Thursday, January 24, 2008

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.”

Leia Mais…

Thursday, January 17, 2008

Again (Part III of III)

Read these first:
Again (Part I of III)
Again (Part II of III)

Back at home in the beginning of March, I had as few responsibilities as during grade school summers. I didn’t have schoolwork or need to plan nighttime activities because my friends were mostly away at college. I didn’t have the pressure of hitting on girls or the associated rejection. I just needed to entertain myself and get blood counts and transfusions, and hope a bone marrow donor was found so I could continue surviving. I was actually at peace more than any other point in my life.

All the snow helped. Virginia saw 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 kept my hemoglobin and platelet levels sufficient, and I had no other side effects. I didn’t feel sick, tired or weak. My clinic appointments felt like friendly pop-ins instead of treatment. I 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.

Johns Hopkins, one of the best health systems in the world, diagnosed my disease. My parents, brother and I met with the doctor to discuss the disease and treatment options. When I asked for a prognosis, he stated there was a 30% universal chance of survival.

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

My brother and I later discussed what he said. Many elderly people develop that disease, so we 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 me ludicrous, idiotic or even psychotic if you’d like, but I didn't feel that statistics applied to me. 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 may not even be aware of their arrogance. 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 arrived just in time to see my two favorite sports shows, Around the Horn and Pardon the Interruption. We sat in a circular booth in 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. It was one of my life's most enjoyable meals. I was thrilled about my upcoming journey, knowing it would be challenging but also successful. I was so happy to have such a “high” chance of survival.

Was I nuts? Yes. But I’m as proud of that 19-year-old Ben as any other. I challenge myself and anyone else to manipulate such horrible news. I doubt I could duplicate that now.

I didn’t want my peaceful world to change, and when my mom told me a match was found, I was kind of sad. I was also scared.

Baltimore Orioles 2003 blizzard home openerSeveral days before departing for my transplant, I attended the Baltimore Orioles Opening Day game with my dad, brother and Uncle Joker. There was a blizzard during the baseball game—what a sight. Uncle Joker lent me his Gortex gloves, though he left early and I never returned them. “I stole Uncle Joker’s gloves,” I joke with my dad. That was the last time I saw my uncle before my transplant.

Benjamin Rubenstein and family at Baltimore Orioles 2003 Opening Day blizzard game
From left: JD, me (in my favorite blue hat), my dad, Uncle Joker
I saw many of my friends for the last time at a going away party at Bubble’s house. Several friends showed up, including most 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 closest ones. If they knew I was given a 70% chance of dying then maybe they’d have come running.

The following day more friends hung out to watch the NCAA 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, my peaceful world ended. I left my house for a four-month journey of a lifetime.

Continue reading "My Cancer Story": Fix Me (Part I of IV)

Leia Mais…

Saturday, January 12, 2008

Again (Part II of III)

Read this first: Again (Part I of III)

I felt certain I wouldn’t finish the semester, so I barely attended class. 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 as unproductive as you can imagine. My roommate and I usually left 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 playing Tiger Woods PGA Tour 2003 and Grand Theft Auto: Vice City. My most productive activity was burning a CD of the best Vice City songs and copying it for my hall mates. There was some kickass '80s 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.

At the end of February it occurred to me that I was wasting my parents’ money, so I dropped out and they received a refund on my tuition and other expenses. When everyone else was packing for spring break, I was packing to return home.

The way I handled my departure was embarrassing. My friend, PingPongGirl, said, “I would’ve made my hall mates throw a huge party for me.” 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.
We loaded my stuff into my dad’s van, and I went back to my room one more time. It was like I had never lived there. The room looked so empty, mostly because my roommate Dirty-D barely owned anything except a 13-inch TV that could’ve been confused for seven inches. Other than one decent academic semester and some new friends, there wasn’t much proof I was ever a Wahoo.

Keep reading: Again (Part III of III)

Leia Mais…

Monday, January 7, 2008

Again (Part I of III)

Continued from “My Cancer Story": Bombs Over September (Part II of II)
Read "My Cancer Story" from the beginning: The Golden Age (Part I of III)

I am king of these parts. All the doctors and nurses 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. 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 I’m here simply to follow 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.

*

The most common blood test 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. My nurse practitioner said it could’ve been a fluke and wanted to redo the test, but I was already mentally preparing myself for battle with my second severe illness. I was the self-proclaimed Greatest Cancer Patient Ever and I had to live up to my reputation.

I hadn't had to share much bad news during my first cancer because others did that for me. But this second time I told my family and several 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 couldn't believe it, and offered to help in whatever way he could, his voice shaking throughout. People close to me probably felt similar helplessness and disbelief.

My doctors rushed to diagnose me, even bringing me back just three days later for a bone marrow biopsy. This showed nothing, so they repeated it a week later. After the second inconclusive biopsy they referred me to Johns Hopkins.

I returned 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 governed my life prohibited me from sharing. I told my roommate and two or three others, and only after they asked about my scar. I always wondered who they told, who else knew.

That rule held me back from gaining personal relationships, maturing and assimilating into college. At times I’ve thought it 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 cancerslayer 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. If you 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 semester's start, 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 stopped before reaching campus to calm myself. The thought of being looked at once again as the sick kid made me want to puke.

Keep reading: Again (Part II of III)

Leia Mais…

Wednesday, January 2, 2008

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. Jewish food staple kasha varnishkesHe 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, Bowl of split pea soupwho 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.

Leia Mais…