Posts tagged with "survivor"

Esophageal Cancer Awareness

April is Esophageal Cancer Awareness month. According to the American Cancer Society, the 5 year survival rate (all stages combined) is 19%. As the seventh most common cancer amongst men, it is estimated that over 16,000 deaths will occur from it in 2019. Men are 3-4 more times likely to develop esophageal cancer than women.

 Ron Coury’s story offers an uplifting and inspiring survival story in time for  Esophageal Cancer Awareness.

In November 2005, I went to Santa Barbara for my annual physical with Dr. James Murray, a practice I’d begun 20 years earlier. I was in great shape, weighing in at 185 pounds at 53 years of age. I regularly ran three to five miles around the lake adjacent to my house in Las Vegas, and enjoyed full workouts and lifting weights. Still, my dad had fought cancer for more than two decades, eventually losing his battle in 2002. Deep inside, I always felt cancer would find me.

As usual, my physical began with an hour-long meeting with Dr. Murray. During our conversation, I mentioned one small oddity.

“When I eat or drink, it seems like I have to clear my throat for the first hour or two. Does that mean anything?”

“Let’s find out.”

Among a battery of tests, he ordered a barium swallow. When I was done, I headed back to Dr. Murray’s office expecting to get another glowing report. However, this time there was a glitch.

The radiologist noted that during my swallow test, it appeared that the barium passed over a small bump at the base of my esophagus. Probably just a food fragment stuck to the wall, but the doctor ordered a procedure to play safe. Unfortunately, it revealed a tumor. And a malignant one at that.

It was hard to accept, because other than the need to clear my throat, I felt fine. Hell, I felt invincible! Still, I answered with a voice so calm it surprised me. “Okay, we’re going to war. What do we do now?”

Dr. Murray recommended a surgeon at USC Medical Center in Los Angeles, Dr. Tom Demeester, who specialized in esophageal cancer. He explained that even if I qualified for surgery, only eight percent of people diagnosed with esophageal cancer survive it.

When the doctor stepped out of his office, I looked out the window and said, “Well, Dad, I guess I’ll be seeing you soon.”

Luckily, the tumor was caught early in its development. And I was an excellent candidate for surgery, an ordeal that could take up to 12 hours.

The bad news? This type of tumor was highly invasive. The surgeon would have to remove a perimeter around the tumor, as well as nearby lymph nodes and upper stomach, take out the majority of my esophagus, then connect what was left between my throat and stomach.

He explained that life would change for me in major ways. I could never lie flat again, because without an esophagus, whatever was in my stomach could come up my windpipe and choke me. Also, I could only eat small meals from that point on.

I returned home and got my affairs in order, pre planning my funeral if the surgery didn’t go well. The last thing I wanted was to put my wife and kids through this. One of the hardest parts was calling my friends and telling them, “There’s a pretty good chance I won’t survive. So, I just want to say, I feel like I had a great run and I love you.”

Finally, the moment of truth arrived: December 5, 2005. My friend and workout partner, Mark Beckerle, had driven to the hospital the day before to see me. A spiritual type, Mark said he believed that people undergoing surgery see a bright white light. If they walk to it, they die on the table. “Buddy,” he said, “if you see a white light, run the other way!”

During my surgery, I did see just such a light. As if watching the doctors and nurses from above the operating table, I saw myself facing the light. Remembering Mark’s words, I turned and did, in fact, run. Was it real or a dream? Did it happen when I was bleeding out from my spleen, which got pierced during the operation? I’ll never know.

My next conscious thought came when I woke up in post-op. The first night was brutal and the pain was really rough, but I was alive!

Things turned bad quickly. I was in ICU for several days after developing the dreaded staph infection, MRSA. Next came blood clots in both of my legs. And a collapsed lung. Finally, they moved me into a regular hospital room where I remained for a month.

By the time I was cleared to return home in January, I still had a drain in my side, and a feeding tube remained in place.

Over the course of 2006, I gradually grew stronger and I was finally allowed to start eating small amounts of solid food. As I’d been warned, the pain was through the roof. But I was thankful to resume a reasonable facsimile of normal life.

Since the surgery, I undergo a PET scan each year, which is the best cancer-screening test available. Between scans, every ache or pain would make me think, “Uh-oh, is that a tumor?” Thankfully, year after year the reports have come back, “NO CANCER!”

After the fifth PET scan, Dr. Demeester declared me cancer-free. I’ll never forget him for the life-saving surgery he performed. Nor will I ever be able to adequately thank Dr. Murray for discovering the tumor so early.

I lost over 40 pounds during my month-long hospital stay, along with a great deal of muscle mass. A few years later, I’d gained back 15 pounds, but I was maxed out. These days, I can’t eat enough to exceed the calories I burn through ordinary activity.

Ultimately, tenacity and stamina carried me through my toughest battle. As I learned more about esophageal cancer, I found out that approximately 13,500 Americans contract it annually and 12,500 are dead within a year. I’m certain that my excellent physical condition enabled me to beat the odds, not to mention the best medical team on the planet, and the love and support of family and friends.

And remember, regular physicals and early detection really do save lives.  

About Ron Coury

Ron Coury is the author of Tenacity: A Vegas Businessman Survives Brooklyn, the Marines, Corruption and Cancer to Achieve the American Dream: A True Story.

A Message to A Friend

Dear Fellow Humans,

Sitting across from me is the remarkable human and brave survivor, Asia Argento, who has been through more than most could stand, and yet stand she does. She stood up to her monster rapist and now she has to stand up to yet another monster, suicide. The suicide of her beloved lover and ally, Anthony Bourdain. I write these truths because I have been asked to. I know so many around the world thought of Anthony Bourdain as a friend and when a friend dies, it hurts. Many of these people who lost their ‘friend’ are wanting to lash out and blame. You must not sink to that level. Suicide is a horrible choice, but it is that person’s choice.

When Anthony met Asia, it was instant chemistry. They laughed, they loved and he was her rock during the hardships of this last year. Anthony was open with his demons, he even wrote a book about them. In the beginning of their relationship, Anthony told a mutual friend, “He’s never met anyone who wanted to die more than him.” And through a lot of this last year, Asia did want the pain to stop. But here’s the thing, over their time together, thankfully, she did the work to get help, so she could stay alive and live another day for her and her children. Anthony’s depression didn’t let him, he put down his armor, and that was very much his choice. His decision, not hers. His depression won. Anthony and Asia had a free relationship, they loved without borders of traditional relationships, and they established the parameters of their relationship early on. Asia is a free bird, and so was Anthony. Was. Such a terrible word to write. I’ve heard from many that the past two years they were together were some of his happiest and that should give us all solace.

Anthony was 61, the same age my father was when he died. My father also suffered from intermittent deep depression, and like Anthony, was part of a “pull up your bootstraps and march on” generation. The a “strong man doesn’t ask for help” generation. I know before Anthony died he reached out for help, and yet he did not take the doctor’s advice. And that has led us here, to this tragedy, to this loss, to this world of hurt. Do NOT do the sexist thing and burn a woman on the pyre of misplaced blame. Anthony’s internal war was his war, but now she’s been left on the battlefield to take the bullets. It is in no way fair or acceptable to blame her or anyone else, not even Anthony. We are asking you to be better, to look deeper, to read and learn about mental illness, suicide and depression before you make it worse for survivors by judging that which we do not understand, that which can never fully be understood. Sometimes we are stuck in the unknowable, and that is where we are now, a massive wave of darkness that threatens to swallow everyone in its wake.

As I watch Asia do her job on set today, I see a pillar of strength who continues to work to put food on her children’s table. I see Elizabeth Taylor carrying on filming Cat on a Hot Tin Roof despite her love, her husband, dying in a plane crash. I see all of us who have carried on. Please join me in sending healing energy to Anthony on his journey, and to all who’ve been left behind to journey on without him. There is no one to blame but the stigma of loneliness, the stigma of asking for help, the stigma of mental illness, the stigma of being famous and hurting.

We must do more and be better. Anthony, our friend, would want it that way.

To the media and to the random commenter, Anthony would never have wanted Asia to be hurt, I’d like to think he would want us to have the collective conversation that needs to be had about depression. Blame is NOT a conversation, it is the shutting down of our collective growth. Which is where we are now. We have a choice as humans, shrink to our smaller, uglier selves, or be better and grow as only true Phoenixes can. I urge you to be that Phoenix.

With great sadness and even greater hope, I remain,

Rose McGowan

cc: Asia Argento

If you are considering suicide, reach out. We need you here. You matter. You exist. You count. There is help a phone call away, reach out.

Suicide Prevention Hotlines:

Argentina: +5402234930430

Australia: 131114

Austria: 017133374

Belgium: 106

Bosnia & Herzegovina: 080 05 03 05

Botswana: 3911270

Brazil: 212339191

Canada: 5147234000 (Montreal); 18662773553 (outside Montreal)

Croatia: 014833888

Denmark: +4570201201

Egypt: 7621602

Finland: 010 195 202

France: 0145394000

Germany: 08001810771

Holland: 09000767

Hong Kong: +852 2382 0000

Hungary: 116123

India: 8888817666

Ireland: +4408457909090

Israel: 1201 or 972-889-1333 from abroad

Italy: 800860022

Japan: +810352869090

Mexico: 5255102550

New Zealand: 045861048

Norway: +4781533300

Pakistan: 15 / 115 (Emergency)

Philippines: 028969191

Poland: 5270000

Russia: 0078202577577

Spain: 914590050

South Africa: 0514445691

Sweden: 46317112400

Switzerland: 143

United Kingdom: 08457909090

USA: 18002738255

For a USA Crisis Text Line, please text CONNECT to 741741 from anywhere in the USA, anytime, about any type of crisis.

9th Annual Wendy Walk

The 9th annual Wendy Walk Miami will take place at 10:00am on Sunday, April 8, 2018 at Palm Island Park in Miami. Over 1,000 people will gather this year in Miami, New York, and Los Angeles to raise awareness of sarcoma and funds to support research to eradicate this rare, aggressive form of cancer that impacted the life of Wendy Landes.

Wendy Walk was created in 2010 by the children of Wendy Landes in order to proactively support their mom in her battle with Liposarcoma. Wendy Walk Miami was founded by Wendy’s brother and sister-in-law, Michael and Stephanie Rosen, along with their children Alec, Kayla, and Sierra. The event will mark the five year anniversary of Wendy’s passing and officially kicks off the Wendy Walk 2018 season.

Who: Over 1,000 individuals from across the United States – including patients and survivors – committed to taking action in the fight against sarcoma. The walk is highly attended by University of Miami students, whose involvement by members of Sigma Delta Tau. Past celebrity involvement includes Patrick Dempsey, Angela Manuel Davis, Chelsea Kane, Peri Gilpin, and others.

What: Participants will walk together in a 5K around Palm and Hibiscus Islands. The event will include music, food, raffle prizes, and family fun.

When+Where: Sunday, April 8 at 10:00 am at Palm Island Park – 159 Palm Ave. Miami Beach, FL 33139

Why: Wendy Walk is one of the only organizations that exists specifically to fund sarcoma research. Proceeds go directly toward funding medical research on sarcoma. We are in a race against time, but are determined that, with the help and support of our community, we will find a cure for sarcoma.

Register: https://www.eventbrite.com/e/wendy-walk-miami-2018-tickets-42219635065

The Remarkable Life of David Hysong

Meet David Hysong — 30 year old adenoid cystic carcinoma patient and CEO of SHEPHERD Therapeutics. Here’s his remarkable story is below for consideration to pass along or speak with him about his journey:

Hysong finished his master’s degree in intellectual history in 2011 and found himself with a year’s lag time before he planned to enter the U.S. Navy. He was young, good looking, and smart. Most people in his position would probably have kicked back, gotten a job to pay the bills, and had some fun. However, David Hysong is not “most people.”

His story continues, and on a dare, he applied to Harvard Divinity School in 2012 for enrollment in the Fall. A series of educational and life adventures soon followed — good and bad, including his cancer diagnosis — and after graduation in May 2015, Hysong considered medical school. He took preparatory courses while working 80-hour weeks at two jobs to pay off medical and student debts. The schedule, in the wake of cancer treatment and graduate school, began to burn him out. Hysong then took a break for a few weeks. The clouds cleared and he was inspired to undertake what he calls “an impossible task”: a biotech start up that searched for cures to rare cancers like his.

Now, welcome SHEPHERD Therapeutics. His Genzyme and Harvard connections enabled him to assemble a world-class team of scientists. The firm’s goal is to find cures for the more than 250 rare cancers that make up 42 percent of cancer diagnoses in the United States. Hysong says that Shepherd is well on its way.

“We’ve raised close to $6.5M and we’re only just now finalizing our product portfolio,” he says. “The cool thing is, a lot of the times, therapeutics are approved when they represent a 30 percent survival rate or 40 percent survival rate. For the diseases we’re looking at, our preliminary data show about an 80 percent survival rate. We really think we’re going to be very successful and save a lot of lives.”

You can read David’s full story on Harvard Divinity School’s website, here: https://hds.harvard.edu/news/2017/12/07/Hysong-idealism-in-action#

Hysong was on the 2016 Forbes 30 Under 30 Healthcare list, and he was named as part of a class of 2017’s Future Biotech Giants. Not to mention he’s been covered by Southern Living, and he has spoken at the Forbes Under 30 Summit. SHEPHERD Therapeutics has offices in Boston and Nashville.

CONSTRUCTION UNDERWAY AT NATIONAL AIDS MEMORIAL

This week (August 18th) marks nearly thirty years since the Ryan White Comprehensive AIDS Resources Emergency (CARE)Act was signed into law, creating the most comprehensive federal program that provides services exclusively to people living with HIV.

Hemophilia advocates and survivors will gather on the eve of the anniversary at the National AIDS Memorial where construction is underway for a beautifully designed memorial feature being built to forever honor all the lives lost in the hemophilia community to AIDS.

The Hemophilia Memorial feature will consist of a new stone circle inscribed with the names of those in the hemophilia community who have died from AIDS.  It will also pay tribute to the courage and activism of those who worked tirelessly on behalf of the hemophilia community to ensure America’s blood supply is safe and this type of tragedy never happens again.

The hemophilia community was faced with evidence that treatment for their disorder was contaminated with HIV and hepatitis C. Approximately 90% of all people with severe hemophilia were infected with HIV. In response, , the hemophilia community launched a powerful and inspiring fight to right the system that failed them and to make blood and blood products safer for all.

Hemophilia advocates and survivors will gather to view construction progress, share their personal stories and encourage the hemophilia community to share names of loved ones lost.

There is still time for names to be inscribed in the circle before its formal dedication next month.

Information about how to have a name inscribed in the Hemophilia Memorial feature can be found at Aids Memorial Official Website.

2017-06-27-NAMG-Perspective-1024x663

WHEN:          Thursday, August 17, 2017

                         10:00 – 11:00 a.m.

WHERE:       The National AIDS Memorial (the “Grove”)

Eastern end of Golden Gate Park at the intersection of Bowling Green & Nancy Pelosi Drives

WHO:            Leaders, advocates and survivors in the Hemophiliac and HIV/AIDS Communities, including:

  • Patrick Dunlap, CEO, Hemophilia Foundation of Northern California
  • John Cunningham, Executive Director, National AIDS Memorial Grove
  • Karen Holine, mother of Jason Neal Fulton, who died due to the tainted blood supply

 

FELICIA TEMPLE: SINGER, SONGWRITER + SURVIVOR!

Originally from New Jersey, Felicia Temple was born into a musical family. Her dad, a touring musician, performed with renowned hip-hop group The Sugarhill Gang for as long as Felicia can remember. She grew up playing piano and learning sheet music, and was even called “Felicia Keys” around school [after one of her greatest influences – Alicia Keys]. As a singer/songwriter and pianist, Felicia honed her musical chops at the famed Village Underground in New York City, and went on to win audiences over at NYC’s famed SOB’s, DROM and Milk River where she headlined several sold-out showcases. Felicia has opened for acts including Angie Stone, Keke Wyatt, The O’Jays and SWV, and has performed the national anthem at numerous NBA and NCAA basketball games. Her music has also gone overseas with her touring in Moscow, Russia.  

 

While music has always been her greatest passion, Felicia was always fascinated with medicine and helping people – she obtained a degree in nursing while also pursuing a solo career. In June 2015, she was diagnosed with carcinoid cancer. While undergoing six rounds of chemotherapy and extensive abdominal surgery, Felicia wrote and recorded her EP, “The Balancing Act.” She states, “This EP came to be as a way to cope while I was dealing with cancer. I wrote music to help me get through an extremely dark time. I put my heart and soul in it, completely writing and producing it with all live instrumentation. It is, without a doubt, my strongest body of work to date and a reminder that something beautiful can come out of something so horrible.” Today, while she still goes in for regular check ups with her oncologist, there is no evidence that the disease exists in her body. 

 

In February 2017, Felicia joined the cast of NBC’s “The Voice,” competing on Blake Shelton’s team.  She was a stand out from day one, singing show-stopping ballads including: “All I Could Do Was Cry,” “Titanium,” “My Heart Will Go On” and “Defying Gravity.” Felicia’s story inspired millions of cancer survivors and musicians alike and set the stage for the release of her EP.


SOCIALS

https://www.facebook.com/feliciatemplemusic/

https://twitter.com/feliciatemple

https://www.instagram.com/feliciatemple

 

You can see Felicia competing on “The Voice” (April 2017) here:

http://www.nbc.com/the-voice/video/felicia-temple-my-heart-will-go-on/349483