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.
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.
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.
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, Linnea, Melissa and Kelly.
life and breath: outliving lung cancer 
Congratulations on being the Face of Hope for Lungevity. quite an honor and well deserved. You are an inspiration from afar for me and many.
I like the word “healing”. When I think of that word I have one immediate thought but the word holds many meanings. I hope you stay in the constant state of healing. Press on. Patty Watkins
Patty, Thank you. I had that immediate thought as well (as to what healing implies) and wondered if he’d misconstrued my own values/belief system, but I can live with (!) how he explained healing and have found that I really like thinking of myself in that light.
Linnea
Love your updates and hearing of this special award. No wonder you haven’t posted lately — you’ve been way too busy! Here’s to more healing.
Thank you Robin!
Linnea
Big congratulations on your award. So happy for you and proud of all you have done for those of us with lung cancer. You are a true inspiration and a role model. Thank you for your positivity and your guidance.
Stay strong.
Thank you Roni. You know I am just happy that I am able to advocate and to represent my peers; that is the true honor and privilege.
Linnea
Couldn’t think of a better person to be honoured! Congratulations. What a truly cool experience getting to visit the Lilly labs, I’m jealous 😉 Or at least the nerd on me is. I love following you because you inspire me everyday. Wishing you continued good health and many more adventures.
XO Anne Marie
Thank you Anne Marie 🙂 I wish you could have been on that tour with me! Cancer cells are not so frightening when they are sandwiched between two glass slides and some of them are actually quite beautiful. xo to you as well!
Linnea
Grand news all the way around! Your award is well deserved, and I’m delighted that lorlatinib is hanging in there for you.
Thank you Anita—this was one that meant so much to me. And I too am delighted that lorlatinib is hanging in there.
Linnea
Congratulations on your awards, awesome experiences and scan results. You are such an inspiration and beacon of hope for Jeff and I.
Thank you Robin ❤
Linnea
Sounds like an event- filled month. You deserve the honor- i have said since i first “met” you online that you give me hope every day. Thank you
Lysa–thank you!
Linnea
I stumbled on your blog in my quest for answers. I have been taking crizontinib for 7 months now and when I first spoke to my oncologist about starting it I asked “For how long?” like one usually would and was told “It has a good chance to be really effective for you. I would say an 80% chance. You will be taking it for the rest of your life.” With that statement in mind I worked through, and came up with solutions for, the side effects and carried on thinking I would be okay for a good long time. That is until last month when I was told “It will stop working. You will be lucky to be alive in 2 years.”
I am sure you can understand my shock, the feeling of betrayal (I had trusted my oncologist to be upfront with me. He always had been before. That trust is gone now.) l and my all consuming desperation to find anything that will turn 2 years into 20 for my daughter if nothing else. It is that search which brought me here to read your story and I am glad I did. You have provided the renewal of hope I needed just as it was dwindling. I don’t need this one medication to keep me alive forever. I just need to keep myself going until the next option is found.
Thank you.
I am sorry to have not responded earlier to your comment—I am finding unopened comments in my inbox. I am sorry you felt despair but I just want to reiterate that you can in fact live with your cancer, and sometimes for a very long time (I just passed twelve years). Take good care.
Linnea
Hi Linnea – My husband was recently diagnosed with lung cancer and it is stage IV. He has never smoked and has always been uber healthy. He is the same age as you. Luckily, he has the gene mutation that allows him to have a targeted treatment drug — thanks to the many who have proven it’s worth through clinical trial. We are optimistic that we will have at least 5 more years together, despite many family and friends that are already expressing condolences. I purposefully went looking for survivor stories and fell upon your blog. Thank you so much for putting your story out there. You give me hope that lung cancer survival is not limited to a “5 year” lifespan. Thank you.
Elizabeth, I just ‘found’ your comment today. I hope your husband is doing well and I apologize for the delayed response.
Linnea
How are you doing out there? Its been longer than usual since you posted. I hope all is well.
Chloe—I get behind, even in responding to comments!
Linnea