – insurance approval to see the doctors at UCLA’s oncology department. This was no small feat, as my insurance had initially denied this request; they wanted me to see someone local first. This would have been no issue for me normally, you know, if I didn’t have a rapidly growing tumor living behind my heart. I did not have the time to wait for the normal procedure to take place. With the help of my surgeon’s medical staff, we were able to get a consultation with the UCLA Doctor in Santa Monica on Tuesday, September 3rd. My local oncology consult is the next day, here in Oxnard. By mid-next week, we should have two opinions, two treatment plans, and two options for how to kill this unwelcome guest.

I stared down at my steak, a shameful attempt at medium-rare, even the brandy-peppercorn sauce couldn’t save it. Despite the disappointing quality, I should have been able to eat more than the four bites I was able to get down. My lack of appetite has become obvious, and something I have to pay attention to. I am so used to being careful not to overeat, that this is a strange predicament to suddenly find myself in. Mandi’s food wasn’t any better than mine, and we decided that watching the strange trio eating next to us was the best part of the evening. After 11 years of marriage, I could have a great time anywhere with this woman.

For those of you who have asked about ways to help, my sister in-law Jen asked that I post this contact info on her behalf:

“Meal Train Contacts

A meal train for John and his family is in the works and will be initiated as soon as we know more about his treatment plan and schedule. If you would like to contribute to the meal train, please reach out to:
Jen Freitas (805)320-3224 or
Faith Erickson (805) 512-3486”