Surgery

Edit: this all occurred in 2017, unless otherwise noted

My neuro-oncologist requested an authorization for the surgery at UCSD. However, my insurance was quick to deny the authorization on the grounds that a different “in-network” provider was capable of providing the same service. With everything going on and emotions running high, each little obstacle seemed insurmountable. In my mind, things needed to be moving forward immediately. To my surprise, my doctor told me to go ahead and move forward with whichever neurosurgeon had been approved, then return after surgery for the next steps. It was reassuring, if only slightly, that he felt it best not to waste time appealing the denial from insurance.

As it turned out, the authorized neurosurgeon was fantastic. He immediately made me feel at ease with his calm and comforting demeanor. This surgery was definitely going to carry a bit more risk, as he would be working on or near the motor area that was affected by the first surgery, as well as possibly going into a newly affected area that is involved in cognition. I just kept telling myself no matter the outcome, doing nothing would be far worse. I didn’t really have any options, and that’s a shitty place to be.

Nevertheless, the hurry-up-and-wait continued while I gathered previous medical records and scheduled and underwent additional tests. Finally, after more than two months, the surgery plan was ready, but there was no Operating Room available for quite some time in the future. The surgeon decided to use what the hospital called an “add-on” room. This is one of two smaller ORs set aside for times when the hospital receives trauma, which is a regular occurrence at this particular hospital. I was given two possible dates, with one week’s advance notice, although the specific date would not be confirmed until 24 hours before.

That week was absolutely gut-wrenching. I was doing everything I could to remain calm, yet at the same time rushing to prepare my work for my absence, spend time with my family and close friends, and complete all the little honey-do list items that I had been neglecting.

When it came to the day on which I was expecting the go-or-no-go call, I stayed home from work; there was no sense in driving back and forth. The phone call came while we were walking the dogs.  They asked me to come in “now”– meaning “NOW.” I was a bit shocked as I was expecting a day’s notice, but my headspace was good and I had waited long enough. I sprinted home alone for a last few minutes of private meditation.

Arriving at the hospital for a planned surgery, especially one as important as this one, is quite surreal. I was walking in under my own power, strong seemingly healthy to the casual observer. Yet there was no guarantee of my physical, emotional, or neurological condition after the surgery. I tried hard to not to think about it. That’s the kind of thing that can really get under one’s skin.

My wife and I spent the rest of the morning and all of the early afternoon in a tiny pre-op room. During that time we met with the surgeon, the anesthesiologist, and the intraoperative neuromonitoring specialist. And we waited. Time moved impossibly slowly. My surgeon came to update us on the situation with the OR. Because a current surgery was experiencing complications, we had two options: (1) schedule an evening surgery using a  nursing crew that may be slightly less experienced with “elective,” non-traumatic brain surgery, or (2) wait until the following day and hope the Add-On OR was available.

What may sound like an easy decision was not so easy because I was so ready for things to move forward. While my surgeon sounded confident in his own ability to operate through the night, he worried that the night shift might have a “deer in the headlights” reaction to some elements of the surgery. On the other hand, there was no guarantee that the room would be available, and scheduling a standard OR was still weeks to months in the future. My wife and I both felt that he was pushing to perform the surgery the following day, so we chose to trust him with this additional decision.

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Fun with my whiteboard

Contrary to how calm and prepared I had felt on the first day at the hospital, I just couldn’t get it together the following day. We had already been told that the room was available, but I was unusually nervous. I was also disappointed that I allowed myself to lose that focus which had taken several days to gain.


At this point I’m more or less blank. I know the surgery occurred. My first memory was waking up in the ICU. My head was turned slightly toward the door, away from the window. I could not see my wife, although I knew she was there sleeping. I lay there for what seemed like an eternity. No nurses came or went. No doctors came or went. No machines beeped or buzzed. I was beginning to worry because things were just too quiet–perhaps something had gone horribly wrong and there just wasn’t much anyone could do for me. I wanted to wake my wife, but thinking about the stress she was under, I couldn’t bring myself to do it. I just waited, alone with my fears that I might not even be fully alive, but just feeling the last few bits of consciousness before my what was left of my brain turned off.

Somehow, through the dense narcotic fog, the world began to return.

Day 1: Radiation + Chemo

Edit: this all occurred in 2017, unless otherwise noted

The first day of treatment has been easy–more of a mental exercise than anything; it’s been exactly two months since my surgery and under ideal circumstances further treatment would have started a month ago. But circumstances are rarely ideal, so I’m getting pretty good at going with the flow.

Treatment days start with radiation in the morning, Monday – Friday, and everyday ends with chemo pills. My pill case is absolutely ridiculous–it’s stressful just filling it up.

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Now I’m about one hour from starting my chemo. Figured I’d enjoy some ice cream, followed by Sleepytime tea. Add to those a shower, some light reading, and it should be enough to keep the nerves down. Feeling anxious and hopeful that tomorrow morning I’ll feel no different than I did this morning, and will be one day closer to the end of radiation (6 weeks total), and one day closer to the end of chemo (14 months total).

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Down the hatch and off to sleep…

Day 2: Radiation + Chemo

Edit: this all occurred in 2017, unless otherwise noted

Well I rise up with the sun cause it’s risin’ yeah
Another new day and it’s shinin’
Over that hill outside
Shake the sleep out of your eyes
There’s fun to be had
And we can find it yeah

–Wooster

Happy to report that I slept through the night and woke up feeling perfectly normal. I decided to skip the Zofran (anti-nausea) with my morning meds, but grabbed a week’s supply to keep at work.

After dropping off the kids at VBS, we headed north to radiation treatment. The radiation tech was pumping classic rock on Pandora, which nearly masked the whirring of the machines around me. Pink Floyd, CCR, and it was done. Hell, the Pink Floyd song alone was almost long enough to last through the treatment.

Then back south toward work. Did I mention my wife is basically a slave to driving right now? It really sucks to have to ask for help with every little thing, I guess this is how it was as an early teenager, minus the consideration for other people’s time.

Once at work, life returns to normal. When I’m busy, I lose myself in my work, music usually blasting in my headphones. Other than quick conversations about my recovery and progress, it’s just another day at work, and I’m ok with that.

Around lunchtime, I started to notice a slight uneasiness in my head, not exactly nausea, and not quite a headache, but just enough that I decided to try a Zofran. That seemed to fix me right up and the rest of the day has been fine. No, fine doesn’t cut it, it’s been great. I had a fun dinner with the kids, taught them how to iMessage, FaceTime, and locate each other on their devices, then finished the evening relaxing on the patio at dusk to help us all unwind.

Beer

After nearly 20 years of living in San Diego, I’ve become a bit of a beer geek. And since IPA is as plentiful as the sun, it’s been my go-to for years. No beer is too hoppy or too bitter.

That all changed late in the summer of 2017. We stopped into a local favorite for dinner after a Sunday Funday at The Cove. I ordered a pint of Alpine Duet, a fantastic San Diego IPA. One sip and I knew my taste was ruined. From that day forward all my beer money went to gum and mints to stave off the horrible taste that persisted through each day. But it wasn’t just beer that tasted bad.

Coffee: morning

Water: all day

Beer: night

My whole day now tasted like metallic shit! I read somewhere that chemo often causes the metallic taste and changes one’s tolerance for different acidities. That would explain my newfound love of lemonade and margaritas. It took about 3 months before coffee tasted good again. A few more for water.

It wasn’t until March of 2018 that I regained my taste for beer. And that wasn’t for lack of trying. I’m no quitter, and I kept trying my friends’ beers throughout, but one particular day I had a freshly-tapped Stone Scorpion Bowl while at a coworker’s house doing IT work. It was pure bliss.

My neuro-oncologist thinks my taste issues were a delayed effect of the radiation, rather than the chemo. I’ll never know for sure, but perhaps I’ll contemplate it a bit more over my next Pliny.

Recurrence

Edit: this all occurred in 2017, unless otherwise noted

Twenty seventeen began with a couple of very big surprises. The first one was fantastic. In January we learned that we were (still are, at the time if this writing) pregnant with our fourth child. It was honestly the first time I had been truly surprised upon finding out–the first three just came so easily to us. Despite the larger age gap between the older kids and the baby, we were excited to think about how the experience would be so much different for our girls this time around. Also, our boy wants to be a big brother so badly.

Then, just two weeks later, I received the devastating results from my neuro-oncologist. My most recent MRI showed signs that the tumor was growing back. It hit me like a train. I barely remember the rest of the appointment, but I do recall he laid out a plan to do a second resection, followed by radiation, while also adding chemotherapy. It took all I had to gather enough composure to stand up and walk out of the building.

It was the day I had feared for over a decade. Before I walked out of my radiation-oncologist’s office for the last time in February 2005, I asked him if it was “done” or might I have to deal with it again in the future. He was quite frank and told me it was likely to come back, but it could be one year, 3-5 years,  who knew?

Every day since, in the back of my mind, I’ve worried about when the tumor would return, but I’ve tried to live as though it never would. As I tell people when they ask me if I’m afraid of sharks when surfing–any of us could be hit by a car tomorrow (which is millions of times more likely to happen). You can’t let fear stop you from moving forward, not if you want to find joy in life. Besides, fear and joy are not mutually exclusive. If they were, we’d all be screwed.

The Beginning

At this point I think I need to go back. Like July 2004 back. I was 27, surfing and hiking everyday, mashing around the mountains and desert in my PreRunner, and feeling completely invincible.

One day I felt a weird muscle spasm on the left side of my jaw. The next day I felt it twice–the following day 3 times, and so on, until nearly a week had passed, and it was happening several times each day. The muscle spasms only lasted about 20 seconds, but as the days went on, I started to feel slightly dizzy when they occurred. I made an appointment with my doctor to change antibiotics that I was taking for a sinus infection, just in case I was having some strange reaction.

The morning it all happened, I was driving to the coast with plans to hike down to Blacks Beach for a surf with my regular crew. I remember sitting second in line at a red light, just before entering the freeway, when another spasm started. I knew immediately this one was going to be much stronger than the others, and I managed to get my window down just enough to stick my arm partway out and wave for help.

My next memory was waking up in an ambulance near the accident scene unable to answer simple questions: What city are we in? “Jacksonville?” Who’s the current President? “Clinton?” My answers were coming from a different time in my mind. I distinctly remember how strange that felt.

But before the ambulance could leave for the hospital, the police had a very serious question for me–where should they leave my surfboard? I told them it was too hot for the inside of my truck so it was either the ambulance or a police car. Not long after arriving at the hospital, an officer found me to deliver my board safe and sound. I don’t think the ER gets many surfboards.

Testing began. First a CT, followed by an MRI to confirm. There it was–a tumor the size of a golf ball pushing on my right motor strip, which explained the seizure starting on the left side of my body.

Because I was waiting tables at the time, I had no health insurance, but I had gotten lucky because I was close to Scripps La Jolla when it happened, so that’s where I was assigned a top neurosurgeon. He was very calming and gave me a great prognosis, but the surgery couldn’t be scheduled until I could pay for it. Thus began two months of applying for grants and community benefits, as well as requesting mercy from many of the medical services providers to whom I was already indebted.

Eventually the surgery was approved and everything went well. The surgeon had warned of possible damage to the motor strip affecting my face and hand, but the only thing noticeable was some droopiness in my left cheek. The hospital stay was very short and I was home in about four days. I walked slowly up the stairs from the garage, grabbed my guitar, and headed out to the patio to see if I could still play a bit. Fingers and hands were fine. I was overjoyed.

It’s nearly impossible to explain how much different the recovery was this time around, at least in the beginning. There were some dark and hopeless moments.