“How I went from happily creating and experiencing the life I envisioned to hitting the single biggest roadblock of my life.”
PROLOGUE Part I:
A few days before Black Friday in 2014, my wife Ashley and I both received what appeared to be a routine marketing email from REI, our favorite “toy” store where we are also co-op members. As we had been apt to do so often in the past, we excitedly scanned through the message to see what new coupons and deals were being offered on running, hiking, and backpacking gear. However, this particular email was from REI’s travel subsidiary, REI Adventures, and indicated that they were offering a substantial discount on the May 2015 departure of their nine-day Machu Picchu Inca Trail Trek in Peru – the exact trip that Ashley and I had been dreaming of and talking about taking ever since we met and discovered our mutual passion for travel and adventure. As an added bonus, according to this trip’s itinerary, we would be hiking through Intipunku (the “Sun Gate” of Machu Picchu on the Inca Trail) and getting our first glimpses of the ancient Inca city on May 8th, the day of my thirty-fourth birthday. We couldn’t think of a cooler or more timely way to celebrate my birthday, and it didn’t take much discussion for us to agree that “We only live once,” “There’s no time like the present,” and “We can’t take our money with us when we die, so why keep putting off the life experiences that we truly want to have together?” We decided that this special offer definitely had our names on it and that we needed to act on it quickly since there were limited spots available for that trip, and the special price was only being offered on that one day, Black Friday! Without further hesitation or remorse, we pulled the trigger and instantly dropped a few thousand dollars on what we eagerly anticipated would be the trip of our lifetime six months later, and one big item checked off both of our bucket lists.
Less than two months before the Peru trip, I crossed the finish line of my second-ever ultramarathon, the Mountains-to-Sea Trail 50K at Falls Lake in Raleigh, NC. This was the last of the three trail events that I completed on my way to securing the coveted Category C (all the longest distances) finisher’s jacket for the annual “Tough as Trails” race series that is produced by Bull City Running Company, one of our closest local business partners here in Durham. One short month before that race, I finished my first-ever ultramarathon, the Uwharrie forty-mile Mountain Run, which was at the time the single hardest personal challenge that I had ever taken on in my entire life. I learned a lot about myself through that experience – I learned to what extremes I could push myself both physically and mentally and still come out okay in the end; and I learned just how mentally tough and stubborn I could truly be. Little did I know how important those lessons would become when the first signs and symptoms of a life-threatening malignant brain tumor showed up just a couple of weeks after returning home to North Carolina from our incredible Peruvian hiking and camping expedition.
Our first stop upon landing back home at Raleigh-Durham International Airport was at the construction site of our brand-new house that we had started building in Durham in late 2014. We were so excited and anxious to see how the construction of our house had progressed while we were so far away in Peru, and with our scheduled closing date of Friday, June 26th just six short weeks away, the move into our dream home and the beginning of the next chapter of our life seemed to be within easy reach, a done deal.
Back at work, I was sitting at my desk one day and that’s when it hit me – the single worst headache I had ever felt in my entire life. I never was one to complain much about aches and pains, big or small, but come to think of it over the past couple of weeks I had mentioned to Ashley that I was experiencing some random and notably intense headaches, which even she would agree was a very unusual thing for me to complain about. This time, however, it felt like the worst possible “brain freeze” you could get from eating ice cream or drinking an ice-cold drink too quickly, and it would not let up. I instinctively pressed the palm of my hand into the space above my left eyeball (just below the eyebrow) to help ease the discomfort. In doing so, I unintentionally covered my left eye and was surprised when the grid lines of the Excel spreadsheet that I had been looking at on the computer screen in front of me suddenly “jumped”! What the hell was that?! I covered my left eye again – same weird thing happened again. I then tried covering my right eye and noticed that the grid lines on the screen looked perfectly normal when viewed through my left eye only. After a few more back-and-forths between my two eyes and watching the grid lines “jump” each time, I became fairly confident that what I was “seeing” was actually a “tilting” of the vertical grid lines on the screen, almost as if my right eyeball was slightly ROTATED, much like the volume knob on a car radio. As my now-weary eyes began to wander around my office, I noticed that other vertical features in the room like the door, window frame, and wall calendar also appeared tilted when I looked at them with my right eye only. While trying not to freak out and keep my deeply-rooted and possibly irrational fear of going blind in check, I posited that my headaches were probably the result of some sort of eye problem that my brain was working overtime to resolve, and a healthy dose of eye strain was likely just adding to my general state of discomfort.
After discussing my symptoms and self-assessment with Ashley, I made an appointment with my optometrist for his first opening on the morning of Monday, June 15th, just four days before the closing on our new home. I also picked up a cheap eye patch at a nearby pharmacy so that I wouldn’t have to keep holding a hand over my right eye, because looking at the world with my left eye only (the “good” eye) helped to make my headaches at least a little bit more tolerable. The eye patch, of course, instantly became an open invitation for all manner of “pirate” jokes at work, which only added insult to my injury, but I chose to play along as much as I could, knowing that there was no way that my peers would be able to experience my severe headache pain or bizarre and uncomfortable visual problems and understand just how serious my situation really was; and after all, they do say that laughter is the best medicine!
Back at “the ranch,” the modest apartment that Ashley and I had been living in for the past year while our new house was being built, I noticed that food started tasting differently. For example, one afternoon while I was standing in the kitchen snacking on some organic blue corn tortilla chips, I realized that something was “off”; I was not experiencing the usual rough, grainy texture and salty “zing” of the chips on my tongue the way I was expecting to. Instead, the chips seemed rather bland. Finding myself suddenly in a mild panic, I decided to test out my sense of taste (or lack thereof) on something else – a glass of my favorite dark chocolate almondmilk. I was distraught when I discovered that chocolate, my second-favorite food group behind bacon, was also being affected by my newfound lack of taste as it no longer had the familiar satisfying, rich, creamy, chocolatey flavor that I so loved and craved – it too was bland. I took these curious moments as more signs that something just was not right with me. At this point I became angry and agitated; whatever was messing with my eyes and my sense of taste had just crossed a big red line; nobody (or nothing) messes with my chocolate!!
On the morning of my optometrist appointment, the eye doctor took me through his usual vision exam and determined that both of my eyes looked perfectly healthy to him and that my visual acuity was just as good as ever. He admitted that he had no explanation for why I was seeing the world “tilted” through one eye, and so he referred me to a local ophthalmologist/retina specialist in Durham who conveniently had an opening to see me later that very same day. Ever my taxi driver, Ashley whisked me away to my second doctor’s appointment of the day, and there I underwent a huge battery of exams and tests that included computerized retinal scans as well as some VERY intense, incredibly uncomfortable, and borderline painful flash photography of my retinas (known as fluorescein angiography, and quite possibly one of the most sadistic medical procedures known to man – it is pure torture!) immediately following an intravenous injection of a fluorescent dye. This is a good opportunity for me to pause and mention that I ABSOLUTELY AND POSITIVELY HATE NEEDLES!! I have never enjoyed watching sharp and pointy metal piercing human flesh; that image has always produced a visceral, almost nauseating response deep within me, even more so if it’s MY OWN skin and flesh that is being cut or punctured by a metal implement. When I was a child I would muse that I wanted to be a surgeon someday when I grew up. Yeah, slicing people open with a razor-sharp scalpel and then stitching them up with a big ol’ pointy needle and thread? That was never actually going to happen. Who was I kidding?! I digress…
Ironically, it was this last test, the loathsome fluorescein angiogram, that showed the ophthalmologist exactly what he needed to see: while he agreed with my optometrist that there was nothing patently wrong with either of my eyes, he noted that the flash photographs clearly showed that the entire structure of my LEFT retina (and, by extension, my entire LEFT eyeball) was in fact visibly rotated ever so slightly, just like a car radio volume knob. It is also worth re-mentioning here that this whole time I was complaining about seeing the world tilted through my RIGHT eye. I suppose it was at this point that the doctor felt like he was either in over his eyeballs, or he truly had no clue as to what was wrong with me, and so he referred me to the prestigious Duke Eye Center to meet with renowned neuro-ophthalmologist Dr. Tariq Bhatti. That appointment came just three days later on a Thursday (I guess when you have a case that is either so incredibly interesting or so incredibly life-threatening, you don’t have to wait very long to get in with the best doctors in the world; this point will become relevant again later in the story).
Fast-forward to Thursday, June 18th, 2015, my amazing chauffeur and caretaker Ashley (who up to this point refused to let me drive my own car with severe headaches and a serious, still-unresolved vision problem) drove me to Dr. Bhatti’s office at the Duke Eye Center. There, Dr. Bhatti’s team of residents, Physician Assistants, and technicians repeated literally every single test that the retina specialist had performed just three days earlier (including the F***ing fluorescein angiogram, IV needle and all), and then added a whole host of other tests and procedures that I never knew existed. Several hours later, at the end of the longest, most comprehensive, and most exhaustive eye exam known to man, the neuro-ophthalmologist extraordinaire finally emerged from his chambers and told me and Ashley that I was presenting with a “fourth nerve palsy in my LEFT eye.” For the lay person, this means that one of the motor nerves that controls rotational movement of my left eye (specifically the fourth cranial nerve, or trochlear nerve, which innervates the superior oblique muscle of the eye) was being compromised somehow. Even more interestingly, although I had been PERCEIVING that the problem was in my RIGHT eye this whole time, the problem was actually in my LEFT eye since the brain processes signals from one side of the body in the opposite hemisphere of the brain! While Dr. Bhatti’s diagnosis explained the abnormal rotation of my left eyeball, it still did not explain WHY this was happening to me in the first place, WHY I was still having extremely painful and debilitating headaches, nor HOW to fix any of these problems. He then proceded to rattle off several differential diagnoses, or possible underlying causes of my symptoms: I could have diabetes, some sort of thyroid disorder, a rare condition called myasthenia gravis, multiple sclerosis, a brain tumor, or possibly something else altogether. In order to rule out each of these conditions and solve the mystery of my fourth nerve palsy, the doctor ordered an extensive panel of blood tests (which all eventually came back negative – did I mention I hate needles?) and scheduled me for the first MRI of my life – one week later on Friday, June 26th at 12:00 noon, a date with destiny that just happened to be exactly 5 hours before the long-awaited closing on our new house! This MRI would be of my “brain and orbits (eye sockets),” and was to be done “with and without contrast,” which meant that I would require an IV in my arm (oh goody, another needle!) so that the technician could inject a contrast dye directly into my bloodstream in the middle of the MRI exam.
This is where the story gets weird. As fate would have it, one of my personal training clients at EMPOWER was (and still is) world-renowned neuro-oncologist Dr. Henry S. Friedman of the Preston Robert Tisch Brain Tumor Center at Duke (yes, the one from the recent 60 Minutes episodes about the breakthrough poliovirus cancer-killing vaccine being pioneered at Duke – I specifically remember watching the first episode when it originally aired in March of 2015 and thinking to myself, “Man, that glioblastoma stuff sounds pretty scary… that would really suck to get one of those!”). I inherited Henry as a client one year earlier when another trainer left our company, and little did I know that one day in the not-too-distant future I would become his patient and he would save my life. During the week leading up to my first MRI, I mentioned to Henry during one of our personal training sessions that I was struggling with some strange eye problems, an altered sense of taste, and severe headaches. “You’re a head guy, Henry, what do you make of all this? What are the odds that I have some kind of brain tumor?” I asked. Henry thought about it for a few seconds and replied with, “Five percent. No… three percent. I don’t know – are you having an MRI? If so, give me your written permission to view your medical records and call me after you have the MRI. I’ll look at it with Allan and then I’ll tell you what we think.” (Dr. Allan Friedman is the world-famous neurosurgeon who operated on U.S. Senator Edward Kennedy’s brain tumor back in 2008; Allan performs about eighty percent of all of the brain tumor resections conducted at Duke’s Preston Robert Tisch Brain Tumor Center himself, and is a longtime teammate and friend of Dr. Henry Friedman although they have no familial relation).
On Friday morning, the day of my MRI, Ashley drove me to work as was quickly becoming the new normal for us over the last couple of weeks. I began training one of my “regulars,” a retired nurse whom I had been working with for several years. Apparently I looked REALLY “out of it” and was complaining a little too much about my severe headache for her tastes, because she suddenly declared that her nursing instincts had just kicked in and she couldn’t sit idly by while watching me in such a heightened state of pain and suffering (which she recognized was way out of the norm for me). She demanded that I let her drive me to the nearby Duke Urgent Care facility. I initially pushed back and protested that it wasn’t necessary for her to do that, but ultimately I gave in and consented to her desire to help me because I knew deep down that she was right. After calling Ashley to tell her what was going on and where to meet us, my client-turned-paramedic rushed me to Urgent Care where Ashley was anxiously awaiting us, and the doctor on duty promptly gave me an injection (yes, another needle) of Toradol (a powerful non-steroidal pain killer) in my butt. Honestly, that shot worked like a charm and relieved my headache for several hours until Ashley ferried me to the Duke Regional Hospital Outpatient MRI Department for my previously-scheduled MRI appointment, and I am forever grateful for my client following her instincts as a former nurse and for taking such swift and decisive action to get me the pain relief that she knew I so desperately needed.
At 2:00pm on Friday, just a couple of hours after I first laid down on the MRI scanner table, Ashley and I received the phone call from Dr. Bhatti’s office: the MRI had revealed a “mass” on my right thalamus/brain stem, and they recommended that we head straight to the Emergency Department. Obviously thrown for a loop and pretty shaken up, Ashley and I immediately got on the phone with Henry and told him what we had just learned. Within what seemed like mere minutes on the phone, Henry said that he and Allan had already reviewed and discussed my MRI scans and report. In his usual confident and authoritative, yet compassionate tone, Henry finally said, “do NOT go to the Emergency Department, you’re just going to waste your whole damn day there. You’ve got a ton of swelling in your brain that’s likely causing your severe headaches – I’m calling you in a prescription for Decadron (a powerful steroidal anti-inflammatory drug) right now. I want you to start taking it immediately and over the next several days. I also want you to meet with Allan in his office at 9:00am tomorrow morning so that you can discuss what’s next.” This goes back to my earlier point of having a case that is either so interesting or so life-threatening that the best doctors in the world are willing to see you within a matter of days…
Completely oblivious as to what all of the information we had just learned during the last two phone calls meant for us in the short term and the bigger picture of our life as a whole, Ashley and I got back in the car and she dutifully drove us to Cary, where we were scheduled to meet with our real estate agent at a lawyer’s office for the 5:00pm closing on our brand-new house that had just finished being built earlier that week. (Side note: a big bucket list trip immediately followed by a new house mortgage, brain surgery, and years of cancer treatments does not make for a very solid financial plan – just ask Ashley, a former financial advisor herself…)
The next morning (Saturday) was supposed to be “moving day,” and we had previously scheduled a moving company to pick up all of our belongings from our apartment (including my prized baby grand piano) and transport everything to our new home. However, instead of being there to orchestrate and participate in the move ourselves (thankfully a small army of incredibly selfless and supportive family members, close friends, and coworkers jumped in to help and ensured that the move went off without a hitch in our absence), we found ourselves sitting in front of Dr. Allan Friedman staring at a golf ball-sized tumor in the middle of my brain on the computer screen behind him, and learning that we suddenly had a VERY important decision to make: I could either have him take a biopsy of the mass to find out exactly what it was (by piercing the top of my skull with a very long, thick NEEDLE and navigating it straight down into the middle of my brain to remove a tiny chunk of tumor), or I could go straight into full-on open brain surgery and just have him go ahead and remove the damn thing with his hands and drain all of the extra swelling (cerebrospinal fluid) from my brain, with the main risks being possible paralysis of the entire left side of my body, or death – no big deal. He gave us the night to think it over and get back to him with our decision, a decision that I didn’t realize at the time was literally a matter of my own life and death since my still-crushing headaches were rendering me less alert and attentive than usual. I told Ashley that I only wanted to have one surgical procedure, and if a biopsy showed that the whole mass would need to be removed then I would have to go back in for surgery anyway, which meant two procedures. I figured that whatever was growing inside of my head wasn’t supposed to be there in the first place, so I told her that I preferred to just get it taken out the first time.
We called Allan with our decision the next morning, and just three days later on Wednesday, July 1st, Allan was cutting my head open in a surgery that I was later told no other neurosurgeon in the world would have attempted because it was so risky with the tumor being attached to my brain stem; anyone else would have simply deemed it inoperable and just given me X number of days to live. I also learned later that Allan’s performance was essentially “flawless,” as he had removed as much of the tumor as humanly possible without paralyzing or killing me. However, he did mention in a meeting with my family immediately after the surgery was complete that he was ninety-nine percent certain that the mass he had just removed from my brain was malignant; that is, I had cancer (I was also told later that this crushing news hit Ashley like a ton of bricks and she instantly broke down into hysterics, which completely broke my heart). When the pathology report was complete five days later, Henry scheduled a meeting with us and we were told that my tumor was classified as a Grade IV Glioblastoma Multiforme, the most aggressive and deadliest type of all of the solid brain tumors, the very same one that haunted me from the 60 Minutes episode I watched back in March. Fortunately for me, Henry was “taking this one personally,” and he already had a plan for me: whatever microscopic bits of malignant tumor cells that were left behind during surgery would be blasted into smithereens with radiation, chemotherapy, and some new experimental immunotherapy treatment that I was lucky my particular type of tumor qualified me for. Yay!! Thank you Henry!! Henry was also sure to caution us that, “whatever you do, do NOT Google this. There is a lot of misinformation out there that will probably freak you out unnecessarily.”
Again, Ashley and I had NO idea what all of this new information truly meant for our life over the coming days, weeks, months, years, or even the rest of our lives for that matter. The ramifications would come quickly and furiously, and they are still being felt to this day. They manifest in the ways that we have to plan our monthly calendar around my now-quarterly (formerly bi-monthly) follow-up MRIs and oncology return visits, the seemingly never-ending medical bills (we instantly hit our yearly health insurance deductible after my first MRI every year), and the effects of two straight years of chemotherapy drugs coursing throughout every part of my body on our desire and ability to start the family that we envisioned to complete our new home. In my July 2016 Endurance Magazine article, I likened this to feeling “like somebody took an entire season of my life away, and signed me up for the longest, hardest trail race of my life without a (course) map.”
(You can read the entire article here: http://magazine.endurancemag.com/HTML5/Endurance-Magazine-LLC-Endurance-Magazine-July-2016)
(For more perspective on my road to brain surgery, read “That Fateful Day in June” here: http://becomepowerful.com/2017/12/15/fateful-day-june/)
(A note about the photo accompanying this blog post: This shot was taken at the top of Huayna Picchu, an incredibly steep mountain peak that famously overlooks the entire city of Machu Picchu. The hiking trail that spirals up and around Huayna Picchu up to its summit is known as one of the most dangerous hiking trails in the world due to its sheer cliff drop-offs all along the entire trail, along with the trail itself being so narrow that hikers must hike in single file, and oftentimes while shuffling sideways along the adjacent cliff face. Fortunately, there are also cables bolted into the rock that hikers can hold onto for an added measure of stability and safety. To make our Peruvian adventure even more special and memorable, our amazing team of local guides surprised me with a freshly-baked birthday cake at dinner on my birthday, and it even had the REI logo and “Feliz Cumpleaños Nestor!” written on top in icing! Clearly dumbfounded by how they were able to bake and decorate a cake for me literally in the middle of nowhere on the side of a trail in the Peruvian Andes mountains, our head guide jokingly explained that one of the porters always brings a microwave with him just for such occasions.
At the time, our trip to Peru was the most amazing and fulfilling trip that Ashley and I had ever taken together; it definitely got us hooked on the concept of the “adventure trip” and left us wanting more. In Peru we also had the good fortune of making several new friends within our trekking group, and we would all frequently muse about which REI Adventures trip we wanted to take next together; trekking to the top of Mount Kilimanjaro, the world’s tallest freestanding mountain) in Tanzania, Africa (with an added safari to boot!) was near the top of everyone’s list.
Read more about that trip in “Nobody is Guaranteed Tomorrow” http://becomepowerful.com/2018/04/02/nobody-is-guaranteed-tomorrow/
Some of those same friends have become very close to us in the years since, have been very supportive of us during our brain cancer journey, and have even met up with us on other brief excursions around the country (including in Durham, North Carolina for the Angels Among Us 5K; in New York City to celebrate Ashley’s birthday; and even in Kona, Hawai’i on our vacation!)