Tag Archives: lung cancer

Whoa

Has it really been more than a month since I’ve posted? It has indeed and what a month plus–lots of water roiling under that bridge.

So where to jump back in…perhaps with my last scan result, which I think I just sort of skipped over. Things look really, really good with the worrisome area in my right lung settling down; maybe even receding a little. I have scans again in five weeks and in the meantime I’m just going to keep busy with lots of positivity. To that end a friend of mine shared that he felt certain I was ‘healing’. It took me aback at first. I’m a truly optimistic person but the notion of healing just seemed over the top–that is, until I looked at that word in a holistic sense and then I realized he was absolutely right. Between mind, body and soul I am feeling extraordinarily healthy–maybe even the best ever (and I’m sure tomorrow will top today).

I’ve had a couple of truly meaningful adventures (all three thanks to LUNGevity) since I last posted. On October 21st I had the privilege of attending LUNGevity’s 2016 Science Meeting; an annual event where grantees (a big part of LUNGevity’s mission is funding medical research in lung cancer) in the areas of Career Development, Early Detection and Targeted Therapeutics gave five minute presentations in addition to a poster session about the progress they are making. It was sort of like a mini ASCO up close and personal but focusing exclusively on lung cancer.

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And then on November 9th I traveled to NYC for LUNGevity’s Celebration of Hope, their annual gala held at the beautiful Mandarin Oriental. It was an incredibly special night all the way around. Andrea Ferris, Linda Pressman Wegner, Dr. Upal Basu Roy and the rest of the LUNGevity staff feel like part of my extended family now and it is always fun and inspiring to spend time with them. My dear friend Melinda Lee was my date for the night and Rob Densen and his daughter Arielle, fabulous friends of mine that I see too seldom, joined us. And of course, some of my fellow survivor/advocates/friends were also in attendance–Alisa, Dolio, Amanda. Always good to hang with them.

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I suppose I would be remiss if I failed to mentioned that I was honored that evening with the Survivor Face of Hope Award. I should also add that this meant the world to me, coming from an organization that I have so much respect for. And although some in attendance hoped I’d give a speech without notes (think HOPE Summit 2016) I stuck to the script–I absolutely cannot be trusted to be spontaneous, for a whole variety of reasons.

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Photo by Alisa Kaye Brenes

Well, I’d barely gotten my bags unpacked when it was time to leave for Indianapolis and a tour of the Lilly Labs. My inner geek was thrilled–interacting with members of the Lilly team and a few cancer cells as well–viewed at a safe distance through the microscope. And of course, I also got to spend some quality time with my fellow advocates. Never a dull moment!

Matt, Katie, Linne, Melissa and Kelly.

Matt, Katie, Linnea, Melissa and Kelly.

Because magic can be in a moment

I’ve gotten an adventure or two under my belt since my last post (with more to come) and I plan on divulging in detail. But before I get to all that I’d like to share a truly magical moment. On Sunday I accompanied my friends/neighbors Machiko and Koichiro Kurita and their dog Momo to Mill No. 5; an enchanted space if there ever was one. The four of us were wandering about and came across this most perfect of props. I whipped out my handy iPhone for an impromptu portrait of two of my favorite photographers and their little peach Momo. Serendipity.

Koichiro, Machiko & Momo.

Koichiro, Machiko & Momo.

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.

 

When Breath Becomes air

If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should. Once I picked it up I found it difficult to put down.

Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately distance himself from the disease with a dispassion that is difficult for a layman. I had to work very hard to not take my own lung cancer personally, but Paul was able to come to a place of acceptance/grace with remarkable speed, and this lends his telling a particular elegant universality.

When Breath Becomes Air was preceded by an essay by Paul in the NYT that garnered a huge response from readers, ultimately leading to a book deal. There was a lot of buzz in the lung cancer community prior to publication of When Breath Becomes Air, in part because some of my friends and peers were personally acquainted with the Kalanithis. Aside from the pre-publication chatter my own introduction to Paul’s book was this touching essay by his wife Lucy, which also appeared in the NYT. I kind of fell in love with Dr. Lucy Kalanithi after reading it and have been hoping for some time that I would have the opportunity to meet her.

Linnea, Lucy and Diane

Linnea, Lucy and Diane

Well a couple of weeks ago I got my chance, as the Harvard Book Store sponsored a conversation between Lucy and Neel Shah, an assistant medical professor at Harvard Medical School. The venue was the Cambridge Public Library and my friend Diane and I (in true fangirl fashion) got there super early with seats front and center. Better yet, before the event started I had returned to the lobby in order to refresh my parking ticket just as Lucy was arriving. She recognized me from social media and came right up to say hello and gave me a great big hug. Now I was smitten.

Once the event got under way, Lucy read some passages from the book, conversed with Neel for a bit and then took questions from the audience—many of whom were medical students. Some of the questions were of a truly diffuclt nature, yet Lucy was unfailingly warm, patient and kind. Afterward a long line formed for autographed copies of the book, and Lucy took her time with each and every person. A physician herself, I can only imagine that she brings the same care to her practice.

Read the book, and better yet, if Lucy Kalanithi comes to your town, go!

Media: getting your story out there

Screen Shot 2016-05-18 at 12.57.24 PMThe New York Times devoted their Magazine on Sunday to cancer and I was lucky enough to have my story included in the online version. This is the second time I have appeared in the New York Times and no, I don’t know anyone who works there. However, I am an avid Times reader and in both cases responded to a request for reader’s stories. Each time I got back to the editors shortly after the request was made (important) and had a striking, high resolution image to accompany my story. The clipping on the left is from 2010 and Sadie Dayton took the photo.

For Sunday’s version, which you can see here, I included a recent headshot taken by my friend Daniel Mathieu. And happily for Daniel and myself (and lung cancer, which is why I do this stuff in the first place) we got top billing.

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So my advice is to be on the lookout for opportunities to share your story with media and when they present themselves be ready (elevator speech and accompanying image) and don’t be shy. You might be just what they were looking for.

xo

This is Hope

It’s been more than two weeks now but I’m still high on Lungevity’s National HOPE Summit. Some clever person in attendance coined the hashtag #thisishope which absolutely sums up what I have come to view as one big family reunion. This year we numbered about 300 survivors and caretakers. All with a common goal; doing something about lung cancer.

Dolio, Linnea, Bruno and Diane.

Dolio, Linnea, Bruno and Diane.

Leslie and Andy Trahan (<3 these two)

Leslie and Andy Trahan (

Striking this year were the number of young people in attendance—and of course the older I get, the greater the number of survivors who I look at and think, ‘you could be my child’. Absolutely unacceptable and something that really gets my panties in a twist. However, what these young survivors and their caretakers bring to advocacy is immeasurable passion, energy and optimism. I am also always incredibly moved by those advocates who have lost either a family member (sadly, sometimes a child) or a close friend to lung cancer but continue to fight for not only their lost loved one but all of us with this disease. Thank you.

It is never a good time to have lung cancer but with FDA approval of eleven different drugs for lung cancer since 2006, it is at least a time of increasing therapeutic options. And look at that picture of all the people who have lived for ten years past diagnosis (Diane and myself included)—again, hugely encouraging.

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Survivors ten years and more out from diagnosis

And that first photo? Dolio, Bruno, Diane and I are all lung cancer patients/advocates (although you wouldn’t guess the patient part looking at the picture, and that is why I love it so). The four of us went out to dinner the final evening of HOPE summit. Our reservation had been mistakenly made for the following night and the only available table was outside and it was pretty darn chilly. Diane played the C card and upon hearing that we were all living with lung cancer, the manager was overcome. His mom had just been diagnosed with advanced breast cancer, and our smiling faces made him feel infinitely more hopeful. He ushered us over to perhaps the best seat in the house and then brought us this ridiculous (but oh so fun) tropical drink. It was a lovely and somewhat surreal ending to a fabulous weekend of learning/bonding. Thank you Lungevity and see you next year!

Advocacy April

LUNG FORCE: I’ve been on a whirlwind of advocacy and it all started with a quick trip to DC with LUNG FORCE and the American Lung Association. Advocates from all fifty states were pulled together to lobby Congress to sign on to a proposed bill increasing funding to the NIH. It was a heady if all too fast experience with a surprise appearance by Miss Patti Labelle (who sang Somewhere Over the Rainbow–my favorite ever song), as well as some inspiring comments about where cancer research is heading from Dr. Francis Collins, the director of the NIH. In addition we heard from Congresswoman Nita Lowey and Senator Dick Durbin, Dr. Johnathan R. Whetstine, Harold Wimmer (CEO of the ALA) and myself—adding the patient perspective. As always, it was great to catch up with some of my lung cancer peeps and to make some new friends as well.

LUNG FORCE advocacy day

LUNG FORCE advocacy day

My friend Karen Latzka gives Dr. Francis Collins a hug

My friend Karen Latzka gives Dr. Francis Collins a hug

Me and Miss Patti Labelle

Me and Miss Patti Labelle

My friend Janet Freeman-Daily in New Orleans for the AACR SSP program

Me and my friend Janet Freeman-Daily in New Orleans for the AACR SSP program

Invitation to Cancer 101

Invitation to Cancer 101

The panel for Cancer 101

The panel for Cancer 101

The patient has a seat at the table: representing

The patient has a seat at the table: representing

AACR SSP: I found out about the AACR’s Survivor Scientist Program by chance—two days before applications were due. My friend and fellow advocate Janet Freeman (who I learned had also applied) was a trooper and at my last minute request, wrote a letter of recommendation for me.

To say I had technical difficulties from the get go is an understatement. Unable to download their application form and with no time to figure out a way around my issue, I sent in what could only be described as cut and paste. And crossed my fingers.

Weeks went by and Janet learned she had been accepted to the program but I heard nothing. Oh well—Janet would be an excellent representative for lung cancer and I figured I could apply the following year.

And then I got a phone call from a lovely woman named Karen Mills, wondering why I had not responded to the notification that I had been accepted. Long story short, it was right around this time that I became aware that quite a few of the emails I was sending out had not been answered. At first I figured it was me, that nobody liked me anymore (sure, why not). But finally I realized that it was related to my email account having been hacked. My super smart former son-in-law Jamie explained that the hackers could be selectively intercepting some of my inbox. Turns out these wiley hackers had opened another account using my name: linnea.1111@hotmail.com. NOT ME, and yet much of my mail was/is being sent to that account. It is a big hot mess that I am still trying to untangle.

But back to the SSP—I was in!

Truth is, I had no idea WHAT I was in for. The SSP takes advocacy to a whole other level and I will not be able to convey everything I took away from these few days in one post.

Held in New Orleans as part of the annual AACR (American Association of Clinical Researcher’s) convention, it was like boot camp for advocates interested in learning more (much more) about the science and policy behind cancer research. Lots of rock stars of the cancer world here, and Vice President Joe Biden shared remarks about his Cancer Moonshot at the closing event (which sadly I missed—due to an early morning flight).

Over the coming weeks I will tell you more about what I learned while in attendance (one of the mandates of participation—that you share information gleaned there with your community).

NCCR:  Next up was a congressional briefing pertaining to the National Cancer Moonshot Initiative. I again provided the patient perspective alongside a very distinguished panel (see image above). And I was positively touched that my son August’s childhood friend Jonathan Soohoo was in attendance along with my dear friend Sally. Absolutely exhilarating. Next up: Lungevity’s National Hope Summit!