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,” (http://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” (http://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?!