Saturday, April 23, 2011

BEING CANCER NETWORK: Resources for Bloggers

Tuesday, November 16, 2010

My friend Benjamin Rubenstein has finished his memoir about his experiences with cancer. It's called: "TWICE How I Became A Cancer-Slaying Super Man Before I Turned 21." We have shared many stories over the years and I am extremely proud of him. I would always turn to his blog when I needed to laugh at cancer. He is the definition of the word "perseverance," both in terms of his attitude towards survival and his determination to get his story published!

So... you should buy a copy of his book here:

--Over six years ago I began writing a book about my experiences with cancer at sixteen years old, again at nineteen, and growing into adulthood in the aftermath. After 4,000-odd hours and countless drafts, I am pleased to report that my book has been published and is available to read. The title is TWICE: How I Became a Cancer-Slaying Super Man Before I Turned 21, and it can be purchased through my publisher’s website or directly from me at I want to thank you for your support, and am honored to be able to share this with you.

Hear what others are saying about TWICE:

Jonathan Kellerman, New York Times 33-time bestselling author
“Benjamin Rubenstein is a gifted story-teller and the story he tells in TWICE is riveting. This is a stunning page-turner of a memoir, devoid of the mawkishness that often mars the genre. TWICE is brutally honest, sometimes rib-achingly funny and all the more profound for the author’s brave exploration of himself.”

Library Journal by Jodith Janes, Cleveland Clinic Library
“It is estimated that only 150 diagnosis of Ewing's sarcoma are made annually and only two-thirds of these patients survive more than five years. Rubenstein was diagnosed with Ewings's at 16, but was determined not to be a "Sick Kid" for "I would never be able to discard the Sick Kid label." Writing with wit and humor, he chronicles his fight with this terrifying disease. Rubenstein's belief in the superhuman ability to fight his cancer gave him the courage to face chemotherapy and its devastating side effects, bone biopsies, a second cancer (leukemia), a stem-cell transplant, more chemotherapy, infections, hemorrhagic cystitis, weight loss, and osteoporosis. In spite of invasive diagnostic tests, treatment set-backs, and demanding physical therapy, he never fears he will lose his battle. The strong support of his family is documented with love and occasional frustration at what he sees as over-protectiveness. A University of Virginia economics degree is testament to his survival and entry into young adulthood.

Verdict: An inspiring and fascinating personal account of a long and often painful journey that would appeal to other patients and their families.”

This is an awesome new online forum for young people!

Check out the feature on my blog by clicking the picture!

Monday, June 22, 2009

I was recently contacted by the National Awareness Coordinator for the Mesothelioma Cancer Center. asked me to post this important information regarding asbestos exposure.


Mesothelioma is a cancer that develops in the mesothelial cells that line many organs and body cavities. With this type of cancer, cells of the mesothelium become abnormal and divide uncontrollably and without order. They can attack and harm nearby tissues and organs. Most cases of mesothelioma begin in the thoracic cavity (pleura) or the abdominal cavity (peritoneum).

One of the only known causes of mesothelioma is exposure to a mineral known as asbestos. Asbestos was in widespread use throughout most of the 20th century in a number of military and industrial applications. The primary uses included insulation, brake lining, flooring and piping. Asbestos was valued so highly because of its durable and fire-resistant qualities.

A large majority of houses built before 1980 also contain asbestos insulation. The substance is harmless if left undisturbed, but once it is damaged or deteriorated it releases microscopic asbestos fibers into the air which can then be easily inhaled or ingested. Most mesothelioma cases caused by asbestos can be traced back to military or occupational exposure. The most common occupations affected by asbestos include firefighters, electricians and auto mechanics. Secondhand exposure is also a risk for families of those who worked with asbestos. The fibers can attach themselves to clothing and be brought home to the worker’s family.

Unfortunately, effective treatment of mesothelioma is not very common. The reason for this is that malignant mesothelioma has an unusually long latency period. It normally takes anywhere from 25 to 50 years for noticeable symptoms to show up. Because of this, mesothelioma is not typically diagnosed until its later stages when treatment options become more limited.

As stated before, mesothelioma is most treatable when caught early so if you are aware that you have been exposed to asbestos at any point in your life, it is important that you let your doctor know so that you can be monitored for any asbestos related illnesses.

Friday, June 12, 2009

Dear Family and Friends,

I hope that this update finds you healthy and happy.

Shortly after my move to New Mexico, I was awarded a grant from The SAMFund, a scholarship fund for young cancer survivors. This grant paid my rent for six months, while I got on my feet in a new city. To date, The SAMFund has awarded a total of $400,000 to close to 200 individuals across the country.

Here, you can find the link to the list of 2008 recipients: The SAMFund

I know that during these financial times, we are all thinking about money... but, I want to thank all of you that contributed to my fundraising efforts for breast cancer last year and/or my roommate Emily's efforts in support of the Leukemia and Lymphoma Society. While we often wonder where our money is going when we make a donation to cancer "research," I can attest to you that it is your donations that make scholarships and grants for cancer survivors possible. As a person who knows a lot about debt (ie: student loans), I have come to learn that medical debt is very real for the majority of us.

Thanks again for all of your contributions.


Personal update: I have successfully completed my first year of my dual-master's degree track at the University of New Mexico in Latin American Studies and Community & Regional Planning (a 3-year plan). I am looking forward to my last follow up scan in July 2009. Afterwards, I will continue to have CT scans once every three years. After two trips home to be with family and friends, I plan to return to Buenos Aires for a conference relating to my thesis research on self-governance and alternative economies.

Saturday, January 31, 2009

Holiday Time is Scan Time

On January 5th at 11:15 AM I had my second follow up scan.  Me, Todd, and Mom made the trip into Boston to re-visit our favorite cancer center, Dana-Farber.  It was a grey day and I felt extremely ill from a late night of partying until 5 AM the night before.  

We arrived and momentarily got lost on the PET scan floor.  We needed to be in CT.  Finally in the right place, I sit down with my two bottles of radioactive Crystal Light and Todd and I told Mom some funny stories about our trip to Canada.  Drinking the radioactive juice wasn't as difficult as times past, considering how dehydrated I was.  The major pitfall, aside from the metallic taste, is that they keep it too cold.

I went in for my scan and I think it look less than 5 minutes.  I'm so smart now.  I never wear a bra and therefore, never have to undress.  Just lay down, point to the right vein, wince, and close your eyes while your inside the spinning machine.  The technician and I had some laughs and talked a little bit about New Mexico.

Leaving the scan room, of course, Todd and Mom are nowhere to be found.  Those sneaks.  They are always moseying off to have lunch or get coffee without me!  Because the sign in the waiting room specifically notes: "Please NO food or drink.  Patients are fasting for exams." Fortunately for them, I found them rather quickly in the cafeteria.  We decided to stay there for lunch since we had an appointment with Dr. Fisher at 2:30 PM and the two escapees had snagged a sweet booth.  We had pizza for lunch. 

Dr. Fisher's waiting room is pretty much the worst part of the entire experience.  You never know when they will call you.  And then they call you and they just want to put your name on the list for blood work.  Then you sit down and wait some more.  Then they call you again.  This time it's just to take your vital signs.  Then they finally call you for blood work and you're exhausted and pissed off that you forgot to tell the CT technician to leave the IV in so that they wouldn't have to stick you again.  I only had one vein that day, considering the drinking I had done the night before, so I told her to stick it.  And it was good.  Phew.

Finally!  ...we're brought to a room to wait for the Doc himself.  He doesn't take too long and Todd and I hype him on Mont Tremblant, Quebec.  It's fun.  Then he tells me the scan is clear and that my neck looks like the neck of newborn baby.  And we leave.  And that's that.

I have another scan scheduled for June.  After that I'll be able to go once a year instead of every six months.  That will be nice in a way... though... scarier too.  A year is a whole lot longer to wait while something deadly could be growing inside you.

Friday, December 5, 2008