Monday, November 30, 2015

Day 30: Jamie Shull, advocate. "Anyone with lungs can get lung cancer."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 30: Jamie Shull, advocate
"Anyone with lungs can get lung cancer."

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole.
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Sunday, November 29, 2015

Day 29: Genevieve de Renne, caregiver. "Never underestimate the power of love, and the power of your own thoughts."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 29: Genevieve de Renne, caregiver

"Never underestimate the power of love, and the power of your own thoughts."

How long have you been a caregiver?
"If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years."

What was it like in the beginning?
"I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear."
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Saturday, November 28, 2015

Day 28: Dr. Alice Shaw. "Alice is my super-hero."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 28: Dr. Alice Shaw
"Alice is my super-hero."

(From Linnea Olson's blog, Outliving Lung Cancer)

Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale’s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he’d broken up with me via email. In my head I was already thinking I’d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch–as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even heard of an ALK mutation.
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Friday, November 27, 2015

Day 27: Dave Bjork, survivor. "It’s all about relationships."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 27: Dave Bjork, survivor
"It’s all about relationships."
Twitter: @bjork5

Who is Dave?
I am a lung cancer survivor, and I am a passionate advocate for cancer research and education. Professionally I’m the Vice President of Development for the National Foundation for Cancer Research in Bethesda, Maryland. In my role I advocate for funding important research projects led by scientists at places like Massachusetts General Hospital (MGH), MD Anderson, Dana Farber and so many others. Among the researchers that I am very vocal about, and that are supported by my organization in the area of lung cancer, are Drs. Daniel Haber and Alice Shaw at MGH, and Dr. Jin Jen at Mayo Clinic.

What is your connection to lung cancer?
I was diagnosed with lung cancer. I was 34 years old, married with 3 young boys age 5, 3 and 1, and I had never smoked. I received amazing treatment at Mass. General Hospital by thoracic surgeon Dr. Doug Mathisen among others. I had a lobectomy to remove my lower left lobe, and was fortunate that there was no spread of disease. I have been forever grateful and am committed to advocating for more research for lung cancer.
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Thursday, November 26, 2015

Day 26: Christian Nataline, survivor. "You understand that we’re all interconnected to each other and with the planet."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 26: Christian Nataline, survivor.
"You understand that we’re all interconnected to each other and with the planet."

(From Linnea Olson's blog "Outliving Lung Cancer.")

I met Christian Nataline five years ago—we were guests of our mutual oncologist Dr. Shaw at a function where she was being honored. I was struck by how young Chris looked and learned that he’d been diagnosed just after turning thirty-one. He’d been married less than a year (to his amazing wife Karen) and was the father of an eight month old. Like me, he was also a mutant—ALK+ and stage IV.

...continue reading...


Wednesday, November 25, 2015

Day 25: Roz York Brodsky, survivor. "There is much more hope than there used to be"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 25: Roz York Brodsky, survivor.
"There is much more hope than there used to be"

Eleven years ago Roz York Brodsky was diagnosed with non-small cell, giant cell, locally advanced lung cancer. This is a very rare form of lung cancer. At the time there wasn’t the social media support and people like Peter Jennings and Dana Reeves were dying from lung cancer. She was terrified. The upper right lobe of her lung was removed. She was only 46 at the time. Afterwards, she began regular check ups.

A year ago, she was diagnosed with stage 1 non-small cell adenocarcinoma lung cancer. Luckily, it was caught early due to her on-going regular check-ups. At this point they removed the middle right lobe of her right lung. She currently has stage 0 but with pre cancer cells in her left lung, so is facing another possible surgery.

Roz has been able to resume a normal life to an extent. ...continue reading...

Tuesday, November 24, 2015

Day 24: Jeff McManus, caregiver and advocate. “I used to be a loner before meeting Cara.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 24: Jeff McManus, caregiver and advocate.
“I used to be a loner before meeting Cara.”
Twitter: @Jeff3263827

11226049_10206796271201431_6101692854972382299_nJeff was a caregiver for his wife, Cara, who passed away in April 2015. She only survived 20 months after being given her stage IV lung cancer diagnosis. They met in 2006 and quickly became good friends. They would have been married for 4 years in June of that year. Jeff confessed to me, “I used to be a loner before meeting Cara. She brought me out of my shell and we started hanging out with friends.”

Jeff has a PhD in biology and works full time in a research lab. He enjoys his work and his coworkers. In his free time he likes playing trivia with his friends, going to Indie rock concerts, and cooking. He and Cara both loved cooking and often made meals together. He also likes to stay active by riding his bike, another fun activity him and Cara did together, lifting weights, and playing basketball.
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