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.

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s