Does it sound strange to spend a weekend with 300 lung cancer patients and caregivers? Does it sound gloomy or frightening? It turns out that if you are a patient or caregiver, such a weekend could be a highlight of your year, one filled with hope and fellowship.
In late April, Robert and I set out on a two week trip that combined conference going with vacation. Our first stop was Burlington, VT, where we attended a day-long Lung Force Expo. This was an interesting day, filled with good information about managing one’s health with a serious lung disease and with information about the great promise of lung cancer screening. I was able to meet some fellow patients and some doctors who are relatively close to me in what is a terrific little city to visit. It also served as a warm up event for what was coming up next: the annual HOPE Summit put on by LUNGevity in Washington, DC.
We flew from Burlington to DC, thanks to a travel grant from LUNGevity that paid for my airfare and for two nights at the hotel where the conference was held. I am very grateful for this travel assistance, awarded to many first year attendees, because it made it possible for us to find out how valuable conferences can be. It was also terrific to avoid the all-day car trip that would have been necessary otherwise. Robert has been dealing with a painful knee for several months, and flying was a lot less wear and tear on our bodies.
It was heartwarming to arrive at the conference site and enjoy mutual instant recognition with many of the people I have met on the Internet since I started reaching out to the lung cancer community. The feeling of comfort grew as the three days passed. The conference organizers made sure to mix us up so that we would meet as many people as possible, and I discovered that I could sit next to anyone and enjoy a friendly, informative, supportive exchange. Lung cancer patients are a tribe, and conferences are where we gather to celebrate and support each other.
They are also where we gather to learn. In the course of three days, I attended an intensive day devoted to improving advocacy and outreach and sessions on research, nutrition, clinical trials, and story sharing. There were also some sessions for caregivers that Robert attended, though he said those sessions were much more emotionally searing than the concurrent sessions for patients and survivors.
Besides the formal sessions, there were serendipitous meetings with other attendees in the unscheduled times. Where else could we meet a couple in the bar where the man had been in the same clinical trial I was in and had had all the same side effects, plus rapid onset cataracts (which I was beginning to develop)?They emailed me the name of the doctor who had fixed his eyes, in case I needed to see a specialist in the future. Where else could I introduce myself to one of the doctors who discovered the driver mutation that I have, and enjoy a very warm and informative short conversation?
What did we look like as a group? LUNGevity had a very talented professional photographer there named Randy Elles, and he took this wonderful group picture. Both Robert and I are in this picture.
Randy Elles also took portraits of anyone who visited his photo booth, and he took this picture of Robert and me:
What was Robert’s take on these experiences? He’s been letting me be the one who digs up information, and he agreed to go with me to these conferences without being excited by the prospect of attending workshops. When I asked him, he said “I wasn’t bored.”
It turns out that there many conferences, many more than I could possibly afford to attend. A few weeks after the HOPE Summit, the Lung Cancer Alliance held a conference in Washington DC where participants got to go to Congress and advocate for increased research funding. How cool would that be? Recently, Free to Breathe held a Lung Cancer Leadership Conference in Minnesota, also focused on advocacy and including updates on research into the biology of metastasis. Then there are all of the professional conferences such as the ASCO conference held in Chicago in June, many of which are very happy to admit patient attendees (and collect an entrance fee in the process that can be pricey).
Right now I am working on the logistics of attending a different kind of conference, the Targeted Therapies in Lung Cancer Patient Forum, to be presented by CancerGrace in August. There will be no sessions on advocacy or fund raising, simply a group of oncologists getting up-to-date information to a group of patients. We have Robert’s knee surgery and my cataract surgeries to get through between now and August 20, but I am increasingly confident that I will be able to attend. I can hardly wait to get together with my tribe again - and to learn information specific to my lung cancer variant that just might extend my life.
And, I’ve estimated the cost of a return trip to the HOPE Summit next year, and I’m working it into the family budget.