11. This Little Neighbor of Mine

By In Treatment

The day came. February 20th stared at me from the page of my calendar for a while now. It’s funny how far away a day seems when you are staring at a calendar, especially if it has borders filled with designs, landscapes or little cute kittens on it. Funny that we have these images on calendars…makes me wonder what doom lies ahead that my calendar has to have a Garfield theme. Some days, the calendar brought anxiety and sometimes it brought impatience, but there was never a day when I didn’t have some moment of awareness of what day it was and where that day was in relation to the 20th. I started to notice the days regardless of what verbiage was occupying the 24-hour square on a page. Days mattered. I lived over thirty years of my life with a great percentage being what I had done and what I was going to do, but perhaps not enough time doing, thinking, being…NOW. So, February 20th, 2012, I stared at the now. I decided that if my calendar knows what I am doing tomorrow and the next day, or week, or month, then why should I also have to worry? I had everything organized on paper and set alarms on my phone so I could just focus on the moment, whatever it may be.

When I was diagnosed, there was nothing in my mind about the surgery. I never knew when the surgery would be, so when I got a phone call to tell me I was having surgery the next day, the only alarm clock set was to wake me up. But this wasn’t surgery. If the scenario was based on a cup of coffee, having surgery was the whole cup in one sitting. It might take time to drink, but before you know it, it is gone. Chemotherapy and radiation were like drinking directly from the nozzle on an automatic coffee maker. The drips would eventually amount to the same as that one cup, but the process of waiting for the next lingering drip lacked the same satisfaction. This drip that seemingly would not end forced me to be in the moment.  These drips of treatment would be a daily routine, leading to a day when that routine would hopefully cease forever. Thinking of all that coffee, I would have no problem switching over to hot tea! And it turns out that green tea not only has caffeine, but is also has cancer prevention and healing properties.

I started that day like I would my next six weeks. I woke up and went to work. Now, the paradox plays out in your mind when you are facing cancer treatment, most of us are working to pay for the insurance that we need in order to defray the cost of these treatments. In this society, one must make money to live, while others live to make money. I was stuck somewhere in the middle, as I needed to work to gain insurance and cash to pay for something that was trying to kill me. Now does that motivate you or does it make you stare at the screen and cross your eyes until they close? Again, I was somewhere in the middle.

My apartment was on a big hill on Connecticut Ave so the walk down in the morning to the local metro stop was brisk, refreshing, and a reminder that I was going to work. Mere months ago, I would get on this same metro and squint at the advertisements and station names as I passed through. My head wouldn’t let my eyes adjust to the constant vibrations of the tracks. My mind felt heavy and I would dream of crawling back into my bed if only for the dark stillness. Yet on February 20th, here I was heading into work on the metro and the advertisements on the train were so clear it was if they were speaking to me. The train station signs looked like billboards as they slowly passed with the stopping train. We often lament on the fact that we have to go through issues in life, and we rarely celebrate the very things that we were just yearning for moments ago. Needless to say, I LOVE looking at signs on the train for no other reason than that I can. What I loved the most is that I didn’t have to think and test myself constantly while wondering what was wrong.

I would usually exit the Red line at Dupont Circle, which gave me some space from the massive human hug that makes up the metro. I say hug, but this is not like a childhood hug from your mom; it is more like a forced activity to bond at a work conference in Orlando in the summer. The fresh air and free space opened my mind to the day, plus, without running, it was nice to walk. I would start my day with a snack, an amazing amount of vitamins and supplements, and a Bactrim. Taking Bactrim is the first sign that you are about to terrorize your body. It is an antibiotic, which helps keep you from getting a virus while the treatment ravishes your immune system. I took all my medications with a sense of purpose, knowing that what I was doing was intentional. I wasn’t taking an Advil to relieve muscle pain; I was taking medicine to both kill and save my body, which I did not take lightly. I took Bactrim every other day, so the days I did not, I considered it a minor victory in that it was one less pill to swallow. This was something that came in handy later as the moisture in my body felt like it was an oasis on a distant desert horizon. It was as if the treatment and pills were collectively working against my salivary glands…there was not enough water in the world!

A few hours later at 11:30AM, I was on to my dose of Zofran. If you are not familiar with Zofran, it is supposed to work in the same line with Bactrim. It was trying to help me survive chemotherapy and radiation. Zofran helps to prevent nausea and vomiting. I never questioned taking this and while I often felt nauseous, I did not vomit, so I felt its purpose was being fulfilled. My medical team told me that it is an important drug to take and that if I didn’t, I would become more and more nauseous and starting the pill then was not going to help. If you are going to eat spicy sausage and you know it doesn’t like you, you would probably take Prilosec before you ate it, but if you forget or you just couldn’t deny yourself, then you were destined to go to TUMS land. The problem with chemo and radiation is that the medical communities has not come up with a version of TUMS for people in treatment. Perhaps that is because they want to prepare and not react? If so, they are truly geniuses, because let’s face it, most of us are going for the TUMS. Now at this time of the day, I would have so many pills in my stomach that I felt like a medicine cabinet and the Zofran almost made me want to vomit. Damn it, where are those CHEMO TUMS!

A cool hour of work would go by and it was time for one of the main events. At 12:30PM I closed my door to my office and took meditative breaths as I stared at the gel cap containing poison. It read TEMODAR on it, but it might as well of had skull and crossbones on it on the stamped label. If it did, I bet the skull would be smirking in a maniacal way. I framed my mind with positivity to allow my mouth to open and consume what it knew was wrong. I learned quickly that with the chemotherapy pill, it is best to fill my mouth with water and throw it into the back of my throat as far as you can because it burned anything it touched. Those times when it hit my tongue felt like I was sucking on hot peppers that taste like bleach. Imagine being at a Mexican restaurant owned and managed by Clorox. TUMS isn’t helping that!

A couple hours later at 2:30PM, I would close up my work and make my way to Georgetown Lombardi Cancer Center for my daily radiation appointment. For those that didn’t know I was going through treatment, they probably thought I was a slacker, brushing off work each day. If they didn’t know and they thought that way, I wonder the sound they made when they found out the slacker was going to get radiation and still coming to work each day! It was just over two miles from my office to the Center and most days I pushed myself to walk the distance. Some days the weather and my energy were parallel and allowed me to do so. Other times I would hop on the bus to minimize the energy I put out. As I got closer to the Center, my feet or the bus would seem to slow in protest. The bus would drop me off a few blocks away and my walk down the manicured, leafy streets of Georgetown campus hardened my focus. I won’t lie, often it was like walking the Green Mile, but I would cast those thoughts away and focus on WHY I am doing this. I would walk through the sliding doors and by the statute of Vince Lombardi. (The storied coach that did his cancer treatment there and they named the cancer center after him.) I would always remember one of his quotes, “It’s not whether you get knocked down, it’s whether you get up.” I was about to get knocked down without a doubt, but it was up to me to get up, and in my mind, there was no doubt I would. Whether I lived or died, that was going to be my attitude regardless.

Up to this point in the day, I have mainly put pills in my mouth, but radiation was a different beast altogether. I was relieved that my walk into the Center was over, but now the scrimmage was about to begin. This was not a game, so there wasn’t a crowd cheering me on as I entered the arena; it was just practice as I tried to do this process better every day. My first day of radiation was pretty wild, but as I created a routine, it became part of my effort to be healthy. Radiation would last the next six weeks, but I was somewhat thrilled that the radiation machine took weekends off. I thought it was very courteous to give me that time off, but I was reminded each weekend morning that chemotherapy was not as kind. Hospital staff need weekends, but self-service pills were my duty to continue.

Regardless, I knew the next 6 weeks would probably be the worst, so I needed motivation to survive and thrive. When you have brain cancer, the odds are automatically stacked against you. It is one of the more rare cancers and the most deadly on top of that. When I learned about brain cancer and especially having a Grade III (where a GBM is Grade IV) I knew I was the underdog in this fight. I considered myself to have great skills like poison pills and laser beams on my side, but I also knew the unpredictable nature of cancer. It’s shifty, agile, and it knows there is no cure for it. Cancer plays the waiting game better than any human could. So my goal was to do everything I could to try and exhaust cancer into going away…moving out.

I refused to refer to my tumor as such. Cancer or tumor or Grade III Anaplastic Astocytoma had such a negative connotation to them, so I refer to it as my “neighbor”. He was and is, my brain neighbor. We all have had a neighbor at some point in life that was truly terrible, and you knew it the moment they moved in. You try to be nice at first, but you soon realize that your neighbor is not really into you. You wave and say hi and your neighbor looks straight through you as if you were a puff of wind. The neighbor starts having loud parties with cars parked everywhere on the once sleepy cul-de-sac. You eventually protest, but you realize that it might be too late for niceties. You start doing most everything you can to force your neighbor to leave, as you start losing sleep and your enjoyment in life starts to trickle out. You finally have enough and you get combative with your neighbor and write anonymous notes taped to his door to tell him to move. You ring the doorbell, knock on the door and finally just start walking in and move out whatever contents of the home you can. You throw belongings on the front yard. You start to see that you are going mad, but that you feel the turning tide and you get a renewing rush that your plan might work. You keep up your antics, but the neighbor is still there! Desperate to have your precious cul-de-sac back, you calmly walk next door with a flamethrower and you commit arson with a joyful smile that could only be matched by the Cheshire Cat. No? You never had a neighbor like that? Well, I still do, and we eventually made a deal for peace and a piece of my mind.

I would get to the waiting room each day and immediately look to see the progress of the never-ending puzzle on the side table near the registration window. I figured if there were progress, there must have been energy from one or more of my fellow radiation-receiving friends. I sat there on my first day just wondering what it was going to be like. I had been prepped by Dr. C and his team, but I also knew that Dr. C nor his team had ever been the one receiving radiation, so while it was all the same process, we were looking through different lenses. My name was eventually called and I headed down the hall into a small waiting room attached to a changing room. I changed into my gown and then was called to the radiation room. It was kind of like I was some sort of professional athlete. My mask would be hanging on the wall in the same place each time I entered and I would grab it as if it were my helmet. This “helmet” really sucked at protection, but it did its job of keeping me still and aligned.

I met Ashley my first day and I would see her most every time I was in for my appointment. She was kind and had the gift of gab. She could talk about anything and was skilled at the art of conversational direction and redirection. As we spoke, I somehow was lying on the radiation table and the next thing I know my mask was placed on my head, neck and face. “CLICK, CLICK, CLICK……CLICK” were the sounds that the mask made as it was snapped into the table. The last CLICK was always delayed as it bared the pressure of being the final snap to secure my head to the table. It was like that last button on your favorite shirt from high school that you know you were too big to wear, but as long as it buttoned, you felt wonderful. Lying there, I felt as if I was a YouTube sensation of a kid running through what they thought was an open sliding door, only to find the screen was closed. Mesh screen pushed into your face with a sense of anxiety and entrapment. I stayed still as Ashley told me what to expect. There were two mechanical arms that were programmed to rotate around my head, aiming its laser beams at the taped spot on my mask. I was somewhat fascinated and somewhat terrified. I mean, laser beams…aimed at my head. Much like the lesson I learned as a child not to ingest poison, I am pretty sure, “don’t aim laser beams at your head” was a pretty close second. Here I am abiding by these rules during my childhood only to find myself doing both at the age of thirty-two, and now, I don’t want to do them at all.

I lied on the table staring upward towards the tiled ceiling. Ashley gave her final instructions to not move, as we both shared a smirk. My head was clamped to a table and my body was strapped down so the very notion of free will made me smile. My smile shrank to a pensive straight line and my mind became as focused as the trained laser beams just waiting to have their buttons pushed. Ashley left the room and just like my MRIs, I was alone with my thoughts. I created the first episode of Neighbors Are Like Cancer in my mind as the machine turned on. I focused all of my energy on the scenes as described above, each one playing out as a daytime drama, progressing throughout every visit. The lasers started as I welcomed my neighbor to the cul-de-sac with some suspicions that something wasn’t right about it.

The radiation ended, I said goodbye to Ashley, changed back into my clothes and through the waiting room, down the labyrinth of halls and into daylight. This was the first day of Treatment. I thought about the word as I strolled the almost three-miles back to my apartment…Treatment.

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