Wednesday, January 16, 2013

JUST BREATHE

I'm departing a bit from breast cancer, chemobrain, metastatic disease, research, ranting and raving.  I'm reaching across the aisle.  I've referred to breast cancer as the bully of all cancers and it's something that troubles me.

For starters, my very dearest friend in the whole wide world has a very, very rare form of thyroid cancer.  I wrote about her and her medullary thyroid cancer when this blog was just weeks old.  When she was diagnosed, just two months before something was going wrong in my left breast, I remember springing into action to figure out where in the world they were doing research on medullary thyroid cancer.  There's no glory in finding a breakthrough for a cancer that is diagnosed in about 450 people per year.  Pisses me off because it just does, but there is an element of understanding.

On the other end of the spectrum, lung cancer.  Nearly a quarter of a million Americans are diagnosed with lung cancer each year.  There's no glory in finding a breakthrough for a cancer that is so stigmatized, THE cancer which is the poster child of "blame the patient" for their diagnosis.  Pisses Me OFF.

My grandfather died of lung cancer in 1966.  He was 55 years old.  My dad was diagnosed with an early stage lung cancer in November of 2006 right after I began chemotherapy for my breast cancer.  He died in July of 2007, days after his 71st birthday.  It was not from the lung cancer but it was the lung cancer that began to topple a series of dominoes leading up to his untimely and unexpected death.  Don't even bother asking me if either of them smoked.  It's not the point.

What IS the point?  Lung cancer will kill more about 160,000 people this year.  That is more than colon, breast and pancreatic cancer COMBINED.  Lung cancer kills more women each year than breast cancer.  (Heart disease is the number one killer of women.)  Where is the awareness?  Where is the ribbon?  Where is the compassion?  Where is the empathy? Where is the research?

We do not like be "blamed" for our breast cancer diagnoses.  Why is it okay to lay blame at the feet of those diagnosed with lung cancer?  Why is the very first question asked, "Do you smoke?" and if that answer is no, the very next question is, "Did you smoke?"  WHAT difference does that make??  If you must know, about 40,000 of those diagnosed with lung cancer each year are "never-smokers."  All are stigmatized, treated with that haughty, self- righteous, "you brought this on yourself" attitude by many of us.

I implore all to find their compassion and lose the judgement.  The statistics are startling.  There are no effective screening tools to detect lung cancer at its earliest stage.  Five year survival rate?  16%  .....  While breast cancer is funded by the government at over $21,000 per death, lung cancer?  Less than $1,500.00 per death.

I'm playing the numbers NOT the underlying reasons.  These are lives and every life matters.  What brings this on?  For starters, I was having a twitversation with a couple of young women who are not only upset over the disease, but equally upset over the stigma.  In the midst of the conversation, this appeared on my screen:



That was a pretty big deal.  Dr. Otis Brawley is the Chief Medical Officer for the American Cancer Society.  He's also very big on evidence based medicine and "show me the data."  I'm all about medical decisions based upon science, proven science.  And I'm all about saving lives.  All lives, as many lives as possible.

So friends, I ask you to think before going down the blame path.  Take a look at what they are doing at Uniting Against Lung Cancer.  In May of 2007, we sponsored a kite in honor of my dad at their inaugural, signature event:  Kites For A Cure.  If that sounds remotely familiar, it's the "for a cure" part that caused a dust-up but in the spirit of not going "there" I'm not going there.

Let's just stick to good will.  No stigma, no blame.  Do you know the color of the lung cancer ribbon?  I'll bet more don't than do.  It's clear.  It's powerfully significant.  Invisible.  We are at the top of the visibility chain.  Let's share it with others.  They need our help.

I told Dr. Brawley I'd jump in to try to see what might be done to remove the stigma and I told him I'd get some of you to join me.  No action is necessary, just a change in mindset.  And a couple of retweets if you are on twitter.  I just registered a new hashtag: #NoStigma.  It's a start......


23 comments:

  1. The numbers tell a grim story, one that will only be changed by increased funding for lung cancer research. And yes, the stigma plays a direct role in the discrepancy in public and private funding. Thank you for shedding light on the need for a change in public perceptions about this disease.

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    1. Linda,

      I agree wholeheartedly. It's time to stop everything, roll up our sleeves and work together. Now that research is at the cellular and molecular level, I do believe advances in treatment of one cancer (or even one disease) will spill over and others will reap the benefits of what is coming out of the laboratories.

      It's time to change the perception and absolutely time to lose the judgement about lung cancer.

      I found out about your organization when it was still Joan's Legacy. When I was in treatment, Lauren Terranzano was writing a column in a Long Island paper chronicling her life with lung cancer. One of the last (perhaps the last) column was encouraging all of us to "go fly a kite." I still have the copy of the newspaper. I remember crying when I saw the announcement of her death in the banner.

      This year, I am making myself a promise to join UALC for the Strolling Supper. Keep doing what you are doing and I will keep trying to share with as many as possible until there is #NoStigma.

      Best to all at UALC,
      AnneMarie

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  2. Touching. The sister of my sister's husband died of lung cancer. She was 50. Her case was hopeless and she knew it. Let's do something.

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    1. I love that you are RIGHT beside me, knowing it's up to those of us who can, to reach out and try to see if it's possible to make a difference. I'm so glad that our paths crossed and we have are advocating on each side of the Atlantic!

      xoxox

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  3. AnneMarie,
    Thanks for bringing up this stigma issue. Cancer is cancer. What may or may not have caused it becomes something of a moot point when the diagnosis comes in. All cancers deserve the necessary research and patients deserve compassion across the board. My sister is a two-time cancer survivor--breast first, then a primary lung cancer. We'll never know for sure what caused either, but there are certainly other causes to lung cancer besides smoking, like radon exposure in homes. I now wear a cancer awareness bracelet that has 18 different-colored beads on it for many types of cancer including the white pearl for lung cancer. As you say, let's just stick to good will.

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    1. Lisa,

      THIS- "a moot point when the diagnosis comes in" ...

      THAT is what it's all about. I can't just sit on the sidelines and watch anyone be ignored or blamed. I am so sorry to hear about your sister. That's horrible. Is she ok? Are you ok?

      Hugs and love...

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    2. AnneMarie,
      Thanks for asking. My sister is 6 1/2 years out from her BC diagnosis and 2 1/2 out from her lung cancer diagnosis. She is doing well and I am so thankful for that.
      Keeping your mom, you, and so many others in my prayers.

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  4. Excellent post. I know of 2 others who've had/have lung cancer who are not smokers, but as you said, it's not the point. No one has perfect habits. Judgment has no place -- only compassion.

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    1. Eileen...

      Thank you for leaving me a note.... because I LOVE your blog.... And no, not one of us is perfect and we all mess up sometimes. I hear that loud and clear....

      Very glad to "meet" you.....

      AM

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  5. Excellent post, AM. Cancer is cancer. Period. Shelve the judgment & the blame.

    You have been on my mind every day lately. There is just too much cancer suckage going on around you right now. Sending massive lopsided hugs. xo, Kathi

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    1. Kathi...

      Thanks for the words of support and for reaching out behind the scenes, too. These friendships have come to mean everything to me. I know **someone** is always around and generally within hours, EVERYONE is around..

      Hugs to you,

      xoxox

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  6. AnneMarie you must have read my mind. My very close friend who is like a 2nd mother to me has inoperable Stage III- Stage IV lung cancer. She had lung cancer before that was operable, then she had breast cancer and in November 2011 she got a new lung cancer. I never blame the victim if they have lung cancer and I don't give a rat's behind if they did smoke or not. Lung cancer is a very cruel disease. I've lost a few important people to lung cancer. Yesterday I went with her to her 2nd opinion appointment where she has a big decision to make having done the only chemo with her pathology that she did not have to lose her hair with. She is now faced with choosing a phase I trial (where you have to do 2 new biopsies and scans, be eligible and spend a lot of time doing scans and tests, etc, or go on a once a week abraxane that has been approved for lung cancer (it's a mets breast cancer line of defense that my best friend did). She is amazing and so special to me. I remember last year when I went with her to have her port put in and it took longer than expected, and I had an appointment with me reconstructive breast surgeon and I just cried out of sheer frustration and was so lucky I have an awesome plastic surgeon who understood that I was overcome with grief. My best friend's chemo (the one that died of MBC a year ago) was not working- abraxane -the same drug they are proposing to my friend with lung cancer, and my friend getting her port for lung her lung cancer that day....it was just too much for me. I have had time to digest all of this...I am sorry I am writing so much, but lung cancer is really on my mind ...and NO ONE DESERVES lung cancer EVER. Meanwhile I just want my second mother to have QOL. Her options are so limited. She is the kindest most fun person you would ever want to know. Thank you for reminding everyone about lung cancer. The only reason I hope we find a cure for breast cancer is so we can find a cure for all cancer. I've lost too many and I want to hold on to my friend and see her get to enjoy her life for whatever time she has. She is so brave and she doesn't complain. That's my rant for today. One day at a time- that's all we can do and you said it most important-Breathe. Hugs to you and your mom sorry I took so much space....xoxoxo-Susan

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    1. Susan,
      I am so sorry to read all of this. Too much coming at you in waves. It's like you come up for air and then you're back under water. Remember this... you aren't alone. And you can take up all the space you want. That's what this whole space is all about... a two sided conversation...

      xoxox

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  7. dear anne marie,

    such compassion you've shown, stepping out of the BC box to address complex and disturbing attitudes and judgements with regard to other types of cancer. in my hospice nursing years there were so many patients and their loved ones who expressed feeling diminished with such a heavy burden of shame imposed upon them when they were suffering the worst time in their lives. the pain and sorrow they endured was so needless and cruel. vaginal cancer, head/neck cancer,melanoma, anal cancer and yes, lung cancers of which there are dozens of causes, many still not understoood - they all can carry a stigma that is devastating, on top of excruciating pain, disfigurement, isolation and the indignities that accompany such suffering.

    remembering many of those people and their families and friends is making me teary even now. i think about the phrase, "you can't unring the bell". once someone who is dying has felt the awful sting of feeling others blame them for their illness - sometimes from the get-go by their own physicians (happens ALL THE TIME with lung cancer!), family or others, it's very difficult to undo the emotional damage. i had several patients who took that blame to heart, and it was heartwrenching to witness the anguish they felt, to hear them say how horribly guilty they felt about the pain they caused their loved ones, becasue they believed they CAUSED their disease. NO ONE DESERVES ANY DISEASE, ANY KIND OF CANCER - NO ONE DESERVES TO BE ACCUSED OF CAUSING THEIR DISEASE. NEVER. EVER.

    i think your call to all of us to be aware of lung cancer, the stigmas that get attached to it, and to many other cancers that are also underfunded, along with encouragement to demonstrate compassion in our attitudes, our words and our deeds is well said. thank you so much for this post, anne marie.

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    1. Karen, my dear cherished friend,

      I saw this comment last night and THESE are the words that everyone needs to see. THESE are things that OUR actions are doing to people during what begins as a terribly fearful time and then this is the burden they bear and how horrible it must be for the loved ones left behind to know that is how they left this earth.

      We all live with an element of regret over things we feel we might have done differently. There are plenty of things I feel I may have mishandled. But, if I recall something that nags at me, I will sort it out in my mind and if appropriate, I will share the disappointment in my behavior with the appropriate person. Regret can be poisonous and although I believe it is a useless emotion because we can't unring the bell as you so eloquently point out, our regrets are something we must come to terms with... or they will poison us.

      Thank you for sharing your experience here. Your words have added an invaluable dimension to this conversation.

      MUCH MUCH love,

      AnneMarie

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  8. Dear AM, you are an amazing lady. With all you have going on in your world, you are always ready to embrace more and advocate more. You are A-MAZ-ING!!!

    My dad passed away from mesothelioma in Dec 2007 ... a few months after you lost your dad. I also have a friend with lung cancer who finished chemo last year and has been NED for 9 months and counting. I had no idea the color of the lung cancer ribbon was clear. That speaks spades.

    Just want you to know that I am always in your corner!
    xoxo

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    1. Sweet Renn...

      Last night, I realized I've gone in many directions and in doing that, I'm missing many of my blog buddies and I haven't been "visiting" often enough .... and I rarely leave notes because I'm (ahem) no longer able to do 15 things at once. And, I'm still operating at about 15% of what I was able to do before this brain nonsense impacted me.

      I'm so sorry to read about your dad. This post was difficult to write because I still miss my grandfather (yes, after all of these years and despite the fact I was so young... he was larger than life and loved by many.... ) and even though my dad didn't die of the lung cancer that started the events that led up to his death. He was set to do four rounds of chemo when they finally addressed everything ..... after the second round of chemo, his body would take no more. It's a story worth telling but I would have to find a way to block my mom from reading the post. FAT chance..... but I'll find a way.....

      My neighbor was diagnosed with an early stage lung cancer. I learned about this a few months after I finished my own treatment (maybe 2008). She was okay and I saw her about a month ago, a bandana on head.... I haven't spoken to her in detail about what happened but obviously, the doctor was right.... My mom developing a bone metastasis after five years is not the norm. My neighbor's situation, not shocking or unexpected and THAT's just wrong.

      Thanks, Renn... for beginning one of the first people to comment here and for being my friend.... I think you are awesome!!

      xoxox

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  9. I've been thinking about this a lot of late, how it seems many of us are so judgmental. I even tweeted this very thought today. So, yes, count me in! Out with the blame and stigma and in with the unity and compassion! Thanks for this passionate and important post, my friend.

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    1. Love you, Nancy. I can't sit on the sidelines. I hope you get a chance to read the columns of Lauren Terrazzano. They are in Friday's post. She was beautiful and a phenomenal journalist. Her columns are so raw and real and she talks about so much of what we all discuss. Except she had lung cancer. Cancer is cancer. And it all stinks... and yes, there is lots of judgement going around in many different places. It's troubling on so many levels.

      xoxox

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  10. May I very innocently & honestly ask... how does "removing the stigma" help reduce the numbers of lung cancer occurrences in our country?

    Dr. Brawley said: "If we can remove the stigma from lung cancer we can make a big step toward helping everyone w/ this disease." How are the stigma & that "big step" related? Can't the "big step" in helping everyone w/ this disease be taken with or without the stigma?

    The "stigma" doesn't make a person get lung cancer... and the "stigma" doesn't help a person get rid of lung cancer if they have it. It genuinely seems to me that the only way to truly help people regarding lung cancer is #1 finding out how people are getting it & #2 finding out how to cure people once they have it. Those are the only two "big steps" we need to take right now.

    A "getting rid of the stigma" campaign is just about as phony to me as the "breast cancer awareness" pink ribbon crapola campaign. Both might make people feel good in that oh-so-wonderful politically correct way but actually amounts to zilch... nada... nothing.

    Please don't jump down my throat. I'm being totally honest & sincere. My best friend... the true "love of my life"... my precious Daddy died of lung cancer in 1987. As he laid in his hospital bed fighting for his life, "stigma" was the least of his worries... and mine.

    --Andrea

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    1. Dear Andrea,

      No one is allowed to jump down anyone's throat in this blog space and all comments, as long as no one is attaching anyone else, are welcome.

      My dad was diagnosed with lung cancer in 2006 just as I began chemotherapy for breast cancer. He died in July of 2007 and less than a month later my mom was diagnosed with a 2nd breast cancer (20 years after her first one). I watched my dad die. Then, I stepped into his very big shoes to help my mom deal with surgery about 40 days later. I miss my dad every single day. I feel like I was cheated. I am angry that he was taken from me and my heart aches for my mom every single day.

      Back to the point..... The stigma and that stupid ribbon. The pink ribbon is not something that I am fond of at all. There are plenty of places where I've written about my distaste of that ribbon. The ribbon is big business and the ribbon hasn't gotten us very much in the way of **meaningful** progress. But it's gotten breast cancer tons of money. The breast cancer activists have gotten very noisy about the way this money is being spent (wasteful in my opinion). Let me get off THIS soapbox before I get ugly about the ribbon.

      Why is it necessary to lose the stigma? In my most humble opinion, until we can lift the stigma, there will continue to be very limited funds going toward lung cancer research. People are reluctant to donate privately to a disease they perceive as "self inflicted." Similarly, our represented officials are not pushing government funding because we, their constituents are not stepping up and demanding they fight for lung cancer funding.

      You are 100% correct in saying that the only way to truly help is by finding out how/why people get lung cancer and then, finding out how to stop the disease from killing them. I would go a step further. We also need a way to do effective screening to find these cancers at an earlier stage where they seem to be more responsive to the treatments that are available.

      This requires research and research requires money. Lots and lots of money. We need to lift the stigma so that we can start to see the funding for the research. I understand exactly what you mean when you say the stigma was the least of your worries as your dad was dying. I wasn't thinking about the stigma when my dad was dying either.

      I hope this makes sense.... why I feel the stigma is the CAUSE of the many deaths. We need money for lung cancer research to answer your questions, our questions. As long as this stigma exists, it's impossible to get the funding to make any progress at all. And the deaths will just continue.... and that is wrong. It's not okay to blame anyone for their disease and it's troubling to know that funds are being withheld because that is what many of us are doing. The mindset seems to be, "they caused their own problems and I'm not giving my money or tax dollars to fix it." That's why removing the stigma matters. You are right.... stigma didn't cause your dad's lung cancer or my dad's lung cancer but as long as it exists, there will be no progress, no understanding of the disease, no cure.

      I am so very sorry about your dad's death. I mean that with my whole heart.

      AnneMarie

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  11. I understand your point, Annemarie. Thank you for responding so kindly... and thank you for your sympathy about my Dad's death. It's been 25 years this month. It hardly seems possible.

    Hugs & prayers to you & all those you love & care about who are suffering--Andrea
    XOXOXO

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    1. Big hugs to you, Andrea. Thank you for the thoughts and prayers. I'm holding you close in my heart, today and always.

      MUCH love,
      AnneMarie
      xoxox

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