Linnea live (I like the sound of that)

This video was recorded at the annual LUNGevity Hope Summit in 2014 and fits in perfectly with the theme of clinical trials. When I refer to starting a new trial, it is for PF-06463922 or lorlatanib (which has kept my cancer stable for 18 months now–woohoo!). I’m a little breathless and hoarse as my cancer was advancing again. I noticed immediately how fast I am speaking– markedly slowed speech has been a side effect of PF-06463922.

Slow, fast, hoarse or not, the most important message here is one of hope (thank you LUNGevity). When I mention going from cure to living longer I am talking about accepting the fact that I would never be cured. That’s a difficult concept to embrace but in order to make it even remotely acceptable I found I needed to replace cure with a potentially obtainable goal—becoming an outlier. At ten plus years (eleven, in April) I am there.

Secondly, the importance of options. When diagnosed in 2005, the first hurdle I hoped to jump was qualifying for surgery. I had nineteen lymph nodes and most of my left lung removed followed by four rounds of adjuvant chemo and yet my cancer returned almost immediately. Two strikes, and I’d been informed that treating lung cancer was basically three strikes and you’re out. My first clinical trial in 2008 was a long shot. I was thrilled beyond belief when I responded to crizotinib, but also understood that it represented a temporary fix and that there was nothing else out there once it stopped working.

Thankfully, that’s no longer true. Sadly, there aren’t viable options for everyone with lung cancer. Medical research got me to where I am today (alive!) but we can’t stop now.

8 responses to “Linnea live (I like the sound of that)

  1. I can’t find the video….??

  2. oops…found it…wow, you are incredible! definitely an outlier…as I am!!
    You always give me hope and encouragement and inspiration.!!

  3. We are alive, we are alive, we are alive!!!
    I love seeing you and hearing you sounding very alive and healthy!!!
    One thing that it important for me is I don’t take ownership of cancer.
    “The” cancer is a guest that has stayed too long. It doesn’t belong to me… a negative spirit that needs an execution or exorcism!!!
    Glad you’re doing well on the latest clinical trial, paving the way so others may live is a sacred contribution to humanity.
    Hope we can meet in person. I’d love to take you out to dinner at Blue Ginger in Wellesley or some yummy place!

    • Kyle, I agree about the guest part (and we, the unwilling hosts!). We can definitely meet. After the holidays, let’s make plans!


  4. I’ve been reading your blog for about 10 years now. I am blessed to have you as part of my world. You are amazing and ever since I read your first blog, you’ve come to hold a special place in my heart for the honesty, courage and endurance you’ve demonstrated.

    “There is always always something to be greatfull for.” I think that’s the quote? And in my book, you certainly fit into that category.

  5. I was diagnosed with Brachoalveolar adenocarcinoma stage IV month ago. I am so glad I found your blog. You have been a ray of light!

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