Tag Archives: cancer advocacy

Whoa

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.

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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.

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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.

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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, Linne, Melissa and Kelly.

Matt, Katie, Linnea, Melissa and Kelly.

Advocacy April

LUNG FORCE: I’ve been on a whirlwind of advocacy and it all started with a quick trip to DC with LUNG FORCE and the American Lung Association. Advocates from all fifty states were pulled together to lobby Congress to sign on to a proposed bill increasing funding to the NIH. It was a heady if all too fast experience with a surprise appearance by Miss Patti Labelle (who sang Somewhere Over the Rainbow–my favorite ever song), as well as some inspiring comments about where cancer research is heading from Dr. Francis Collins, the director of the NIH. In addition we heard from Congresswoman Nita Lowey and Senator Dick Durbin, Dr. Johnathan R. Whetstine, Harold Wimmer (CEO of the ALA) and myself—adding the patient perspective. As always, it was great to catch up with some of my lung cancer peeps and to make some new friends as well.

LUNG FORCE advocacy day

LUNG FORCE advocacy day

My friend Karen Latzka gives Dr. Francis Collins a hug

My friend Karen Latzka gives Dr. Francis Collins a hug

Me and Miss Patti Labelle

Me and Miss Patti Labelle

My friend Janet Freeman-Daily in New Orleans for the AACR SSP program

Me and my friend Janet Freeman-Daily in New Orleans for the AACR SSP program

Invitation to Cancer 101

Invitation to Cancer 101

The panel for Cancer 101

The panel for Cancer 101

The patient has a seat at the table: representing

The patient has a seat at the table: representing

AACR SSP: I found out about the AACR’s Survivor Scientist Program by chance—two days before applications were due. My friend and fellow advocate Janet Freeman (who I learned had also applied) was a trooper and at my last minute request, wrote a letter of recommendation for me.

To say I had technical difficulties from the get go is an understatement. Unable to download their application form and with no time to figure out a way around my issue, I sent in what could only be described as cut and paste. And crossed my fingers.

Weeks went by and Janet learned she had been accepted to the program but I heard nothing. Oh well—Janet would be an excellent representative for lung cancer and I figured I could apply the following year.

And then I got a phone call from a lovely woman named Karen Mills, wondering why I had not responded to the notification that I had been accepted. Long story short, it was right around this time that I became aware that quite a few of the emails I was sending out had not been answered. At first I figured it was me, that nobody liked me anymore (sure, why not). But finally I realized that it was related to my email account having been hacked. My super smart former son-in-law Jamie explained that the hackers could be selectively intercepting some of my inbox. Turns out these wiley hackers had opened another account using my name: linnea.1111@hotmail.com. NOT ME, and yet much of my mail was/is being sent to that account. It is a big hot mess that I am still trying to untangle.

But back to the SSP—I was in!

Truth is, I had no idea WHAT I was in for. The SSP takes advocacy to a whole other level and I will not be able to convey everything I took away from these few days in one post.

Held in New Orleans as part of the annual AACR (American Association of Clinical Researcher’s) convention, it was like boot camp for advocates interested in learning more (much more) about the science and policy behind cancer research. Lots of rock stars of the cancer world here, and Vice President Joe Biden shared remarks about his Cancer Moonshot at the closing event (which sadly I missed—due to an early morning flight).

Over the coming weeks I will tell you more about what I learned while in attendance (one of the mandates of participation—that you share information gleaned there with your community).

NCCR:  Next up was a congressional briefing pertaining to the National Cancer Moonshot Initiative. I again provided the patient perspective alongside a very distinguished panel (see image above). And I was positively touched that my son August’s childhood friend Jonathan Soohoo was in attendance along with my dear friend Sally. Absolutely exhilarating. Next up: Lungevity’s National Hope Summit!