Wednesday, June 30, 2010

Pancreatic Cancer Advocacy

I had an incredible, inspiring, frightening and frustrating experience last week. I went down to DC to advocate for additional funding for cancer research, and pancreatic cancer in particular. I met with my excellent Congressman (Pallone) and the aides to my two Senators. Seeing firsthand our political process at work was both exhilarating and exasperating.
It was scary to be so vividly reminded of the statistics of my disease - the five-year survival rate of 6%, the mere 40 or so survivors in a room of nearly 500 advocates, the many many tragic stories of family and friends that were taken by the disease. Sadly, the pancreatic cancer survival rate has increased minimally in the last 40 years. It is the only major cancer with survival rates that are still in the single digits. The fourth deadliest cancer receives only 2% of federal cancer funding. I am 44 with 4 year-old children who I don't want to have facing the same bleak odds in 40 years should the genetic curse prove true. Even for those blessed enough to have had the Whipple surgery (as I did), the five-year survival rate is 30%. [With absolutely no basis for this hope, I am counting on being in the 30%.]
It astounds me that several hundred people need to show up year after year, applying constant pressure, to generate the necessary support to increase funding for life-saving cancer research. And yet the funding for a new weapons system that even the military itself isn't asking for sails through with minimal scrutiny. Specifically, the Pancreatic Cancer Action Network is advocating for a $5.79 billion budget for the National Cancer Institute to support cancer research. That may sound like a lot of money but to put it into perspective…the US spent at least $150 billion on the wars in Afghanistan and Iraq last year. So, every two weeks we spend as much for wars (that somehow benefit us?) as we do in a whole year to try to improve the health of all Americans.
My frustration and anger at our national priorities becomes even more intense when I consider what it means for others. My cousin is younger than me with two kids younger than mine battling an aggressive cancer that won't quit. Very sadly, most of us know of such stories. Knowing that we have the resources to do much more and choose not to incenses me.
Some of you may know that I have very strong political convictions. (Just ask my father-in-law.) I have mostly stayed away from that stuff here. But…our tax money is being spent people! It is for us to decide on the how/where. Just like each of us does for our personal budgets at home – we make choices. For the one party to refuse to co-sponsor an increase in cancer research under the guise of being fiscally conservative is maddening. It's BS actually. There is no escaping the fact that we have been choosing elective war and subsidies for corporate America. As a result, people we love dearly are dying unnecessarily abroad and at home.
As it says in Matthew's Gospel – "For where your treasure is, there your heart will be also". My heart is with people. I went to DC because I would like to see more of our treasure directed to helping people. My experience of democracy in action was that it's not very efficient but it is the best we got. Like life, it is a beautiful and frustrating thing. It often doesn't turn out as you'd hoped. Welcome to it.

PS - I belong to the NJ Chapter of the Pancreatic Cancer Action Network. I'd like to invite you to a funds and awareness raiser on Sunday, July 18th. Join Noah, Ana, Jacquelyn & me at a Somerset Patriots (minor league baseball) game at 5:05 that night. Part of the ticket sales will go to the organization to fund advocacy and research into cures. Drop me an e-mail ( if you'd like to attend. I am hoping to have a whole crew of family and friends going. So, besides being for a good cause it should be great fun!

Sunday, June 20, 2010

Grace and Acts

What is the balance between grace and acts in our lives? In my life and cancer, I have struggled with the place of what God grants us and what I deserve in my getting sick and getting well.
We generally look at life and judge fairness on the basis of our actions. That perspective implies that we do, and ought to, get what we deserve in life. "What goes around comes around", the notion of karma, and even the Golden Rule (if stretched) are based on this principle. If you do good, you get good. On the other hand, if you don't, don't be surprised if you get a dose of your own medicine (as another saying goes). Grace, on the other hand, is an allowance - usually a positive - that we are given by God independent of whether we deserve it or not.
Since being first diagnosed, I've spent some time wondering what I did to deserve pancreatic cancer. I kept a fairly healthy diet and have been mostly veggie-eating in my adult life. I enjoyed exercise and would celebrate a beautiful day with a good run. I went for regular check-ups. Not to say that I avoided all drink and the rest but I wouldn't say that I was in any way an outlier in terms of "sins" against the body. And on the mind/emotional level, I took (what I would consider) active care of myself. I have been meditating on and off since high school. I have a few years of productive therapy under my belt. I have a wide and deep circle of supportive friends and family.
So how then is it me that is diagnosed with a relatively rare cancer (that strikes <40,000 Americans a year) at a relatively young age (further rare)? That's where the disconnect happens. What did I do to deserve this "bad" thing? Am I being punished? The "why me?" question also lingers in wondering why I am among the very few blessed to be pancreatic cancer survivors. What did I do for this second opportunity to do the good that I was intended to do?
As it turns out – life isn't fair. Nobody said it was. Least of all God. And that's exactly why we have grace. Even if you accept the premise that we can earn our way into heaven with good acts, that doesn't ensure that we'll get what we deserve (good or bad) while here on Earth. Justice in the afterlife is no assurance of a fair shake in this one.
In Christianity, the balance between the significance of grace versus acts represents a difference amongst the various denominations. It is not an insignificant distinction. Do we earn our lot in life? Does God only save those that are worthy – both in this world and the next? It is a fundamental question that we'd just as soon not have to consider.
Personally, I believe strongly in God's grace. I've always struggled with the angry and punishing God that smites sinners. God's grace is an exquisitely beautiful example of our human potential. None of us is entitled to God's grace and yet it is granted to us. It epitomizes the New Testament's compassion and hope to counterpoint the Old Testament's eye for an eye. Grace helps me to explain why I am still here.
Ultimately, I've realized that the most beautiful thing about God's grace is that it isn't on the same continuum with acts anymore. Jesus' death broke the progression. Acts are still important. Love your neighbor is still front and center. But Jesus offers us grace apart from acts, grace and love above and beyond anything we could do to deserve it. That is amazing! It challenges each of us to love unconditionally too. And…it frees me from wondering about the merits of my diseased life and cheated death.

Tuesday, June 1, 2010

The Lightness of Being (With Others)

What keeps us honest in life? Rules and laws, and the resultant consequences, do in some cases. The threat of a summons keeps me towing the 25 mph speed limit on that road into Highland Park where I've seen all too many outsiders get snagged. But what about in the less tangible areas of our lives? What keeps us honest in private? It could be religious beliefs. For some, it's the lure of heaven or threat of hell; that ever-present, omniscient God. Or maybe it is shame – embarrassment at what others might think or say. Ultimately, it is that other set of eyes (whose ever they might be) that keeps us honest with ourselves.

When Jacquelyn was away for the weekend recently – even though my primary focus was on taking care of Ana and Noah – I goofed off a bit. I stayed up late, I didn't clean up (as readily), etc. Along those same lines, I realized that it's the absence of a support structure that frees us of accountability. Sometimes folks deliberately keep others at a distance or choose not to let them in because they don't want to answer to another. Surprisingly, though, that is precisely one of the beautiful upsides that a family, friend or church community can offer us. We lose a little something when we choose not to count on another or allow others to count on us. Other people remind us of our greatest potential. To not be part of such community may seem more free – and may well be in one sense. But, ultimately, less genuine and so less full/rewarding.

I am blessed to be surrounded by a wonderful community of family and friends. I can personally attest to the profound impact that having people who care for you in your life can have. In terms of my illness, it is the people in my life – the little and grown-up ones – that buoy my spirits daily. Every time someone asks how I am doing and I can recognize by their facial expression or inflection that they mean it more than just politely – another brick is placed, strengthening my bond to them.

Think about those people you know that have hit "rock bottom". They typically keep anyone that might interfere w/what they want to do – their tendency for "badness", their freedom (basically, all that leads to their downward spiral) – at a safe distance. Unfortunately, I personally know of a couple of such instances unfolding around me right now. Saddest of all is that there is no way to help. It's tough to get in when the world of another is set up expressly to keep you out. It may feel better and safer for a while. But, ultimately, rock bottom is the place that you find yourself when you can no longer deny what those around you have been trying to warn you about all along.

It happens on a big and small scale. We all do it to ourselves at least a little bit. In the end, how deep a hole is proportional to how alone you insisted on being along the way.
Further, for those who deliberately avoid intimacy w/others, they forfeit not only the potential for support if situations get rough, but a mirror for the day-to-day reflections that help them stay honest and avoid that dark place. It is the presence of people who care for us in our lives that lifts us up. Not only that, that same support keeps us from falling too far.

I wholeheartedly believe that the fullness of life can only be experienced in the company of others. Other people and loving them as best as we can is all that life is about. From my humble perspective, the rest of it – the job, the house, the gadgets, the grudges - is just self-deception and distraction. So, let somebody love you every chance that you get.