Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.
Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.
I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.
Linnea and Bill. Connected 🙂
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.
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.
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.
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!
On this Valentines day, 2016—I would like to send a love letter to everyone. Absolutely EVERYONE.
Why? Well, because I love people. And I mean that from the bottom of my heart.
I know a lot of folks who feel dogs might be better than us humans, but not me. Dogs are great but people are my favorite animals of all. Nothing is more interesting to me than other people.
That doesn’t mean I turn a blind eye to the fact that we, as a species, do a lot of shitty things. To the planet, other creatures and each other.
The thing is, I believe in us. People are capable of incredible empathy, kindness, generosity, grace. We can be so smart, creative and industrious. Brave, courageous, strong and tender. Altruistic. Most of us care deeply about each other, and that is perhaps our greatest ability of all—love.
After reading the post about losing my friend Ginger, another friend of mine commented that ‘her long time in remission has to be a triumph of its own’. Well yes, absolutely. And it made me realize that I left out one of the most remarkable aspects of Ginger’s story. Just prior to her diagnosis, Ginger, recently divorced, had travelled to Israel and met the man who would become her second husband. Post diagnosis, she experienced almost a second lifetime, one very full of joy. When I met her she was recently widowed and embarking on yet another chapter.
Ginger’s life was inspirational/aspirational for me. And although the details differed, she provided me with a role model of what could be if I only had the courage to really go for it.
I’m not talking about cancer here, but rather my divorce. It’s not an experience that I’ve shared very much about but it was hands down one of the bravest things I’ve ever done.
When I tell people I am recently divorced they say they are sorry. Well, I’m not. It requires a lot of hope, faith and optimism to start over when you have cancer, but it was something that needed to happen and honestly, if I was strong enough to do this, I can do anything.
I gained so much from my friendship with Ginger and I shall miss her so, so much. My last email from her was a month ago and it sort of captures the essence of our friendship—a little bit of cancer, a whole lot of caring:
I saw you all over the Globe. Good article, but you are so much better in person! 🙂
Good luck to Peter!
I went in for chemo yesterday and they sent me home- too weakened. But I will try to build myself up again. It’s partially the blasted antibiotic until next Sat. Just went down on the bicycle. Have to try.
Have you tried a dating site yet?
Much love back, g