26Sep

Keeping the Dream Alive

September 26, 2019 nestorbecomepaonessa 17

Epilogue Part I

“How brain cancer compelled Ashley and me to seriously examine, consider, and re-frame our future plans and dreams. Then PREPARE for them.”

Sperm.

Lots of sperm.

Now that I have your attention…

As we all should remember from high school biology and sex education classes, in order for a new human life to be created a wriggly, tadpole-like sperm cell typically has to swim up to a ready and waiting egg cell, slam head-first into it and, “BOOM!” Life! USUALLY, this marriage of sperm and egg is the result of an unplanned, romantic, and passionate encounter between two willing partners; a truly intimate dance and epic game of chance wherein the male sex partner deposits literally millions of sperm cells directly into his female partner’s vagina.

Here, these foreign invaders begin to swim furiously upstream while fighting an uphill battle against a formidable immune system opponent within the vagina’s extremely hostile environment. Each individual sperm cell jockeys for position as they elbow and muscle their way through the narrow choke point of the cervix and enter the wide open world of the uterus – the “Promised Land.” It is in this grand arena that the peloton of millions of sperm cells will make its final approach towards the Fallopian tubes where a (usually) single ovulated egg, or ovum, awaits fertilization. Out of the massive horde of spermatozoa, one and only one will cross the ovum’s membranous finish line first and earn the right to join its twenty-three chromosomes with those of the egg and form a complete unicellular zygote. To refresh your memory, this zygote will then begin to divide and subdivide itself over and over again through the process of mitosis to become a cluster of human cells known as an embryo (check out the photo attached to this blog post to see Kai Amani Paonessa as an embryo in a petri dish – his first official baby picture!).

Now, what if the male sex partner cannot produce ENOUGH sperm cells to overcome the vagina’s nearly impenetrable immune defenses such that at least one lucky spermatozoon will have a fighting chance at egg-fertilization glory? What if there ARE enough sperm, but they simply aren’t HEALTHY or STRONG enough to complete the long and arduous journey ahead? (“Damaged goods,” as I like to call them, sardonically.) These are just some of the questions that I was faced with on July 13th, 2015 – the day that I was diagnosed with brain cancer.

When Ashley and I first started dating in the summer of 2009, we had many of the typical “getting-to-know-you” conversations about our hopes and dreams for the future and our individual visions for our lives. Fortunately for us, we aligned perfectly on several key points: we both wanted to get married, build a home, start a family, and travel and experience the world. Knowing that there was a very real possibility that my brain tumor’s pathology report could reveal that the tumor was malignant in nature and that I could be faced with the prospect of cancer treatments of unknown type, intensity, and length, Ashley was prepared to ask my neuro-oncologist, Dr. Henry Friedman, some hard questions about what this all would mean for our plans to start a family in the near future, questions that had not yet even crossed my own mind as I still was not completely attuned to what exactly was happening in my life.

What potentially damaging and negative consequences could or would these potential treatments have on my own fertility and ability to father a child, and would we need to do something radical like collect and freeze some of my currently healthy sperm before it was too late?

Thankfully, Henry was already one big step ahead of us; as we sat across the table from him at the Preston Robert Tisch Brain Tumor Center at Duke, he seriously recommended to us that we bank some of my sperm while it was still clean and I was not yet undergoing any kind of chemotherapy treatment, “just to be safe” in case we were planning to get pregnant post-chemo. At that moment in time, the two of us relatively young thirty-four year-olds could not believe that we were actually having to have this conversation about whether or not we should bank sperm because one of us was about to embark on an unanticipated and uncharted journey through cancer treatment. Henry’s nurse practitioner went ahead and scheduled a consultation appointment for us at the Duke Fertility Center for the following week, an appointment that we simultaneously dreaded and regarded as one of the most important that we might ever have.

At the Fertility Center we found ourselves having some rather lengthy discussions with several staff members about the various components of the sperm banking process. First, we met with a financial specialist who laid out for us the up-front costs of collecting, testing, and packaging my sperm samples; ongoing annual storage fees for the freezer/storage facility that they contracted with somewhere in Florida; shipping and handling fees to get the sperm samples there safely; and insurance fees should something happen to the samples en route to the storage facility or AT the storage facility (think “loss of power to the freezer during a major hurricane in Florida,” which actually DID happen at one point, but that is a story for another time). Oh, and “spoiler alert,” none of this was going to be cheap!

Next, we met with a legal specialist who had us sign so much paperwork that you would have thought we were taking out a second mortgage and buying another house! In reality, these documents addressed legal and ethical issues related to the sperm specimens, issues such as who would have the power of attorney over them should something happen to either myself, Ashley, or both of us before we get the opportunity to use the sperm ourselves, and what should be done with the specimens in the event that we should both perish – should they be donated to someone else who is trying to get pregnant, or should they simply be destroyed? Who knew that freezing your own sperm could be so complicated?!

Last but not least, we met with the “logistical” specialist who presented us with options for the actual collection of my sperm: I could either go into the clinic and do it the classic TV way, in a small room with a stack of Playboy magazines and a cup; or I could get the “home collection kit” and do it in the privacy of my own home. Being the relatively modest and private person that I was at the time (clearly, a lot has changed since then), I opted for the latter, not realizing that it was not going to be as fun and easy as it sounded. Per the collection kit’s instructions, after masturbating into the provided clear plastic screw-top cup, I was to immediately put it on ice in a cooler, get in the car and drive the goods back to the Fertility Center within forty-five minutes of ejaculation. Never in my life had I been forced to masturbate under duress!

This was… different. It is surprisingly difficult to get into and maintain the “right” mindset for this task when you know that you’re “on the clock”; this is no longer a relaxing and pleasurable experience, but rather a monumental task. Our future prospects for starting a family and fulfilling one of our big life goals as a couple was suddenly hanging in the balance. It was then my great responsibility, my PURPOSE, and my JOB in that very moment, to jerk off into that plastic cup if we were to have any real hope of fulfilling our dream of starting a family in the future. No pressure.

One week later we received a phone call from the Fertility Center; the sperm I submitted tested perfectly for motility and numbers – they were strong little swimmers, and there were plenty of them! (Yaaayyy, Gold Star!!) A total of nine specimen vials (this number will become important in a later blog post) were filled, packaged, and prepared for their upcoming vacation of unknown duration in a freezer in Florida. Oh, sweet irony…

14Jun

Facing My Fears

June 14, 2019 nestorbecomepaonessa 16

Prologue Part IV

“How brain cancer forced me to confront all of my greatest fears in life… all at the same time.”

Aichmophobia: the morbid, irrational fear of sharp and/or pointed objects. Included in this genre of phobias is “needle phobia,” which is a self-explanatory term that is actually used in medical literature. If you have been keeping up with my past blog posts, you may remember me mentioning my (completely rational) fear of needles on several occasions, but believe it or not, needles are really one of the LEAST of my fears…

Let the record show that I am NOT claustrophobic, so at least I have that going for me. I have heard that this can be a very real problem for some people when they are confronted with an MRI machine, which I can totally understand. If you have never been inside of the narrow, tube-shaped chamber of an MRI scanner, it is akin to the “Fenix” rescue capsule used in the 2010 rescue of the thirty-three miners from the collapsed Chilean copper and gold mine in the Atacama desert. As you may recall, the rescue involved the drilling of a hole in the ground that was over two thousand two hundred feet, or almost half of a mile deep, and only less than two feet in diameter (barely shoulder-width for the largest of the miners)! Just like an elevator, the rescue capsule was lowered all the way down into the mine through the narrow shaft. Then, one at a time, the trapped miners entered the capsule and were pulled out of the hole to safety back on the surface. Granted, it is much easier to be rescued from an MRI scanner (all you have to do is squeeze the little rubber bulb that the MRI technician puts in your hand, and they will come running and pull you out immediately), but I imagine that the feeling of claustrophobia induced from being inside of an extremely narrow shoulder-width tube with nothing but a solid wall just inches from your face would be similar in both cases. Even with my head strapped down to the MRI table to help keep it still during the scan (which, coincidentally, is the absolute BEST way to get your entire head and face to instantly start itching), I can at least look downward and see the lower half of my body sticking out of the tube’s opening. After the more than two dozen brain MRIs that I have endured since my very first one on the twenty-sixth of June, 2015, I can say definitively that I have never felt like I was “trapped” inside of the machine, nor have I become panicky. Honestly, the hardest part of the whole thing is trying to ignore all of the itching and keep my head perfectly still for about half an hour straight.

Speaking of having my head strapped down to a table to keep it from moving, my radiation therapy experiences were much like those of the MRIs, except with a lot more at stake if I were to inadvertently move my head. If I ever moved my head during a routine MRI scan, some of the resulting images of my brain could come out blurry and unusable, in which case the MRI tech would likely want to repeat that part of the scan (i.e., more time itching and trying to keep perfectly still in the scanner). In contrast, if I were to move my head during a radiation treatment, a healthy portion of my brain could get blasted with potentially damaging beams of high-energy X-ray radiation with unknown long-term consequences for my physical and cognitive well-being. That would be a very big, “OOPS!” It was for this reason that, prior to beginning the actual radiation treatments, a hard plastic mesh radiation “mask” was custom-molded to my head and face (see the photo accompanying this blog post), which would later be used to attach my skull to the treatment table for each and every radiation treatment session.

My radiation treatment appointments took place at the Duke Cancer Center’s Radiation Oncology Department on a DAILY basis for six and a half weeks straight, concurrent with my first-ever round of Temodar, a mid-level dose of a daily oral chemotherapy pill (coincidentally, this was also concurrent with my first-and-only six-and-a-half-week-long free valet parking pass to the Cancer Center, a brain cancer “perk” that saved me an average of eight dollars per day, but I digress). While the actual radiation treatments involve a completely different machine and set of procedures from those of an MRI, the overall care and patient experience provided by the technicians and nurses is very similar and reassuringly familiar; all of the medical staff members are incredibly compassionate, accommodating, and downright nice people. In both the MRI and radiation oncology settings, the staff goes above and beyond to make sure that patients are as physically and mentally comfortable as possible on the table, what with all of the amenities that they provide; little touches such as wedge-shaped leg cushions to prop your knees up; blankets that are actually warmed up in an oven-like warming cabinet (since medical facilities tend to keep their indoor temperatures fairly low to inhibit bacterial growth); and to help drown out the incredibly loud and obnoxious sounds of the MRI machine, the tech will even give you foam earplugs and/or headphones that can play your choice of Pandora music station (I always request to listen to the Smooth Jazz station because it helps me to relax, and sometimes I can even fall asleep for a good portion of the noisy MRI scan, which I always imagine is what it would sound like to be trapped inside of the engine compartment of an old diesel John Deere farm tractor as it grinds its gears). In the radiation treatment room, the techs will also give you a little foam “steering wheel” to hold onto to keep your hands busy during the radiation treatments; a seemingly pointless, silly thing that actually played a large role in distracting me from the uncomfortable monotony of fifteen to twenty minutes of laying on a hard, cold metal table with my head strapped down to it. Every day. For forty-five straight days. Fun!

The radiation therapy machine is an incredibly complex and very impressive piece of technology with its 3-D computer-generated mapping of the treatment field inside of the brain, multiple built-in CT scanners, and laser-guided robotic arm that ensures that the radiation beams are always perfectly aligned with their intended target deep inside the middle of my head. Just like with my MRIs, the radiation techs also thoughtfully outfitted me with a set of headphones so that I could listen to my choice of Pandora radio station. The headphones definitely helped to muffle the clicking and whirring sounds of the radiation machine, which were nowhere near as grating and penetrating as those of an MRI scanner, but the aural distraction while I was laying on the hard metal treatment table was welcome nonetheless. Over time the techs learned my preference and would queue up the Smooth Jazz station without me even having to ask for it, and on some days it was already playing through the room’s speakers as I walked in (some people think that smooth jazz music is boring and should only be played in elevators and doctors’ offices, or when you are “on hold” on the phone, but I think it is incredibly relaxing, chill, and just plain awesome).

During my daily radiation treatments I found myself spending a lot of time just laying on the treatment table doing essentially nothing, and so my mind had plenty of time to wander. I would frequently imagine that there was an old-school game of Atari Space Invaders going on inside of my head, and I would visualize the radiation beams (a.k.a. laser beams) blasting the little green aliens and their spaceships (a.k.a. my tumor cells) to smithereens. With the help of my newfound video game visualization techniques, I was able to convince myself that I WANTED to complete these treatments because they were only going to help me to beat this disease. Over the two straight years that I ultimately ended up taking oral chemotherapy, I developed the same attitude towards those little pills of poison as well – I WANTED to take them because they were actually shrinking my tumor, as evidenced by a series of MRIs. I even got to the point where I refused to give in to the extreme nausea I experienced while on high-dose chemotherapy because I was not willing to vomit out and lose the crazy-expensive medication/poison that was saving my life.

Now, for the real subject matter of this blog and the moment you have been waiting for: what, in fact, ARE my greatest fears? Like any normal person, I have many fears; some are really big and completely rational in my mind, while I acknowledge that many others would be considered insignificant and inconsequential to most other people. However, my two greatest fears, as anyone who really knows me (i.e., Ashley) will tell you, are: 1.) going blind, and 2.) dying.

I am afraid of losing my eyesight because I believe that a vast majority of my human experience on Earth is visual, and I just cannot fathom not being able to see all of the things that are beautiful and meaningful to me in this world. In nature, these include lush green forests with their diverse plant species and seemingly infinite palette of colorful flowers in the spring, and whose leaves turn to blazing shades of orange and red in the fall; crystal clear, turquoise, and deep blue oceans teeming with colorful fish and coral reefs, and with waves lapping against brilliant white sand beaches; rugged, dramatic, and snow-capped mountain ranges, valleys, and canyons; dramatic sunrises and sunsets contrasting against the bright blue daytime sky with fluffy white clouds that turn to pastel shades of orange and red, sometimes even reflecting off of the ocean horizon if you’re lucky enough to be at the right place at the right time; bright and sparkly constellations of stars, planets, and galaxies contrasting against the dark night sky; and unique and interesting landscapes and wildlife all around the world. In the civilized world, these include the people who are most important in my life, my family and my friends, but none more important than my wife Ashley and our (as of this writing) five month-old infant son Kai Amani.

I am afraid of dying for many of the same reasons why I am afraid of going blind; because dying would effectively render me blind to and unable to interact with all of the people and things that I love most, the most important of which are Ashley and Kai; the thought of not being able to share in life with them anymore, to look into their eyes, hold them, kiss them, hear them laugh, see them smile, or to love them anymore is more than I can bear. I am also fearful of what the actual processes and sensations of dying feel like; if it is excruciatingly painful physically, excruciatingly crushing mentally and emotionally, and who really knows what else? I do not have a problem with the principle of dying; I understand and accept the fact that none of us gets out of this world alive and everybody dies, but I am certainly not in any hurry to get there, nor am I looking forward to it.

In my previous blog post, “It’s Official: I’m a Cancer Patient,” (https://becomepowerful.com/2019/03/25/its-official-im-a-cancer-patient/) I described how the damaging effects of the radiation treatments essentially burned holes through my scalp, killing hair follicles and destroying who knows what else en route to the target brain tumor cells, thus causing my hair to fall out in very distinct oval-shaped patches. Well, as the days and weeks of radiation treatments wore on, I would discover more “fallout,” or collateral damage presumably from the radiation: a new vision problem, but one that was much different from that which had led to the discovery of my brain tumor just four months earlier. Unfortunately, I cannot recall the exact moment when I first noticed that objects in the right half of my visual field suddenly started to disappear, but when Ashley and I mentioned this significant new symptom to my radiation oncologist at my next appointment and asked him for an explanation, he would not (or could not) give us a straight answer. At that point, things started to become tense. In what seemed like a sudden fit of tear-filled rage, Ashley stood up out of her chair, looked the doctor in the eyes and said, “Look, doctor, two of my husband’s greatest fears in life are going blind and dying, and right now he is facing BOTH of those at the same time!! So you tell me, what the hell is going on with his vision right now?!” Clearly caught off-guard by Ashley’s harsh and urgent tone, he responded defensively with, “Mrs. Paonessa, I promise you I’m not trying to ruin your husband’s eyesight…” He then went on to admit that my new visual deficit COULD be a result of the radiation treatments because such a large area of my brain was getting irradiated, but he was adamant that my eyes and optic nerves were NOT in the treatment target area, nor were they in the path of the radiation beams. He suggested that the problem could be a result of new brain inflammation (swelling) caused by the radiation, which was a normal side effect and a trade-off for killing cancer cells, and that only a new MRI would be able to show what was going on inside of my brain, if anything. The doctor also explained that an MRI scan conducted in the middle of the six-and-a-half week radiation cycle would most likely look very “messy” because of all of the new radiation-induced inflammation in and around the areas being treated, suggesting that such an MRI might not show us anything meaningful and could be a waste of time and money; but he was willing to order the new scan if that was what we really wanted. Ashley and I demanded that he order the new MRI immediately, to which he sheepishly obliged.

A few days later, I completed the contentious mid-radiation MRI, and I was scheduled for a follow-up appointment with my neuro-ophthalmologist Dr. Tariq Bhatti at Duke Eye Center who, if you recall from “That Fateful Day in June” (https://becomepowerful.com/2017/12/15/fateful-day-june/), was the doctor whom I credit with discovering my brain tumor in the first place (and setting into motion the chain of events that ultimately saved my life) after he ordered my first-ever brain MRI. Dr. Bhatti shared with us the results of my new MRI, which had been corroborated with my radiation oncologist who ordered the scan: as expected, the scan did look very “messy” with new radiation-induced inflammation all over the place, but they could not find a “smoking gun”; nothing in the scan indicated that any critical optical/visual pathways or structures were being compromised by swelling or a new tumor, and nothing looked obviously “damaged.”

After an additional panel of visual testing to confirm my visual deficit symptoms in his office, Dr. Bhatti concluded that I was presenting with a condition called “homonymous hemianopsia,” or “half-blind in both eyes.” He said that the visual data or information for the right half of my visual field from both eyes was getting lost somewhere along the way from my eyeballs to the visual processing centers in my brain, and that it was likely that degenerative changes somewhere within my brain resulting from the radiation treatments were the cause. What does all of this mean? It means that whenever I am using my eyes, even to this very day, when an object passes from left to right across the midline of my visual field, it sort of disappears into the “ether” on the right; it is almost like an instant transition from looking through crystal clear glass to looking through frosted glass. It is really hard for me to describe this phenomenon otherwise, so just Google it if you want to see an example of what this visual deficit looks like (ironic, I know). All of this, of course, begged the questions: “What are we supposed to do about it?” and, “Will it get any better?” To which the consensus response from both doctors was, “Nothing that we know of since we don’t really know what the problem is,” and, “We’ll just have to wait and see… we think that it will probably resolve on its own.” The hard-learned lesson for us in this episode is that nobody really knows what the actual extent or manifestation of the damage from irradiating such a large portion of the brain is going to be from one patient to another, nor does anyone know if that damage can even be repaired at all, and much less how long it takes for the brain to repair that damage. I guess we will just have to “wait and see.” Great. Who knew that the old adage, “Time heals all wounds,” could be considered sound medical practice?

Apart from the stress and inconvenience of having to travel to the Cancer Center every single day for six and a half weeks (excluding weekends) and the cumulative overall fatigue that the radiation was causing me, the single most uncomfortable part of the experience was unequivocally the damn hard plastic “mask” with its sharp-edged plastic mouthpiece that hooked under and behind my upper front teeth on which I felt like I could easily slice my tongue open. With my head sandwiched inside this contraption and clamped to the treatment table, there was virtually no way that I could move my head during each fifteen-to-twenty minute treatment session, and my resemblance to Hannibal Lecter in Silence of the Lambs was uncanny! On the day of my last radiation treatment, the awesome techs presented me with my vile, hideous radiation mask inside of a handy-dandy Duke Radiation Oncology canvas tote bag, which I then proceeded to get each of the techs to sign for me. It currently occupies a prominent spot in our attic, warding off monsters, demons, and cancers alike.

… But back to my fear of needles. Some of the most harrowing experiences with needles that I have ever had in my life were part and parcel of the experimental immunotherapy trial that I was fortunate enough to qualify for at the Duke BTC. The first of these experiences involved a five hour-long procedure called leukapheresis, which is essentially a blood-spinning procedure intended to harvest white blood cells (very similar to what people go through when they donate platelets), but in my case the research team was after a very specific type of white blood cells; dendritic cells that would be modified somehow in a lab such that they could be made to seek out and “mark” my specific type of brain tumor cells, which would then stimulate my own immune system to “see,” attack, and destroy any remaining cancer cells. Cool, sign me up!! Personalized vaccines would then be manufactured from the modified dendritic cells, which would later be given back to me as a series of injections in my groin at THREE separate appointments over the following three months… wait, what?! Injections WHERE?? SERIOUSLY??!! NOT cool!!

The needles I was stuck with for the leukapheresis procedure were some of the longest, thickest needles that I have ever seen – these things were like PIPES! I didn’t know they even made needles that big, much less that you could actually puncture a human vein with one without the person bleeding out and dying! Nonetheless, when the time came a nurse slowly pushed one extra-large needle into a vein on the inside of each of my elbows while my amazingly supportive wife Ashley stood beside me to hold my hand for comfort (she then stayed in the room to keep me company for the next five hours; I am pretty sure she read an entire book while I tried to sleep). Once the procedure started, my blood began to flow from my body out of one arm, coursed through several loops of clear plastic tubing, and entered the blood spinning machine where only the white blood cells were removed. The rest of my blood (red blood cells and plasma) then returned back to me through the other arm in a continuous cycle. Frustratingly, five hours of laying motionless in a hospital bed with monster needles shoved inside my veins while watching my own blood leave and return to my body, resulted in just the TINIEST amount of clear white blood cell fluid being deposited into a plastic bag hanging from the IV pole behind my bed. If I had to guess, I would say that it was MAYBE a couple of tablespoons of liquid. That’s it?? I just spent FIVE HOURS with GIANT needles sticking out of my arms for that little bit of liquid?? This shit had better work!! The plastic bag was then placed into an insulated lunch box by a technician and presumably taken to a lab somewhere for processing. I then thought to myself, “Dude, you better not lose that bag – that’s LIQUID GOLD right there!!”

Now for the interesting part… did somebody really say GROIN INJECTIONS? Why yes, yes they did. The tiny bit of dendritic cells collected during the leukapheresis procedure yielded enough dendritic cells for the research team to manufacture just three doses of my personalized vaccine (my understanding is that if they had collected enough cells to make more doses, they would have done so, but according to the strict procedures for this phase of the trial they were only permitted to make as many vaccine doses as they could from one single harvesting of dendritic cells, and so it was what it was). Once per month over the next three months, Ashley and I arrived at the Duke Cancer Center’s research wing to receive my vaccine injections. In the treatment room, a nurse who was as kind and compassionate as she could possibly be entered the room, explained the impending procedure to us, and then asked me to drop my pants and sit spread-eagled on a special recliner chair in the middle of the room (apparently she was one of only two or three nurses tasked with administering these experimental vaccines to the trial subjects over the past year, so she knew a thing or two about how to properly inject somebody in the groin). With Ashley once again by my side to hold my hand when the needle approached, the nurse injected the vaccine underneath the skin of one of my inner thighs, instantly causing an intense searing/burning pain as she pushed the liquid through the syringe; it may as well have been a red hot poker straight out of a fire! Much like a tuberculosis vaccine, the injection produced a “bubble” of liquid underneath the skin that would absorb and shrink back down over the next day or two. I was then left to lay in the reclining chair for about an hour after the injection to give it a chance to absorb, and for me to get over the intense pain, which DID go away… eventually. Ashley, of course, was always by my side patiently waiting with me and making sure that I was warm, comfortable, and staying hydrated; and always being my advocate with the doctors and nurses.

As another patient who received the same type of immunotherapy vaccine as I did once told me, it was one of the only treatments we would receive as brain cancer patients that was not some kind of a poison or radiation beam that could cause collateral damage. This vaccine was literally our own immune cells that were modified somehow in the lab (the exact science behind all of this is way beyond my comprehension, but I get the general idea), and as such we had no reason to worry if our bodies would reject it or otherwise react adversely to it; no reason to be skeptical of what it might do to us. The worst case scenario was that the injection sites in my groin might become red and itchy for a short time, and/or the vaccine just might not do anything at all. Only time would tell…

Oh, and in case you were wondering, I was told that the rationale for receiving the vaccine injections in the groin was because of the presence of certain lymph nodes in the area that could readily absorb the vaccine contents and shuttle it directly up to where it needed to go in the brain via the lymphatic system’s vessels, like some sort of specialized transportation highway or an elevator. Who knew that the path to the potential cure for brain cancer was through the crotch?!

25Mar

It’s Official: I’m a Cancer Patient

March 25, 2019 nestorbecomepaonessa 20

Prologue Part III

“How brain cancer taught me how to shift, adapt, and roll with the punches.”

Brain surgery was immediately followed by one solid week of “recovery” in the Neuro-Intensive Care Unit. I don’t know if it was all of the drugs they had me on for preventing seizures, blood clots, and pain, but I don’t really remember a whole lot of details about that particular week of my life; it was all quite literally a blur to me since my vision still wasn’t quite back to normal. It wasn’t until another week after my discharge on Monday, July 13th 2015 that I would receive my official diagnosis.

Me, Ashley, and our two mothers arrived at the Preston Robert Tisch Brain Tumor Center (BTC) at Duke early that morning for an appointment that we anticipated would be with my oncologist, Dr. Henry Friedman. We assumed that he would necessarily be the one to address our anxious family and deliver the report of what had been growing inside of my head, good or bad. Instead, however, one of his P.A.s sauntered into the tiny conference room where we sat waiting for whatever was going to happen next. The young female Physician’s Assistant, clad in her long white coat with a stethoscope draped around her neck, gazed at her clipboard as she sat down at the head of the small rectangular table at which we were sitting. She then went straight into her spiel in a slightly nervous, yet measured tone of voice: “Mr. Paonessa, your brain tumor pathology results are in. Your tumor tissue sample is consistent with a Grade IV Glioblastoma Multiforme.” Wait… I have WHAT?! A Grade IV GBM?? That’s the really BAD one from the 60 Minutes episode, right? As in… BRAIN CANCER?? “Yes, it is one of the most aggressive types of brain tumor. Yes, your brain tumor is highly malignant. Yes, I’m afraid you do have brain cancer. Dr. (Henry) Friedman wants you to know that he already has a treatment plan in place for you and that we are going to do everything we possibly can to help you overcome this…” I’m pretty sure I didn’t hear much of what she said after “you have brain cancer.”

Life for the Paonessa family instantly took a very sharp turn off of the straight and narrow road that had characterized it right up until this very moment. What were we supposed to do now? It was time for us to accept that our life as we knew it and wanted it to be was going to be different. We would have to SHIFT our vision for our life to accommodate our new circumstances; SHIFT into another gear, continue moving relentlessly forward, and see where this new road was going to take us.

(Side note: I suppose Henry opted not to deliver the crushing news himself because of the relatively close personal relationship that we have as friends, me as his personal trainer and he as my client, but to this day I have never talked to him about that moment. Some things are just better left alone.)

Right after that bombshell hit me and my family, there was a light knock on the door almost as if on cue. Henry entered the room wearing his signature white DUKE hoodie and blue jeans, arms outstretched and proceeded to give me, Ashley, and our now-grieving mothers each a big, warm, comforting hug. He then said, “Whatever you do, do NOT Google this. There’s a lot of misinformation out there and I don’t want you worrying unnecessarily. Everything’s going to be okay; I have a plan for you and today you’re going to meet with several members of my team who are going to help you get ready for the next steps. I don’t want you to think, ‘TREATMENT;’ I want you to think, ‘CURE.’”

Even though I wasn’t supposed to think, “TREATMENT,” treatments began in earnest; Henry Friedman and the Preston Robert Tisch Brain Tumor Center (BTC) at Duke didn’t waste any time. Immediately after Henry left the room that morning, his Nurse Practitioner walked in and escorted us to another room where a social worker was waiting to talk to us about available services and programs for newly-diagnosed cancer patients and their families, including local support groups and psychotherapy, which I would take full advantage of later.

We were then shuttled to another room where a specialized financial consultant awaited to address any billing and insurance concerns that we had. In yet another room, the Brain Tumor Center’s own pharmacist was waiting to discuss and answer our questions about the specific chemotherapy drug that I would be taking – Temodar.

In the next room, we were greeted by a different P.A. whom we had never met before and a “research assistant” who were tasked with going over the details of my overall treatment plan and immunotherapy trial. They also recruited me to participate in a couple of other miscellaneous studies (like effectiveness of different anti-nausea drugs during chemotherapy, and daily physical activity trends in brain tumor patients using a FitBit).

The last stop of the day was at the “Check-Out” desk, where we received a seemingly endless calendar of future appointments that were already scheduled for me without regard to my and Ashley’s own personal and work schedules – we were literally just given these appointments and expected to be there for each and every one of them. These included appointments for physical therapy, occupational therapy, psychotherapy, MRIs, lab draws, follow-up oncology appointments, meetings with the immunotherapy/research team, and DAILY radiation treatment appointments for six and a half straight weeks. Ashley and I left the BTC with a literal book of calendar appointments for the next three months (basically the entire summer and part of the fall), as well as another book of prescriptions that needed to be filled immediately at the specialty pharmacy on the first floor of the Duke Cancer Center on our way out. One of these prescriptions was for a chemotherapy drug called temozolomide, or Temodar, which nobody told me at the time would become a critical part of my and Ashley’s daily life and that our daily schedules would necessarily revolve around it FOR THE NEXT TWO YEARS!! My oral Temodar dose of pills would always have to be taken exactly one hour after some kind of anti-nausea drug, which would in turn have to be taken one hour after dinner or one hour before bedtime. Between all of the appointments that were suddenly thrown onto our schedules and all of the timed daily medication doses, Ashley and I were left with no choice but to accept and ADAPT to the new schedule and lifestyle that was thrust upon us; because that was the path that was set before us by the BTC, and that was what was required for us to overcome this new life obstacle called brain cancer together.

Ondansetron/Zofran, compazine, and the granisetron/Sancuso transdermal patch were all different varieties of anti-nausea medication that I was prescribed when the weaker drugs were no longer effective against the five-day high-dose cycles of Temodar, with the Sancuso patch being both the most effective and most annoying/inconvenient to use since I had to keep it on for five straight days and therefore needed to protect it from water and sweat (which as a fitness professional and avid exerciser is a VERY difficult thing to do). I ended up having to apply a Tegaderm hydrocolloid dressing on top of the patch to keep it dry and in place; a patch for the patch, if you will. Each Sancuso patch cost us between fifty and eighty dollars out-of-pocket, so we really wanted to get our money’s worth on that one.

The idea here was that if I were to have any nauseating effects from the chemotherapy, then hopefully they would kick in while I was sleeping and would therefore not be as noticeable. Well, during my first high-dose cycle of Temodar, I found myself rudely awakened in the middle of the night by the most severe abdominal pain and nausea that I have ever felt in my life – so severe that it brought me to tears on several occasions. This, of course, would cause Ashley to wake up too and, being the emotional wreck that she always is, would stay up and cry with me until we both fell back asleep. Each time I felt nauseous I would try in vain to fight off the urge to vomit. This usually manifested as a dramatic sequence of dry-heaves that sounded like a cat coughing up a hairball. I am proud to report, however, that during two solid years of chemotherapy treatment I NEVER THREW UP, not even a little bit! My main motivation for keeping myself from puking was that I was not willing to lose/waste the incredibly important (and ridiculously expensive!) medicine that was supposedly helping to save my life.

Oh, did I mention the twice-daily laxative and stool softener (Senna S) and antacid (Prilosec) that I also had to take to counteract the severe constipation and heartburn caused by both the chemotherapy and anti-nausea medications? So yeah, there I was pumping my body full of poison and all kinds of medications while attending almost daily medical and therapy appointments for months on end, essentially becoming brain cancer’s latest punching bag. The way I saw it, I could either give up and give in to it, or ROLL WITH THE PUNCHES and move relentlessly forward. My choice was clear, and my life would never be the same again.

At the end of the day, the Duke BTC reminds me of some kind of all-inclusive resort for brain tumor patients, except the food isn’t included, there’s no beach or alcohol, and nobody is having any fun. I remember thinking that if all of this stuff on the front end is so well coordinated and scheduled, then why couldn’t anybody give me more of a heads-up on what a major impact this whole cancer thing was going to have on our daily lives? Why couldn’t anybody warn me or prepare me better psychologically for what I was going to experience and endure later on down the road with treatments, side effects, and a drastically altered lifestyle? Well, as it turns out, it is because everybody’s cancer “journey” is wholly unique and nobody really knows what is going to happen – not even the genius doctors and researchers at the Duke BTC. All they and we can do is give our absolute best effort with the knowledge and tools that we have, shift, adapt, and “roll with the punches.”

09Jan

What The F*** Are You Doing?!

January 9, 2019 nestorbecomepaonessa 18

Prologue Part II:

“How brain cancer showed me who the REAL heroes in my life are.”

I believe that my experience in the hospital is best defined by both the things that I absolutely hated about it, and the things that I absolutely appreciated about it (most notably all of the heroic people that I had the privilege of coming into contact with). Let’s get the “bad” stuff out of the way first, though. Probably the single biggest thing that I hated about my hospital stay, apart from, you know, having my head cut open and my brain completely F***ed with, was being put “on public display” a couple of days after surgery. As I was recovering in my room in the neuro-ICU and slowly regaining mental awareness as the general anesthesia from surgery began to wear off, my bladder suddenly felt like it was going to explode – I really had to pee and I wasn’t sure how much longer I could hold it! I realized that I could not remember the last time that I had actually gone to the bathroom since I was admitted to the hospital, and a quick visual scan of my room revealed that I had my own little private bathroom about ten feet from my bed – perfect!

As I pondered how I was going to physically move myself over to the bathroom to use the toilet, I realized that I was still connected to all kinds of heart and breathing monitors and IVs by way of a huge tangled mess of wires and tubes that I couldn’t make any sense of. I was definitely going to need some professional help getting disconnected from all of this equipment, so for the first time I pushed the big red “help” button on my bed’s wired remote control (that was conveniently positioned right by my side; the remote also controlled the recline functions of the bed and the functions of the television hanging from the ceiling in front of me – these hospital people thought of everything!). When a nurse arrived a few seconds later, I told him that I really had to go pee and that I wanted to use the bathroom that was just a few steps away from my bed – it was so close that I could almost reach out and touch the door handle. “No, I’m sorry but I can’t let you do that,” he said, motioning towards the bright yellow plastic theme park band that was securely fastened to my right wrist and emblazoned with two big, bold words: FALL RISK. Really?! This is what my life had suddenly come down to? I was an ultra marathon runner just a few months ago, I hiked the Inca Trail to Machu Picchu just last month, and now I can’t go use the bathroom like a normal person because I might fall? Are you serious right now? What the F*** is happening to me?!

“You can just go, you’ve got a catheter in you,” the nurse said to me. Umm, no, I can’t. At first I had no idea what he was talking about because I certainly didn’t remember anybody shoving a plastic straw up my penis, but then I was immediately grateful that I had no memory of that particular procedure. So there I lay, trying in vain to let myself “go” through the catheter which was presumably attached to a collection container somewhere out of my sight, but I simply could not do it. Maybe I was having some kind of mental block because I had never tried as an adult to pee while laying on my side in a bed, or perhaps it was the lack of the visual cue of a urinal, toilet bowl, or a tree trunk that I needed in order to let myself go… OR maybe I was having a bad case of “stage fright” because I was aware that I was surrounded by Ashley, several nurses, and possibly a couple of other family members, friends, and some total strangers. I don’t remember exactly who all was there, but I DO remember feeling incredibly embarrassed, humiliated, violated, and increasingly frustrated as I felt like the whole world was watching me and scrutinizing me while I struggled and failed to complete one of the most private and primal of all human acts – taking a piss.

After trying for several minutes with no success, the team of nurses huddled up together outside of the door to my room and hatched a plan to get me to urinate. When the huddle broke up, the head nurse came over to my bedside and told me and Ashley that they were going to check my bladder to see just how full it really was, then remove the catheter and let me try going without it. Another nurse then came over with some kind of ultrasound-type device, squirted a glob of cold, gooey ultrasound gel all over my lower abdomen, and proceeded to pass the ultrasound head over that area. After about a minute she proclaimed, “yeah, your bladder’s pretty full!” Uhhh… you think?! Tell me something I DON’T know!! A few minutes later, she yanked the catheter out in what I can only describe as an incredibly uncomfortable sensation akin to making a “POP!” sound by flicking the inside of your cheek with your finger (another much-hated experience that I may never forget, unfortunately). The head nurse then handed me a long, rectangular plastic bottle with a hole at one end and a handle on top and said, “here, try going in this.” Desperate for any kind of relief at this point, I took the old-school urinal bottle from his hands, maneuvered it underneath the bedsheets, located the hole and, before you could say “pee-pee tepee,” I unleashed a firehose-like torrent of urine that quickly overflowed the bottle and spilled all over myself and the bed. Luckily for me, the experienced nursing staff had the foresight to prophylactically outfit my bed with a puppy-dog housebreaking-style pad underneath my body to capture at least some of the mess.

It was at that very moment that I learned what exactly it is that nurses do for their patients, something I had never known or experienced before as this was the first and only hospitalization of my life: Nurses. Are. AWESOME! Like a well-oiled NASCAR pit crew, an entire team of neuro-ICU nurses instantly materialized out of thin air and began detaching my wires and tubes, changing my bed sheets, giving me a sponge bath, outfitting me with a fresh, clean hospital gown, and reattaching all of my monitor wires and IVs, all with a smile and a great sense of humor. These people are amazing, and I will forever have the utmost respect and gratitude for our nurses; they are truly HEROES. (I would be remiss if I didn’t give a shout-out here to my personal nurse and HERO Ashley who was also in the thick of the action, assisting the nurses with my sponge bath and helping me to get dressed afterwards).

Later that day, I realized that I had not had a bowel movement in several days either, and I was incredibly constipated from the general anesthesia drugs and the cocktail of medications I was taking to counteract the side effects of all of the other medications that the doctors had put me on to aid in my recovery. These included anti-seizure meds, strong steroidal anti-inflammatories, acid reflux meds… and now, they would add a laxative and stool softener to the mix. Enough about me trying to go to the bathroom, though – I’ll save the story (titled, “Shit or Get Off the Pot!”) about my failed attempts at pooping in a bedpan and a portable toilet/chair thingy in front of an audience for another time.

Let’s talk about other things I hated about the hospital experience, like the OTHER plastic wristband that was slowly squeezing the life out of me – this one had my name on it, a bunch of number and letter sequences, and a barcode. Yes, my own personal barcode, just like the one on a family-sized case of flushable moist butt wipes at Costco (that I had no use for anyway since I was severely constipated, but I digress). I learned very quickly that literally EVERY time something was done to me or given to me by one of the hospital staffers, my wrist barcode was scanned first with a convenient little hand scanner, and then a barcode would be scanned on whatever medication or test was being administered to me at the time. Scan me (“Beep!”), scan the pill bottle (“Beep!”). Scan me (“Beep!”), scan the tube of antibiotic ointment (“Beep!”). Scan me (“Beep!”), scan the band-aid (“Beep!”). Scan me (“Beep!”), scan the syringe (“Beep!”), and so on (“Beep!”) and so forth (“Beep!”). Every time a nurse scanned something, I couldn’t help but see dollar signs floating out into the ether. How much did THAT pill just cost me? How much was that IV injection? How much of all of this is my health insurance going to cover, if any? How much, how much, how much?? These are some of the thoughts I had as I began feeling less and less like a human being and more and more like an item in a pharmacy shopping cart with an as-of-yet unknown price tag, but I was fairly certain that it was not going to be cheap. Surely this was not what I really needed to be consumed with and worried about at this particular point in time, but how could I not be?

Oh, one more thing that I absolutely hated: being woken-up at what felt like thirty-minute intervals so that one of the nurses could either make sure that I was still alive and responsive, prick one of my fingers with a lancet to perform a blood glucose test, or to give me some of the most painful injections of my life (apparently an explosive auto-injector to the stomach is the only way to deliver anti-blood-clotting medication at three o’clock in the morning). Regardless, repeatedly waking up to a painful needle stick JUST as I was starting to get comfortable and fall asleep definitely deserves a place somewhere near the top of my negative column. Read more about my aversion to needles in “Kicking the Bucket List.” https://becomepowerful.com/2018/12/24/kicking-the-bucket-list/

I experienced the incredible display of genuine care and compassion from the nursing staff again the next day after I vomited all over myself. My father, who arrived in Durham from Puerto Rico one day earlier to visit me in the hospital, apparently wanted to feel like he was being a useful part of my recovery process, and so he decided to take over for Ashley who had been spoon-feeding me my lunch, an open-face hot turkey sandwich smothered in gravy from the hospital cafeteria. My father must have thought that the more I ate, the faster my brain would heal because he started to shovel forkfuls of food into my mouth at such a blistering pace that I didn’t have time to swallow between bites and I suddenly found myself throwing everything up all over myself, my bed, and the food tray in front of me. This, of course, did not sit well with Ashley, ever my primary caregiver and protector who was always on high alert to make sure that nobody did me any harm. Upon seeing this horrific scene unfold before her, Ashley went ballistic: “What the F*** are you doing to him?!” she yelled angrily at my father. A heated argument between Ashley and her father-in-law (about how to properly care for me) then erupted right in front of me. To say that tensions in the room were running high is a gross understatement. Somewhere in the middle of all the chaos, a small army of nurses had again seemingly materialized out of thin air, cleaned up my vomit, changed my gown and bed sheets, and brought me a fresh cup of ice water to cleanse my palate. One word: HEROES.

Speaking of hospital food, I know that it historically gets a bad rap for being unappetizing at best, but I actually thought that the ham and cheese omelette with buttered toast that Ashley ordered for me one morning from the hospital room service menu was decent, and I was actually enjoying the open-face hot turkey sandwich smothered in gravy before my dad made me throw it up. Interestingly, though, my favorite food items on the hospital menu quickly became chocolate pudding, apple sauce, and Jell-O, as they were the only soft and somewhat soothing foods that I could reliably swallow with relative ease after my breathing tube was removed, resulting in the worst sore throat of my life (I learned later that I was intubated just before I went under general anesthesia, but thankfully I don’t remember that procedure either). I remember asking Ashley one morning to pour the little carton of orange juice that came with my breakfast over a cup of that awesome hospital crushed/chipped ice so that it almost resembled a snow cone; this quickly became my new favorite treat, as it was very soothing to my raw, irritated throat.

My absolute favorite meal during my entire hospital stay was a barbacoa burrito the size of my head that my favorite HERO Ashley surprised me with for dinner one evening. She had snuck over to the Chipotle restaurant down the street from the hospital, and ordered me my favorite burrito combination: shredded beef barbacoa with brown rice, black beans, cheese, sour cream, lettuce, guac, and pico – hands-down the best meal of the week!

Back to things I hated: the drone-like buzzing sounds of the automatic blood pressure cuff as it inflated and squeezed the life out of my right arm every couple of minutes, as well as the inflation/deflation sounds of the intermittent air compression boots that were helping to push edema (swelling) out of both of my legs, which were elevated at the foot end of my bed. To this day I still have random nightmares and daymares of these sounds, and I can also still hear the beeps and blips of the ECG/heart rate and other vital sign monitoring machines in the room all around me.

I am grateful for Ashley’s attempt to get me out of my hospital room for a brief moment. Three days after major brain surgery, I found myself finally resting somewhat comfortably in my hospital bed in the neuro-ICU. The effects of the anesthesia were finally wearing off and I was starting to feel a little more mentally aware and alert. Ashley, who had been living and sleeping on a cot/bench next to me in the room all the while, got it in her head that she wanted to get me close to the windows of the seventh floor Neurosciences waiting room at the Duke Medical Pavilion so that I could catch a glimpse of the Fourth of July fireworks display that was going on outside over the nearby Durham Bulls Athletic Park. Realizing that I was physically exhausted and finally feeling comfortable in the position in which I was resting in my bed, I protested that I didn’t want to go anywhere and see any “stupid fireworks.” I just wanted to lay there and try to sleep instead of going through all of the trouble of having the nurses disconnect me from everything, somehow move my frail and weakened body into a wheelchair just to see something that I’ve seen a million times before. Ashley persisted that she really wanted me to go with her to see the display and thought that it would be good for me to get out of that room for a bit and have a change of scenery. After much back-and-forth and realizing that I had inadvertently hurt her feelings by resisting so hard while she was trying to do something nice for me and for us, I finally gave in. With the assistance of a couple of nurses, I clambered into the wheelchair and Ashley wheeled me out of the room, down the hallway, and straight ahead towards a large glass picture window at the end of the hall. There I got my first view of the world outside of the hospital since having been admitted five days prior. As we approached the window I could hear the whistles, explosions, and crackling of the fireworks in the distance, but no matter how close to the window Ashley pushed my chair, I just could not crane my neck far enough forward to see around the corner of the window frame that was blocking my view of the fireworks. I never did get to see any fireworks that day, which left Ashley visibly upset and dejected, but I did get to see my number one HERO in action and at her very best; my absolutely incredible wife and best friend Ashley who wanted nothing more than to give me a taste of freedom, to see me freed from the constraints of the hospital room and all of the wires and tubes that kept me attached to the hospital bed, and for us to have one joyous moment together as husband and wife, watching the fireworks on the Fourth of July like we always did in years past. For that (and so many other selfless acts that are too many to count), I am forever grateful to her, my most cherished, revered, and HEROIC of all of my HEROES in this story.

One of my last and most painful memories from the entire hospital stay came on the day of my discharge – a day that was otherwise unbelievably happy and joyous! We got the news from one of Dr. Allan Friedman’s Physician Assistants that I had passed all of their myriad cognitive and physical function tests and that I was cleared to return home and continue my recovery and rehabilitation outside of the confines of the neuro-ICU and away from the watchful eyes of the nursing staff. However, before they could actually let me leave my room, the doctors had to tie up some loose ends… literally. Unbeknownst to me, but knownst to everybody else in the room, I still had a couple of cerebrospinal fluid drainage tubes sticking out of my head; one just above the right side of my forehead on the hairline, and another in the back of my head at the base of my skull. Let me preface what follows with the fact that, at this point in time, any residual effects from my surgical anesthesia were LONG gone; I was now wide awake, fully alert, and capable of seeing, hearing, and feeling EVERYTHING. As I was sitting up in my now halfway-reclined hospital bed, the PA walked up to the side of the bed and told me and Ashley that he was going to remove the drainage tubes and close up the holes. That sounds simple enough, I thought to myself. When he pulled the plastic tubes out of my skull, it was a very strange and uncomfortable sensation to be sure, but I would not say that it was particularly painful. What he did next, however, was EXTREMELY painful. Without so much as a heads-up nor any kind of anesthetic, he started sewing up the open holes in my scalp with a little curved NEEDLE and thread. Did you hear what I just said?? HE STARTED SEWING UP THE BARE FLESH ON MY HEAD WITH NO F***ING ANESTHESIA!!! I know that I screamed like a newborn baby during a circumcision multiple times. “Aaaarrrghhh!! Jesus Christ, stop it!! What the F*** are you doing to me??!!” I continued to hurl obscenities at him until he was finally finished. I am sure that the whole procedure really only took a couple of minutes, but it certainly felt like an hour or more of pure unadulterated physical torture, and to this day I still have no earthly idea why he had to do it that way. So yeah, I pretty much hated that part.

Armed with a mile-long laundry list of discharge instructions that we would have to follow and medication prescriptions that we would have to fill, Ashley and a nurse loaded me onto a wheelchair and transported me to the curb outside of the hospital lobby, where Ashley’s mother was waiting for us in her car along with my own mother to take us home; home to our brand-new house that we had yet to do any actual living in, but that would become the place where I began and completed my recovery from brain surgery. Home sweet home!

During my week-long hospital stay, Ashley slept most nights on a very uncomfortable fold-out bed/bench in the corner of my hospital room. Other relatives, including my mother and mother-in-law, slept on chairs and benches in the neurosciences floor waiting room. A few close friends helped Ashley out by driving her to and from our house where she could take a shower and get fresh clothes, and also took her to nearby restaurants so she could eat non-hospital-cafeteria food. They even took her out on walks in the nearby Sarah P. Duke Gardens to get some fresh air and take her mind off of my surgery for a few brief moments. One close girlfriend of Ashley’s even cut her own personal vacation in Maine short and flew back down to North Carolina to be with her when she heard the news of my surgery. These friends and family members know who they are if they’re reading this; they are our HEROES, and we will always be ingratiated to them for their love and kindness.

Two days after surgery, a couple of my EMPOWER coworkers stopped by the neuro-ICU to visit with me for awhile, a welcome diversion at the time to be sure. With the encouragement of the on-duty nurses, my friends and teammates took up positions by my sides and helped me to stand up out of my hospital bed on my own two feet for the first time and take my first steps since having major brain surgery. They led me on a short walk out of my room, down the hallway and around the U-shaped neuro-ICU floor, parading me in front of the nurses and residents who were on duty and clapping and cheering for me as I slowly shuffled by. They even managed to take me up and down a couple of steps. Those guys are also HEROES in my story, and they know who they are if they’re reading this.

At a follow-up visit to the Brain Tumor Center a few days after my discharge, I was scheduled for an appointment to finally get all of the stitches and staples removed from my craniotomy incisions. As the nurse practitioner was clipping out the individual staples (and there were a LOT of them; see the photo accompanying this blog post) with what looked like a small medical-grade wire cutter, I clearly remember seeing the little metal staples fly across the room and hearing them bounce off of random objects in the room with each snip: “Snip… ping! Snip… ping!” Next she began removing the sutures, and I could definitely feel everything she was doing as she snipped each suture with a pair of sharp, pointy scissors. She then slowly pulled each piece of short black thread out through the holes in the raw skin and flesh of my bare scalp. I am still dumbfounded by the fact that such incredibly intelligent, experienced, and highly-educated doctors would use BLACK thread to sew up the incisions on my scalp; coarse, jet black thread that perfectly matched my coarse, jet black hair in both color and thickness. Perfect for disguising the stitches amongst my actual hair, and even more perfect for making it impossible for the nurse practitioner to FIND all of them during the removal process. That, however, was not her fault, and I am grateful for the time and effort that she put into trying to clean and tidy up the suture “situation” on top of my head – she even took some time to educate me and Ashley on how to regularly clean and re-dress the healing wounds on my scalp with antibiotic ointment and bandages. My neuro-oncologist’s nurse practitioner is another HERO in my story, and if she is reading this right now she knows who she is.

Over the course of several weeks following that visit, I would continue to find random sutures that were still left sticking out of my scalp, and each time my HEROIC nurse and primary caregiver Ashley would come to my rescue and pull them out either with a pair of tweezers or her bare fingers – a strange and uncomfortable experience for both of us each and every time to be sure. I even found a couple of the rogue sutures while attempting to cut my hair for the first time post-surgery while using my electric hair clippers. It was quite an unpleasant sensation every time one of those threads got caught in and yanked by the rapid cross-action of the clipper blades – YOWCH!! Talk about uncomfortable!

One of my fondest memories upon arriving home from the hospital was my first meal at a real restaurant. That first night home, neither of us felt like cooking; we were both exhausted from the past week of overstimulation at the hospital. While foraging in our brand-new kitchen that was bereft of any kind of food as we had not yet had a chance to stock the fridge or pantry, I turned to Ashley and said, “you know what I’m craving right now?”

“I have no idea love… tell me, what are you craving?” she asked.

“Mexican food,” I said, “but not just any Mexican food… I feel like I want to sit down and completely dominate an entire basket of chips and salsa, like just totally chow down and eat the whole damn thing, because I feel like somehow shoveling chips and salsa into my mouth nonstop might make me feel normal again, because that would be a totally normal thing for me to do. I just really want to have that experience right now.”

“Like, right now? You want to go to a Mexican restaurant right now?” she asked incredulously. It was four o’clock in the afternoon, so not exactly lunchtime, but not quite dinner time yet either.

“Yes, is that okay with you? I’m pretty hungry… are you hungry? I know you would have to drive us, but isn’t there a decent one at the mall right up the street across from REI? I think we ate there one time after visiting the house construction site.”

“Yeah, we did; I think I remember it was good! Sure, I suppose I could eat – just let me change my clothes and we’ll go, ok?”

About fifteen minutes later, my face was buried in the first of what would be two whole baskets of chips and salsa, followed by an order of my favorite carne asada soft corn tacos topped with shredded cheese, onions, cilantro, and a squeeze of fresh lime. I came; I saw; I conquered, and I was satisfied. If I remember correctly, Ashley even ordered us the churros for dessert to both celebrate my discharge from the hospital, and to commemorate our first night of living in our new home.

Speaking of food that we didn’t have to cook, in the days and weeks immediately following my discharge, Ashley and I had our first-ever experience on the receiving end of a “Meal Train.” For those unfamiliar with the concept, it is a website where friends can sign up for calendar dates on which they are supposed to either cook or purchase a meal and deliver it to the beneficiaries, with the objective of helping to ease the burden of cooking or procuring a substantial daily dinner while recovering from a major life-altering event. We quickly discovered that some of the meals were absolutely incredible, super tasty, and satisfying. Others, however, were actually pretty gross and thoroughly unenjoyable. Sometimes eating other people’s cooking just isn’t what your taste buds, brain, and body can process immediately following major brain surgery; sometimes what you really crave are the familiarity and safety of the flavors of your own cooking or your favorite local restaurant. We certainly appreciated each and every one of the thoughtful gestures and efforts that our friends, family, and sometimes total strangers made for us, but to some degree the “restaurant gift card” option was a much safer bet. I can’t stress enough how truly grateful we are for the contributions that our friends and family made during our time of need and they too are the HEROES of my story, even if we didn’t always like the way the food tasted or couldn’t remember who we had to return a particular Tupperware container to after we washed it. Seriously though, keeping track of all of that shit is a pain in the ass.

24Dec

“Kicking the Bucket List”

December 24, 2018 nestorbecomepaonessa 19

“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: https://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” https://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!)

12Nov

Nestor Powernester

November 12, 2018 nestorbecomepaonessa 18

“What does it take to be able to move relentlessly forward? What kind of person can sustain relentless forward movement?”

PREFACE:

Let’s start from the very beginning – MY beginning. I’m sure this sounds very cliché, but I feel like I had a VERY unique childhood (doesn’t everybody?). I was born the only child to a somewhat prominent upper-middle class Puerto Rican family on the island of St. Croix in the U.S. Virgin Islands. My parents, Nestor and Iris Paonessa, were self-made, having built and operated a successful local trucking/delivery and U.S. Customs brokerage business (“Nestor’s Trucking”) on the island for over 30 years. Being so consumed with their work, they brought me into the world relatively late in the game; my mother was thirty-six years old when I was born and my father, forty-two.

To say that I was spoiled as a child is an understatement; birthdays and Christmases were AWESOME! I got all of the attention, all of the presents, and I was famous among my young friends and classmates because my parents would throw me the most epic birthday pool parties! I never wanted for anything and I got pretty much whatever I asked for, usually within the context of a reward for doing exceptionally well in school. From the time I received my first-ever grade on an assignment until the day I received my master’s degree, I was a straight-A student.

Admittedly, I am a perfectionist and a “finisher,” traits that I credit to my father who was the only child of a hard-line high school principal and a supremely devout Catholic mother in Puerto Rico (most of my memories of her involve her twiddling her rosary beads between her fingers while whispering prayers to herself). I am also an obsessive-compulsive workaholic, a positive thinker, and an incurable optimist, all traits that I credit to my mother who worked her way up from an incredibly poor upbringing in a family of twelve children on farmland in rural St. Croix in the 40’s and 50’s.

From a very early age she continuously worked multiple jobs to help support her fledgling family and eventually graduated as valedictorian of her high school. With the sponsorship of a local Baptist church minister’s family that she became close with as their babysitter, Iris became the first person in her family to attend college. She spent one year studying at Howard University in Washington, D.C. until her funds eventually ran dry, forcing her to return home to St. Croix and find work again.

While Iris was working as a secretary for a local shipping company on the waterfront of Christiansted, St. Croix’s largest town and seat of local government, a traveling Xerox machine repairman named Nestor from neighboring Puerto Rico became a frequent visitor to Iris’s office. Regular repair visits evolved into dates, and before they knew it they were married, starting a business, buying a house, and having ME!

Values that I inherited from both of my parents include a drive to always do my best in everything I do (the foundation of my competitive nature), and a desire to always do the “right thing.” While my father was decidedly more strict, militaristic, and hands-on in his approach to pushing me to excel in school and in my extracurricular activities (like racing sailboats, playing tennis, and playing the piano), my mother was clearly the “good cop,” the more sympathetic and compassionate of the two.

To this day she still fills the role of “helicopter mom” and my ultra-proud number one fan through her almost daily positively-affirming iPad text messages and phone calls, both of which are huge steps forward technologically for a woman who seriously never once touched a computer in her thirty-plus years as a small business owner (I can’t overstate how proud I am of her for finally learning how to use and master a flip cellphone and an iPad since she moved from St. Croix to Chapel Hill just six short years ago).

My parents weren’t what I would consider physically active themselves from an exercise standpoint, nor were they sports enthusiasts of any kind. Any athletic skills and interest in/appreciation for sports that I developed as a child were the direct result of school P.E. classes, lunchtime pick-up games on the playground at school, local after-school sports clinics, interscholastic sports, summer camps, and playing with friends from school and on my street.

As the token twiggy, awkward nerd and “teacher’s pet” with the big glasses, braces, and horrible acne in grade school, I was frequently the target of the stereotypical verbal and, pathetically, sometimes physical bullying from my peers. I was called “Four Eyes,” “Metal Mouth,” “Pizza Face,” “Chicken Legs,” “Nestor the Pester,” “Nestor Polyester” (my personal favorite), “Nestor the Molester” (everybody else’s favorite), and, ironically, whenever St. Croix experienced one of its routine island-wide power outages, “Nestor Power-nester” (who knew that name-calling could be so emPOWERing?).

At some point in the midst of it all, I made a pact with myself that someday in the future, when I would (hopefully) have a child of my own, I would make it a point NOT to name him or her anything that could possibly be misconstrued or made fun of – no rhymes, no intentional misspellings, no substitutions, no “sounds like” or “looks like” profanity or innuendo – nothing. However, with the encouragement and support of my parents, I brushed off and endured years of petty attacks; remained focused on my academic studies and my physical skills; continued to make regular high honor roll appearances, won spelling bees, math competitions, and science fairs; racked up wins at local junior sailing regattas and junior tennis tournaments, and even won local classical piano competitions against adult competitors.

Then it happened. Just as I was beginning to develop as a physically and mentally strong, athletic, and pseudo-independent young man while away at boarding school for my eleventh grade year at Palmer Tennis Academy in Tampa, Florida, I got the news in a tear-filled phone call from my mother that simultaneously broke my heart and enraged me, and I swear to this day that I never saw it coming: my parents were getting divorced.

My perfect little world and (what I thought was) my perfect little family fell apart seemingly overnight. My father who had always been there for me, coaching me and teaching me valuable life skills to always be handy and useful, pushing me towards perfection and success in everything I did, prodding me to never settle for less than the best, and taking pictures and videos of me at every major event in my life, was going to be moving to his recently-deceased father’s old house in San Juan, Puerto Rico – permanently. I would have to finish “manning-up” very quickly because it would be just me and my mom doing life in the Paonessa household for the foreseeable future, and now I was suddenly the man of the house.

I would finish out my senior year of high school back at my alma mater, Good Hope School in St. Croix, and continue on to apply to colleges like the rest of my classmates. All of my hard work and determination up until that point finally landed me at my first-choice school, the University of North Carolina at Chapel Hill, where I was accepted into the undergraduate Athletic Training Education Program, and so began the next chapter of my life.

Anyone who knew “Nestor Polyester” the skinny nerd in St. Croix had no idea that the entire time they were witnessing the development of a young man with extreme levels of physical endurance and mental toughness. This is how my story begins…

15Oct

On the Road Again

October 15, 2018 nestorbecomepaonessa 17

“How brain cancer put me in the high-speed lane towards creating and experiencing the life I envision.”

(step 8 of my 8-step plan to get you back on track towards pursuing the life you envision despite a cancer diagnosis or other major life-altering event).

STEP 8 Part III:

Shortly after returning home from my week-long stay in the neuro-ICU at Duke University Medical Pavilion and receiving my brain cancer diagnosis, my psychotherapist helped me to understand and accept that my life had just changed completely, and seemingly overnight. As I began the new routine of daily radiation and chemotherapy treatments, I realized that my life was suddenly VERY far from what I considered to be normal; a visual impairment caused by the radiation treatments, and my overall lack of awareness of time and space, meant that I could no longer drive a car. Losing my independence meant that I had to rely completely on my wife Ashley, family, and friends to get me to and from my daily treatment and therapy appointments; to and from my job that was temporarily reduced to a part-time role; and I felt generally useless as a husband to Ashley because I couldn’t do a relatively simple and mundane chore like run to the store to pickup a few groceries, among other things. I began to crave normalcy, and anyone who knew me during that period of time knew that, more than anything, I just wanted life to go back to normal. I desperately wanted to FEEL and BE normal again. Realizing that the only way out of this situation was FORWARD, I began to do what I do best: I set some big, lofty goals and worked hard towards achieving them. This was perhaps the first glimmer of normalcy in my new life post-cancer diagnosis, evidence that I was still alive and that I was still ME.

My first goal was to be able to drive again and regain my independence. I worked diligently with my physical, occupational, and psychotherapists to rebuild the fine motor, reaction, visual, and cognitive skills required to successfully and safely operate a motor vehicle. This culminated in me passing a visual fields test with my neuro-ophthalmologist and a driver-readiness exam with my psychotherapist. With Ashley in the passenger seat for my first few times behind the wheel, I was finally cleared to drive. Check that box!

My next goal was to get my old full-time job back, not just for my own mental well-being but also for my and Ashley’s financial well-being (medical bills were starting to pile up in a big way, we started making mortgage payments on the new house we had just built, and we were essentially reduced to one income). Being cleared to drive a car played a big role in this, as I was quite literally able to get on the road again and finally able to get myself to and from work every day at the times that I needed to be there, without having to coordinate with Ashley to be my Uber driver and thereby disrupting her own work multiple times per day. After piecing together a regular work schedule for a few months, I was finally able to convince my employers that I was ready to return to my full-time role, and thankfully they agreed. Check that box!

The next goal was to pursue a physical goal I had set before my cancer diagnosis – I wanted to run the Umstead 100 Mile Endurance Run. This was a goal that came about right after I completed my first ultra marathon back in February of 2015, just four months before I learned that I had a grade IV glioblastoma growing on my right thalamus. At the time, I was in arguably the best physical shape of my life and had just successfully completed the hardest voluntary physical challenge of my life, the Uwharrie 40-mile Mountain Run. Feeling like I could seemingly do anything at that point, I declared that I wanted to do a 100-miler, because that’s what all the “real” ultra runners did, and the Umstead 100 was my target. The Umstead 100 is a local race in Raleigh, North Carolina that is generally billed as one of the country’s best first-time 100-mile races. Remember how I said I wanted life to feel normal again? Well, normal for me was committing to some kind of big crazy physical challenge, one that would serve as a “carrot” to hold me accountable for my own regular physical conditioning and training. The Umstead 100 was just what I needed, just what I wanted, to make me feel normal again. After much pleading and negotiating with Ashley, which included getting permission from my neurosurgeon and neuro-oncologist (and roping in two of my friends, Michael Whitehurst and Eugene Oddone, to sign up and do it with me), Ashley agreed to let me register and train for the race. Once I paid the $180 registration fee, it was game on!

I knew I had a little over a year to train for this thing, and that in order for me to finish 100 consecutive miles on April 1st, 2017 I was going to have to create a solid training plan and schedule together with my training partners, and I was going to have to put in the work and really stick to the plan or else it wasn’t going to happen. We organized and completed long training runs together on the weekends, and during the work week we individually completed strength training workouts in the gym, shorter maintenance runs on the treadmill or on the road, and speed workouts on the Duke University track. In the meantime I continued my daily oral chemotherapy regimen, monthly check-ups at the Brain Tumor Center, and bi-monthly monitoring MRIs. Having completed over a year of training with chemo drugs (or what I affectionately referred to as “my poison”) in my body, I felt confident that I would be prepared for however I would feel in attempting to move my body relentlessly forward over the course of one hundred miles on race day.

Fast forward to race day… I could write an entire book on that experience alone, but this blog is about continuing to create and experience the life you envision, despite whatever crazy and unforeseen circumstances may arise. I did all of the training and preparation that I (un)reasonably could for an entire year, I showed up at the starting line on race day with the most amazing crew of family and friends in attendance to support me, and about thirty minutes shy of the thirty-hour cut-off time I crossed the finish line hand-in-hand with my crew chief, final lap pacer, and extraordinary love of my life, my wife Ashley. Check that box!

My next goal was to hike to the summit of Mount Kilimanjaro in Tanzania and take an African Safari with Ashley, which we successfully completed in July of 2017. In order to conquer “Kili,” Ashley and I would have to seriously train for this monumental physical challenge as well, which today I rank as the SECOND hardest physical challenge I have ever completed in my life (the first being the hundred-miler just three months earlier). Fortunately for me, having just trained for and completed the Umstead 100 Mile Endurance Run, my cardiovascular system and leg muscles were already in tip-top shape. I would argue that, even though I was taking daily chemotherapy, I was at an even higher level of overall physical fitness than when I ran my first two ultra-marathons before my brain surgery!

To round out our training plan and make it as functional as possible, Ashley and I added in twice-weekly stair climbing workouts for thirty-to-sixty minutes each while wearing twenty-pound weighted vests. While on the mountain, we both took the recommended daily dose of Diamox medication to help curb any ill effects of the extreme altitude (the summit is a cool 19,341 feet above sea level), and I must say that some combination of our physical training and the medication definitely worked – neither of us experienced any symptoms of altitude sickness, which was a huge win!

I guess you could say that life is finally starting to look a little more normal again, a little more like what I had envisioned before I was diagnosed with brain cancer. I am not finished yet, however. Ashley and I are now working on our next big life goal: starting a family and filling this new house of ours. It is with a very full and excited heart that I can report that today Ashley is twenty-eight weeks pregnant with our son, who we hope to welcome into the world sometime on or about January 6th, 2019. Stay tuned!

24Aug

Do the Work

August 24, 2018 nestorbecomepaonessa 17

“How brain cancer pushed me to create and experience the life I envision.”

(Step 8 of my 8-step plan to get you back on track towards pursuing the life you envision despite a cancer diagnosis or other major life-altering event).

STEP 8 Part II:

My first experience with exercise upon returning home from a solid week of recuperation in the Duke Medical Pavilion Neuro-ICU was trying to climb the soft, freshly-carpeted flight of stairs in our new house because I wanted to explore the second floor. Almost instantaneously, as I pushed off on my very first step upward, my calves and quadriceps muscles tightened and cramped painfully and unexpectedly, prompting me to reflexively grasp the handrail so that I wouldn’t fall as a cascade of expletives spewed from my mouth. As this very brief, yet dramatic scene unfolded before her, my wife Ashley reflexively freaked out for fear of me falling and emphatically declared that I would not be climbing any more stairs without using the handrail or without having her by my side until further notice.

What happened next was the beginning of over three years of hard work and determination to get my life back on track, back on the road towards the life I had envisioned once before. It started with multiple weekly sessions with the resident psychotherapist at the Duke Brain Tumor Center to get my head screwed back on right again. I struggled with thoughts of “Why me?”, “What did I do wrong to give myself brain cancer?”, “What did I NOT do right to prevent this from happening? I intentionally spent my entire life trying to always do the right thing – I never smoked, I never stood too close to the microwave, and I always wore sunscreen and a hat outdoors like I was supposed to do. What the hell was all that effort for if I was just going to get brain cancer anyway? Why did I care so much?”, and “Is this all just some kind of a sick joke? The universe isn’t supposed to work this way!”

I immediately recognized that my most important appointments at the Brain Tumor Center were my Psychotherapy sessions, as I suddenly had a lot of new thoughts and life experiences that I needed professional help sorting through and making sense of (most of which still don’t make any sense to me to this day, but I have accepted them and moved on). Perhaps equally important, however, were my Occupational Therapy (OT) sessions.

During and after my first round of cancer treatment, a combination of daily chemotherapy and radiation for six and a half weeks straight, I experienced some significant side effects: patchy hair loss, an altered sense of taste, severe fatigue, impaired concentration and short-term memory, and a new vision problem (a right-sided visual field cut in both eyes called “homonymous hemianopia” – Google it if you’d like to see a representation of what this looks like) that would prevent me from driving a car for another 5 months. This further solidified my reliance on Ashley for literally everything in my daily life. Not being able to drive a car and essentially losing my independence at age thirty-four was really starting to eat away at me.

I also had multiple weekly appointments at the Duke Physical Therapy (PT) and OT clinics to help make sure that I was strong enough to walk and climb stairs again, and to improve strength and dexterity in my left arm and leg. During this period of physical and mental rehabilitation, Ashley and I completed several short walks up and down the street in our new neighborhood, with Ashley firmly holding my hand for fear of me tripping or stepping on a curb the wrong way and falling.

Next came a phone call from Ashley to my neurosurgeon, Dr. Allan Friedman, asking him if it was okay for me to try to run again. He replied, “Sure, he can give it a shot, but if he has any discomfort or feels too tired, tell him to stop.” (Ha ha, yeah, right!) We ran/walked one mile down the street in our new neighborhood that day without incident. The next day we ran another mile. A week later I attempted to run two miles consecutively and was successful. The only discomfort I experienced during these early runs, if you could truly call it discomfort, was a strange “popping” and “clicking” sound that seemed as if it was originating from somewhere deep inside the middle of my head, which I attributed to some kind of fluid sloshing around in there as my head bobbed up and down with each stride. From a cardiovascular standpoint, I frequently became short of breath after just a couple of minutes of running. This was an extremely foreign sensation for me, especially after having run two ultramarathons just two months prior.

Shortly after a few more two-mile runs, Ashley and I decided to stop my twice-weekly PT appointments at Duke; we felt like I had “graduated” since I had proven that I had regained the strength, endurance, power, stability, and confidence to run again. Next, we decided to double-down on my OT sessions because I still needed to get my vision and fine motor skills back to somewhat normal so that I could pass a driver’s-readiness test and achieve my then goal of being able to drive again. At OT I completed exercises and activities to help me develop strategies for overcoming the visual field deficit, all while re-building my hand-eye coordination. Having been a pianist since the age of five, coupled with the fact that I spend a lot of time at my day job typing on a computer, losing any bit of hand-eye coordination and dexterity was very frustrating, demoralizing, and devastating.

Four months later I took a driver’s-readiness cognitive exam that was administered by my psychotherapist’s office, and I also completed some additional hand-eye coordination/reaction tests with my occupational therapist and visual fields tests with my neuro-ophthalmologist. Ashley and I were ecstatic when we learned that I had passed all of the tests – I was officially cleared to drive a car again! This was a HUGE step forward towards getting my life back on track towards normalcy. I would be able to drive myself to work and back home, to all of my seemingly endless doctor’s appointments and back home, and I could finally make myself useful again and help Ashley out with things like driving to the grocery store or picking up take-out food and the dry cleaning.

Life was instantly better, but Ashley was adamant that she would not let me go out driving by myself for at least several weeks; she would always ride in the car with me so that she could make sure that I was comfortable operating the vehicle, that I remembered to obey traffic laws, and that I wouldn’t get lost out on the streets of Durham – a fair bargain, as I had not driven a car for almost six solid months and, truthfully, my senses of direction and location on the map, and general feel for the flow of traffic were a far cry from what they were before brain surgery.

(A note about the photo accompanying this blog post: Upon returning to our house at the end of my first 2-mile run in our new neighborhood on July 28th, 2015, Ashley suggested that we pose for this “selfie” because she thought that I looked pretty good for having just run 2 miles and being less than four weeks out from major brain surgery.)

01Aug

If It Is To Be, It Is Up To Me

August 1, 2018 nestorbecomepaonessa 16

“How brain cancer motivated me to create and experience the life I envision.”

(step 8 of my 8-step plan to get you back on track towards pursuing the life you envision despite a cancer diagnosis or other major life-altering event).

STEP 8 Part I:

Ten tiny words have always governed my life: “If it is to be, it is up to me.” Living up to the expectation of this mantra requires a certain (read: high) level of intrinsic motivation, resolve, commitment to SELF, and mental toughness (being generally stubborn doesn’t hurt either; as a Taurus, I was born with a decidedly bullish advantage in this department).

In the words of renowned motivational speaker and author Simon Sinek, it “Start(s) With Why.” Thanks to Simon, the “Why” has become a buzz word in the self-help and professional development industry in recent years, and it refers to your deepest underlying reason or reasons for doing whatever it is that you do. In my particular case, the “Why” that drives my own intrinsic motivation is my vision for my life that I stated in “That Fateful Day in June” (https://becomepowerful.com/2017/12/15/fateful-day-june/): “My vision for my life is to build a HAPPY and HEALTHY home and family together with my wife Ashley, and to have many fun and fulfilling adventures and experiences around the world with her.” My two main purposes in life that I outlined in “A Moment of Clarity” (https://becomepowerful.com/2018/01/26/a-moment-of-clarity/) also serve as “Whys” that fuel my intrinsic motivation: (1.) to be the best husband, teammate, and life partner that I can possibly be to Ashley; and (2.) to motivate and inspire others who may have received a cancer diagnosis or experienced some other major life-altering event.

To be perfectly honest, I have NO idea how to teach you how to suddenly become intrinsically motivated to do anything. Sometimes you choose the motivating force yourself (like when I chose to ask Ashley to marry me back on Halloween of 2009), and other times the motivating force chooses you (like when I was handed a brain cancer diagnosis in July of 2015). I can tell you definitively that wanting not to be separated from (or in a world without) Ashley is an extremely powerful intrinsic motivator for me, as is WANTING NOT TO DIE from brain cancer because dying would separate me from Ashley permanently – a scenario that is wholly incongruent with my vision for my life. Therefore, in order for me to create and experience the life I envision for myself and fulfill my purposes in life, I first and foremost need to STAY ALIVE. Well, DUH!! (Thanks, Captain Obvious!) Being aware of and fully accepting this simple concept, owning it, and keeping it at the forefront of your consciousness in the face of a life-threatening disease such as brain cancer, makes for an incredibly powerful intrinsic motivator.

WHY do I choose to do things to preserve and potentially extend my life (i.e., why do I try so hard NOT to die)? Improving and maintaining one’s level of physical fitness and overall health and wellness should generally be a no-brainer (too soon?), and that was a major motivational force that drove me to want to train for and complete the Umstead 100 Mile Endurance Run, even though I was still in the middle of daily oral chemotherapy treatment and enduring all of its concomitant side effects (among them were nausea, constipation, and general fatigue). I surmised that all of the crazy endurance and strength training would only bolster my body to aid in my ongoing fight against brain cancer, and as a bonus I would knock out one of my big life goals: to complete a 100 mile ultramarathon. Coincidentally, the insane amount of training that I was about to undertake would also be timed perfectly to help me prepare both physically and mentally for another big life goal that Ashley and I were scheduled to tackle just a few months later in July: hiking/climbing to the top of Mount Kilimanjaro in Tanzania, Africa (https://becomepowerful.com/2018/04/02/nobody-is-guaranteed-tomorrow/)

10Jul

It’s Not About You

July 10, 2018 nestorbecomepaonessa 18

“It’s Not About You”

“How brain cancer made me passionate about helping others in my same situation.”
(step 7 of my 8-step plan to get you back on track towards pursuing the life you envision despite a cancer diagnosis or other major life-altering event).

STEP 7:

Attach your goal to a CAUSE; make it bigger than yourself.

As I mentioned in my Endurance Magazine article (CLICK HERE to read the article: http://magazine.endurancemag.com/HTML5/Endurance-Magazine-LLC-Endurance-Magazine-July-2016 ), I was having trouble sleeping one night in our brand-new house while recovering from major brain surgery, and I got to thinking: most cancers and major diseases have some sort of fundraising initiative associated with them, and oftentimes it is in the form of a road race. Being a runner myself, a small glimmer of excitement built up inside of me as I started to connect the dots inside of my head: I’m a runner and I have brain cancer; does this mean that I now get my own race? After a quick Google search I discovered that yes, there is in fact an annual 5K race right here in Durham that specifically benefits the Preston Robert Tisch Brain Tumor Center at Duke, the amazing institution where I just had my life-saving craniotomy, and the place where I would continue to receive the highest quality treatment and care in the world for quite possibly the rest of my life. The event is called Angels Among Us and features a 5K run through the Duke University campus, as well as a 3K Family Fun Walk through the beautiful Sarah P. Duke Gardens that are just a short walk from the Duke Cancer Center. That’s when the gears in my head (what was left of them after surgery, anyway) really started turning. I decided that the best way that I could give brain cancer the “middle finger” would be to turn it into something good; I would make a giant pitcher of the sweetest “lemonade” out of these huge, sour lemons that were just handed to me. What would be the point of going through all of the physical and emotional pain, stress, and other hardships of brain surgery, recovery, physical therapy, occupational therapy, psychotherapy, chemotherapy, and immunotherapy if I couldn’t then turn around and do something good with it all? If the end result is something good, then brain cancer doesn’t win.

Coincidentally, I couldn’t think of a better way of saying “Thank You!” to doctors Henry Friedman, Allan Friedman, and the rest of their team of researchers, doctors, nurses, and staff for saving my life than by creating a huge fundraising team and raising a ton of money and awareness for their Brain Tumor Center. After considering the incredibly overwhelming and supportive response that Ashley and I received from our friends, family, coworkers, and clients immediately following the news of my cancer, I decided that I could recruit this same amazing community of supporters to do even greater good. With Ashley sound asleep right next to me, I feverishly tapped out an email on my phone to my TEAM of coworkers at EMPOWER. I had a plan to challenge them to help me assemble the largest team of runners and walkers possible for the 2016 Angels Among Us 5K, in honor of Dr. Henry Friedman who just so happened to be a long-standing personal training client of mine at EMPOWER. The immediate responses from my colleagues the next morning were brimming with excitement and included varying degrees of “Absolutely, we’re in!”, “I love this idea!”, and, “Heck yeah!! You just got me hype as hell!!”. Shortly after we announced our intentions to the EMPOWER community through a series of email blasts and Facebook posts, an EMPOWER client on Facebook coined the phrase #NESTORSTRONG. EMPOWER then put it on the backs of hundreds of “Duke blue” T-shirts (which we sold as part of our fundraising strategy), and our Angels Among Us team was born! In that first year we crushed both of our goals with over 100 registered runners and walkers (by far the most of any team that year), and we shattered our $5,000.00 fundraising goal by raising over $12,000.00 for brain cancer research with only our grassroots-style fundraising effort (no corporate donations). (CLICK HERE to watch EMPOWER Personalized Fitness Personal Training Director Blaine Warren hype-up TEAM #NESTORSTRONG before the start of the 2016 Angels Among Us 5K: https://youtu.be/cS7AurtMz3g) We definitely laid a solid foundation upon which we would only improve in the years to come.

As our physical and emotional connection to the Preston Robert Tisch Brain Tumor Center at Duke rapidly grew, Ashley decided to join the Angels Among Us Planning Committee in January of 2016. While attending the monthly Committee meetings leading up to the April 2016 event, Ashley got to know Greg Sousa on a more personal level as he had been serving as a Survivor member of the Planning Committee for several years. After Greg’s untimely passing in July of 2016, I decided to join Ashley on the Planning Committee for the 2017 edition of the event. (CLICK HERE to read more about Greg Sousa in my previous post, A Moment of Clarity: https://becomepowerful.com/2018/01/26/a-moment-of-clarity/) As a result of my deeper involvement with the Angels Among Us organization, I have been afforded many unique opportunities to continue using my story to inspire and motivate others with brain cancer, including a short local television interview in preparation for the 2017 race (CLICK HERE to watch the interview: http://abc11.com/society/duke-university-gears-up-for-angels-among-us-/1910691/), several speaking engagements with the Angels Among Us Board of Advisors (CLICK HERE to watch me speak at the 2017 Angels Among Us Board of Advisors Spring Dinner with Tom O’Donnell: https://youtu.be/fdX1UeIEJJA); and a couple of feature stories on the Preston Robert Tisch Brain Tumor Center website (CLICK HERE to read: https://tischbraintumorcenter.duke.edu/news/it-was-insane-battle-against-100-miles-cancer)(CLICK HERE to read: https://tischbraintumorcenter.duke.edu/news/team-paonessa-my-cancer-story-%E2%80%94-nestor-paonessa).

In 2017, we decided to shift TEAM #NESTORSTRONG’s focus more towards the pure fundraising side of things (as opposed to just having a bunch of people registered to run on our team, because we realized that it is the money that truly makes the difference in the Brain Tumor Center’s ability to conduct research, develop treatments, and hopefully someday, a cure), and so we quadrupled our goal to $20,000.00. We added several new fundraising initiatives, including a live and silent auction barbecue event hosted by EMPOWER, which proved to be extremely successful beyond our wildest expectations. In that one afternoon alone we surpassed our $20,000.00 goal! (CLICK HERE to watch Nestor and his neuro-oncologist Dr. Henry Friedman speak at the BBQ event: https://youtu.be/qZHLDXfYqjE).

Inspired by my hero Greg Sousa, who famously completed a 900 mile bike ride from Durham, NC to Sarasota, FL to raise funds for the Duke Brain Tumor Center (CLICK HERE to read about Greg’s ride in the July 2014 issue of Endurance Magazine: http://magazine.endurancemag.com/HTML5/Endurance-Magazine-LLC-Endurance-Magazine-July-2014). I extrapolated that if Greg could ride a bike that far, then surely I could run just 100 miles to raise funds and awareness for the Brain Tumor Center. In doing so, I could accomplish one of my big life goals (to run a 100 mile ultra-marathon) and do some more good with my story at the same time – a huge WIN-WIN! I promptly announced my goal and intentions on social media; I declared that I was going to complete the 2017 Umstead 100 Mile Endurance Run to raise funds and awareness for the Brain Tumor Center at Duke and brain cancer research, and I encouraged people to donate money to the cause by making a per-mile pledge. I am extremely grateful for the response that this appeal generated, and these funds were included in our 2017 fundraising total of over $20,000 (CLICK HERE to read more about the 100 Mile run in my previous post, Put Your Money Where Your Mouth Is: https://becomepowerful.com/2018/05/16/put-money-mouth/) (CLICK HERE to read a wrap-up of the run in the June 7th, 2017 edition of the Duke Chronicle: http://www.dukechronicle.com/article/2017/06/a-battle-against-100-miles-cancer).
As of this writing, TEAM #NESTORSTRONG has raised over $40,000.00 for Angels Among Us to directly benefit research at the Preston Robert Tisch Brain Tumor Center at Duke.

If this post has inspired and motivated you to join the fight against brain cancer by making a tax-deductible donation to TEAM #NESTORSTRONG and Angels Among Us, please CLICK HERE to make your secure donation now! (https://secure3.convio.net/dccc/site/Donation2;jsessionid=00000000.app30123a?idb=265285538&df_id=3282&3282.donation=form1&FR_ID=1460&mfc_pref=T&PROXY_ID=23637&PROXY_TYPE=22&NONCE_TOKEN=A61D65FD1B61C29377836ABA1153F81B).

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