Spotlight on an advocate: Day 13

*In November (the month dedicated to lung cancer awareness), bloggers are highlighting a different advocate everyday. My first post is about Diane Legg and it is on Day 13.

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.

Diane Legg and Hildy Grossman: two super advocates!

Diane Legg and Hildy Grossman: two super advocates!

In 2008 my path and Diane’s crossed once again. I was attending Lung Cancer Alliance’s annual Shine a Light on Lung Cancer at the Prudential Center in Boston because my trial buddy Kevin Brumett was speaking—Kevin and I were early participants in the first clinical trial for an ALK inhibitor. Well, as a co-chairperson, Diane was there too and we finally got to meet. And the rest, as they say, is history.

I treasure Diane as a close friend but also as an inspiration; the first person I saw a little further down this path than myself.

Diane was only 42 when she was diagnosed with NSCLC. She’d strained a muscle while picking up her one year old and when the pain didn’t go away, she was scanned to rule out a pulmonary embolism. What they found instead was lung cancer.

The fact that Diane has lung cancer is not the reason she became a passionate advocate. Instead it was the death of a close family friend who had been diagnosed at the age of 43 just a few months prior to Diane. Devastated by how quickly her friend passed, Diane was galvanized into action: “I turned her loss into advocacy.”

Her first act of advocacy was to become co-chair of the Massachusetts chapter of the Lung Cancer Alliance. All those Shine A Light on Lung Cancer events? That was Diane’s brainchild. She also teamed with her husband Dave to form TeamLUNGStrong, part of the annual Pan-Mass Challenge. Monies that they raise are earmarked for lung cancer research at Dana Farber and Massachusetts General Hospital. Despite the fact that her cancer is now advanced Diane herself rides in the PMC (amazing, truly amazing).

I asked this mother of three and super advocate what motivates her. She responded very matter of factly that ‘you don’t have a choice, you just go on–everyday is a gift.’ And then I wondered what she would want if she could have anything in the world. Her answer? ‘Not to worry.’

Fitting somehow that this post is going up on Friday the 13th. Diane and I both had some really bad luck; non-smokers diagnosed with lung cancer at a young age. However, we also know when to count our blessings. More than a decade after diagnosis we’re still here. Through this journey we have had experiences and forged relationships that have helped make the unbearable bearable. Diane, I am grateful for all you do on behalf of everyone with lung cancer. And I am oh so proud to be your friend. ❤

#lcsm  #LCAM

13 responses to “Spotlight on an advocate: Day 13

  1. Two peas in a pod! Thanks to you both for making the world a better place to be.

    • Diane led the way for me; becoming an advocate almost as soon as she was diagnosed. She’s breaking trail for the rest of us.


  2. Once again, Linnea, another great blog post. Thanks for letting us “meet” Diane. I am so in awe of both of you who have become advocates of lung cancer.
    And this sentence: “More than a decade after diagnosis we’re still here” brought tears. I celebrate the magnitude of that sentence, the “wow!” of it is beyond words.

  3. I have enjoyed following your well written blog for about 3 years ,since I was on phase 1 trial for LDK378,a patient of Dr. Alice Shaw.Dr. Shaw encouraged me to follow your blog. I am also a non-smoker ,an 8 year surviver but older than you. I am 72,but still work full time. I am interior designer and run my own company, I will be in Boston11/18- 11/20. Dr. Justin Gainor,formerly a Fellow working with Dr. Shaw, has asked me to walk the runway with him at” Couture for Cancer Care.”
    I would love to meet you if you have any available time. I am a huge admirer.

    • Jane, I would love to meet you (and how cool that you are walking the runway). I will send you a PM and let’s see what we can arrange!


  4. Another grateful survivor thankful for you and advocates like Diane❤️


    Thank you for such wonderful people like yourselves!

    I to was diagnosed with third stage lung cancer October 2014. After grueling Chemo and Radiotherapy the tumor shrunk by 50% and for a year we managed it with immune therapy but Friday the 13November I found out that it had spread…..luckily in the same area but still pretty aggressive! I learned a very big lesson……..don’t go on a Friday for a CT scan only to see your Oncologist on the Monday because the fear almost completely engulfed me! I am going for a biopsy and will then start Chemo and radiotherapy again!

    You are so right………everyday is precious and I thank God everyday!

    Kind regards


    • Jane, I’m sorry that you are facing progression (darn Friday 13th). Hopefully chemo and radiotherapy will kick the cancer back to the curb again. I have moments when the fear gets the best of me as well. (hugs)


  6. i am writing to you on behalf of my young cousin battling stage 4 lung cancer. i stumbled upon your page and so happy to read a decade later youre both still here… and advocating.

  7. Linnea, I have read your blog a few times since I was diagnosed with stage 4 lung cancer Nov 8, 2013. I also have the ALK gene mutation. I started taking Xalkori in Feb 2014. I have had only a few mild side effects… very lucky. My cancer started in my right lung and spread to lymph nodes, liver and bones. The only remaining tumor is in my lung. They did recently see a new spot on pelvic bone but they used radiation to get rid of it.

    I am 66 now and I am just thankful for every day. I’m able to live my life without dwelling on my odds of living until I’m 90. It helps to be 66 and have grown children. Worry will just ruin whatever time I do have left. When Xalkori fails to work, there are other options now and no one knows what the future holds. I enjoy every day.

    Thank you for having this forum for information and encouragement.

    • Cathy, it is good to be content with what we have right now but the encouraging news is that A. you responded to Xalkori (yea!) and B. there are lots of options now for those of us who are ALK+. Best of luck and thank you for commenting!


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