A week ago yesterday, I flew to Washington DC for the Lung Cancer Alliance’s Fourth Annual Capitol Forum. First, however, I spent a few days at the home of my good friend Sally, along with her husband Rick, Daughter Ella (bella), our mutual dear friend Melinda, and a couple of cats (one of whom Ella refers to as “the ripe one”).
We ate, attended a yoga class, marveled at all the downed limbs, redecorated Sally and Rick’s home (per their request–loads of fun) and cooked and ate and drank some more. It was all over in a flash, as Melinda headed home and I to the Washington Court Hotel, where much of the forum would take place.
We were about a hundred strong; advocates and Lung Cancer Alliance staff, and following dinner, everyone attending introduced themselves and explained their personal connection to lung cancer. Most were related or close to someone battling lung cancer and in too many cases that person had passed away. There were a few survivors as well as a small number who were moved to participate through their role as caretakers. It was an emotional evening, and I headed to bed soon after.
The next morning we were up early for breakfast and an all-day information and legislative training seminar. We were also introduced to The Honorable Michael Oxley, who is a survivor of lung cancer himself.
Dinner was on our own and my dining partners included Diane Legg (Chair of the Massachusetts LCA chapter), her sister Beth, Dr. Debra Morosini, sister of the late Dana Reeves, Julia Gaynor (of Team Lung Love fame), Jennifer Windrum (founder of WTF or Where’s The Funding for Lung Cancer) and Dennis Reilly.
Tuesday morning we ‘stormed’ the capitol. We split into constituencies, and I was a member of the Massachusetts and New Hampshire crowd. It was kind of a dream team, in that several of our group were veterans of this process. Our mission was to urge our state Senators and Representatives to sponsor The Lung Cancer Mortality Reduction Act of 2011 (soon to be introduced, see 2010). In a nutshell, the bill asks that a comprehensive interagency response to reduce lung cancer mortality is established, and that 75 million dollars be allocated to that end.
It’s not an easy sell, but nor would it be possible to not be moved by the stories we related that day. In addition, the data from the U.S. National Lung Screening Trial was released in early January, and it is highly suggestive of the benefits of CT scans in screening for lung cancer.
It was an amazing day. To experience advocacy first hand was energizing, and I made many new friends. But by the conclusion of our appointments, we each felt physically and emotionally spent. See photo.
I am between my new friends Cecilia and Lorraine, and one of those empty martini glasses is mine. But the reason my face is so red and puffy is because I just couldn’t stop crying. One of those days.
The next morning we were to have another presentation , “Lung Cancer: Out of the Shadows” , but the weather messed with our plans big time. In addition, my fight home was cancelled, so I made the best of it and spent the afternoon with Julia, touring The National Portrait Gallery.
Thursday morning I caught a flight home, and the first thing I did was take a nap. Today it was a return to my regular schedule; loads and loads of laundry, trips to and from Pete’s school and the ski slope, answering emails, writing a blog, and catching my breath.
life and breath: outliving lung cancer 
Oh so good to hear – is that Cecilia from Seattle?
That tabby? Looks like the one staring over my shoulder (well, would be if he was awake!)
Stephanie, t’is. Cecilia, who I only got to hang with briefly, is amazing. You wouldn’t even know she was missing all of one lung and part of another. About that cat, it (they) are so beautiful that I asked if it was some special breed, a nubian perhaps? (not really knowing of what I spoke). Nope, just a tabby they said. What a gorgeous cat–almost ocelot like markings on its back and a dark, dark tale. Quite aloof though, likely due to the small child who does not acknowledge their catness, and carts them around like a rag doll.
Linnea
Linnea,
What an honor it was storming the capital with you this week. The courage and strength you showed telling your story over and over again was a sight to behold. As were your long legs walking all over DC with me! You’ve got energy, my dear, and I can’t wait to see more of it – and soon!
Love,
Julia
Julia, you more than kept up with my long legs (and surpassed my energy). I couldn’t have picked a better buddy for those several days, and I so glad to have gotten the chance to really get to know you better. You’re the best!
Love, Linnea
Dear Linnea:
I am out of breath just reading your emotional journey on the hill.
When lung cancer patients are going down hill is very comforting having 100+ advocates going up hill.
Thanks for the dedication, the energy and your long legs too.
From a tax payer point of view may be fair that equal money is expend in all the cancer patients.
How much do we expend for each patient death in this cancer war versus each soldier death in Iraq or Afghanistan wars?
The tobacco industry is the enemy responsible for spreading cancer and should pay more to find a cure.
Lung cancer is the leading cause of cancer death but the government, the boss, cancer choices are:
first to expend more on breast, America is obsessed with sex and breasts, some need more support than others,
second on prostate, a male sex gland,
third on colon, no comments,
last on Lung cancer, are we full of hot air?.
http://www.jokesunlimited.com/jokes/who_is_the_boss.html
Guillermo, breathless is not how I want you to be. You were there on the hill in my heart. And I agree with all of your sentiment. There is simply no reasoning with some powers that be. And yes, other body parts require our attention as well, but without our lungs, they are useless. First breath, last breath, everything else is in between. Now, for a slow, deep one (breath).
Love you pal,
Linnea
Linnea – it was great to meet you in person! I’m still amazed and inspired by you and all of the other advocates who came to DC to help the push for funding. With the collective energy you guys brought, there’s nothing we can’t accomplish! – Amy
Amy, I admire and envy you that you work on this important issue full time. It was really great to spend a few days with a collective full of positive energy toward such a mutual good. Keep it going!
Linnea
Linnea, I can’t tell you what a joy it was to meet you. This experience has changed me big time!! I am so grateful for the amazing people, like you, I can now call my friends. Keep on fighting…that’s what we’ll do. You keep that amazingly positive attitude and love for love. You inspire me!!! Many hugs. Jen
Jennifer, it was indeed amazing, and I am so happy to have met you as well (hi Leslie!). There are a lot of good people in this awful fight, and though I am always sad to have met under the circumstances that we have, I am hopeful that we can push this movement forward. Onward!
Linnea
Hi Linnea,
I believe we’ve traded a note or two this past year – I know I had meant to touch base with you. My brother Andy Swan (http://andysfightagainstcancer.blogspot.com/) was diagnosed with Stage IV last February 2010, and like you, it was a shock as he was a healthy, 34 year non-smoker. Sadly he passed away last week after 53 weeks of fighting.
I read this blog entry while he was hospitalized the past month. I’d like to be active in these types of advocacy efforts. Could you point me to a contact to discuss helping bring more attention to Lung Cancer funding?
Thank you Linnea –
Tim
Tim, I am so sorry about Andy.
There are several different organizations which have varying focuses. The Lung Cancer Alliance (there is a chapter in MA) is all about patient advocacy and going after government funding for lung cancer. If you look at the bottom right corner of my blog, I have links to several organizations that I am familiar with. I know that any one of them would appreciate a contribution of time and energy from you.
Stay in touch, and let me know if I can be of help. And again, I’m so, so sorry.
Linnea