Monthly Archives: April 2016

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!

Savannah!

I have a niece who is enrolled at Savannah College of Art and Design and her family credits me with alerting them to the existence of SCAD in the first place–happy to be of service when I can. My niece, Zola, is wrapping up her third year at SCAD and just came home from Lacoste, France and a semester abroad. Fun for me as I too took a semester abroad in Lacoste back in 1979 when the program was affiliated with Sarah Lawrence.

Anyway, as an extravagant way of saying thanks for my tip off per SCAD, my sister Bink took me to Savannah for a long weekend of touring the city and hanging out with Zola.

It was a perfect trip all the way around. Bink got us an RBO in a beautiful Victorian adjacent to a park and within walking distance of everything. And walk we did. Savannah is laid out in the most unique grid fashion, with one block sized park after another. These little parks are filled with aged oaks dripping with Spanish moss and each has a monument in the center. And the parks themselves are ringed with charming homes and churches; Bink pointed out that Savannah wasn’t razed by fire during the Civil War and in fact was presented by General Sherman (impressed by its beauty) to President Lincoln as a Christmas Gift.

Of course we toured the grounds of SCAD as well and I can only say wow—art school has come a long way. Plush, luxurious, well equipped and an all around creative hive, it’s the sort of place that makes anyone want to go (back) to art school. And Zola is kicking butt in her major, advertising.

I was introduced to some fine southern delicacies along the way (we ate so well). Grits, fried corn, collard greens (which I liked so much I requested a second serving for dessert) and the most beautiful little macaroons. One unexpected highlight of the trip was a ride with an uber driver her told us about going on a cruise where they had a $10,000 prize for karaoke, and her disappointment that she’d not signed up. My sister asked her if she had a good voice and she said ‘pretty good’. We bantered a bit more and the uber driver said something about how she ought to sing to us. We thought she was kidding until she said ‘well I best get to it’, and broke into the most gorgeous rendition of Amazing Grace. This little tiny lady driving an uber while simultaneously belting out a hymn. It was magical. As was my entire trip. Thank you Bink, Zola and family! xo

Eleven beautiful and breathtaking years

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And counting. I’ve been so busy LIVING that I have neglected to note that we just zipped on past the eleven year anniversary of my diagnosis with lung cancer. That’s right–ELEVEN BEAUTIFUL AND BREATHTAKING YEARS that I didn’t think I was going to have.

Ever mindful of what a miracle waking up is, I continue to marvel at the fact that I AM ALIVE. Today, this day–and maybe tomorrow too. And you know what? It never gets old. The good, the bad and the ugly alike–it is a privilege to be here and something I shall never take for granted (and if you are reading this, neither should you).

Several days into year twelve (!), I vow to honor the memory of those who had to leave this party far too soon. Your departures hurt and anger–but death cannot tear apart the connections we made in life.

My personal goal going forward? To shift my focus from surviving to thriving. If you run the numbers, I’ve now known I had lung cancer for almost 1/5 of my lifetime–much of that lived on hold.

No longer. It’s full throttle from here on out as I plan to see and experience all that I can possibly cram into this life I call mine. To adventure!

A beautiful weekend away from it all

Sometimes you just need to get away and away is absolutely where I got to last weekend. Forever friend Melinda and I decamped to NYC for thirty-six hours of culture and inspiration. After checking into our amazing hotel in Times Square (The Chatwal–I really could have hung out in the sparkly bathroom with the heated toilet seat a little while longer), we took a cab over to the Metropolitan Opera House, where we had tickets for Donizetti’s L’Elisir D’Amore. Our evening began with dinner at The Grand Tier Restaurant with seats overlooking the winding staircase so that we could people watch to our heart’s content. Our meals were delicious; grilled octopus and duck liver mousse followed by halibut and salmon with trout roe.

First two courses finished and dessert ordered, we found our seats just before the curtain rose. I was entranced—a visual and auditory spectacle all the way around. At the intermission we returned to the Grand Tier for espressos and a baked alaska and chocolate mousse. Twenty minutes later we were back in our seats for the final acts. One of my personal highlights was the tremendous applause received by the tenor playing Nemorino, Mario Chang, at the conclusion of ‘una furtive lagrima‘ (follow link for bizarre/humorous interpretation), the romanza from act 2, scene 8. The following morning we learned that this had been Mario Chang’s premier as Nemorino and that he hails from Guatemala. At any rate, he was much moved by the applause and cheers (bravo!) and it felt like both a personal triumph (for Mario) and one for those of us in the audience as well—that we had been witness to such artistry.

Anyway, all good operas must come to an end and we finished our evening with a quick nightcap (still of the non-alcoholic variety pour moi) in the bar back at the hotel. I was sorry that it was so late as I could have spent several hours reading magazines while snuggled under the voluminous duvet. However, we had more scheduled fun early the next morning.

And that would be….backstage at the Met! What a way to round out my first opera experience. Going backstage was sort of like seeing the inner workings of an automaton. The sheer magnitude of it all! A highly recommended addition to a live performance.

Post tour we caught yet another cab over to the Guggenheim where we had lunch before taking in the Peter Fischli/David Weiss show, ‘How to Work Better.’ Whimsical but also provocative, this collaboration of two Swiss artists is absolutely delightful. It was a bonus when a side gallery revealed several paintings from one of my personal favorites, Kandinsky.

Have I mentioned that this was my first opera ever? And a very special gift from Melinda and her husband Kihan. Also, I had not been in an art museum in New York City since my teens, a situation that required rectifying. Thank you dear friends–it was oh so fun and absolutely magical!

 

Goodbye to a beautiful friend

Anja Stegen

Anja Stegen

When my son August and I travelled to Sweden in 2010, we visited with my pal Anja, also a lung cancer patient, and her husband Ingo and son Otto. Prior to that visit I had only known Anja online, but the two of us clicked like old friends. In the years since we have been in touch with our last communication on February 1. She told me she would be having surgery for a brain met. Two weeks later Ingo sent an email post surgery which I read as upbeat. The past few days Anja has been much on my mind and it has been my intention to contact Ingo to see how she was but today I received an email that she had passed away.

I am shocked and sad and sorry that I was not more attentive–somehow I thought we had more time; lots of time. By now I should understand how quickly things can change with this disease.

My heart breaks for Ingo and Otto, who have lost a loving wife and mom. Rest in peace sweet Anja. We will miss your good, strong hugs.