Tag Archives: lung cancer stigma

A gentleman known as stageIVsurvivor

Posted on November 27, 2012 | 13 comments

This particular guest post is actually the distillation of a telephone conversation that I had with my friend known by our online community as stageIVsurvivor, but more informally as G. When I became part of the INSPIRE community four and a half years ago, G was already a well established member, and practically a legend.

Diagnosed on November 30th, 1999, G’s lung cancer had metastasized to his brain. Nonetheless, his oncologist was confident that his cancer could be cured and remarkably, after a combination of surgery, chemo and gamma knife, G has been out of treatment and cancer free since November of 2000.

Prior to his diagnosis of lung cancer, G smoked. And he still does.

I will be the first to admit that I have had some trouble with this fact, as it flies in the face of all reason. Forget stigma for a moment; it just seems like a good idea to stop smoking if you have lung cancer. However, I am also adamant that one of the best ways to combat stigma is for smokers and former smokers to stand tall and refuse to be bullied or shamed into believing that they somehow deserve a diagnosis of lung cancer. No one deserves this or any other disease, and I was pleased when G agreed to share his story.

After our conversation, I came away with a much greater understanding of who this complicated individual is. Certainly, as a long term survivor of stage IV lung cancer, he provides incredible inspiration. In our forum, he often injects a dose of humor. Occasionally he can come across as a real curmudgeon, and G and I have had a dust-up or two. However, if you were to ask many of those he has helped behind the scenes, they would describe a generous and caring individual.

I was curious as to why someone who had not been in treatment for 12 years would be drawn to a support group for lung cancer survivors.  “I’m just one of the very, very lucky ones…it is my responsibility to do what I can for other people.” G emphasizes that his continued “participation on Inspire is only to help those still suffering and their families“.

Crediting an amazing medical team for his successful treatment, G is on a personal crusade to educate others about the importance of “proper treatment, proper direction and proper insight“. He abhors complacency, and often urges patients to seek a second opinion.

As for his own unconventional approach to survival, G is blunt. First, about the fact that he initially faced his diagnosis with anything but optimism. “I was angry and had a horrible attitude“. Unfortunately, G also ended up addicted to pain medication, and at one point just wanted to give up. However, he experienced a moment of clarity, realizing that he ‘wasn’t dead yet‘. Even while “lamenting the fact that I wouldn’t be around to raise my sons” G acknowledged that he “wasn’t doing a good job then“. He went into rehab and beat his addiction to the pain meds.

And so why does G still smoke? Certainly, there was a sense of “the horses are already out of the barn“–the damage done. But it would seem that the real reason is that having beaten both drugs and alcohol (G acknowledges that he has an addictive personality), he has found nicotine that much more difficult to kick. He’s giving e-cigarettes a try, and if they don’t do the trick, he may try something like chantix. Of course, given his personal stuggle with addiction, he is leary of any chemical intervention.

At any rate, on November 30th, G will mark his 13th year of surviving stage IV lung cancer. He’s a very lucky man, and he knows it.

13 Comments

Posted in Advocacy, Attitude, Surviving

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Tim

Posted on November 26, 2012 | 12 comments

Today’s guest post is from Cindy. This was her first Thanksgiving since Tim’s passing, and she found writing about him quite emotional but also cathartic. Interestingly, Tim also had an ALK mutation, an uncommon occurrence in someone with SCLC.

My husband, Tim, died from non-small cell lung cancer April 27, 2102 after a two and ½ year battle; he was 51 years old. In April of 2009 he had a complete physical and received a clean bill of health. In June he started feeling run down and had a nagging cough. He went to the doctor. Mind you this is about the 6th time I had seen him go to the doctor in the 25 years we had been together. They x-rayed and gave him steroids. He felt better with the steroids, but the cough and fatigue returned after the doses ended. He was also noticing that the eye sight was getting worse in one eye. He went to an eye doctor who immediately sent him to a specialist. The first diagnosis was ocular melanoma, not to be confused with skin cancer. We were terrified, but had a clear plan. After a standard PET scan to be sure it had not spread, they would radiate the cancer with a small puck behind his eye. Done. We even consulted with the radiologist and were getting ready to schedule the appointment. We received a call from the radiologist saying they saw something on the scan. Apparently it had spread. They did not think it was ocular melanoma anymore. Next step, biopsy. Of course we all know the answer to the biopsy question. Prognosis was about 16 months. As terrified as we were with the ocular melanoma diagnosis, at that point I would have given anything to go back to that point.

I will say that Tim (and I) smoked for many years. We quit when Tim turned 40 and he was diagnosed with lung cancer at 48. We have two teenage children who lived through this with us. They are caring and compassionate children and this experience has made them more so. When he was diagnosed Tim asked them to please, for him, don’t turn to drugs or alcohol to drown their sorrows. He asked them to live their life to the very fullest, if not in spite of this, because of this. We vowed to spend as much time together as a family as we could and started planning many, many wonderful vacations and events for the 4 of us. We had some real fun.

After about 8 months of the normal treatments Tim’s oncologist sent us to the University of Colorado Hospital where we met Dr Ross Camidge. There our hopes were bolstered. Turns out Tim had the ALK gene and was able to start on the crizotinib trial. What a miracle. He was feeling great, the cancer was gone. We were having a blast! The best part of that lasted about 8 months. The cancer then found its way to his brain. Whole brain radiation followed and then some progression of the cancer in his liver. The end of May 2011, right after a high school graduation cruise for our daughter, he was removed from the trial. The next 9 months were up and down. There were new trials and new trial failures. There was more radiation and then finally, nothing they could do. He held on so tight and tried as hard as he could. I know he was so very worried about his family, but when they told him there was nothing else to do, he was able to let go. His passing was quiet and beautiful with me, our kids and our dogs there to help him go.

Tim will be remembered for his great sense of humor and positive outlook on life. He always had something good to say to the doctors and staff and was always trying to make them laugh, even when they were telling him bad news. He rarely complained and tried his hardest to participate in everything up until the day he passed. Heck, he worked almost every day until about 2 weeks before he went. He was a good man and my best friend and, smoker or not, he did not deserve to have to leave us so soon.

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Posted in ALK mutations, Death and dying

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And now some words from my friends: Lisa

Posted on November 18, 2012 | 15 comments

In recognition of November as the designated month for lung cancer awareness, I asked members of my online support group INSPIRE if they would be willing to share their personal stories. First up is a post written by my friend Lisa, who was misdiagnosed with a number of garden variety ailments before learning that she had lung cancer. Sadly, a delayed diagnosis is all too common, and the suggestion that her symptoms may have been psychosomatic in origin mirrors my own experience prior to diagnosis.

Lisa also addresses the issue of stigma, from the perspective of someone who was an occasional, or social smoker. Her description of feeling less deserving of care is heartbreaking. Please welcome Lisa:

“I’m a 37 year old woman, married, no children (but two very spoiled cats!). I live in the UK but am Canadian. Was diagnosed November 2011 with Stage IV adenocarcinoma with extensive mets to the bones, brain and liver. I was an Assistant Professor in International Relations at a university in the UK and became alerted to the ‘problem’ initially in Fall/Winter 2010-11 through having shortness of breath/ wheezing/cough which was wrongly diagnosed as asthma. I blamed the cat, had the carpets cleaned and went on with my regular routine of biking to work, doing ashtanga yoga, hiking on weekends and working too hard.

Over the course of that Spring (2011), I also was referred to a physiotherapist for shoulder and arm pain. In June, I started experiencing what are called ‘visual migraines’ – where your vision fractures and shimmers and swirls for about half an hour – and was losing the ability to read text. I was also experiencing photo-phobia – where bright lights hurt your eyes. By September, I had become so sick that I had to go off work, having been diagnosed with ‘depression’ and ‘anxiety’ and having been put on anti-depressants. Still, despite my pleas, and a dramatic weight loss, none of my doctors (and I saw three different family practitioners) would consider my symptoms in conjunction with one another – insisting that they were all common, unrelated problems (migraines, asthma, depression, back pain).When in November, I completely misread my asthma prescription and took 10 times the recommended amount only to have it make no difference to my violent cough, the doctor finally sent me for a routine X-ray. I was called back within hours. Cancer. And so it begins….

There are three points that I would like to make:

1. That it is a sneaky, cruel, insidious disease. Looking back, it was clear that I was getting sicker and sicker and had been for about 14 months prior to my diagnosis. But at the time, it is so easy to just dismiss a cough, a wheeze, feeling a little tired and to continue with your regular routine. Because it happens so slowly, it is easy to miss the weight loss, the lack of appetite, or the excuses that you start to make for taking the elevator instead of the stairs.

2. I can’t prove it, and this is just my opinion, but I have no doubt in my own mind that my misdiagnosis was in large part due to the fact that I was a middle aged female and that my male doctors were preconceived towards a psychological rather than a physiological diagnosis. It is so easy to say that someone’s symptoms are ‘anxiety’ related if they are a little bit complicated, unclear or unusual. Don’t repeat my mistakes. You know when something is wrong. Find another doctor that you connect with and who takes your concerns seriously. Get referrals. Get tested. Refuse to be dismissed.

3. The elephant in the room: smoking. I didn’t do it a lot but I did do it: socially, at parties, doing research interviews if it made my interviewees feel more comfortable. I think that I thought that because I only did it a little, or because I was healthy in other areas of my life – that it wouldn’t matter. And although my doctors insist that the amount that I smoked was incidental to my diagnosis, I tend to disagree. Cancer acts very differently in different people and while some of us can get away with smoking a pack a day and live until we’re ninety, I think that for some of us, all it takes to contract LC is a couple of cigs a week.What is also notable – but hardly surprising – about the general discourse is how there is still an implicit emphasis on non-smokers being more deserving of a cure. (This could be my own insecurity, but every-time I come up negative for a new test that is more common in never smokers (EGFR, ALK), I feel that somehow I have failed at my cancer; that it’s because I am less deserving of a cure.) So, on top of all the other bullsh*t that cancer throws at you, LC has the added sweeteners of blame and guilt. This in turn, acts as a silencer for those of us, who, had we not smoked, might feel more entitled to have a voice in the debate. Instead of speaking up – screaming (or wheezing ☺) for a cure for this woefully underfunded disease – and taking the tobacco companies and other environmental polluters to task for their actions, we focus on our own guilt and quietly accept our ‘punishment’.

As a way of forcing myself beyond my guilt (and having been inspired by Linnea’s amazing blog!) I have started chronicling my own experiences here: stageV.net

I would be so honoured if you would join the conversation. xxx”

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Posted in Advocacy

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