Removing The Stigma

Being diagnosed with lung cancer doesn’t make you a bad person. It doesn’t mean you’re awful or mean or irresponsible.  Being diagnosed with lung cancer shouldn’t make you a piranha.  Lung cancer patients are loving mothers and fathers, dedicated teachers and giving spouses.  Smokers, even former smokers, who get lung cancer, are treated like the scum of the earth.  The difficulty in changing minds and building tolerance is that there are two different ‘groups’ affected by lung cancer…non-smokers and smokers.  Between those two groups, though they suffer from the SAME disease, one group sees the other group as ‘different.  One group feels they are different because they got lung cancer in a different way (even if they don’t know HOW they got it).  What saddens me is that the end result is the same, yet no one seems to focus on changing that outcome.

My mom’s follow-up appointments at University of Alabama-Birmingham’s Kirklin Clinic were 50-50…nothing changed for the worse, but nothing improved either.  My mom suffered through a full day of tests…tests that even the average person would struggle to endure…bone scan, MRI and a CT.  Can you imagine sitting up waiting all day, just to have a 45-minute scan where you can’t move?  The folks at Kirklin were nice enough, but it was the waiting that was more than unbearable, especially for someone who is diabetic, physically limited and mentally exhausted. Trying to make sure my mom was eating between tests was a challenge all by itself.  We got to Kirklin at 7 a.m. and didn’t get back to my house until almost 4 p.m.  I felt so bad for her; but she was determined to make it through the day and despite any discomfort, she fought through the pain if she thought the tests would be able to give us any answers.

Two days later, we were back at Kirklin; this time for a follow-up appointment with ‘Doc Rourke’ (in a previous post I mentioned that he looked and sounded like Mr. Rourke from Fantasy Island).  Anyway, mom ended up waiting almost half a day.  Doc Rourke was way behind and waiting for him got so bad for my mom that we requested an exam room with a bed.  The doctor did not see anything on her brain scan to indicate that new lesions had formed nor did he see any more swelling.  So brain scans were clear and the previous lesions were gone.  However, the other scans showed what we already knew…that the cancer has always been in her bones and in her lower right lung and even after chemo and radiation, never really went away.  We weren’t surprised so it didn’t really discourage us.  Fortunately, she has no bone or chest pain.  But what did take the wind out of our sail was finding out that the pathology company that has my mom’s original biopsy never responded to Kirklin’s request to send those cells for testing.  So, we will never know if mom would have been a candidate for Pfizer’s newly approved drug Xalkori. We always knew that it was a long shot and that the ALK gene is rare, especially in smokers.  But at least it was an option and one that we were willing to exercise. Unfortunately, the incompetent, lazy individuals at the lab in Monroe, Louisiana, chose to ignore the request, thereby removing any chances of possibly extending her life.

Right now, mom’s issues seems to be more heart-related than cancer-related. The swelling in her feet and legs is unbelievable and I’m shocked that she’s even able to walk.  She has no shoes that fit and she has sores that weep fluid constantly.  Doc Rourke was pretty sure none of that is related to the cancer.  He felt that there might be a clot or two and that we really need to follow the symptoms.  Mom is now on hospice care, which seems to be a bit tricky to navigate at this point.  So we’re now dependant on this group to provide the answers, with consultation from her primary care physician.   This whole process is like navigating through quick sand with 10-pound weights strapped around our ankles.  I was told hospice should help alleviate the pressure of dealing with all of these issues and should provide support. 

Each day I see signs of discrimination against smokers and non-smokers who have lung cancer.  It’s not only discouraging, but it’s sad.  Some individuals make decisions based on their dislike for smokers and smoking.  None of us like being around smoke-filled environments, but we don’t know each person’s story.  The blatant discrimination is why there isn’t as much funding, awareness or research being conducted on lung cancer compared to other types of cancer, despite the fact that lung cancer ranks number 1 in cancer deaths.  No one seems to understand how addictive cigarettes are and how hard it is for many smokers to quit.  Granted, there are some smokers who choose not to quit and haven’t tried.  I suppose that’s no different than those who choose to have unprotected sex despite the warnings that doing so could possibly expose them to sexually transmitted diseases and even worse, HIV.  Some people you just can’t reach, no matter how dire the consequences.

Having said all that, let’s not shame or ignore those smokers and former smokers who have had a hard time trying to quit.  I’ve seen what lung cancer can do.  I don’t know how much longer my mom has or how much fight she has left in her. But what I do know is that I plan to do all I can to help remove the stigma surrounding lung cancer so that those who suffer from it don’t have to die premature and painful deaths.

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6 thoughts on “Removing The Stigma

  1. Great post, RoniLynn. Thanks for speaking out so forcefully and honestly against the stigma of lung cancer that unfairly assails all patients and makes their lung cancer journey much more difficult than it ought to be. My mother also passed away from lung cancer, back in 2002, after a very difficult 14 month struggle. Compassion from others, including medical professionals, was often in short supply… until they found out she’d never smoked. But for me, the source/reason for her cancer never really mattered — I just wanted her to be cured! All cancer patients, including lung cancer patients, deserve a cure for their illness. Neither judgment, blame, shame, nor guilt will end lung cancer. Only support, awareness, and a sustained commitment to increased lung cancer research will bring about better treatments and a cure! Thanks for doing your part to bring about change. 🙂

    (By the way, I think you meant “pariah” not “piranha” at the top of the page, third sentence.)

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    • Hey Rita! Thanks for the reply. It’s it awful that folks have such negative attitudes towards lung cancer patients! So I suppose what we have to do is continue to put a personal spin on it; show folks that lung cancer patients are no different than those with any other type of cancer. Gotta remove the guilt and shame! ugh! We’ll keep plugging away and won’t stop until we raise awareness that will in turn help increase research and funding. So sorry about your mom. I KNOW that was a tough, tough time. And yep, you are so right about the word correction…ha! That’s kind of funny. thanks so much.

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  2. RoniLynn, Thanks for letting me know about your blog. I have added it to my Cancer Blogs list at http://www.beingcancer.net. I have also excerpted parts of this post and republished it as a Guest Post. I included two links to your site as well as a link to the original post. You should see an increase in traffic. Keep up the great work.
    Take care, Dennis

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    • Hey Dennis. Thanks so much for featuring me on your blog. I love your blog. I hate that there’s a need for it. But I do love your dedication. So much to do, so little time! Thanks for stopping by and pushing some folks my way.

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  3. Pingback: Removing the stigma of lung cancer | Being Cancer Network

  4. Suffering is suffering, no matter the cause. I understand your pain. I have a family member with AIDS.

    The truth is, we can’t pinpoint exactly what causes illness in some people. Some smokers get lung cancer while others do not. Some people with lung cancer never smoked.

    Be there for Mom, she needs your support.

    I am thinking about you through your struggle. Thanks for the post.

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