Tuesday, May 5, 2009

Ms. Smith Goes to Washington

Today was one of the best and toughest days of my life. I had the opportunity to join the Lung Cancer Alliance and over 60 other advocates in meetings on the Hill. We were there to gather support for the Lung Cancer Mortality Reduction Act which aims to develop an integrated plan that addresses prevention, early detection and research for lung cancer. You may remember Dan making a visit to Senator Mikulski's (D-MD) office late last year on the same issue. If you need a refresher, you can find more info and instructions on how to contact your state representatives here http://capwiz.com/lungcanceralliance/issues/alert/?alertid=13227571&PROCESS=Take+Action

My visits took me to meet with the staffs of Senator Cardin (D-MD), Senator Mikulsi (D-MD), Rep Van Hollen (D-MD), Senator Cornyn (R-TX) and Senator Specter (D-PA!). I was there with LCA staff members, lung cancer survivors and those like myself who have been affected by the disease. On the one hand- it was pretty cool. Pretty much the best field trip to DC that I've taken, and very powerful to be so close to the legislative process. It felt good to be an American.

Of course, the reason why I was there was the bittersweet part. I was very affected by the stories of the people I met. A 22-year old lung cancer survivor with a family history whose mother had to beg for a CT to get her to be properly diagnosed. A woman who lost her best friend 60 days after diagnosis, and who moved her friend in to care for her. There were several 7, 8, 9 year survivors who were lucky in that they were accidentally diagnosed and caught early. And then there was Jerry, father of 2 who lives right down the road from me. He'd already survived lymphoma twice in his late teens and early twenties. He lost his mother and his uncle to lung cancer, and is now battling it himself, stage IV and on Alimta, the same drug Dan was on for so long. He was also a sectionmate of Obama's at Harvard Law. Jerry recounted the irony of how Obama used the break between classes to debate politics and grab a smoke, while he had no interest in politics, yet found himself on the Hill today as a non-smoker asking politicians to solve the lung cancer problem.

I initially took comfort in being able to speak the same language as these folks. I know their doctors and nurses at Hopkins. I know the side effects of all the drugs they are on. I was so happy for Jerry that Alimta was working. I chatted openly about stage IV lung cancer. But it was heartbreakingly sad to know that, unless their cancers were caught early, many of these survivors are on the same path as Dan. Lining up one drug after another, hoping for one to work for a couple of years before throwing something else at the disease. But knowing that, even if they lived 5 years, it was highly unlikely it would ever be cancer or treatment-free, and it would not result in a cure.

I wrote awhile back about the hierarchy of cancer. I don't think that there should be one, but after spending a couple of days with LCA, I was reminded that there is. I can post all the statistics, go into the causes and arguements... there is no good reason for the way we treat lung cancer patients. More than 180,000 people are diagnosed every year, and 160,000 die each year. It kills more people that breast, prostrate, colon, liver & melanoma cancers- COMBINED combined. It's like a jumbo jet crashing every day. Survival rates haven't improved in 30 years. And yet, we invest less than 1/10 of cancer research dollars in our #1 cancer killer. (http://www.lungcanceralliance.org/facing/facts.html)

When you're living with the disease every day, you cannot think of the enormity of the what you're facing. You manage each side effect that arises. If you were diagnosed with breast cancer, you'd be welcomed into a community of passionate survivors. When you're diagnosed with lung cancer, you're looking for anyone that has actually survived the disease. We can't mobilize a race of 50,000 survivors in colorful t-shirts. Because no one is surviving.

I'm not going into the reasons why this has happened. We need to move forward, and keep asking for help. We know that people get lung cancer who don't smoke or quit 20-30 years ago (60% of all new cases). Yet, we don't have any way of testing people, and without early detection, you cannot survive this disease. I think I was lulled into believing that Dan's diagnosis was a fluke- it just doesn't happen. But it does, and his family should have a way to get tested!!!!

So today was very much about moving forward, carrying on for Dan. Literally walking where he walked, speaking to the same people he spoke to in December and wearing a yellow "Lung Cancer Sucks" t-shirt under my suit coat. I told his story, with my heart wide open, to strangers. I shed a couple of tears on Capitol Hill, and if that is what it takes, so be it. Because what we're offering people with lung cancer is crap. Dan had the BEST medical care. And for that, he endured around 50 cycles of chemo, radiation, two surgeries, another major hospitilization and every side effect imagineable. He took all they had to offer, and it wasn't even close to curing him. But he was considered lucky- he lived almost 4 years.

Dan surpassed our expectations of a survivor, and in many ways, made his story seem normal. It is easy to sometimes forget he had lung cancer because he focused more on surviving than cancer itself. He had no choice to hope and believe in miracles, because that was the best shot he had. It's just unacceptable. I remember at one point feeling jealous when learning that another lung cancer survivor, my friend's husband, had his lung removed because Dan couldn't. That is just insane!

I really feel blessed that Dan left this path for me to follow. His friends at LCA are now becoming my friends, and I have already found comfort in others who believe we need a change. Yes, I am bummed that I didn't get to meet any of the Senators or Reps (except Arlen Specter when he popped in). But I don't think it's the last time I'll be there. While I miss Dan, I mostly saddened by the mere fact that he lost his life. I don't feel bad for myself that he left me, but more that he had to go through what he did. It weighs heavy on my heart. We have a long way to go before we move the lung cancer mountain, but that isn't a reason not to try.

One of Dan's favorite quotes-

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Mead

Who knew I'd turn out to be an idealist!!!!

PS- I was most upset today when I realized the parking garage attendant ate the Peppermint Patty treat I had saved for myself. Who does that?????

Oh, I made sure to get a Dan-inspired picture at Senator Mikulski's office. Yes- it was rainy in DC today. Hence the crazy hair! The other guy in the pic is my new buddy Jerry.


Patrice said...

WOW Meg--what an amazing and inspirational day! Your words insire me and I keep thinking about when Danny said "don't just want to do something-get up and JUST DO IT" You are DOING just that--throwing your whole self in to the fight against cancer and we need to follow both your and Danny's lead and each do our part.

Anonymous said...

It sounds like it was quite a day. Thanks for the contact information. There was a long article about lung cancer in the NYTimes last week but I don't recall that the proposed legislation was mentioned, so I'll pass it on to other concerned folks here in NY.

One thing the Times article did mention, though, is very similar to your remarks about hierarchy although it didn't use that term. You are right that lung cancer research doesn't get the attention or the funding it should. I tend to think of it less in stratification terms, but more in terms of the underlying issues of research and health care funding generally. Maybe we're both right. No rational health care system should be so driven by political machinations the way ours is.


Anonymous said...

That is awesome that you got to keep Dan's legacy going in DC. Those stats are amazing and ones that I never knew. I hope that those stats of lung cancer will move in the right direction, and I am sure they will with all your efforts.


Anonymous said...

Meg, I am constantly amazed at your strength, courage & perspective. It's amazing to me how strong you and Dan were as a team and you seem to have gotten all of his strength to carry on this fight. I've never met you but I am in awe of you.

Brooke said...

Meg I don't think your hair was crazy at all in that picture.

Also, keep your status as a Maryland resident. You may not have met any Representatives or Senators in your trip but you have representation...valuable in this area when DC residents don't. Keep working at it. I know Dan is proud of you.

Anonymous said...

who eats things out of random ppl's cars???!!

Anonymous said...

Just wanted to let you know that I send the email to the NY sneators and my congressman. I also sent the information to several of my friends here asking them to also send email.


Anonymous said...


You make all of us proud and we love you for it!


Anonymous said...

go Meg!
love NMR

Anonymous said...

I can't help but think that Dan is smiling down on you. The work you are continuing to do is amazing! Also the picture of you on the Hill is awesome! Way to keep fighting! (I have my young adult cancer shirt on today and I am headed to the gym)! Also, I just wanted to let you know that Lee and I live in PA and if you need ANY help at all ahead of time in the planning of the Waeger cup or the day of please let us know. (karingeraci@hotmail.com)

God Bless!