Tuesday, November 6, 2012

37th Birthday

Hi all,

It's election night in America, a pretty exciting time.  Best guess is that as I type this most of you are tuned into the ongoing coverage - I can hear it in the background downstairs, and I'll head down in a bit to watch as well.

I always get excited to vote.  It's incredible that we have this right - millions around the world don't - and I love seeing everyone participate.  Today when I walked in to the polling station I was met by an older volunteer from the League of Women Voters, offering to tell me what district I was in and where in the gymnasium that voting station was setup.  A high school girl aligned me in the right line for our street, and then another retired volunteer checked me.  It really does make me proud to be an American and to have the right to participate in our electoral process, no matter the outcome.

All that excitement aside, today I didn't think much about the election.  Tomorrow is Andy's birthday - he'd be 37.  It's hard to imagine him still not here with us.  So today I thought about Andy, and tomorrow I am sure I will as well, more than usual.

I tell you what I would want - "4 more years", even 4 more months, good months with Andy.   Time for my son, step daughter to know their uncle.   Time for Nicholas to have with his father, to see Andy with his son.  Time for my parents to have with their son, time for Jen to have with her husband.  Time for all of us to have fun with Andy.


But I can't have them, so I have the memories and feelings that pop up, creep back in every once in a while.  For me, one of those memories was this morning.  Ann mentioned that she had taken Maggie to the polls in the past as we walked by parents with their children with them.  Later in the day I remembered Andy and I with my mom at a polling station in Framingham, years ago.  Mom is not the of the "tall" stature; while we were walking into the booth, a volunteer came racing over, demanding to know what we were doing... She thought we were three kids - sans parents - trying to vote, and that made Andy and I laugh.

A lot has happened recently to honor his memory.  Jeff and Sarah Brockett ran the Marine Corps Marathon in DC a few weekends ago, joining a team from the Lung Cancer Alliance to raise funds and awareness for this disease.  Its what we did last year as Team Andy - this year, through injuries and attrition, and scheduling issues, only Jeff and Sarah could participate, and they made us proud.  If you'd like to contribute to their efforts, you still can by going to Sarah's website.


November is Lung Cancer Awareness month.  LCA is hosting an event a week from tonight, Tuesday 13th November, in the Prudential Center to call attention to this disease.  I'll be participating as part of the NE chapter of LCA.  Heather Unruh of WCVB is hosting, and the Pats' TE Rob Gronkowski will be a guest of honor as well.  The informational fair starts at 630 and the vigil starts at 730. I'd love to see any and all old friends of Andy's come by if you can.

More information can be found here: Shine a Light Boston Vigil.  And if you're not in the Boston area - there are 90 vigils planned nationally this year, you might have one near you; check out the LCA Shine a Light listing.


So tomorrow, while we're all recovering from this election, have a beer or toast to Andy and wish him a happy birthday. 

Happy Birthday Andy, I love you and miss you.

Take care all.

Tim

Friday, June 15, 2012

Advocating for Andy

Hi all,

Once again, it's been awhile.  I'll be writing more in the coming weeks to catch you up on what we've been up to these past few months and some things lined up for the next few.

Its always hard for me to sit down an put my thoughts to paper.  I think of Andy, the sudden change in all of our lives that cancer caused, often - randomly.  And then when I go to write them down, their gone - fleeting, and i have a feeling of emotional deja vu - I've processed this feeling but can't adequately describe it, almost like driving out of a heavy fog into a sun.

In April, I attended LCA's National Advocacy conference in Washington DC.  It was truly amazing, to take passion for ending such a horrible disease and applying it to our legislative process.  It was also amazing to meet others who get it, understand that driving out of a heavy fog into a blazing sun.  Who have been where I am, or have just started the journey with Lung Cancer, either as a survivor, a caregiver, a professional, a family member. All ages, all colors, all religions - truly representative of the diversity in America, and representative of how indiscriminate lung cancer is.

130+ advocates from as far west as Hawaii and far east as NH (representing Andy!) gathered on a Sunday evening for three energetic, frenetic days.  On Monday we learned more about Lung Cancer, about the the Lung Cancer Alliance (LCA), dug into recent advances in Lung Cancer, got to know the Lung Cancer Mortality Reduction Act (LCMRA) and received legislative and press training for meeting with members on Congress.  On Tuesday, after a restless night, I joined my fellow advocates as we took to the Hill for a series of planned meetings and drop-ins with members of Congress.  The group broke into geographical units; I was with the New England chapter, which split into Northern and Southern, as we had so many meetings.  Tuesday night we reconvened with the full group, and discussed our days. Wednesday saw us visiting the LCA offices and then we all headed home.

So why were we there?  To advocate for the LCMRA, by telling our stories - stories about Andy, about loved ones, about ourselves from survivors.  To meet with Congressmen & Congresswomen, House Representatives, and their members of staff.  To garner attention for the LCMRA, to request their support.

The LCMRA, is a bicameral bill, introduced by Republicans and Democrats in both Houses; it calls on the Health and Human Services (HHS), Veterans Administration (VA) and Department of Defense (DoD) to coordinate on the development of a comprehensive plan to reduce the mortality by 50% by 2020. 

Lung cancer kills more than the next 4 cancers combined.  Did you know that when Andy got sick? I didn't have a clue.  And very little is being done about it.  Its been 40+ years since Congress declared War on Cancer - and the survival rate has risen from 13% to 15%.  2% after billions in research - because very very little of it went to lung cancer.

The LCMRA effectively calls for a three pronged approach - prevention, detection and treatment.  The focus to date has been on prevention - think of all of those anti-smoking campaigns we grew up with, and your natural inclination is associate lung cancer with smoking.  No doubt, smoking causes cancer.  But not all lung cancer is from smoking - smoking doesn't define Lung Cancer.

To date, there's been a single approach to Lung Cancer.  Stop smoking, stop the disease.  This stigma is wrong.  First question I get about Andy, almost every time, is did he smoke?

No.  But the more I think about it, does it matter?  80% of Lung Cancer patients either never smoked, or followed the single prong - stop smoking - and got cancer anyway.  And even if the patient did smoke, do they deserve to be forgotten?

Do we apply the same stigma to any other disease? No.  Closest approximation I can make, and other have to, is to the stigma associated to AIDS patients in the early 80's. Jennifer Windrum, of WTF? Where's the Funding for Lung Cancer, wrote this blog on Lance Armstrong's LiveStrong blog describing the stigma: http://blog.livestrong.org/2011/11/15/monster-cookies-stigma-kool-aid-the-deadliest-combo-of-all/

The LCMRA calls for detection through a low dose CT scan for the high risk population; people over 55 who have smoked an average of a pack a day for 30 years.  The dose of the scan is less than half that women receive from a mammogram, and the observational NCI trial was halted early, as those who received the CT scan (vs. X-rays) had a 20% lower rate of mortality.  Said differently, detect it earlier, and the patient has a much higher chance at survival.  More information about the screening can be found here: http://screenforlungcancer.org/

Beyond the holes it leaves in all of us when a patient dies, it has a huge financial impact.  Both in ongoing treatment, after the disease is discovered, and then in the loss of the productivity that the patient gave us through their work, their contributions to society.

Speaking of costs, an NCI study published in 2009 assigned the value of life lost to lung cancer to be in excess of $433,000,000,000 a year (!) by 2020, but that just a 4% decline in lung cancer mortality would reduce that amount by more than half.

We're worried about health care costs in the US, rightly so, and here's a way of cutting costs.  How much would this screening plan cost? About $0.75 per person across all members of covered under health insurance; current health plans allocate about $3.25 to cover mammograms, and $1.50 to cover PSA tests. 

The third prong is the treatment.  Strides are being made, scientific discoveries are being made.  The pace is slow, because the funding is so low.  Its one of the lowest funded cancers in the national budget.  And that's where progress is made - with national funding.  Increase the research funding, save lives.  Not rocket science.

The LCMRA needs more advocacy.  We're in the second year of the 113th Congress, which is about to break to go to home districts in mid Summer, and as this this is an election year, we don't expect the Congress to be very busy when the new fiscal year begins 1 October, through the elections.

So what can you do?  Contact your Representative, and Senators.  It's easy - there's a form online to do this: http://capwiz.com/lungcanceralliance/home/. And if you're up for it, I'd be happy to work with you and the LCA office to have you meet your Congressional members or staff - they work for us after all.

The full Senate bill (S.752) is available here: http://www.lungcanceralliance.org/get-involved/lung-cancer-advocacy/lung-cancer-mortality-reduction-act/senate-bill-s752.pdf.  It's interesting to read and provides a lot more detail than I have.

I've talked for a while about advocacy and legislation and I hope your still reading :).  The other big news since the last posting was the birth of my son, Ian Andrew Swan.  What an amazing journey this has already been.  Right after he was born Ann and I looked at each other in amazement, and I cried, for happiness in having him here, and sadness in not knowing this joy with Andy.  I'm tearing up now writing this.

Andy was and will always be in some way, an amazing father to Nicholas. I feel his loss for Nicholas, I try to see him as often as I can. I wish Andy was here with me so I could tell him I finally get what he was trying to tell me when his son was born.  I could see his love for Nicholas but couldn't fully comprehend the love for a child until Ian was born.  I get it Andy.

I am also so proud of my family, the way that Jen and Nicholas and my parents have formed a new family unit; it's not easy of course but its great to see and be part of.  Andy would be proud.  And I am proud of my Dad, I love seeing him with Nicholas knowing that he raised Andy and I as our dad, and now, in the cruelest of fates, he is again serving as a father figure, to his own son's son, even as he fights his own battle with cancer. 

Father's day brings mixed feelings for me.  I love my family, my wife, son and step daughter, I love my role in the family we've formed, of seeing the joy that Ian brings to Maggie Ann and I.   And yet I find as Father's day approaches that I am missing Andy and wishing Nicholas could have that time with Andy. I see Andy in Nicholas every time I am with him, its truly great seeing Nicholas interact with his little cousin who Nicholas told me "has the same middle name as me, after my Dad".  

This father's day weekend, I am heading to Philadelphia to represent our family, and Andy, at a fundraiser that a college friend of Andy's is throwing in his memory.  Sarah Evans-Brockett, who was on the Team Lung Love Marathon team last year with her husband Jeff, Andy's college roommate, is hosting The Silver Screen for Lung Cancer this Saturday night: http://thesilverscreenforlungcancer.weebly.com/index.html.  This cocktail party and auction will benefit Team Lung Love and LCA; it also promises to be an awesome event, through all of the donated auction items that Sarah has garnered. 

To all my Philly friends - if you're up for it, come out to Collegeville, I would love to see you.  And if you can't make it but still want to help - buy a ticket online ($25) and I'll match your donations dollar for dollar.

Believe it or not... I have more to tell  you about our experiences advocating on the Hill.  But its late and I need to sleep, to be ready for the road trip to Philly tomorrow.

Stay safe and be well, and Happy Fathers day to all -

Tim

Wednesday, February 8, 2012

One Year Later

Hi All,

Once again, it's been awhile. A year ago today Andy passed away, losing his fight to lung cancer. It feels like it was just yesterday and decades ago, all at the same time. A lot has changed in the past year and yet our family, our friends are still the same tight knit, loving group that we were a year ago.

Quite a few folks have checked in with me today, remembering Andy and invariably asking how I am. I am ok. Today was like any other day, get up, get ready, out the house, commute, work, home, chores and in a bit off to bed. Today we had a choice - to sit back and let the sadness of losing Andy dictate our day. Or to take it as any other day, maybe take a moment and have a beer in Andy's memory, think about the good times we had with him, the memories that he gave us. I took the second. And had a few beers with friends.

Time does heal the pain that I felt. It still catches me, Jen, Nicholas, Mom, Dad, Ann, and, I am sure, our friends every once in a while. When it catches up to me, it takes me by surprise, and I think about how I believe Andy would want us to keep on moving, keep living. It has helped and will always serve as the benchmark for what really matters, it trivializes those things in my life that before all this I would have let become big deals; now something which might have thrown me for a loop a few years ago is more manageable. When I am stuck, whether running hills or motivating through work, I think about Andy and how trivial my immediate issue is, and it makes it easier to keep moving.

His death, to me, will always be a big loss. I miss him, and always will. We have a baby coming in about four weeks, a son for Ann and I, and I know, I already tear up, not having him there to be a part of this new journey, this awesome gift to our family. I also know that some part of our son will be Andy, he and I being brothers I suspect that something will catch me and remind me of Andy as my brother, when we were younger and growing up. I hope he has Andy's wit, his creativity, his patience, his ability to drive off the tee...

I get these incredible thoughts randomly, a song, or a smell, or a conversation will trigger a memory of Andy, of the fight, of the end, of his life and friends. And then I file it away, or maybe tell a close family member about it, and let it go. As Nicholas grows, I hope that I can remember them to tell him about his dad.

Nicholas is an awesome little boy. Of course he misses Andy, and asks us about him, or just states that he misses Dad. We just celebrated his fifth birthday, and he is doing well. It does make me sad to think about him not having Andy there with him as he grows up; my Dad has stepped into his life as a strong, male, father figure and that, I know, makes Andy proud; we visit him, and Jen, and my parents as often as we can. He's gotten feisty, he likes wrangling with you, has an incredible amount of energy and like all little boys makes an incredible amount of noise; as much energy as he has and requires from my parents, I think he keeps them young. He's into legos, especially the Cars series of kits and love Star Wars - 35+ years after Andy and I were in that stage (although back then there were no Cars kits, we were into the Space and Castle kits) it makes me smile to see Nicholas enjoying the same things we did.

Today I awoke to the version of U2's "Bad/ 40/ Where the Streets Have no Name", recorded live in Boston Garden in 2001, and broadcast during the NBA All Star game half time that year. It's always had a special place for me and Andy - he was in LA, I was in Philly at the time, and I remember seeing it on TV, cutting live to Boston, to Where the Streets Have no Name, and talking to Andy about it. The song is about the end of apartheid, a dream of finding a place where your address doesn't dictate your station and opportunities in life, but for me it reminds me of Andy, and my thoughts about him being in South Africa with Jen and her family. When I hear it now it makes me hope that he is in a place where there is no pain and he is free.

Finally, thank you to Julia for bringing this video to my attention, it's really powerful in the images it provokes, and for me, the memories of last year: http://vimeo.com/34046413. The words at the introduction are particularly poignant, especially as I consider the life that Andy ran. The end of the short talks about who you ran your life with and who was with you at the end of the finish line. I am especially grateful to all of you who were with me last year, who sponsored me in the Swim Across America Boston Harbor Islands Swim, and Team Andy in the Marine Corps Marathon. All told, we had over 140 folks sponsor the 7 of us in Team Andy, to the tune of $10,736 total; in the SAA BHIS, 69 people sponsored me for a total of $6,005. That's incredible, and I believe that good will come of, through support for Lung Cancer patients and their families, advocacy for more government funded LC research, and the treatment of cancer survivors.

I will be participating in these events again this year, and would love to have any of you who are interested join me - there are different avenues to these things as well, maybe you're not interested in swimming in Boston Harbor, or run/walking a marathon, so if that's the case and you want to do something, please reach out to me, as I am sure that we can find some alternatives. Every bit helps in the fight against cancer.

I hope you can all remember Andy today, something good and pure, and that it makes you smile. I miss you brother.

Tim