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Cancer: Your Stories

Cancer: Your Stories

Andrew Samtoy
on Feb 18, 2015

In late March, WVIZ will be airing a Ken Burns series called "Cancer: Emperor of All Maladies."  As part of our outreach for this series, we are inviting cancer survivors, as well as their friends and family members, to participate in an ongoing dialogue about cancer treatment.  We will be posting various questions throughout the next month; check back regularly for new questions and dialogue.  

Conversation Starter

Did you feel that you had a good understanding of what your treatment would be like before it began?  Why?  

Participants (3)

What do you think?

Anonymous
on 2017-07-22T14:53:07+00:00
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Arabella Proffer
on Mar 11, 2015
"I was treated at Cleveland Clinic for a very rare and aggressive form of liposarcoma in summer of..."
Angelo Merendino
on Mar 05, 2015
"My late wife Jennifer was diagnosed with breast cancer 5 months after our wedding. Even though we..."
Mike Shafarenko
on Feb 19, 2015
"In October 2009, my dad was having some pain in his stomach/abdomen. A month later, he visited..."

Andrew Samtoy

Andrew Samtoy - 2017-07-22T14:53:07+00:00 - "In late March, WVIZ will be airing a Ken Burns series called "Cancer: Emperor of All Maladies."..."

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Arabella Proffer
on Mar 11, 2015 - 9:20 pm

I was treated at Cleveland Clinic for a very rare and aggressive form of liposarcoma in summer of 2010. I had a clear understanding of everything especially after I was told chemo would not work on my type of cancer (which frankly I think it is useless on most), and I'd be going through insane amounts of radiation and a big surgery. I experienced none of the traditional side effects from radiation they prepped me for, although it has done other damage I was not prepared for which only reared its head this year (it's been 5 years since diagnosis and my side effect is 1% of cases). My surgery was not very well explained, however, until 3 days prior. I thought I would only be having the tumor removed, not my entire right thigh. I was told by a resident that I'd be running again by the spring. It's been 5 years and I can't run or do stairs, or kneel or anything related to a yoga pose. I use a cane on and off. Since then, my onoclogist and I have worked together quite a bit anytime he sees an MRI or x-ray he doesn't like, and I've had other complications all as a fallout from the initial cancer. He is very staunch and almost robotic even after all these years with me, but I get a glimpse of him being human in the operating room when he is about to cut into me (he is really quite good at it!) or when I go above his head or to a colleague in his department (a no-no at CCF) and he takes it personally. Even today he has the funniest and stiffest ways of complimenting me on anything; I've learned that if he thinks of me as an object he does his job better, whereas if I'm thought of as a person he might make a mistake. He has learned to show me pictures instead of explaining away in medical terms -- even though I've learned them all and now do community outreach for the Dittrick Museum. I wrote about the importance of understanding medical imaging both as an artist and a patient here: https://arabellaproffer.wordpress.com/2014/07/17/art-in-medical-arts-show-it-dont-tell-it/

I've also had a botched surgery last year that sent me into kidney failure (something CCF will never admit to) and then a very recent surgery to correct the damage the radiation did back during my treatment. My chances of it coming back were already high and get higher every year, so I'm always shuffeling in and out of that place. I've had both very good and very bad experiences; they are just people like anyone else.

My father died of colon cancer and wrote a lengthy Washington Post article about his experiences at University of Michigan hospital vs. NIH where he subjected himself as a guinea pig before he died. In 1983, doctors and oncologists wouldn't even say the word cancer, but rather, "the disease" as if the word was taboo and would upset everyone too much. They also thought they knew everything and their word was the last. Today I've had the benefit of genetic testing among other advances, and at least no doctor or specialist will pretend they know everything. Sure, I've had arguements with them, but at least when I know something is wrong, or I want a copy of my reports, they don't let their ego get in my way anymore.

 
Angelo Merendino
on Mar 05, 2015 - 11:26 am

My late wife Jennifer was diagnosed with breast cancer 5 months after our wedding. Even though we both had family members who faced cancer we had no idea what was coming our way. We received treatment at Memorial Sloan Kettering Cancer Center. Thankfullly everyone from was kind, from our oncologist to the gentleman who greeted us at the door. We asked a lot of questions and always felt like our team was working non-stop to help us.

That said, every day was a challenge and my head still spins when I think about this.

Here is a link to our story - My Wife's Fight With Breast Cancer

 
Mike Shafarenko
on Feb 19, 2015 - 12:56 pm

In October 2009, my dad was having some pain in his stomach/abdomen. A month later, he visited his gastroenterologist thinking that it was just some major heartburn. A CAT scan revealed spots all over my dad's stomach and other internal organs.

The doctor sent my dad to an oncologist. The day the results from further tests were available, I flew to St. Louis to be with my  family (mom, brother and dad) to hear the news. It was Stage IV stomach cancer - translated: inevitable death, with no certainty of exact timing.

The oncologist - the winner of numerous awards and accolodaes for his work in the field - was as objective and impartial as one could be about the situation. We asked about the options for treatment, mostly to give ourselves some sense of hope that maybe a miracle might happen. 

The only suggestion he had was that my dad undergo very aggresive chemotherapy, which at best would delay the spread of the cancer through my dad's body. The conclusion to the proceess in the long-term, of course, was still inevitable. 

We went home with great sadness that day. We started researching things on the internet, hoping to find some alternative approach somewhere in the universe that might somehow change the prognosis. There were many such approaches in places around the world that claimed results against all odds.

My dad, whose decision it was to make about his own life, chose the path recommended by the oncologist. After all, he thought, any course of action would yield the same outcome in the end. 

I flew back to Cleveland to continue working, calling everyday to hear how things were going. A month later, I flew to St. Louis to spend a few days with my dad and family. By that point, he had lost 100 pounds and was mostly bedridden due to exhaustion and nausea that came as side-effects of the chemotherapy. 

About a month later, my dad passed away. He lived the last months of his life fighting deseparately to stay alive and be with his family, having been professionally given only one option for doing so with the other option of doing nothing. He chose to fight and, unfortunately, he and the rest of my family lost.