Benjamin Rubenstein's Blog, page 10

HuffPost Live, I Am with You: Love Letters to Cancer Patients, and Cancervention

Now that March Madness is over I am allowed to be busy.

I will be on HuffPost Live today, Tuesday, April 14, at 3 p.m. ET. Don't judge when my makeup isn't up to the standard of Kim Kardashian. HuffPost Live is a live-streaming network that attempts to create the most social video experience possible.

My first work published in 1994, in the Anthology of Poetry by Young Americans. My poem, titled Washing Dishes, began "Washing dishes is not fun." Nothing has ever been more true.

Then I wrote two books about surviving two cancers when I was a teenager—Twice and Secrets of the Cancer-Slaying Super Man. And now this: my article To My Next 30 Cancer-Free Years published in the lovely book I Am with You: Love Letters to Cancer Patients.

I Am with You includes 46 short essays compiled by Nancy Novack and published last month. Nancy's goal is to make I Am with You available "to the patients who need us the most when they need our support. . . . to place the books in the patients' hands, the waiting rooms, the infusion and radiation centers, the gift and supply stores, survivor conferences and retreats, the libraries, medical schools."

I am honored to be part of this book. Read more about I Am with You on Amazon. You can also read To My Next 30 Cancer-Free Years on The Huffington Post.

I'm speaking at Young Adult Cancer Connection's Cancervention event on April 18 in Philadelphia, as a survivor panelist. You can read my interview with YACC. If you live around Philadelphia then join us on Saturday by registering for Cancervention.

Why Everyone on the Planet Should Read or Watch ‘Emperor of All Maladies’

I speak at George Mason University every semester. Professor K invites me to share my story with students in her men’s health and human sexuality classes. My memoir is now part of the curriculum for the men’s health class, and Professor K’s students were required to read it and submit questions for when I visited two weeks ago.

Are you still friends with your friends from the book, like Worm?

Absolutely! Though Worm moved to Leesburg which is an hour away and may as well be in a different state.

Is your left ball still big?

Yep! I have a hydrocele that doesn’t affect me. It’s just there.

How do you feel about cancer now?

Cancer has killed some of my friends and recurred in others. Some friends are living with it forever. For some, there is no treatment. These friends despise every aspect of cancer.

I am nearly 12 years cancer-free from my second cancer. Despite the odds against this, I am very healthy and don’t have debilitating late effects that require daily attention. I am free to spend my time however I want. I feel fortunate for this. Every morning I look at my tattoo in the mirror and say a prayer giving thanks. Cancer has given me a different perspective and I can’t imagine not having that.

Do you think your parents played a role in your survival?

Yes. So did the amazing doctors and nurses, who are so good at their jobs because they have to be, because their margin for error is sometimes zero. And so did the people who paved the way for the treatments I received.

I read the Pulitzer-Prize-winning book The Emperor of All Maladies: A Biography of Cancer three years ago. Emperor tracks the history of cancer in people since the Egyptians first recorded it thousands of years ago. Cancer has always developed in people.

Emperor explains the beginning of modern cancer treatment including when scientists discovered that radiation kills cancer cells but they didn’t understand that healthy tissue could only tolerate so much radiation. This led to total destruction. Emperor details the beginning of treatment for children with leukemia. Since all the kids would die anyway—by bleeding out through orifices or other horrific ways—doctors could try different treatments on them. Those doctors and patients and their families sacrificed lives to reach viable and successful treatment we see today, including five-year survival rates at about 90 percent for some forms of leukemia.

Emperor taught me about the chemotherapy drugs I received and how they were discovered, and about my cancers and how the cells evaded my immune system. Cancer cells are so remarkable that I wonder how anyone can be healthy and cancer-free 12 years later.

One of my favorite organizations is the Leukemia & Lymphoma Society. I am proud to participate with LLS, which I started doing last year through Man & Woman of the Year and will continue indefinitely. I even love its motto Someday is Today, a hopeful statement that together we can find a cure soon.

I’ll keep hoping with LLS because hopefulness is one of humanity’s greatest assets. I’ll also keep consuming pounds of vegetables, eating foods with a low glycemic index, and restricting my calories because these are supposedly among my best assets for preventing cancer. Even if part of me thinks cancer will never go away in people and the difference between having cancer and not having it is almost entirely random.

Last week I was invited to the sneak peak of Cancer: The Emperor of All Maladies, a film spanning three nights based on the book, on PBS beginning tonight at 9 p.m. ET. The sneak peak began with the narrator saying, “More will die from cancer over the next two years than died in combat in all the wars the United States has ever fought, combined.”

Cancer is the supreme king of disease as millions of people fight to escape its rule, and The Emperor of All Maladies tells this story. The book is among the best I’ve read and the film, presented by Ken Burns, promises to be eye-opening.


Do you worry about getting cancer again?

No. I live a healthy lifestyle and am forever striving to better myself. If something catastrophic were to happen then I’d know I did everything that I could. I live without regrets.

It is Madness Balancing the Adult and Child in Me

“March Madness is the only time when I feel like a kid again.” – my brother, JD
Hamburgers' friends, Hamburgers and me at 2014 March Madness 
in Raleigh, NC, to see University of Virginia crush MemphisI don’t normally watch much television but I make it up during the NCAA March Madness tournament—during my teens and twenties, I would watch nearly all 48 hours of its first weekend of games. And that doesn’t even include time to complete my bracket. The tournament doubled as one of my favorite pastimes and as a symbol of joy and hope when I went through cancer treatment at 17 years old.

As I aged and became more professional, productive and ambitious, my inner child faded. I completed my bracket using strictly analytics and economic principles and not any gut instincts. My fading inner child reached a frightening level the year I worked through the first Thursday and Friday of the tournament.

And then I read The Little Prince in which its little character reminded me that adults are odd and far too focused on numbers and goals; too focused on small things and not the big picture; too unwilling to adventure. It was time to take back the child in me.

During this pay period prior to today, I worked extra hours, including all day yesterday when I also took time to visit George Mason University to speak to students. That was my sacrifice for today, when I am off work and absolve myself from being an adult. I have even corrupted friends who will join me, and from 12:30 p.m. onward we will be March Madnessing at Crystal City Sports Pub.

Maybe I am both an irresponsible child and sucky adult. I accept that. Besides, if the University of Virginia wins the Final Four then my adult will take my child to the bar and dance the Horah. That is not creepy coming from me because my bone marrow is only 11 years old, though you probably shouldn’t say it in public.

Here’s to being a kid again. Wahoowa.

A Calorie-Restricting, Coffee-Addict's Love Affair With Irish Coffee

My friends dropped their Irish cream and whiskey shots into Guinness and gulped as quickly as they could before their drinks curdled. Most succeeded, but Downtown wasn’t so lucky. I laughed at him, disgusted at the thought of Downtown’s drink. My decade-long allergy to milk—one of my genetic acquisitions from my bone marrow donor—saved me from having to try Irish Car Bombs and offending my palate (and the Irish).

My immune system isn’t quite a teenager, and it outgrew my milk and peanut allergies like the child it is. Last year I self-experimented on my milk allergy and called victory after chugging 26 ounces without reacting. Months ago I duplicated that experiment with peanuts until I ate 66, which has the same number of calories as I’ve consumed this whole day as of 3 p.m. (Kiddies, don’t try this at home. Leave it to the professional idiots like me.)

I assumed I would make up for my lost milk years with so many enormous milkshakes, and bowls of banana pudding and ice cream that I would cause a new milk allergy. At the least I would finish each of my cheat meals with a milk product.

I love that I no longer have food restrictions and I indulge sometimes, but it turns out that I mostly drink milk just as a weight training supplement. And I can’t imagine ending my cheat meals on anything besides candy, for which just writing the word spikes my glucose. Looking through my photo gallery, I realize I photograph new candies at supermarkets and share them with my other candy-loving friends and brother. I nearly cried when I couldn't find these the evening of my last cheat meal:

I overconsume coffee, a calorie-free beverage, which was inevitable due to my addictive personality and obsession with shedding body fat. During the last snow day, CantSleepWontSleep and I couldn’t find a single open coffee shop in our Crystal City neighborhood. We searched everywhere within a 600-foot radius, for at least 12 minutes. We were tired, snowy and thirsty. When we found Bar Louis open, we were so relieved. But with the snow accumulating an inch an hour and our poor bartender itching to leave, we couldn’t simply order $2 coffees. “What is Irish coffee?” I asked our bartender.

The hot, freshly brewed coffee had that classic aroma and mouthfeel I was accustomed to. The brown sugar and Baileys added a sweet, creamy flavor. The Irish coffee soothed my soul, and if not for its $12 price tag and nearly 200 calories I would have drunk until my heart arrested from caffeine overload.

Now I really may make up for those lost milkless years with Irish coffees: in the mornings after exercising (not on workdays, obvi J); to complement my candy during cheat meals; and at home on the next snow day which is today, now at 3:45 p.m.

I will not catch up on all those lost Irish Car Bombs, however. If my friends never know I can now drink them then they won’t pressure me, so shh, don’t tell them. Especially not Downtown.

What It's Like to Live in a Hospital

Weeks ago I wrote about the sequence of events leading up to, and directly after, my dad's admittance to the hospital with pneumonia. Today I share what it was like to live with him for the bulk of 17 days in the hospital including 15 days in the emergency room and intermediate care unit. You can watch the video on YouTube or by clicking the play button below (if you are using a desktop Web browser).

The Fragility of Life and Lung: My Dad's Severe Pneumonia Story

As published on The Huffington Post

The first message arrived midday on a Sunday, picking up the latest in the long paper and electronic trail that chronicles our family's health.

Mom, Jan. 4, 12:49 p.m.: Yesterday morning Dad woke up very sick. He has a terrible cough.
Mom, Jan. 5, 2:52 p.m.: Dad has the flu.
Mom, Jan. 6, 3:40 p.m.: Doc said Dad has to get down fluid. He spit up water twice. If he can't, I have to take him to an urgent care clinic. Don't come home! This is highly contagious.
Dad, Jan. 7, 2:15 p.m.: I will be visiting the doctor again today. I had a very bad night last night and I am very weak. You must stay away from the house.

When I was 4 years old, my dad lived on red meat and his total cholesterol reached 300. His doctor began him on Lipitor -- a cholesterol-reducing medication -- and told him he must change his lifestyle through diet and exercise or else he'd have a heart attack.

When my dad played music with his band on Saturday nights, my mom would take my older brother, JD, and me to Pizza Hut. This was our only chance to eat pizza. My dad quit eating most everything besides poultry and broccoli. My dad hasn't eaten steak in 27 years.

Mom, Jan. 7, 4:40 p.m.: Dad lost 6 lbs from not eating. He keeps wanting to go to the hospital. Yesterday the doc told him he didn't need it.
Me, Jan. 7, 5:00 p.m.: Holy crap. I've never seen him want to be admitted to a hospital before.
Dad, Jan. 7, 6:11 p.m.: The doctor has added a strong antibiotic to calm the cough. I hope that it works. She was confident that it would work. I also had a chest X-ray to determine if I had pneumonia.
Dad, Jan. 8, 9:02 a.m.: The X-ray led to a pneumonia diagnosis.
JD, Jan. 8, 9:12 a.m.: Man this is scary. Anything we can do? Keep reading, here.

My Dad is Sylvester Stalloneing Pneumonia

My dad has been at Sentara Northern Virginia Medical Center since Friday, January 9, 2015, with the flu and pneumonia. Many of his wonderful family, coworkers and friends have been reaching out to us to wish him a complete and speedy recovery. I decided to collect these messages in one place so please post a comment here for my dad if you wish. You are not required to include a Sly reference in your comment, but it can't hurt. If you and my dad share mutual friends then please share this with them.

I will not update this blog like a CaringBridge. There is nothing wrong with CaringBridge but since I pretend that all my blog posts are all of high quality, I'll forgo quantity updates. I also do not know if my dad would appreciate public updates. We are thrilled that so many people care about my dad and want updates, but we can't keep up. For groups (for example, his coworkers and his Sylvester Stallone fan club members [joke, I think]): please designate one point of contact to obtain updates from me, my brother or my mom.

Thank you.

XOOXOXXOOXXOXOOXOXXOXOOXXOOXOXXO
-the Rubenstein family

Benjamin, Here’s What Your Year Looked Like!

Apparently my 2014 was too boring for Facebook to create my 2014 Year in Review. Or I didn’t really post anything, leaving Facebook nothing to work with. Regardless, I missed out on something horrific and I hate missing out. So I created my own Year in Review.

JanuaryYou got a little fatter—not enough to collect navel lint, but enough to feel heavy while rock climbing and for the button in your climbing pants to pop. You were too frugal to buy new pants so you continued climbing with unbuttoned ones. You were thankful your harness kept your pants on.

FebruaryYour friend died of cancer and you don’t need a Year in Review in order to remember her.

At Some Point in Early 2014You quit using dating websites and apps, all of them, because they wasted your time and the girls ignored you, probably because you popped your pants.

MarchYou made a cat video. Check that off your bucket list.

All Day Every Day*You spoke to audiences who may or may not have been forced to listen, and you signed books.

*which means, like, a bunch of times

MayYour older brother, JD, recently said he can’t remember a single thing he did in 2011 and barely remembers what he did in 2014. Just kidding, Lolo, of course he remembers getting engaged to you! We all can’t wait to not remember your wedding next year.

JuneYou were a candidate for The Leukemia & Lymphoma Society Man & Woman of the Year campaign and your fundraising team raised over $50,000. Hopefully LLS won’t use your donation on hookers and blow unless researchers think that hookers and blow can improve the quality of life for cancer survivors.

SummerYou spent two amazing weeks in Europe: one week as a solo traveler and the second with your Americans-temporarily-living-in-England adopted family, Mr. and Mrs. Stroopwafel. You stayed awake for essentially 48 consecutive hours, until 4 a.m. Greenwich Mean Time the day after arriving in London, in order to participate in your fantasy football draft. Le’Veon Bell skyrocketed you into the championship which you lost by four points because Russell Wilson scored 38. You can’t even force animosity towards Wilson because he fights childhood cancer.

You ate soooooo many stroopwafels in Amsterdam that you finally caved and bought new rock climbing pants. You later returned to online dating for one whole day—specifically the app JSwipe, which has the motto “Finding someone to take home for Matzo Ball soup is finally as fun as it should be!”. As it turns out, girls ignore you for reasons beyond your pants popping.

SeptemberYou predicted, as always, that your beloved Washington Redskins would win the Super Bowl.

SeptemberYou made a new Super Bowl prediction.

OctoberOver three years after you began the project, your second book Secrets of the Cancer-Slaying Super Man published. You hope and believe that Secrets is a great general leisure read; and can be a wonderful resource for families of sick children, schoolchildren learning about overcoming struggles, and oncology nurses and social workers. You will devote yourself in 2015 to reaching this goal.

End of 2014Your new roommate, CantSleepWontSleep, has prepared a meal in the apartment just twice in two months and has eaten out the rest. This led you to reconsider your frugality, and how wealth is often simply text on a Web page that waxes and wanes for many reasons beyond the amounts you spend and save. So you bought a Starbucks latte.

Happy New Year!Facebook did not create your 2014 Year in Review but Google+ did. Since Google+ could not differentiate who is in the photos stored on your computer, your Year in Review ends with a lovely girl from Chicago rock climbing at Brooklyn Boulders Chicago. You met her once. You did not take the photo. At least you were there (on a different climbing wall away from the photo). See you next year!

U.S. Needs to Claim Justin Bieber (Before Putin Does)

As published on The Huffington Post

Justin Bieber and I have much in common. Besides age, wealth, status, success and possibly gender, our only other differences are that he sings horrific music, has stupider tattoos, and doesn't have United States citizenship.

This is the partially true story proving why that must change.

Mr. Bieber, a Canadian citizen, likely entered the United States as a business visitor to perform for Usher. Usher loved Mr. Bieber, signed him, and they produced three number one albums by the time Mr. Bieber turned 18 years old. Mr. Bieber now has 12 times as many Twitter followers as the pope, or what he calls "Beliebers," and an estimated net worth of $200 million.

Mr. Bieber obtained an O-1 nonimmigrant visa in order to temporarily remain in the United States. To qualify for an O-1 visa he just had to demonstrate distinction: a degree of skill and recognition substantially above that ordinarily encountered. Lucky for him, Randy Jackson was his adjudicator.

I pitied Mr. Bieber as he matured into a young man. We shared a desire for fame and girls, but his art caught fire and mine didn't, and he became surrounded by unhealthy means and influence. Mr. Bieber succumbed just as I succumb to the office candy bowl because it is there and free and crushes my otherwise superhuman willpower. Keep reading, here.

Everyone Needs a Doppelgänger

In 2013 it was written, and in 2014 it was sealed.

The German term “doppelgänger,” dating back to 1851, was used in fiction and folklore and meant a spirit that looks like a living person. Often, the look-alike signified bad luck, illness or even death. Doppelgänger is now in the top 20% of terms searched on Merriam-Webster.com and we view it positively, simply meaning someone who looks like someone else but who is not related to that person.

The first time I recall hearing "doppelgänger" was last fall, and I immediately began searching for mine. Though everyone needs and ultimately has one, the catch is that you cannot actively find your own doppelgänger because, according to ruBENstein folklore, that signifies horrific luck, the plague, and eternal suffering. Your doppelgänger must come to you spontaneously or be presented to you by someone else.

My coworker presented me my doppelgänger just a few days after I learned what the term meant last year, and last week JT validated my doppelgänger when he texted me out of the blue, “Has anyone ever told you that you look like Brian Hoyer?”
  Michigan State-product Brian Hoyer started the Cleveland Browns game on September 18, 2013, when quarterback Brandon Weeden sat out due to injury. He threw 54 passes and completed 30 of them, with three touchdowns and three interceptions, in a 31-27 victory over the Vikings. The following week fake Ben Rubenstein went 25-38 with two touchdowns in the Browns 11-point victory over the Bengals.

I was playing some good g-damn football.

Later that week while watching me play on Thursday Night Football, I took a bathroom break and felt a sting in my knee. I suspected the worst: fake Ben Rubenstein tore his ACL. His season ended right there. I would get the chance to play again in 2014.

The Browns drafted Heisman Trophy-winner Johnny Manziel, also known as Johnny Football. Manziel and I competed to be named the starting quarterback during preseason. Is it selfish to root for myself when doing so hurts another upstanding citizen? I beat out Johnny Football for the Browns’ starting quarterback job earlier this year. I beat Manziel, I beat Manziel!!! But I have played poorly and I am the backup in today’s game.

Ah well, you can always have a backup doppelgänger when your previous one starts to suck.

My Brazilian friend showed me my new starting doppelgänger.

Most of the results after I search for Brazilian Paulo Gustavo are in Portuguese, but I did see the word “humorista” several times. So if I can’t play football anymore then I guess I’ll be a comic, and apparently really popular on Instagram.

Johnny Football rules. Go Browns.