Wednesday, September 14, 2011

Ten Years Cancer-Free

I enter the large, dark room, approach the table in the middle, and lie face-down. I bury my head in a pillow and close my eyes. I hear the nurse exit and close the door behind her. The door locks, and the “Radiation” sign illuminates.

I hear the machine turn on and move, get in position, and hover over me. I fidget to get comfortable one last time, and then I do not move. I focus on my breathing and I focus on my muscles not twitching. The energy about to exit the machine over the next ten minutes—the amount in about 180 CT scans—will burn my skin, which is already tomato-red from the previous 24 sessions I've had. It will blaze through my intestines, muscles, nerves, and now-dead bone. Most importantly it will annihilate the cancer cells that I believe have already been dead for 11 months. Dead from the first of 14 cycles of chemo. Dead because I felt them burning alive, a pain I will never forget and a pain I wish I hadn’t taken Tylenol to mask.

Minutes later, the machine stops making noise. I hear the nurse open the massive steel door and say that radiation is over. I follow her into the lobby. She says she will miss me, hugs me, and gives me a Hershey’s bar. I am confident that I will never receive another milliliter of chemotherapy. I will never again lie motionless in front of a machine that shoots waves of destructive energy through me. I will never again be termed a “cancer patient”; be seen as the Sick Kid; have another nurse say she will miss me.

It is Friday, September 14, 2001, at 3:40 p.m.. I am a bone cancer survivor, age 17.


Left untreated, the death rate for people diagnosed with cancer is surely between 90-100%. With treatment, the five-year death rate for people diagnosed with cancer is over 30%. Does any other disease approach this level of killing?

As a white male born in 1983, my life expectancy was 71.6 years old. I won’t try to calculate my new life expectancy after Ewing’s sarcoma age 16, 60-70% chance of five-year survival. Or myelodysplasia age 19, 30-50% chance of five-year survival.

But then again, 50 Cent wasn’t supposed to survive being shot nine times.

Today, the very minute this story publishes online, I have been cancer-free from Ewing’s sarcoma for ten years. What does that mean? Perhaps every single cancer cell was killed by the end of my second day of chemo, on September 29, 2000. And perhaps all the cells were surgically resected on January 10, 2001. So that makes September 14 the latest-possible survival date, the most true point in time if there ever was one. The truth I know—not the one based on the above statistics or actuary table or how many late effects I’m supposed to be living with—is that I am doing great.

The truth is that I also miss the suffering because what happened following the suffering is what most think of as “normal,” or the absence of pain and discomfort. But “normal” following the suffering was more like euphoria. But just as a person’s level of happiness after winning the lottery eventually reverts back to “normal,” my euphoria dissipated. For much of my survivorship I attempted to regain that euphoria, often resulting in me being stuck in my teenage past. I liken this to a professional athlete refusing to let go and retire.

I understand now that I can’t regain that euphoria like it’s a lost treasure. It was a benefit of cancer, and it’s gone, just like my tumor. To take things for granted and move on with life is to be human.

This past weekend my dad and I visited my grandparents’ graves in Long Island. They passed away before I had a memory. Before our short service, my dad updated them with the family’s health, beginning with me. It isn’t that he loves me more than my brother and mom. It’s just natural to start with the health of the two-time pediatric cancer survivor. This is how it will always be. I get it.

But as I strive to reach 6% body fat, function pain-free and almost never get sick, people I know live with AIDS, or chronic, relentless pain. Or live with the scars of sexual abuse, or the fear of developing bipolar disorder. Or live with a tumor that will forever require drugs to tame, or have died from cancer, or live with a colostomy bag.

I’m not suggesting I’m immune to another cancer. Clearly my confidence ten years ago didn’t prevent a second. The truth is nobody knows if and when they will develop cancer. I can play the odds and live my life in fear. Or I can be thankful that I’m doing so well, and that I’ve reached a decade of cancer freedom. Five years cancer-free is the milestone when the risk of cancer recurrence is low enough to use the word "cured." Ten years cancer-free is the milestone when I can now just celebrate the accomplishment; celebrate that I survived a murderous disease; celebrate life.


Anonymous said...

YEHAAHAAHAEAH! GREAT post. Congrats on this enormous milestone, Benjy.


La Mole said...

Congrats Benji - What a special day. Hope you enjoy by doing something destructive, like eating really fattening Mexican with salty/sweet margs. Regardless, enjoy!

Scotty said...

Congrats Ben - We should meet and have some drinks to celebrate. Perhaps with the other "models". Keep Slaying it! - Scotty

Benjamin Rubenstein said...

Thanks, all. Special day indeed, one worthy of several thousand calories of Mexican food and beverage (good peg, La Mole) on my generous brother's dime. Scotty, we need to prepare to put on a real show for next year, so let's do that.

Raine said...


Dad said...

Congratulations on your 10 year anniversary following Ewings. Great blog entry.
Love, Dad

DebBR said...

This makes me soooo happy!!!!!! How about a family dinner also. You pick. Love you. Mom

Benjamin Rubenstein said...

Well, you know my rule about never turning down free food, so offer accepted.

Thanks everyone.