Category Archives: Smoker/Nonsmoker

Just not a just world

There are two kinds of people. Those that believe life is fair (everything happens for a reason) and those who don’t (shit happens).

These differing viewpoints may seem like no big deal until you start thinking about the moral implications of belief in a just world. I suppose if everything is working out for you it’s a pretty convenient philosophy. However, if life has thrown you some major curves (such as a diagnosis of terminal cancer) than you probably don’t believe we all get what we deserve.

My own diagnosis of lung cancer left me completely gobsmacked. How on earth did a young, seemingly healthy woman who had never ever touched a cigarette (me) get lung cancer. And yes, I was struck by the unjustness of it all. I mean, why me?

Well, first of all, lung cancer in non and never smokers is nowhere near as uncommon as most people believe. Approximately 60-65% of newly diagnosed cases occur in former or never smokers.

Secondly, life is not fair.

However, most of us grew up believing in a just world, a well ordered place where sensible and good behavior was rewarded and risky or bad behavior duly punished. This viewpoint not only shaped our moral code, it lent us an invisible cloak of safety.

This philosopy is the very reason that those of us with lung cancer are consistently asked as to whether or not we smoked. The asker wants to be reassured that our lung cancer is the direct result of cause and effect. Of course they haven’t stopped to think about how this question will impact us. If the answer is yes, the implication is that we are the agent of our own misfortune. And if it is no, we are reminded once again of our extraordinarily bad luck.

Belief in a just world is the thinking behind the stigma associated with a diagnosis of lung cancer. Stigma is defined as ‘a mark of disgrace associated with a particular circumstance, quality, or person’. In the case of lung cancer, our diagnosis is inextricably linked to shame and a blame the victim mentality.

Which makes us all incredibly sensitive to any suggestion that cancer, and our disease in particular, is almost entirely preventable. ‘Helpless to Prevent Cancer? Actually, Quite a Bit is in Your Control‘ reads the catchy title of a recent article from the New York Times. The author, a professor of pediatrics (and therefore, I think, not an expert on adult cancers) makes statements such as this: ‘… you’d have to be living under a rock not to know that smoking causes lung cancer…’ Or this ‘About 82 percent of women and 78 percent of men who got lung cancer might have prevented it through healthy behaviors.’ The author makes a stab at empathy with this observation: ‘You don’t want to get into situations where you feel as if people don’t deserve help because they didn’t try hard enough to stay healthy’. However, the word deserve and that bit about not trying hard enough harkens right back to shame, shame, shame.

The way in which disease is characterized matters. Talking about lifestyle changes that can optimize health is always a good thing, but it is important to remain sensitive to the language that is used.

Calamity of all sorts and cancer in particular is often beyond our control. Nobody deserves lung cancer, whether they smoked or not. But sometimes, shit just happens.

 

Nancy

Yet another guest post from INSPIRE, Nancy also urges others to be their own health care advocates and to not shy away from second opinions:

DSCN0658My name is Nancy. I am 55 years old. I have always lead an active life. And…I still do! I enjoy golfing, reading, reality TV, classic rock, and keeping my pet rats, (I have 6), loving cats, listening to my beautiful red factor canary sing, and working full time as a perioperative assistant for the OR in a busy hospital.

My nightmare began over 6 years ago. I got very sick and ended up in the hospital with pneumonia. I ran a high fever, and was extremely ill. The ER doc told me after a CT scan, that there was a spot on my lung. They did not quite know what it was, so they put me in isolation to rule out TB., which I tested negative for. I was taken out of isolation and before I went home, I asked my family doctor if I should get a lung biopsy, did I have cancer? I was told, no, it was only a pus pocket. I took his word that I was OK, and went back to my life. I forgot about it. Time went by, and I became a pretty healthy woman again.

Then, two summers ago, I became ill with bronchitis. I was treated with numerous antibiotics and it kept coming back. To my shock and horror, a random x-ray found a mass in my right lower lung. I was totally blindsided when I found out the mass was in the exact same area as the spot from 6 years earlier. I was diagnosed with NSCLC adenocarcinoma on September 27, 2011. The same day of my biopsy, I went to the family doctor who misdiagnosed me. He asked me how I was. I told him “not too bad considering I just had a lung biopsy”. Then I let him have it with both barrels…needless to say, he is no longer my doctor!

I had my right lower lobe removed via VATS on October 23, 2011. I am stage 1B. I began 4 rounds of cisplatin-alimta in January, 2012 and finished in March of 2012. I went back to work that April. While I was home during my treatment, I set goals for myself. I was determined to go back to work and not let cancer take over my life. I admit to having scanxiety during scan times…but, I just had my latest scan and I am NED (no evidence of  disease) and have been for 13 months now. Happy dance!

I am a non-smoker. But, I was working in bowling alleys for over 20 years when I was younger and breathed in secondhand cigarette smoke. Did this cause my illness? I think it is a big part of what happened to me, along with the fact that I live in an industrial area, near several auto plants in a suburb of Detroit. Cancer also runs in my family, so it may be genetics.

I take life day by day and know that every day is a gift. I do not really believe that cancer happens for a reason. I feel that part of it is just plain old lousy luck. But I can say, I have begun some wonderful friendships since I was diagnosed. I have done things I would have never thought I would have done including learning to draw blood and also changing jobs completely. No one in my new department knows that I have lung cancer. I am keeping a huge secret, but I am also giving myself a chance to be just one of them and to just be ME. No one to feel sorry for me, no one to look at me and think she has IT. I say never ever give up, fight with everything you have…Be strong, stay busy and focus on your life.. And, most of all, be your own health advocate. Never, ever blindly trust something a doctor says. Get copies of your records, and get other opinions.

Nancy

Alta

Alta, yet another of my INSPIRE friends, speaks of the importance of listening to one’s body. A delayed diagnosis is a common scenario in lung cancer, and for never smokers, tell tale symptoms such as a chronic cough are generally attributed to benign causes. Alta urges everyone to become their own advocate:

When complete silence surrounds me I detect a humming sound coming out of my chest cavity. This reassuring high pitch wheezing is a constant reminder that my lungs are still functioning. They started this musical whistling duet about two and a half years ago. From time to time the palpitation of my pounding heartbeat merges with the duo, which adds tempo to my organ’s musical talent. We are all guilty of forgetting how vital our lung function is; then the silence of their fine tuning gets damaged and we remember. A noisy interruption in their muted function is similar to the loud sound a siren makes announcing the arrival of a dangerous storm. We then have the choice to either cover our ears until the warning goes away or do something about it immediately. A simple examination by a doctor will frequently but not always help you distinguish whether you have a minor case of bronchitis or something more serious. Lung disease does not discriminate; no one is spared from any respiratory endangerment; even those who do not smoke or have never smoked.

For quite a few years I chose to ignore the warning signs and as long as it didn’t stop me from enjoying my early morning runs; why worry? With time the elusive little cough had all grown up and began to rudely interrupt my discussions and to slow down my exercise routine. Neglecting what is important in life isn’t a trait I have in my personality. I rarely ever missed my annual medical exam and in spite of my children’s occasional disappointments; I always prepared wholesome meals. Nonetheless, I was so busy caring for my family’s welfare that my own sometimes went unnoticed. Cigarettes never tempted me and I have always been diligent in maintaining a healthy existence. There was no plausible reason for my doctor to suspect that my tenacious cough was life threatening; subsequently, I was misdiagnosed from 2007 until 2010, when I finally demanded a chest x-ray.

After the Pulmonary Specialist read my questionable chest x-ray; he immediately asked me to have a Thoracic CT scan done which was followed by a PET scan: Per the Specialist’s request Tom and I went to see him the day after the PET scan was done. The doctor sat down directly across where I was sitting, took a glance at my husband Tom, look at me and said with a soft stern voice:

“Alta, you have lung cancer.”

The sound of the warning siren was so loud I became deaf to every word that was said after that.

I was referred to a Thoracic Surgeon and on August 19, 2010, at 8:00 in the morning the surgery was scheduled. I had a Thoracotomy/Lobectomy of my upper right lung and during the surgery the doctor had no choice but to break and spread two of my ribs. I have a concave shaped rib cage; “concave” meaning it turns inward versus turning outward; which made the surgery a complicated one. Nearly three hours later a two centimeter Bronchioloalveolar Carcinoma Non-Small Cell lung tumor was removed along with my whole upper right lobe. The lymph nodes surrounding the cancer area were taken out as well, which was a good thing because a minimum of A-typical (pre-cancerous) cells were found after the biopsy.

The day of my surgery I woke up lying on a hospital bed in the ICU; two plastic draining tubes were protruding out of my operated rib cage; an intravenous needle was inserted and taped on top of my right hand administering morphine and another needle was located in the fold on my left arm providing antibiotics. A lumbar epidural catheter was embedded near my spinal cord between the shoulder blades injecting an anesthesia from a plastic pouch. Two more small plastic tubes were placed in my nostrils passing oxygen through my lungs. I swallowed a powerful pain killer every three hours and even though all these precautions were taken; unless I was knocked out with a sleeping agent, I still felt an excruciating pain racing through my body. This physical state lasted for seven days and eight nights. At the end of my hospital stay and still paralyzed with pain; I felt a thin stream of tears flowing down my cheeks and I thought, “I should have had a chest x-ray sooner. Why didn’t I get an x-ray?” I don’t know if my life has been extended by the painful trials I’ve been through: I just wish I had listened to all the warning signs my “subtle little cough” was revealing more attentively.

Please broadcast the importance of an early chest x-ray screening. It takes very little time and who knows; it may spare you from years of physical trauma and a lifetime of worries.

Alta

Getting ready for the turkey

The house is beginning to fill with good smells, as David prepares a madeira ham (to go with the turkey–a Duff family tradition). By this evening, we’ll also be joined by the Colorado contingent of the family.

My post today is going to be a bit of a mash-up of links. One of the things on my mind as of late has been the FDA proposed warnings for cigarette packages. I find the whole thing a bit ridiculous. It is not that I feel there shouldn’t be a warning on tobacco products; it is just that I don’t understand why cigarettes are still legal. I mean, we all know they are unhealthy for everyone except for the shareholders of Phillip Morris et al, so why, why, why? Isn’t a warning just as effective as spitting on a fire?

Well, of course it is complicated. And a big part of the problem is all of the tax revenues generated by smoking. Guess where that money is going? To the same government that is proposing the warnings on the packages. It’s all more than a bit disingenuous.

November is lung cancer awareness month, something few people are aware of. Following October, dressed in pink for Breast Cancer Awareness, ‘our’ month feels a bit like the ugly stepsister. And yet, there are those who are still working tirelessly to get the word out. I wasn’t able to attend this year, but representatives of Lung Cancer Alliance hosted more than 65 Shine A Light on Lung Cancer vigils in 29 states on November 4th. In addition, LCA has released its annual report card on Lung Cancer. And my sister Laura is gearing up for another Team Lung Love marathon in Austin.

Another bit of good news; in a new report from the National Lung Screening Trial, CT scans have finally been recognized as a lifesaving screening tool for those at high risk for lung cancer. The caveat, of course, is that those of us who never smoked are not in the group recommended for screening. Hence, we must remain vigilant as our own health care advocates (something many of us learned too late).

With everything going on in each of our lives, it is easy to become complacent. However, complacency equals complicity. For a tip on something simple each of us can do, check out this article in The Huffington Post.

And, have a very Happy Thanksgiving.