Peekaboo

The first time I had cancer I went through five weeks of radiation directed at my hip region, including some of my bowel. This caused mild diarrhea by the second or third week, which gradually intensified to the atomic variety. The hospital was about an hour from my house, so it was never a bad idea to use the toilet before my departure, even if I didn’t have an acute urge to shit.

The bathroom was very large for one person. It had only one sink, one toilet, a lock on the door and tons of open space.

I remember one specific afternoon toward the end of the five-week period. I expected heavy traffic on Interstate 66, and I also needed to poop. Waiting it out wasn’t an option, regardless of how much I preferred the comfort of my own home. I turned the light on, closed the door, and dropped trow.

I wouldn’t wish for anyone to be in the bathroom on that warm, sunny afternoon. No matter how bad a person he is, or how terrible a transgression he has committed, that punishment would not fit the crime.

After finishing I rested a couple minutes before cleaning up and going home. That’s when he walked in because I forgot to lock the door. He was a large man somewhere around 5’11 and 240 pounds. He was in his forties with glasses. He wore a shirt and tie. He opened the door and turned 90 degrees to his left, at which point he had a direct view of me and my junk.

The normal response would have been for the man to say “Whoops,” and immediately walk out. Not only did this large man not utter a word, but he also stuck around long enough for the door to close behind him. We stared at each other for multiple seconds. I can’t remember exactly what came out of my mouth, but I know it was along the lines of “Dude!”

or “Dude?”

or “Dude get out I’m taking a fucking shit here.”

Pooping Your Pants Is Cool
Like a Rock
Quarter Mile of Shit

Again (Part III of III)

Again (Part I of III)
Again (Part II of III)

As I said in Welcome to the Good Life (Part II of II), during my original cancer I had few responsibilities, and thus not much to worry about. When I got home at the beginning of March, and when I was still at UVA in a sense, I had even fewer responsibilities. I didn’t have to think about schoolwork. I didn’t have to plan for nighttime activities because my friends were mostly away at college. I didn’t have the pressure of hitting on girls and consequently getting shot down. All I had to do was find ways to entertain myself and get blood counts and transfusions. I was actually at peace more than any other point in my life. Bearing in mind I was in the process of finding a bone marrow donor and would need a transplant for long-term survival, that sounds absolutely insane. But it really was a very happy and peaceful two months.

Certainly, part of what made it so peaceful was all the snow we got that winter. There were two large snowstorms while I was still at school and another 20-incher when I got home. There is something about those oddly shaped flakes falling from the sky and the white landscape that makes me feel lively.

The transfusions were keeping my hemoglobin and platelets at manageable levels, and I had no other side effects, so I actually felt fantastic. I didn’t feel sick, tired or weak in the least bit. During clinic visits I wasn’t Ben, the patient – I was Ben, the friendly visitor. I talked to and joked with my doctors and nurses as if they were my buddies. I mostly ignored the other patients, who were probably jealous of how normal I looked. I wouldn’t go so far as to say I enjoyed the clinic visits, but I really didn’t mind them.

Johns Hopkins, one of the best health systems in the world, diagnosed my disease without much trouble. My parents, brother and I had a meeting with one of the doctors to discuss the disease and treatment options. It was there that I asked about my chances – for my particular disease there was a 30% universal chance of survival, he told us.

30% chance of living. 70% chance of dying.

After the meeting my brother and I talked about what he said. Many old people get that disease, so we immediately bumped my survival chance up to 50%. And since I was Superman, that number jumped to 80%. And an 80% chance of survival for a normal person meant an almost 100% chance for me. In a flash my 30% chance of survival became nearly 100%.

Call it ludicrous, idiotic or psychotic if you’d like, but that’s the way my mind worked. I couldn’t give a fuck what the official statistic was. As long as my chance of survival was more than 0%, in my mind I was going to live.

I can understand why some athletes think they’re invincible. And don’t assume they’re unaware of how unbelievably arrogant they are. They know just as I knew. But it was that arrogance that made me believe I’d survive, which then helped me to actually survive. It’s during those potentially discouraging times that I wouldn’t give up my Superman complex for all the friends, girls, money and success in the world.

We went to ESPN Zone in Baltimore for dinner. We got there just in time to see my two favorite sports shows, Around the Horn and Pardon the Interruption. We sat in a circular booth in perfect view of the projection screen. I switched between looking at the huge screen and the smaller LCD attached to our table. I ordered the chicken cheese steak and fries, the same as my brother. Why do I remember all this? Because it was one of the most enjoyable meals I’ve ever had. I was thrilled about my upcoming journey, knowing it would be hard, but also knowing I’d take care of business. I was so happy that I had such a “high” chance of survival.

Was I nuts? Hell yeah, I was. But I’m as proud of that 19-year-old Ben as any other. I challenge myself and anyone else to take such horrible news and immediately manipulate it into a positive. I seriously doubt I could duplicate that now. That’s motherfucking Superman for you.

I didn’t want things to change. That’s not to say I didn’t want to find a donor match and survive. I just didn’t want my peaceful world to change. That’s why when my mom told me a match was found, I was kind of sad. I’ll also admit that I was pretty fucking scared.

Several days before my parents and I left for our new apartment located two blocks from my transplant center, I went to the Orioles Opening Day game with my dad, brother and Uncle Joker. It was the coldest I’ve ever been at a baseball game, mostly because there was a snowstorm that left our clothes drenched. A blizzard during a baseball game – what an awesome sight. Uncle Joker let me borrow a pair of his Gortex gloves, which I still have because he left early and I never gave them back. “I stole Uncle Joker’s gloves,” I always joke with my dad. That was the last time I saw my uncle before my transplant.

From left: my brother, JD; me; my dad; Uncle Joker

The last time I saw many of my friends was at a going away party at Bubble’s house. Bubble was a high school friend whom I became better friends with at UVA. Some of my friends showed up to her house that night, including several from UVA, T2theZ who drove all the way from Virginia Tech just for the party, and a couple lovelies, Orange and Red. Much love to those who came; I’ll never forget it.

Many of my friends didn’t show up, including some of my really good friends. If they knew I was given a 70% chance of dying, then maybe they’d have come running.

The following day more friends came to hang out and watch the Final Four. Dirty-D was reluctant to leave when the games were over. Maybe he understood what a 30% chance meant more than I did.

Two days later, the peaceful world that I didn’t want to end did just that. I left my house for a four-month journey of a lifetime.

Again (Part II of III)

Again (Part I of III)

I was almost certain I wouldn’t finish the semester, so I barely went to any classes. I also had restrictions on exercising. And the one time I partied I was terrified the alcohol would cause internal bleeding because of my low platelets. That left my days about as unproductive as you can imagine. My roommate and I used to leave our door open, but I began closing it because I felt like such a loser when people passed by several times and I was still sitting in my chair playing Tiger Woods PGA Tour 2003 and Grand Theft Auto: Vice City. The most productive thing I did was make a compilation CD of the best Vice City songs and copy it for my hall mates. There was some kickass 80’s music on that game.

My bone marrow was dying so fast it was scary. Within weeks of finding out there was a problem I was already getting blood and platelet transfusions regularly. If I wasn’t in my dorm room playing PlayStation 2, I was probably hooked up to an IV at the UVA hematology/oncology clinic.

I don’t know why it took me so long, but at the end of February I realized that by being at school instead of at home, I was simply wasting my parents’ money. Fortunately, I came to this realization while they could still get a refund on my tuition and other expenses. So, when everyone else was leaving for spring break, I packed my things and went home for good.

It was embarrassing the way I handled my departure. My friend, PingPongGirl, said, “I would’ve made my hall mates throw a huge party for me.” But, there was no such party. Instead, I sent this email:

What up fellas,
I'm sorry to say this, but I will not be coming back here after spring break. I'm leaving Friday and I'm leaving for good. I will be back next year, I'm living in a house near the Subway at the end of JPA. If any of you have any of my stuff, I'd appreciate it if you gave it back. The only thing I know I'm missing is the Friends Volume 2 DVD. I’ll still have my screen name if you want to keep in touch. Also, I don't give a fuck if you ask me what the problem is, you just won't hear me bring it up much. Peace out fuckers.
Ben
Projected Wes reaction: Naw man, naw.

Won’t hear me bring it up much? How about not at all. My roommate, Dirty-D, asked questions, but I left with most of them absolutely clueless. After some of my hall mates helped load stuff into my dad’s van, I went back to my room one more time to look. It was like I was never there to begin with. The room looked so empty, mostly because Dirty-D barely had anything with the exception of a 13-inch TV that could’ve been confused for a 7-inch. Other than one decent academic semester and some new friends, there wasn’t much proof I was ever a Wahoo.

Again (Part III of III)

Again (Part I of III)

I am king of these parts. All the doctors and nurses know me and tell me how healthy I look. It’s been 28 months since my original cancer diagnosis, and 16 months since I became cancer-free. This is actually more of a social visit than anything else. I haven’t seen these friends of mine since the summer, about six months ago. They ask about my first semester at UVA. They know the reason I’m here is simply following the protocol. I defeated cancer with such relative ease, it’s expected that I’ll remain healthy forever. I feel as strong as I’ve been since before it all started when I was 16.

It was the most common of blood tests that changed everything – the CBC, or Complete Blood Count. It showed that my bone marrow was dying without me even knowing it. No clue, no idea, never crossed my mind, impossible. IMPOSSIBLE. And yet, it was really happening. My nurse practitioner said it could’ve been a fluke and wanted to redo the test, but I knew it wasn’t. I was already mentally preparing myself for going to battle with my second severe illness. I was the self-proclaimed Greatest Cancer Patient Ever and I had to live up to my reputation.

How do you tell people that instead of being perfectly healthy, your blood counts are plummeting for unknown reasons? I didn’t have to share much bad news during my first cancer. My family and friends did that for me. To be honest, I have trouble remembering how the word got spread the second time. I know I told my family and some of my good friends. I told my roommate I wouldn’t make it back to school for a week or two. I’ll never forget the message my good friend, Infinicuralier, left on my answering machine after he heard the news. He had trouble believing it. That was evident in both his words and his tone. He offered to help in whatever way he could. That was probably the feeling most people close to me felt – helplessness and disbelief.

My doctors rushed to diagnose the problem, even bringing me back just three days later for a bone marrow biopsy. This showed nothing, so they did it again a week later. After the second biopsy they sent me to Johns Hopkins because they didn’t have the technology to diagnose it themselves.

I went back to school in between hospital visits. Unlike in high school, where almost everybody knew of my cancer, I hadn’t told many people in college. The “no complaining” rule that basically governed my life prohibited me from doing so. I told my roommate and two or three others I was tight with, and only after they asked about my scar. I always wondered who they told, who else knew. That rule held me back in terms of gaining personal relationships, maturing, and assimilating into college. At times I’ve thought it generally held me back in life. But more importantly, the rule - not talking about cancer and never complaining about anything - was part of why I felt so unique, special, strong, and anything else that created the Superman cancer destroyer that I was. If I were to abolish the rule then I'd also be letting go of that force within me. It wasn’t even a choice, meaning I wasn’t aware life existed outside the rule. That was just the way I was. If you seriously thought there was something in you that made you better than every other human on the planet, would you be willing to let that go?

Since I still wasn’t at school by the time classes started, I knew all my hall mates must’ve asked my roommate and found out about my old cancer, my new problem, everything. I was so nervous the first time back that I had to stop once I got near campus to calm myself down. The thought of being looked at once again as the sick kid made me want to fucking puke.

Again (Part II of III)

We Don't Eat Fungus

After my bone marrow transplant I developed fungal pneumonia. Actually, I got it twice. But, that's not what this story is about. This story is about my dad and his fondness for mushrooms. He ate them on his chicken and with his kasha varnishkes. I, on the other hand, have never eaten mushrooms. They look disgusting. And I don't like the thought of eating fungus.

After my transplant my dad continued eating mushrooms. When he asked me if I wanted any I replied, "I don't eat fungus."

Gradually, my response evolved into, "I don't eat fungus – I had fungal pneumonia," finally culminating with, "I don't eat fungus – it causes fungal pneumonia."

That statement is totally untrue, but I said it so often that I brainwashed my dad into believing it until one day he stopped eating mushrooms. Do you know what his response was when I asked him why? "Mushrooms cause fungal pneumonia," he said.

I hadn't wanted to ruin his taste for mushrooms, and I probably should've told him that I'd brainwashed him and they were in fact safe to eat. But, it was just too funny and I played along. "That's right!" I encouraged with glee. "We don't eat fungus because it causes fungal pneumonia."

At some point I started to feel bad and eased up on the anti-fungus comments. I also told him the truth that they don't cause fungal pneumonia.

"Are you sure, because you got fungal pneumonia twice, probably from eating mushrooms?" he asked like the cooperative believer I molded.

"Yeah dad, it's not possible."

To this day he rarely eats mushrooms. He only eats them when they're very well cooked and from his favorite restaurant. He says that particular restaurant knows how to cook out the pneumonia-producers. That sounds ridiculous, but it's not atypical for my dad, who will eat split pea soup even though he hates peas. He claims that splitting the peas removes the toxins. When he first made that statement, I didn't even know how to respond. It was one of the silliest things I'd ever heard. Amazingly, I briefly had an allergist who told me that cooking and manipulating foods "de-naturizes" them, so I guess it's possible there is some truth to his pea-splitting theory.

Then again, that nice old man "tested" me and said I was allergic to over 25 different foods. According to my new allergist, nobody has ever been documented to have more than a few food allergies. He was in his upper 80s, a little kooky yet kind as can be, and may he rest in peace.