Lung cancer survivor – it is time to remove the stigma

This is a post I recently wrote for MD Anderson and was published on their Cancer Wise website

_______________________________________

I lost my dad to lung cancer. Thirteen years later, I was diagnosed with the same illness that took his life. The difference was he smoked two packs of cigarettes day and I never smoked.

My lung cancer diagnosis

Almost four months ago I was riding on top of the world, literally. In the midst of a 5-hour mountain bike ride at Colorado’s Eldora Ski Resort, I crashed. I was a little banged up and went in to get checked out. After a few stiches and a chest x-ray, I was cleared to go home with a bag of ice and some ibuprofen.

Two hours later, in the midst of grilling a summer BBQ, I missed a call from the clinic. The doctor left a voicemail saying that after a secondary review the radiologist noticed a spot on the upper apex of my left lung. He said it was probably nothing, perhaps even some scare tissue, and that I should schedule a CT scan within a couple of weeks. I turned to my wife and said, “There is no way that is good news.”

I called my primary physician the next day. I had to plead to get a CT scan ordered and scheduled. The next day the physicians assistant informed me there was in fact an indeterminate mass, but nothing to worry about. She said that given I was young and healthy, did not smoke and maintained a regular fitness routine, it was most likely a false positive.

Two days later a biopsy, subsequent pneumothorax, and test results revealed a positive diagnosis for stage 1 lung cancer.

I was stunned. Lung cancer, of all things? I use my lungs regularly at high altitude and high intensity. They work fine.

Lung cancer stigma

By the second day I had already become familiar with the ubiquitous question, immediately following knowledge of my diagnosis: “Did you smoke?”

It is a logical question. We all know smoking causes lung cancer.

When my dad was diagnosed I was emotionally devastated, however if I am honest, my response mimicked the party line, “Well I am not surprised, after all, you smoked two+ packs a day for 57 years.” 

His battle lasted 14 months. It was a hard road from surgery through chemotherapy. I helped him through the entire process, and amidst the hardships, our relationship deepened and evolved.

The reality is that lung cancer is a mass murderer on a global scale. According to the American Cancer Society, 13 percent of lung cancers are unrelated to smoking, and another 50% are in former smokers who have not smoked for 25+ years.

Until recently, even with a family history, I knew relatively little about this pernicious disease. I believed, like millions of others, that lung cancer was for smokers.

Changing the stigma surrounding lung cancer

Does it really matter if you smoked, worked with toxins, lived in a radon house, or randomly inhaled the wrong particles? Is anyone really in a position to claim that someone really deserves lung cancer? No, of course not.

We need to change the way the world looks at lung cancer. We need to build programs around awareness and educate the public, invest more money in research and therapies and support the promotion of healthy lifestyles and prevention. It is time for lung cancer to become as relevant in our culture as breast cancer. It is time to end the stigma. It is time for change.

 

 

Cancer: The Harsh Story Of Lung Cancer vs Breast Cancer

It is time to change the perception of lung cancer in our popular culture. It is time to make lung cancer as culturally relevant as breast cancer.

CancerGeek

{I will preface this post by saying that anyone that is diagnosed with cancer has their world changed forever. The clock begins to tick, world closes in on you, and your world is changed in a way that will never be the same. I am being provocative. I am challenging.}

For those of you that I have had the privilege of meeting, and for those of you I have not met, you know and will come to find that cancer is the story of my life. It is what I have dedicated my professional career to try and make an impact. I am fortunate enough to be able to combine my passion, my talent, and my wisdom all into one single focus.

In October I made a commitment to wear a bow tie the same color of the cancer awareness for that specific month. October was easy, it was Breast…

View original post 1,269 more words

November 10, 2013 – I am…

I captured the following stream of consciousness in a brief 15 minute window of calm –

raw

aware

sensitive

afraid

feeling

joyful

relaxed

present

at ease

grateful

eager

clear

tired

accepting

receptive

creative

curious

resigned

lethargic

anxious

excited

tweaked

reflective

pensive

shocked

open

secure

happy

introspective

appreciative

sore

calm

thoughtful

optimistic

energized

9 Weeks of Healing

It has been a while since I/we have posted. We have transitioned into a new phase of the healing process, and the last couple of weeks we have been introverted home bodies. Our preference is to do much less, stay home, and be with each other and the kids.

Both Brooke and I have been driven “doers” most of our adult lives, now we are both feeling much more interested in just “being” and much less concerned about the “doing”. I am sure, like most of this process, this is but another step in the journey, and that this too will change. Right now, doing less and keeping life as simple as possible just feels right.

Now that I am getting back into circulation I have had a lot of people ask me how I am doing. I appreciate the support and caring nature of the question. Often it is in a public setting or in passing, and my stock response is that I am doing well (true) and that I am grateful to be so fortunate (also true). The reality of the situation is a bit more complex. I feel as if everyday I am aware of a barrage of different emotions washing over me, some a passing thought or twinge of awareness, and others more deeply felt, and a few just plain disturbing. Since there is rarely time to explore this range of emotions in a casual conversation I thought I would capture some of the range of emotions here.

At times I find myself struggling with patience. I am through 80% of the healing process, and the last 20% is going to take time and focus. I need to make sure I focus on that 20%, if I let it go and settle for a new status quo, I am going to lose ground that I need not cede. And it is quite clear that it is going to take work to build back where I am stronger than I was before going into the surgery.

The following is a summary of my general state of being on any given day:

Changed perspective about daily life, not as concerned about sweating the details.

Relaxed and at ease.

Energized and creative.

Reflective and  meditative.

Full of love for Brooke, family, and friends.

Conscious of being present and feeling.

Open to new possibilities.

God and the presence of spirit.

Aware of gratitude for so many blessings.

And…

Weary, especially in the mornings.

Uncertainty about the future.

Random shortness of breath, usually when I am not doing anything.

One in three who relapse…

Questioning everything.

Lethargic, and at it’s worse, apathetic.

A sense of loss…

Often I find myself in the midst of one of life’s mundane tasks, such as driving, and I hear a voice in my head asking if this is all for real? Did I really have lung cancer? Am I really missing 15% of my lung? And of course the answer rings in my head…YES! And I am reminded that one of the gifts of this experience is to stay present with the reality of my own mortality. To not slip back into the trance that this life is infinite and old age assured. To appreciate the beauty and gift of every moment and every day. And when I have that awareness if often seems as if my daughter’s smile is just a little brighter, the sky a tinge bluer, and it is that much easier to take a deep breath and be relaxed and present in the moment, grateful for the beauty of the life and love all around.

If you realize that all things change, there is nothing you will hold on to. If you are not afraid of dying, there is nothing you can not achieve.

– tao te ching

 

 

 

 

 

 

 

 

Tweets for #LCAM2013 Week 2 — Personal Stories

#LCSM

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.

PERSONAL STORIES OF LUNG CANCER

November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeashahttp://www.catchitintime.org/story/chris-draft#LCAM2013 #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett…

View original post 92 more words

Time to Change Perceptions about Lung Cancer!

It is way past time to address the lack of public awareness, incorrect perceptions, and stigmas around Lung Cancer. The CNN article linked below hits many of the high points. November is Lung Cancer awareness month, share the word, educate a friend, get involved!

As a surgeon at MD Anderson explained to me “in some respects we are victims of our own success. In the 70’s and beyond we used lung cancer as a tool to drive anti-smoking campaigns, successfully. So much so that the common perception to this day is that if you get lung cancer you brought it on yourself by smoking”. The reality, if you have lungs you can get lung cancer. And as the article mentions 60% of the new lung cancer patients in 2012 either never smoked or have not smoked in 25+ years!

I am one of those people. And even though I am relatively young, 47 at time of diagnosis, exercise regularly, and had a better than average diet…I got lung cancer. And this is not a cancer you want, ever! It is deadly. Even with the best prognosis, such as mine (Stage1B), the 5 year survival rates are still only 60-80% and there is a 33% chance of re-occurrence. 164,000 people will die of lung cancer this year, 1.4 million worldwide!

We need to catch it earlier, we need better screening, we need better awareness. And most importantly we need more funds invested in research and promising new screening and treatment techniques.

It is time to drag lung cancer out of the shadows! With awareness, focus, and investment we can improve the survival rates, and we can fight this deadly and silent killer.

http://www.cnn.com/2013/10/30/health/sequist-lung-cancer-stigma/index.html?hpt=hp_t3

 

A Samurai Warrior’s Creed

I have no parents – I make the heavens and earth my parents.

I have no home – I make awareness my home.

I have no life or death – I make the tides of  breathing my life or death.

I have no divine power – I make honesty my divine power.

I have no means – I make understanding my means.

I have no magic secrets – I make character my magic secret.

I have no body – I make endurance my body.

I have no eyes – I make flash of lightening my eyes.

I have no ears – I make sensibility my ears.

I have no limbs – I make promptness my limbs.

I have no strategy – I make “unshadowed by thought” my strategy.

I have no designs – I make “seizing opportunity by the forelock” my design.

I have no miracles – I make right action my miracles.

I have no principles – I make adaptability to all circumstances my principles.

I have no tactics – I make emptiness and fullness my tactics.

I have no talents – I make ready wit my talent.

I have no friends – I make my mind my friend.

I have no enemy – I make carelessness my enemy.

I have no armor – I make benevolence and righteousness my armor.

I have no castle – I make immoveable-mind my castle.

I have no sword – I make absence of self my sword.

– Anonymous Samurai, fourteenth century