The Routine

           The ritual usually begins sometime in the morning. Sitting in room lined with chairs, not unlike a strange barber shop, I wait for my turn to meet with any one of the many nurses milling about. A plastic flower which looks like it belongs on a trucker’s dashboard next to a dancing hula lady bobs up and down on the window pane just to my left, offering whatever cheer it can in the otherwise sterile and beige-ridden area. Finally, I am wished a good morning and asked how I am doing. Pleasantries exchanged, I remove my shirt to reveal the small round bulge on my upper chest which marks the place where my port was installed. I thought with half-amusement when I had this access point put in that I looked like a less cool and certainly less shiny version of Iron Man. After inserting the IV needle, the nurse takes the blood he or she needs and tells me to have a good day, leaving the tubing dangling beneath my shirt for later use. In the following hour, I meet with my hematologist, a wonderfully friendly Indian woman named Dr. Reddy, and we discuss my blood counts and how my treatment is progressing. Another hour or so separates when I have to appear at the Infusion Center, and we typically take the time to grab lunch in the hospital’s cafeteria.

Once at the Infusion Center, we arrive at a room not much larger than a double-wide closet. Two chairs rest unassumingly in the corners while a TV offers the only apparent means of distraction opposite. I take an initial communion of small white pills from a paper cup and wait for half an hour or so while they take their positions to wage war against the waves of nausea inevitably on the way. A friendly nurse then takes her place and attaches a large syringe filled with the unmistakable red liquid that is Adriamycin (affectionately called “the red devil”) to my IV. Perpetually checking to make sure the toxic substance doesn’t escape the confines of my veins, the administration only takes about fifteen minutes or so. The same procedure is repeated for the Bleomycin and Vinblastine, only these liquids appear more innocuously clear. Finally, the Dacarbazine is brought forth in a plastic bag with a green covering and is set to drip steadily through the IV for anywhere between an hour or hour and a half. Once completed, we pick up our things and head home, our dues paid for the next two weeks. And so it is, again and again like the instructions on a shampoo bottle: lather, rinse, repeat. A steady, unrelenting attack: this is the battle plan against the enemy known as Hodgkin’s.

That much was easy enough to establish. I simply have to follow the procedures prescribed and then go about my business. The real challenge was trying to figure out what “going about my business” even looked like now. Having been a student basically nonstop for the past fifteen years of my life, I had always developed a routine for myself in order to stay up with my schoolwork and any other extracurriculars I might be involved in. Everything had its place, everything had its allotted time, and thus I moved forward with clear goals and objectives in mind. Now, however, I suddenly found myself suspended in a weird, amorphous existence where I no longer had academic requirements to fill or even employment obligations to attend to. I was simply taking time off to “get better.” I can tell you right now, definitively and decidedly, that sitting around and “getting better” does not exactly fill the hours of the day. Sure, it was nice taking a break from the hustle and bustle of a college kid’s breakneck-paced life, but after a couple of weeks or so, a creeping question worked its way to the forefront of my mind, “What do I do with myself?”

We all value the constantly elusive and ever so sweet commodity that is free time in the small doses in which we can find it, but here I was with nothing but free time on my day to day diet, and I began to feel bloated and sluggish like someone who has taken to eating only desserts for every meal. Whereas I had been driven to achieve while in school, I now felt directionless and ineffective, spending many days doing little more than watching TV or reading a book. I would rouse myself on some occasions with declarations of “I’m going to go out and get something done today!” only to realize that I really didn’t have anything to do out and get done. All at once, an opportunity to go to the grocery store or renew a car’s registration became the pinnacle of a day’s productivity, and I would seize the chance to feel like I had accomplished something worthwhile. Granted, not all days were like this simply because many times I would feel too poorly to do anything more than lay around in my living room, and during those times I was extremely grateful for the down time.

My situation seemed incurably drab, and I began to dread the months I would have to spend in this stale, uninspiring limbo. At some point, I can’t say exactly when, I took a step back and looked at my circumstances in a different light, however. Life, I realized, comes in seasons, both varied and unpredictable. In the season of my life as a college student, I had been hardwired with the go, go, go mindset that is necessary to survive and succeed in such an environment. Now, however, I was in a season of my life where all of that was stripped away and I had only the obligation to wake up each morning and continue breathing. And while not fast-paced or even very exciting, it was unmistakable how important this time was, not just for my health, but for my wellbeing as a person. I am learning that adversity comes in all shapes and sizes and even disguises itself in clever costumes to make us think that it is not adversity at all. All we can do, all we can ever do, is pick up the burdens placed before us and learn how to grow from the steps we take under their weight. Of all the trials I imagined that would accompany battling cancer, I never guessed that boredom and restlessness would loom over me just as ominously as the physical side-effects. Yet once I recognized them for what they were, I found myself better equipped to embrace them as tools for learning and not just trivial annoyances. And while I cannot quantify or foresee what the benefits of weathering such trials might be, I only know I must weather them nonetheless.

Lather, rinse, repeat.

The Plan

          Though chemotherapy was not a subject that I had given much consideration before this time, I think I was under the impression that the term was descriptive of a singular thing, as if all cancer patients received the same treatment regardless of their respective ailments. I quickly discovered the misguidedness of this preconception, however, and instead realized that the type of chemo prescribed by a physician varies in both duration and toxicity based on the particular cancer a patient has. In my case, the most standard approach to treating stage 2 Hodgkin’s is a chemo regimen concisely known as ABVD. As one can pretty easily guess, the four letters stand as an acronym for the four chemicals used in the therapy. A: Adriamycin, B: Bleomycin, V: Vinblastine, D: Dacarbazine. After learning these names, I instantly formed a love/hate relationship with them. Love, for the good they were meant to do against the cancer; hate, for the cost they demanded from my body in return.

            As anyone slightly acquainted with chemo knows, the real bugger about the whole thing is its indiscriminate nature. Yes, it is designed to attack the rapidly dividing cancer cells in your body, but it doesn’t take the time to figure out which rapidly dividing cells are cancer and which are say, the cells that constitute your immune system or the cells responsible for producing your hair. It just goes like a rabid dog, snapping up anything that meets its unfortunately broad criteria. Every two weeks for six months was my initial sentencing. That was, of course, if the PET scan after two months of treatment came back clean, meaning the cancer was responding well. While engaging in something that can generally be regarded as less than fun for half of a year did not send me into giddy fits, I reasoned that if I could suffer through the effects of this thing growing inside my chest for the better part of four years, I could stand going through a little more to be rid of it. The doctors also recommended an additional month of radiation following chemo, but we haven’t landed the plane on that one yet. There are still pros and cons to be weighed.

            So there was the plan, plain and simple enough. Yet at the time, the big question that still remained to be answered was could I remain in school while I did chemo? Of course, I tried to squeeze every bit of optimism from the doctors that I could; I just needed one of them to say “Oh yeah, no big deal. You can stay in school and handle this other crap no problem,” and I would have taken that as my license to forge ahead on my road to the increasingly evasive goal of graduating in four years. Unfortunately, no one was willing to offer anything more than a measly “Well, you might be okay, but don’t count on it.” My inner super student slumped in defeat. Nothing seemed more repulsive to me than to abandon the Auburn ship for at least one semester while my body decided how it was going to react to prescribed doses of poison. I wasn’t just giving up my role as a student, but also my leadership position in a student volunteer organization and my job at the university’s writing center, both of which I enjoyed immensely. Cancer was already going to take my health away; was it too much to ask to keep these other things that I valued so highly? Though it pained me, I could not in good conscience throw myself back into my busy student life without knowing what condition I would be in for the next several months. Like a little kid having his candy pried from his hungry fingers, I relinquished my hope that I would return to school for the fall semester.

            I have never been particularly good at goodbyes. Perhaps somewhere deep down I believe that if I refuse to recognize something is over, it won’t be. Despite my aversion, however, I said goodbye to many of my friends at Auburn during the one weekend I spent there while I collected my things to come home. I loathed doing it, but I said my farewells with an underpinning note of optimism and anticipation that my absence would only be temporary and that I would return better than when I left. To this day I don’t know for sure how long my educational hiatus will last, but I continually hope for a sooner rather than later prognosis. So that was the plan: fight one battle before returning to the other. It made the most logical sense, and it was in accordance with all the voices of caution and reason that only wished me the best. Even so, that didn’t keep me from hating it all the same.

The Floods

           Until the words were spoken, I hadn't realized I had been holding my breath for the past five days. Inwardly, I inhaled like a diver breaking the surface of the water after trying to touch the bottom of the ocean. “Hodgkin’s.” That was the best scenario we had been hoping for; that meant the numbers were heavily in our favor for beating this thing. The first flood was relief: I no longer had to guess, wonder, or hypothesize. I now knew my enemy, and I knew I could fight and win. The shadows of dread that had clung to me and tried to drag me down into an endless maze of worst-case scenarios finally washed away in the face of my new-found reality, albeit still less than ideal.

            The next flood that quickly followed was a slew of questions intermingled with new information. What were the treatment options? Where would be the best place to have those treatments done? What were the potential side effects? What was the survival rate? Could I stay in school? Why does lymphoma develop? Why did someone not catch this before? And on and on it went, all the while we soaked it up hungrily, eager to finally have some useful information of which we had been deprived for the better part of a week. The doctors that were working with us were extremely helpful and were happy to answer our relentless interrogations to the best of their abilities. One was even so kind as to set up a Skype session with my dad in order to catch him up to speed with all the new developments. Even though it was only on a computer screen, I can’t express how glad I was to see that reassuring face after feeling so isolated for days on end.

            We had a lot to work through, a lot of options to consider, but I was grateful that we at least could start devising our strategy. We would remain in Rochester for another day or two simply to complete a few preliminary tests to see if my body was strong enough to handle chemotherapy. Especially entertaining to watch was the echocardiogram I had done of my heart. Essentially it was like having an ultrasound, but instead of a baby I got to see the valves of my heart opening and closing like little hands high-fiving one another. Luckily everything checked out, so we could continue without any special restrictions or stipulations. Additionally, I finally felt comfortable sharing the news of my condition with friends and extended family since I could give them a definite diagnosis rather than freaking everyone out with a vague “I have a tumor, but we don’t know what it is for sure.”

            What quickly followed after letting the word out was the third flood: wave after wave of encouragement, support, and love, the likes of which I had never seen before. I can honestly say that from the time my diagnosis was made public to the present day, I have received some of the most uplifting and genuinely kind words from both friends and family; words that I could never imagine deserving, but words that I treasure and count just as important as any medicine to my recovery. Even writing this, I am blown away when I think about how lucky I am to have the people in my life that I do. It’s almost overwhelming, but in the best possible way, make no mistake.

            After what had felt like nothing short of an eternity, my mom and I finally found ourselves boarding the plane that would take us back home. I had been living in a state of near unreality for the past ten days, as if my time at Mayo Clinic had been a venture into some sort of purgatory, and I felt like returning home would finally reinstate me in the land of the living. As the world below shrank away into a sea of clouds and endless horizon, a final, creeping flood took hold of me: realization. Yes, I was returning home, and yes that was a huge relief, but I was slowly realizing that I was not returning as the same person. Though I would soon be in familiar surroundings with familiar people, I had already entered into a completely unfamiliar situation. It’s true, I had been sick for a long time; the only difference was now I knew what to call it. I suppose that knowledge and having some idea of what the road to getting better entailed contributed to the sense of fear and excitement that mingled together into an indistinguishable mass of anticipation that weighed and continues to weigh on me. Be that as it may, I knew I was not in this alone, and that was enough for me to welcome the challenge ahead with all the reserved confidence of one who firmly believes in victory, but is unsure of the journey to reach it.

The Wait

            Though they do not completely sedate you when taking a tissue biopsy out of your chest, the experience was not necessarily unpleasant. Though I was aware of the rather large needle being inserted into my body and the blood issuing forth with each extraction, the numbing agents did their job beautifully and I was spared the pain I knew I should be feeling. The unpleasant part came with the knowledge that we would not know the results for several days. As misfortune would have it, the procedure took place just before Labor Day weekend, meaning those responsible for analyzing the tissue and determining my official diagnosis would not be working for a couple of days, thus prolonging the already lengthy process of histological examination.

            So there I was, alone, save for the company of my mom, in a small Minnesotan city with my nearest friends or family several states away. In the short time I had spent in Rochester, I had magically transformed from a relatively normal 22-year-old college student into a cancer patient. Though the doctor had been mostly sure of what we were dealing with, I could not shake the fact that there existed a small possibility that what was living inside of my chest could be something more insidious. I tried my best not to dwell on the thought, but uncertainty gnawed at my mind like merciless termites.

            We spent the next several days doing our best to keep ourselves occupied. My mom and I became what felt like combatants in a WWII trench: both unprepared for the enemy we now faced, but continually fighting to keep each other’s morale up, knowing that for now we only had one another to rely on. Of course, phone calls and emails let those closest to us know what was happening, and I cherished the love, encouragement, and support that came spilling out of every reply we received. For all that though, I would have killed for a hug. I had to be incredibly grateful, however, because if a guy had to choose only one person to spend the most uncertain days of his life with, he couldn’t do better than having his momma’s love right there to help him along.

            Rochester didn’t offer much in the way of sightseeing or entertainment, but we found several good burger joints and a nice park nearby that teemed with veritable armies of friendly geese and ducks to spend some of our free time with. We even took one day to travel to Minneapolis and see the monstrosity known as the Mall of America. Normally I wouldn’t so readily consent to spending a day at a mall, but they had roller coasters, so how could I say no? The days crept forward in this fashion, each one a challenge to maintain sanity, each one a reminder that my nicely planned life was irreparably off-course.

            Eventually, I found myself sitting at a table in an open-air courtyard ordering Greek cuisine from one of the local cafes on the eve of the day of reckoning. We would know the results tomorrow; that much had been assured to us. As always, the termites were at work in my head, doing their best to weaken the supports that upheld what I had doggedly told myself again and again, “I’m going to be okay.” I did everything I could to dissolve any associations between this meal and the Last Supper. For the first time that I can remember, I felt the creeping animal fear that my existence on this planet might be jeopardy. Of course we must all face our mortality at some point, but did it have to be this point? I couldn’t shake the various scenarios playing themselves out in my imagination. The doctor entering the room, sitting down and beginning with a somber “Unfortunately…” or “I’m sorry…”

            I tried to retrain my focus on the baklava on my plate or the soft gurgling of the fountain just yards from where we sat, anything to bring me back to the present, physical world of which I was still very much a part, and to which I intended to remain a part so far as I could help it. I took solace in the fact that, if nothing else, tomorrow the wait would be over. The agonizing, seemingly endless wait would be over and thank God for that.

The Answer

I had waited the better part of four years for those four words, words that flowed off the doctor’s lips that day with such ease that the skeptic within me immediately doubted their veracity. “We found the answer.” I had been at Mayo Clinic for less than 24 hours, yet this man believed he had solved the riddle to my unending, unrelenting itching; itching that had left 16 doctors before him scratching their heads and offering best guesses and conjectures instead of solutions. Of course I wanted to believe him, but the multitude of past ineffective treatments left me guarded and reserved at any statements of surety. I leaned forward, saying nothing but waiting to hear what he had to say.

“The results of the CT scan just came back, and they found that you have a large mediastinal mass in the center of your chest. It’s most likely lymphoma.” Silence. Blank stare. I sat there like a stage player who had forgotten his lines. This was a situation I had not rehearsed. Cancer? I thought I had prepared myself for whatever the doctors could dish out to me, but somehow this contingency had never crossed my mind. “Would you like to take a look?” My ability to speak seemed all but gone, but I managed to nod my head and offer a hollow “Sure,” scooting my chair around to better see the computer screen.

As he clicked through the series of cross sections of my chest, he stopped somewhere above my heart and pointed. “See that blurry mass right there? That’s not supposed to be there.” He continued to click forward, bit by bit revealing the 13.3 centimeters of uninvited guest residing in the spaces surrounding my heart and lungs. I remained stolid in the unreality of it all. I didn’t feel the thing nearly the size of a grapefruit inside of me, so how could it really be there? Maybe it was some kind of mistake. It was just an image on a screen after all.

“It’s okay to be upset,” I hear the doctor say. “Most people are upset when they get this kind of news.” I nearly apologize for my lack of reaction. I feel like I am doing the moment an injustice by not falling to my knees or at least squeezing out a few tears to indicate that I understand the weight of what I am being told.

“I’m not sure I know how to react,” I respond truthfully. I look at my mom sitting beside me; she puts a hand on my shoulder as the tears run down her face. After a few moments spent letting the shock dissipate, we ask how cancer can be the cause of chronic itching. The doctor explains that while the direct connection between the two is not precisely known, there is a well-documented association between itching and lymphoma. I’m amazed that this is the first time we have ever heard of this. In the dozens of appointments in which I had described my symptoms to well-trained medical professionals, never had cancer even been a consideration in their attempts to explain my condition.

“We’ll have to do a biopsy of the mass to determine for sure what kind of cancer this is, but I feel 90% sure that we’re looking at Hodgkin’s Lymphoma.” The doctor assures us that of all the cancers to get, this is the one you want. A morbidly humorous image forms in my mind of strolling down an isle of cancers, a salesman pointing to Hodgkin’s with a reassuring wink, This is the one you want, kid. At least I had the sense to get the right brand of cancer.

Knowing we could not move forward until the biopsy was taken and the results analyzed, we walked out of room 41A, grateful we finally had our answer, terrified by what the answer meant.