It’s been 2 months since the Boston Marathon, and I meant to post this right after finishing, but life got ahead of me. So here it is, the story of a day that almost never happened:

Before this year, Boston was my least favorite marathon. I thought it was a boring and sometimes ugly course and the way nature designed those 26.2 miles from Hopkinton to Boston also happens to make it hard as hell.

Don’t believe anyone who tells you Boston’s not hard. It’s deceptively difficult, with a mostly downhill course for 17 miles, followed by 4 miles uphill (one of the hills named “Heartbreak” for good reason.) The final 5 miles are a gut to the finish, giving it everything you have, or dragging your body along the pavement, like I did the first time I ran the Boston Marathon, three years ago.

I told myself after that miserable experience that I would never run Boston again until and unless I could run for lung cancer, and Team Lung Love. Somewhat unexpectedly, I got my chance this year, and with such an opportunity – I couldn’t say no.

Like everyone else planning to run Boston, I started training in December, running with the Fitcorp Marathon program as I had in the past as well as CharityTeams.org, who let me tag along with them. My previous best Boston time was 4:43, but I’d gotten faster in 3 years. Last October, I did Marine Corps in 4:04. Breaking 4 hours in Boston was a definite possibility, it seemed, and so it became a goal.

So, I did every hill workout, added some track training, did tempo runs, did a 20 and a 21 mile run. I ran some of the most notoriously challenging “pre-Boston” races around, including what some people say is the most difficult race on the east coast: The Boston Prep 16-miler.

I schlepped to “the islands” to run the Martha’s Vineyard 20-miler in February, took a trip to Clinton Mass for Stu's 30K hill-fest in March, ran the Hyannis Half Marathon AND the New Bedford Half Marathon, besting my previous times in each race with 8:30 average half marathon pace. In the crazy long runs, I averaged a 9-minute mile. I was READY to break that 4-hour barrier.

Weather-wise, we couldn’t have asked for a better winter. Hardly any snow, temperatures rarely below 30, just perfect. But as we got closer to April 16th, the forecast started to look ominously hot… and predictions for 70’s, 80’s and even 90’s started to roll in.

For those of us in New England, we hadn’t run in weather hotter than 60 since October. Hadn’t felt 80 degrees since the summer. We were well trained, but we weren’t trained for heat. And heat is a runner’s kryptonite. As thousands would soon find out.

As you can imagine, after 5 months of training, waking up at 5:30am in the dead of winter, running hills before work, traveling to races on weekends, the idea of NOT running this race was almost inconceivable.

But one thing you learn as a seasoned marathoner is that you can’t control what happens on race day. You can’t control your stomach, a random leg cramp, inexplicable exhaustion, and you most certainly can’t control the weather. All you can do is your best under the circumstances.

By Sunday afternoon, with temperatures predicted for 87 degrees on Monday, I had decided that I would head to the start line and let my body decide whether I could finish or not. I re-set all expectations. It was no longer about making a time. It was about finishing in one piece.

Sunday night, the BAA sent us a terrifying email. It said if you weren’t an elite runner or didn’t meet your qualifying time in a previous marathon (I was off by 25 minutes), you should not run the marathon. I was so close to bowing out, deferring to next year. I didn’t want to let my pride, my ego, my will and stubbornness be the cause of injury, or worse. I didn’t want to be a jerk just to prove I could do it. I REALLY wanted to run the race, but I was so torn, using all of my brain cells to try and make the right decision.

 I emailed my coach at Fitcorp, who’s gotten to know me over the past few years to see what he thought. He said, “You’ll be fine. Just run a minute to minute and a half slower per mile.”

John Furey, Fitcorp Marathon Coach

 Hmm. He seemed confident. I looked at what my other runner friends were saying on Facebook and it seemed like everyone was going ahead, no questions asked.

Everyone seemed unfazed the day before.

 


Well, if they’re doing it…

 I went to carb load at Paolo’s Restaurant, even though I wasn’t sure I was going to run.

The first thing I saw was a table of Charlestown running friends from Revolutionary Running Club, two of whom coach charity teams. I asked, “Are you guys running?” And they all said “Hell yeah!”

 I had asked God to give me a sign, and this seemed to be it. I was running the race.

Next, I had to decorate the back of my shirt. I had promised 30 people that I would run in honor or memory of them or a loved one and I would add their name to my shirt. I’ve done it before, but this time, it was a logistical nightmare. I won’t bore you with the details, but I ended up finally figuring it out at 10pm the night before the race, after literally spending a day and a half wrestling with computers and printers, etc.

It's not pretty, but I got everyone's name on the shirt.

 Race morning, I woke up rested and ready, despite the drama – and so excited. Unlike most marathons, where I’ve had to travel, I was in my own house – and even took the same bus I take to work every day in order to get to Boston Common, where the official buses load up for the to drive to Hopkinton. Being a point-to-point course, they bus everyone out to the start line and we run back to Boston.

Our glamorous chariots await

There were hundreds of yellow school buses and thousands of runners buzzing with excitement, nervousness, anticipation. Last time, there was a sense of competitive smugness mixed with that nervousness, because this is one of the most elite marathons in the world. If you're there, it's because you're good. You've “qualified.” It’s only the charity runners like me who are “unqualified” and considered by some to be a nuisance. But this year, that smugness was gone, replaced with a giddy fear, a camaraderie, a “what now?" feeling shared by all, regardless of speed.

In that ominous email from the BAA, they had warned us not to look at the marathon as a race, but as an experience. That's how it felt, like we were heading to an experience. I imagine it might be how my mother felt when she headed to Woodstock back in 1969. She didn’t really know what she was getting herself in for, but she knew it was going to be something she’d never forget.

I lucked out and met a new friend right away while waiting in line for the bus. Her name is Scottie and she’s from Maryland, where in addition to running very fast marathons, she is the mother of 5 kids!  She’s super-friendly and has tons of energy, so it was a total blast sitting with her on the bus, getting to hear her whole life story and then sticking together before the start line.

My new friend Scottie, a serious powerhouse!

 


We were in different waves (she’s faster than me) so we parted ways at the wave, split , but just before that we met another runner from Nova Scotia in her 50’s who had that typical competitive spirit of a Boston qualifier. She told us that she’d run 2 hours the previous week in full winter gear (hat, gloves, everything) even though it was 70 degrees out, just to see if she could acclimate to the heat faster. Yes, we runners are a little crazy.

New friends all attempting to do the craziest thing. 

 The gun went off, and everyone was already sweating. It was probably about 77 degrees at that point, but we had our water, we had our game plans and we were ready. I knew I had to slow everything down, and I tried to keep it at an easy 9:30 pace for the first couple of miles. Looking at my time later, it sseems like I did that.

 It got warm fast – and so I needed to pour water on top of my head by mile 3. That, plus drinking a cup of Gatorade, became a ritual at every single mile. I walked the aid stations, grabbed a cup of water, cup of Gartorade and hydrated both inside and out. I think that ritual is what made it possible for me to finish.

Not me. But I did this.

I didn’t know anyone who was planning to spectate until Natick, so I really just enjoyed the first 10 miles, trying extra hard to conserve energy and stay as cool as possible. After Natick, the next milestone was Wellesley, where those famous screaming girls would give us a boost. (and maybe a kiss.) I was also looking forward to seeing the sign they made for Team Lung Love.

I requested a sign on their Facebook page and they actually did it!

 When I got there, they were indeed screaming, but I think I was distracted by trying to read all of the signs, so I didn’t enjoy the girls as much as I could have. Sadly, I never saw my sign. It must have been torn down by the thousands of runners who’d passed through before me.

The only really memorably “bad” moment of the race happened around mile 14. I was super conscious of my overall health during this race in ways I am not usually.  I never worry about things like heart problems, but given this extraordinary heat, I was paying close attention. I had checked my ego at the door and was prepared to stop if I felt weird.

I felt slightly odd at mile 14, a mild tightness in my chest, so I started to walk for a few minutes, cooled down, had some food and salt and kept going. It was only a momentary blip, but I’m glad I listened and slowed things down.

Wellesley (the town) wasn’t as interminably long as I had remembered it being before, and there were SO MANY spectators. That’s something that has to be mentioned. This time, the crowds were JUST incredible. Bigger, better, louder, stronger, more supportive, just AWESOME. Wellesley was pretty fun.

Last time, I kept looking for my Aunt Susan in Wellesley and she wasn’t able to make it. This time, I knew she wasn't there and I just enjoyed it. That’s another lesson learned. It’s not always great to have a million people that you’re looking for while running. The disappointment of not seeing them can really affect your mood. I didn’t have that many people. and the ones that were there were AWESOME, so it worked out well this year.

This is Janice cheering her friend on. She also cheered for me. :)

One unexpected and fun surprise was seeing an old high school friend Janice Cutler. She yelled my name and seeing her gave me a little lift as I was leaving Wellesley.

Just after Wellesley, somewhere around the Newton Lower Falls, I ran into a CharityTeams friend, Josefina, running ahead of me with bunny ears on. I had actually stopped to walk for a minute and was losing energy, but when I saw her, I perked up and caught up with her. That helped me get my mojo back at a key moment!

I don't know where Josefina's bunny ears went, but I was so happy to see her (and them) at mile 17.

I rounded the corner onto Comm. Ave where the Newton Hills begin and told myself that I would run those hills as long as I could but that I would walk Heartbreak no matter what. This is because, after Heartbreak, were the hardest 5 miles in the race and I wanted to be able to do them. Also, running that hill at mile 20 of that kind of race, in that kind of heat, was almost stupid.

My co-worker Kenny Renard took this. The view from the bottom of the Newton Hills. Awesome.

So… I walked heartbreak. As it turns out, about 90% of everyone else around me did too. (except one bumble bee who was photographed just ahead of me… and who I incidentally beat… ahem).

Yeah, I'm walking. But ... you know the old story of the tortoise and the bumble bee?

Again, the crowds were awesome.. no one made you feel bad for walking.. everyone was so supportive.

At the top of the hill, I started to run again, determined to finish this damn thing, knowing that the worst part from 3 years ago was ahead of me, but hoping it would be better this time. And it was. SO MUCH BETTER.

First of all, I can’t say ENOUGH about the kids at Boston College. They lifted me, carried me, for mile 21 and beyond. They were cheering like their lives depended on it, screaming and chanting my name for what felt like 10 minutes. It was UN-believable. I felt like Madonna. I really want to send them an email or something. They were that good.

These kids were AMAZING. As a BU grad, it's sacrilege to say it but, Go Eagles!

After I passed them, I felt kind of invincible. I knew those last 4 miles would be hard, but they were just 4 miles! I’ve GOT this! I must have looked strong because EVERYONE, it seemed, was screaming my name, cheering me on, from Washington Square to Coolidge Corner.

My aunts and cousin were somewhere around mile 24 and I couldn’t wait to see them. I saw my Aunt Sally who’d flown in from Atlanta first, waving her arms and yelling my name and all three of them were jumping up and down, so excited to see me. And I was so excited to see them!

From there, the only hurdle to cross was Kenmore square, where this small blip of a hill at mile 25 feels like Mt Everest. I pushed myself up that hill, knowing I had one more person waiting for me at the finish line: my Dad.

There’s a famous t-shirt you’ll see runners wearing that says “Right on Hereford. Left on Boylston.” It’s the best Boston Marathon shirt ever. That’s the last leg of Boston, and even though it would be virtually impossible to get lost, your brain cells can usually only come up with two sentences as you barrel (or lurch) towards the finish: Right on Hereford. Left on Boylston.”

The words on this shirt are emblazoned on your brain forever once you've run Boston. 

 I turned right on Hereford, and as I was approaching Boylston, there on the left was my dad, with a sign that read: “Julia. High Five”

My step-mother holding this awesome sign they made before Dad got on the train toBoston. 

 I high fived my dad, turned the corner and saw the finish line and ran in, only half believing it was actually over.

Almost done!

 The feeling at the end was the same as it always is at the end of a marathon: relief, followed by a rush of pain to the legs which lasts about 20 minutes. And then, bliss.

Made it!

I always say that marathons are a metaphor for life, and this was no exception. Just like no one expected April 16th to be the hottest day of the year so far (it’s June 19th), no one expected my mother to get lung cancer.

Just like I did everything right with my training and was ready to achieve my best time ever, so did she. Three months before diagnosis, she got a “perfect” bill of health from her primary care physician. She had quit smoking 20 years earlier. She didn’t drink, she ate healthily, was at an ideal weight, exercised regularly, volunteered often. She did everything right and she still got this disease.

My beautiful mom.

 Lung cancer does NOT discriminate. You don’t have to smoke, you don’t have to have a family history, you don’t have to work with or near pollutants. Besides, why a person gets lung cancer is irrelevant once they start their fight. It’s how they beat it that counts.

When I was faced with extra-ordinarily challenging conditions on April 16th, I used all of the tools at my disposal. I slowed down. I drank Gatorade. I used electrolytes (Power Bar gels). I poured water on my head. I dug deep. I rode the wave of a supportive crowd.

Lung cancer patients might have the will, but they don’t have the tools. Not enough of them, not by a long shot. That’s why Team Lung Love was created. We’re raising money to fund better treatments for this disease, so that when someone is hit with a diagnosis they didn’t deserve, no matter what they did before they got it, they have a fighting chance.

Lung cancer kills 160,000 Americans every year. That’s like a jumbo jet crashing every single day. We need your help in this fight. Whether you run or walk or volunteer, you CAN make a difference. Click below to learn more or email me at jgaynor@lungcanceralliance.org

 www.teamlunglove.org

Team Lung Love Recap

It's been such a tremendously busy year for me both personally and professionally that I have been terrible at keeping up with this blog. That's a good thing really, because things personal and professional have been wonderful.

In the "professional" arena, I got a new job! So now I have to change my profile from "writes about saving money" to "writes ad copy for mega galactic brands."

I LOVE my new job. It's at this super creative ad agency in Boston where I work with a slew of tremendously talented people. And kind people. They're nice to each other because they're treated well and are happy. When I first started, they apologized for being "crazed" and "stressed" but their level of craziness was so zen-like, I was happy to relax into their universe.

I'm learning a lot because its a slightly different take on what I normally do, but that's actually one of the best things about the job. I've been writing my entire professional life - since I was 20 years old - and I think if I never changed, I'd be terribly bored. So I welcome the challenge!

In my personal life, which primarily consists of lung cancer advocacy, things are also FANTASTIC. After the launch of Team Lung Love last May in Providence, we have now done THREE marathons and raised over $150,000. Not bad for a first year of a pilot program with a skeleton staff.

The video above is a slideshow of our Philly Team. It shows the people we ran for and our teammates...

This year, we are doing 3 more events - Providence in May, Marine Corps (DC)in October and Philly in November.

Everyone who joins the team seems transformed by it - by the simple act of reaching out to others to try to help change this disease and then crossing that finish line.

Running marathons to raise money for a cause isn't a new idea. But seeing people with the words "lung cancer" on their t-shirts is.

It's breathtaking to watch and I have been so proud of the ordinary people - all of them personally touched by the disease - who have accepted the challenge of Team Lung Love.

Do you want to accept the challenge?

Visit www.teamlunglove.org.

Team Lung Love!

When my mom was diagnosed with lung cancer and I learned about the shockingly low survival rates, the outrageously low funding for research, the seemingly inpenetrable stigma - I knew I HAD to do something.

I'd been running marathons with Team in Training, an endurance training program run by the Leukemia and Lymphoma Society, for years. They have a phenomenal program, and have raised over $100 million for LLS.

Lymphoma, as it happens, is one of the most curable cancers. Lung cancer is not. I thought, why can't lung cancer have something like Team in Training?

That was my dream, and now - two years after losing my mother to this awful disease, my dream has become a reality with Team Lung Love!

I've joined forces with the Lung Cancer Alliance and we've created the first ever endurance training program for LCA - with the inaugural team training to run and walk the full and half marathon on May 2nd in Providence Rhode Island.

So far, we've got a great group people who've committed to join the team - and we just opened our website to registration! But we need more!

Would you like to join us? Go to http://teamlunglove.kintera.org to learn more and sign up!

Help us save lives. Help us change hearts and minds. Get INSPIRED with us.

Join our team!

Two Years

Yesterday was the two-year anniversary of my mom’s death. Two years is a weird number. My loss is no longer an infant, weak and helpless; but it’s certainly not full-grown. It’s small enough that I can still hold it in my arms. It still needs my nurturing and attention. It probably always will. It's not ready to be left entirely on its own.

I remember when we first heard the words “lung cancer” and the idea that my mother might have the disease. It seemed impossible. Like someone had said she might have elephantitis. What? Who gets lung cancer? Certainly not my healthy mother.

More than anything, it was terrifying. I couldn’t imagine life without my mom. I mean, I literally couldn’t imagine it. I’d gone 33 years with her by my side – it was like trying to imagine life without legs and no possibility of crutches. All I felt was sheer terror.

It’s hard for me to speak for her – you can’t ever truly know what someone else is feeling when they’ve been diagnosed with cancer – but I think she also felt sheer terror - a different kind of terror.

Our terror clamped on like a steel rod and pushed us forward. Early on, though, her rod became unbolted; first with the stroke and then with the myriad of other complications that ravaged her body.

At times, I felt like I had to hold us both up, but that was just an illusion. Even though she was weak, and even when she couldn't speak, she was still Mom until the very end. I still had her until she took her very last breath.

The terror I felt during the initial diagnosis was fear of how I could cope without her - but also fear of whether I would forget her. So much of a person is how we perceive them. If we stop perceiving them, is that when they cease to exist?

When she took her last breath and she no longer had life, it was as if someone had turned off the electricity. Once she was no longer the vessel for so much energy, life and light, she was merely a vehicle, a body, a box.

But even though my mother was physically gone,she most definitely has not ceased to exist. Although I can't see her, touch her, smell her or hold her, she's been there for me every step of the way.

When I decided to move back to Boston and had to sell her house, it sold in a week. When I found the neighborhood I wanted to live in, her oldest friend's daughter knew someone selling a condo. When I looked for a job during the beginning of an economic downturn, I got one within weeks and it opened a lot of interesting doors - doors she would have loved.

The night before she died, I met someone who's been a source of strength and support; a patient, loving man who makes me laugh and even reminds me of her sometimes in certain ways.

I can't see her, touch her, feel her or smell her - and as anyone who's read this blog knows, I basically channel my grief into advocacy. But sometimes, out of nowhere, it hits me and I miss her so much. Sometimes, there's no one else who'd have the right words to say- no one else who'll love me unconditionally, no one else who's just like her.

But she's still there, right by my side. My grief hasn't grown up so much that it no longer needs her and she hasn't left me yet.

I still see her in so many different and unexpected ways, and yesterday was no exception.

I recently befriended a young woman through an online lung cancer support group. Her mother is only 46 years old and has advanced lung cancer. Like my mom, she has blood clots and has had some strokes.

Her daughter wrote to me and said that their oncologist had given up on her mother and that they felt hopeless. I suggested that she see my mother's doctor for a second opinion because she's one of the leading researchers into cutting edge therapies involving genetic testing of tumor mutations.

There was no guarantee that she could do something, but it was worth a shot. Better than being told your 46 year-old mother is a lost cause.

Yesterday, I got this email from the young woman:

"Dear Julia,

We went to see Dr. Sequist yesterday and we loved her! They are seeing if there is enough tissue from my mom's September biopsy to do the genetic testing, if not they will be calling her in for another biopsy next week and then we'll take it from there. If she doesn't have one of the mutations Dr. Sequist recommends Alimta as the next chemo to try.

Thank you so much!"

Her mother's first appointment with my mother's doctor was two years to the day after my mother's death.

Call me crazy, but I don't think that's a co-incidence. I'm sure that my mother is somehow part of this new journey, just as I feel her as a part of my journey and the advocacy I do. She's welcoming this new patient that I directed to her old doctor, hoping for better results for this daughter's mother two years later.

I miss you, mom. You will never, ever be forgotten. I am so glad that you are still here, that I still feel you and see you in so many miracles.

Love,
Julia

The Day We Stormed Capitol Hill

I can't believe it's taken so long for me to recap our incredible trip to DC, but that's life in the big (and busy) city!

For those of you who are thinking "What incredible trip to DC??", here's some background: I do advocacy work with the Lung Cancer Alliance, and what they do best is legislative advocacy. They work tirelessly to try and get more federal research dollars allocated towards lung cancer research. Currently, federal research funds are disproportionately directed at OTHER cancers and not lung cancer, the biggest cancer killer.

LCA invited me and my mom's sisters to travel to Washington DC in order to meet with our Congresspeople in person. Our aim was to try and convince them of the INCREDIBLE importance of co-signing onto the Lung Cancer Mortality Reduction Act, a bill that asks Congress to work together with other governmental agencies to come up with a plan - SOME kind of plan - to address lung cancer's dreadfully low survival rates - which have been stuck at less than 16% for over 40 years.

My aunts and I were part of the Massachusetts contingent,eight advocates strong who were all fired up to march up to Capitol Hill and talk turkey with our members of congress. Or something like that.

Day one, we attended a training session for those of us who'd never done this kind of face-to-face meeting before. It was led by the dynamic, compassionate and incredibly articulate Laurie Fenton, the President and CEO of Lung Cancer Alliance.

Laurie spoke to about 50 advocates assembled from states across the country, including California, Connecticut, Kentucky, North Carolina, Georgia and Washington. We heard from lung cancer survivors as young as 23 and as old as 73. We heard emotional stories from family members like me who came because they lost someone and feel like they have to do something.

That night, we got a special treat. We attended an ice skating show called Kaleidoscope at the Verizon Arena, a celebration of skating and cancer survivorship. The headliners included cancer survivors Scott Hamilton and Dorothy Hamil, as well as Olivia Newton-John.

It was thrilling for The Lung Cancer Alliance to be included among so many fantastic advocacy groups, all working to raise awareness of the different cancers. The show will be broadcast tomorrow - on Thanksgiving Day - at around 4pm on FOX- after the football game.

Day two was "showtime." We got dressed in our best Capitol Hill outfits, powered up with the free breakfast at the Embassy Suites, and met with our fellow advocates to come up with a game plan.

Since there were eight of us, we broke into two "teams" in order to make our way through the list of Representatives and Senators from Massachusetts. My team only had one actual appointment - that was with my Aunt Susan's Rep, Niki Tsongas. The rest we were just planning to ambush. Well, to call upon, unannounced.

We weren't sure what to expect. We'd been told that it was unlikely that we'd actually meet with any of the Congresspeople themselves - and we'd be lucky if their aides would even agree to see us without an appointment. Undeterred, we went ahead anyway. We thought, "We've come all the way here - it's worth a shot!"

Our first stop was actually to a Connecticut Rep because our friend Kevin Brummett was from Connecticut. Kevin lost his battle with lung cancer this spring and his widow Stephanie was with us. She wanted to pay Kevin's Congressman a visit. He wasn't in, but she left a personal note and we felt good about touching base there.

As we left the CT office, my Aunt Susan noticed offices for a South Carolina Congressman. She owns a condo down there, so we popped in to say hello. He wasn't in, but we left info and moved on.

Door number three was Representative McGovern, who covers areas including Worcester and Hopkinton. We had a connection to one of his constituents in Holliston and miraculously enough, McGovern was in his office and agreed to see us.

We had only gotten a few sentences into our "pitch" when he said "Count me in. I'll sign it." We were floored. Stephanie walked right up to his desk and thanked him,tearfully, sharing her story about how her 31-year old never-smoking husband lost his battle with lung cancer. He seemed genuinely moved - and sure enough, the next day, he signed on!

Next was Congressman Lynch, who represents South Boston, among other towns. He wasn't in, but his aide was, and she agreed to hear our stories. She shared with us that she'd lost her grandmother to lung cancer. This is what happens so often when you start talking about lung cancer. Lung cancer touches so many people, you're bound to meet someone who's been affected. This obviously wouldn't sway Rep. Lynch's decision, but it helps us talk to his aide when she has a personal connection. She gets it, even without us telling our stories. Of course we did anyway and shared with her all of the shocking statistics - and when we left the office, she promised to share our information with the Congressman and encourage him to consider co-signing legislation.

After that was MY Rep, Michael Capuano who represents most of Boston including my district in Charlestown. We knew he wouldn't be in because he's currently running for Ted Kennedy's seat in the US Senate and the election is just weeks away. We'd tried to get an appointment with him beforehand since two of us are constituents, but no luck. So, we showed up anyway. His very nice aide Jared chatted with us for a while, and then we got a chance to meet with his legislative aide who was very sympathetic and compassionate. I've since emailed the Congressman, so I hope we'll have his support!

Next it was time for a coffee break! We headed to the cafeteria in the basement which was actually kind of exciting. Congressmen and women have to eat, right? We weren't sure who we'd see, and we didn't really see anyone we knew, but it was nice to take a break and power up with some coffee and cookies.

Niki Tsongas was our next stop. We had an appointment with her health aide, and we'd heard that Niki herself might make an appearance. Her health aide was wonderful. Not only did she listen compassionately, she asked a lot of questions - great questions - which made us realize that she was seriously considering this bill.

She seemed shocked at the statistics and deeply moved by our plea. We were deep in discussion, when in walked Congresswoman Tsongas. She was very gracious and also listened intently to our stories, the statistics and the explanation of the bill.

She shared that she had actually lost her mother to lung cancer, which we hadn't known until then. Before we left, she said that the bill sounded like something she would sign, but that her team just had to review it first. Our fingers are crossed.

Feeling empowered, we went onto our next unscheduled stop - Congressman Olver, who represents the western part of the state. We met with his health aide and told her about Sara Monopoli, the sister of one of Congressman Olver's constituents. Sara lost her life at 34 to the disease - just 9 months after giving birth to her only child. His aide was incredibly compassionate and shared that she, too, had lost several members of her family to lung cancer. She said "I can't see why he wouldn't sign this bill"- and the next day, he had signed it!

On a roll, we headed down to Congressman Delahunt's office. He represents the Cape and the South Shore. I've heard he's a nice guy - and his aides were very sweet - but they were firm that without an appointment, we couldn't talk to anyone. This was the first and only time that we ran into this kind of stumbling block, so it didn't really faze us. We figured we'd talked to enough people in one day! We left our info and moved on.

We left Capitol Hill feeling elated. It was such an invigorating feeling to know that we'd spoken with people who can actually affect change. As Laurie Fenton had told us, this was "pick and shovel work" - asking Congresspeople to co-sign onto a bill, one member at a time, just for the hope that we can get it to the next step.

Pick and shovel work. Not totally glamorous. Nothing that happens overnight. But necessary work. Important work. Inspiring and invigorating work.

One legislator at a time, we'll get through to them until we've got everyone from Massachusetts - and with the work of LCA, hopefully we'll get most of the US Congress to sign on. Then, hopefully it will get it into hearings - and eventually passed as a bill so that we can finally start to see a difference in those devastating mortality rates.

Before our trip, only one Congressman from Massachusetts had signed on: Barney Frank.

After our trip, this is where we stand today: One senator from Massachusetts (Kirk) and five Congressmen (Neal, Olver, McGovern, Tierney and Frank) have all signed on.

We're still working on Capuano, Delahunt, Tsongas, Markey and Lynch. How amazing would it be if Massachusetts was the first state in the union to have all of its congresspeople sign on? It would certainly show that this state cares about lung cancer. Being one of the regions with the most exciting and innovative lung cancer research, it would make a lot of sense.

Congressmen and women, are you reading? Could you sign on?

Even if you're not a Congressperson - but you'd like to see them sign on - you can do some "pick and shovel" work yourself. Go to this site and you'll learn how to find out the email address of your Congressperson and how you can email your representative. If your rep is one of the people who co-signed, please email them to say thank you. If your rep hasn't yet signed - email him or her and tell him why it's so important to get their support. It's so crucial that our members of Congress hear from us. They listen to their constituents, so please send them a note!

And if you're not from Massachusetts, you can use that link to contact your member of Congress too.

Together, we can make a difference.

We Can't Forget The Ones We Lose

I went to an American Lung Association event last night called "An Evening in Paris" that really blew me away - in a good way. Because of the American Lung Association's history of ignoring lung cancer, I wasn't expecting to be so moved - but I was - particularly by one of the honorees.

The event was a fundraiser, but also an opportunity to honor scientists and doctors for their groundbreaking lung cancer research. As we all know, the only way that we are going to reduce the staggering mortality rates from lung cancer is from new research.

One of the doctors honored was a female cardio-thoracic surgeon from Brigham & Women's hospital - one of the few women in the world with that particular job; another was a researcher who's working on a way to determine whether or not suspicious nodules caught on CT scans are cancerous or not - which would help to further an early detection protocol.

Those researchers were inspiring, but the person who moved me the most was the doctor honored for her work with palliative care and lung cancer. Her name is Dr. Jennifer Temel, and she's one of the doctors on the front lines, dealing with real patients who die every day. I've met her several times before - the first time was two years ago when she was covering the weekend shift, filling in for my mom's doctor at MGH. She stopped in while she was "on call" and we learned that she's also my mom's neighbor's lung cancer doctor. This disease touches many, near and far.

Dr. Temel reminded us all that while we ARE making advances, the reality is that over 150,000 Americans will still die this year from lung cancer. We cannot forget the vast majority of patients for whom there is no cure and their families who are left behind to mourn.

Even at MGH, where Dr. Temel works and where they test every tumor for genetic mutations, the reality is that only a handful of people will be eligible for the latest personalized medicines based on those genetic tests. As much as she and her colleagues want new treatments to be available for everyone right now - the reality is that they aren't - and they won't be - for a while.

Palliative care is always a difficult topic to address, and it was brave of her to bring it up in a room that was all about research, hope and fundraising for a cure, but what she said is that we still need to work on helping people at the end stage of their disease. We need to help people when they die.

Sadly, the majority of lung cancer patients are diagnosed at a late stage, and for them, death is an inevitable part of their journey. As such, they should be able to leave this earth with as much dignity and as little suffering as possible.

My mom was one of those patients. Tumor testing wasn't available when my mother was at MGH and even if it had been, as a former smoker and with squamous cell NSCLC, there weren't (and still aren't) a lot of options open to patients like her. The only option for her at the time (and at one of the best hospitals in the world) was platinum-based chemotherapy - and in her case, even that wasn't an option because she got so sick so fast. My mom's case was unusually aggressive, but what wasn't (and still isn't) unusual about her case is that she was treated palliatively instead of curatively. In late stage lung cancer, all that can sometimes be done is palliative care because there simply aren't enough treatments for late stage lung cancer. Until those treatments are available, we have to treat every patient - including the ones who are going to die.

So I am so grateful to Dr. Temel and to all of the other thoracic oncologists who deal with real patients every day - real patients who die because those other options aren't available for everyone yet. I thank them for continuing to come to work every day no matter what and for continuing to do research when they're not doing their clinical work. I thank them for continuing to solider on, even when they must get discouraged in the face of so much death and tragedy.

If we all work together, someday there will be less palliative care and more curative care for lung cancer. We're not there yet - so we can't forget the ones who are left behind in the wake of all of the exciting research that we celebrate. We can't forget the ones who won't see a benefit from the research in their lifetime.

I am so glad that doctors like Dr. Temel are not forgetting those who are left behind. I am forever grateful.

Shine a Light on Lung Cancer - Boston '09

Just thought I’d share about our event in Boston last week. It was incredible!

Over 400 people packed into the Prudential Center in Boston to honor loved ones and learn about lung cancer.

Five of Boston's major cancer centers were represented, all at tables lined up next to each other including Dana Farber, Mass General Hospital, Beth Israel, Brigham & Women and Boston Medical Center.

Several lung cancer advocacy groups were at tables as well including the National Lung CancerPartnership, Lungevity, Uniting Against Lung Cancer and Upstaging Lung Cancer.

It was so phenomenal to see all of these hospitals and advocacy groups standing side by side, offering the community so much hope about lung cancer advocacy and research.

Our local ABC news anchor, Heather Unruh, whose mother is a lung cancer survivor, was an eloquent emcee, setting a tone of hope for the evening.

Our Senate President, Terese Murray, pledged to support lung cancer research and shared her personal connection with lung cancer – her best friend was diagnosed a year ago. She then read the state proclamation declaring November Lung Cancer Awareness Month.

People who were just walking by stopped to hear the speakers because they had been affected by lung cancer. One woman had lost her mother the day before the vigil, but she saw one of our signs and decided she had to come.

We had 6 speakers who shared their personal stories including Linnea Duff, a never-smoker diagnosed in her early 40’s at a late stage and who is currently 18 months into a clinical trial at MGH for her ALK-4 mutation and doing incredibly well;

Other speakers included Deidre Malloy, a 7 year, Stage IIIB NSCLC survivor, Rich Monopoli, who lost his wife Sara Thomas Monopoli less than two years ago when she was only 35 and had just given birth to their only child; Stephanie Fellingham Brumett, the wife of Kevin Brumett who was an incredible advocate and spoke out whenever he could until he succumbed to his disease last May at the age of 31.

And finally, Diane Legg, the Co-chair of Lung Cancer Alliance-Massachusetts shared her story of survival and hope as a 5-year lung cancer survivor and mother to 3 young boys.

We read out loud the names of 400 lung cancer survivors as well as those we lost to this disease, like my mother.

There were many tears shed - but also so much hope in the room as we heard from some of Boston's top doctors speak of the incredible research that's being done to help find personalized treatments for lung cancer.

It was a phenomenal way to start Lung Cancer Awareness Month in Massachusetts.

Congratulations to everyone who is doing something fabulous for lung cancer awareness month, from incredible fundraising to much-needed awareness-building and media exposure. We're not sitting back and letting lung cancer be ignored. We’re all making BIG noise about this disease.

Every little thing we do takes us closer to a cure. We ARE the lung cancer movement - and we're moving!