Tuesday, January 6, 2015

Recognizing All of God’s Children this Christmas

For Christians, Christmas is meant to be a time of potential.  For Christians, Christ came to bring hope and justice to a broken world.  Because of this, I am terribly upset by our response to the injustices that have been brought to our attention this Advent.  Many of us became aware (as if for the first time) of the racial disparities in our nation.  I recently heard that our reaction to change is a three-fold progression.  We respond by saying:  I don’t get it, I don’t like it, and I don’t like you.  This seems to be how many people I know have reacted when confronted by this new information of institutional racism in our society.  Sadly, many refuse to recognize that anything is wrong.  Then, even if there is anything wrong or any pain that might exist, we manage to deflect accountability for biased policies and practices. And yet, as Christians we are called to listen for and respond with God’s love to the pain of this damaged world.
I’ve encountered several people in my life that don’t get it – they don’t see what the problem is, or why people are getting so upset.  Also, to avoid admitting the breadth of the issue, there is a tendency to minimize the validity of claims of racism and defend on a case by case basis.  In effect, here’s why it is just for there to have been no indictment in the Michael Brown case.  Here’s why it’s okay that Eric Garner is dead.  This attitude mistakes the impetus for the protests as the only reason for the protests.  It conveniently ignores the broader trend that underlies the anger.   It ignores the overwhelming statistics about biases in the criminal justice system – which includes police responses, racial profiling, inconsistent sentencing, the explosion in our prison population, etc.    Sadder yet, it ignores the extensive and ubiquitous cry of pain and offense by a sizable portion of our brothers and sisters.  We need to ask ourselves why our first line of defense is to deny that there are any disparities.
The second disturbing response is to deny collective accountability for the effects of any institutional biases that do exist.  “I am not racist”, they’ll say.   Or - “The problems in the black community are of their own making.”  “Broken families and absentee fathers are the problem.”  Yet, we have collectively decided to jail unprecedented numbers of black men, and then not allow them to rejoin their families in public housing or even vote when they get out.  We act as if policies and practices that deliberately target those black men have nothing to do with the issues those communities face.  We are good at suggesting what “they” should do while going to great lengths to avoid seeing what we could do.  In this democracy that we take such pride in, we act as if we are not responsible for the root causes to which we contribute.  We need to ask ourselves why our second line of defense is to deny any accountability for any injustices.
I am struggling mightily with the widespread adoption of these two responses by otherwise caring and intelligent people that I know. I am wondering what motivates the concerted effort to deny a mountain of factual and anecdotal evidence of a problem.  I recognize that maintaining the status quo and denying any personal culpability is paramount for some, but I don’t know that we can afford a myopic perspective when it causes so much distress for others.  It’s too late for that.  Just as with global warming, the deliberate refusal of some to accept obvious truths is jeopardizing us all.  How much do black lives matter to you if you refuse to recognize the blatant disrespect that your neighbors are pleading with you to take note of?  I make my kids try something new to eat before they can conclude that they don’t like it.  But, we let our grown-up friends hold onto their conclusions on this issue without even trying to see the other side.  By doing so, I believe that we allow racism to continue unchallenged.
I struggle most with the Christian response to the unsettling events of the last few months.  If someone you knew came to you in obvious pain and distress, you have two choices.  You can recognize their suffering and offer the person comfort.  Or, you can question their anguish, deny their hurt and ignore their pleas for help.  We are clearly called to the former as Christians.  And yet some are clearly taking the latter response towards their brothers and sisters.   We need to ask ourselves why we are deliberately neglecting our Christian calling to love our neighbor.
I am struggling to reconcile this very un-Christian reaction from otherwise good (and often church-going) people.  I believe that we ought to encourage each other towards becoming our very best selves.  Loving our neighbor is an integral part of our best nature and can be accomplished on an individual or community level.   I think that we ought to lovingly encourage and challenge our friends and family to recognize and own the institutional racial bias in our society.   Ideally, our churches ought to challenge us to grow towards a world where every person is treated like a child of God.

Referring to apartheid in South Africa, Rev. Desmond Tutu said that - “Each person is not just to be respected but be revered as one created in God’s image.  To treat one such as if they were less than this is not just evil, which it is, it is not just painful…no, it is veritably blasphemous, for it is to spit in the face of God.”   Love and respect for all is where we are called to go – as individuals, as Christian communities and as a society.  We have a golden opportunity coming out of this Christmas season to respond to the brokenness in our neighborhoods.    We need to ask ourselves – isn’t it time we stopped spitting in the face of God?

Tuesday, September 2, 2014

YOU are the Agent of Change

It was the end of the day and we were approaching the line for the tram at Disney after the fireworks.   It was many people deep and even with Disney’s infamous efficiency, we were going to be there a little while.  Our parking lot was not that far away and Noah and I were inclined to walk it instead.  The rest of our crew preferred waiting.  I hate lines. 
At the other end of the spectrum - when I was out in LA for Pancreatic Cancer Action Network leadership training a couple of weeks ago, I was surrounded by folks that don’t want to wait.  If it ain’t happening, these are the kinds of folks that will make it happen.  It was awesome!
The Pancreatic Cancer Action Network is representative of concerned people-power pushing against the way things are to bring about the reality that they long to see.  Pan Can’s goal is to raise awareness of and maximize funding for research to double the 5-year survival rate (from its’ current measly 6%) by 2020. 
The Pancreatic Cancer Action Network represents one of three legs that support the stool upon which most change happens in this country.  Besides charities and non-governmental organizations, I see the government and faith communities as the other most significant agents of change in our society.
The direct actions of dedicated people working through NGOs and charity organizations to achieve change are similar to the responsibility placed on each of us in this democracy.  Sadly, this is a trait that we have readily relinquished in America.  We set up a system that provided a mechanism (albeit imperfect) for groups of individuals to be the change that they long for.   Very sadly, we have lazily and irresponsibly relinquished that vast potential for good by vilifying the very means to accomplish all things for ourselves – mainly owning (our role as) the government.  We have accepted the ruse of railing against the government.  We have been bamboozled into forgetting that we have been given a government of, by, and for the people.  We are conveniently forgetting that we are the government - the ones responsible for the way things are and the way things could be.
I see direct parallels between the challenges of tackling this most difficult and deadly cancer and the undermining of our American democracy.  In each case, a beautiful and lofty idea is stymied by a current of other competing intentions.
Coming under a few basic themes, here’s how I see the competing intentions of the pancreatic cancer fight and our democracy challenge:
  1. 1.     The complexity of the cancer itself (the location of the organ, the pathology of the disease, etc.), and the inherently complex problems we face as a nation - , seemingly resistant to the very best that we are able to throw at them. 
  2. 2.     Our personal and democratic health are market based.  The relatively low (but rising) incidence rate (~40,000 Americans/year) discourages for-profit Pharma from making a targeted effort to solve this most challenging cancer problem.  Similarly, the concerns of the average American are being ignored because the money spent under the guise of corporate free speech calls the shots. 
  3. 3.     Finally, the politics in this country put ideology ahead of the very real (sometimes deadly) realities of people’s lives.  Even cancer doesn’t make the cut for funding these days.  In the same way, our politics prioritize maintaining current power bases rather than addressing the very real suffering that many Americans face every day.

The passion I saw at the PanCan leadership training taught me that every competing interest can be overcome by people-power.  No problem is too complex.  Free markets need not be the only solution to our problems.  Ideology need not trump reality.  Everything is possible and we are just the folks to do it.
Although maybe a subset of the charity and NGO category, faith communities function in a similar way – by rallying people behind an idea or set of beliefs.  I set them apart because it is a particularly unique and beautiful thing when faith is seen as a verb, an action, not passive.  People of faith are responsible for many of the non-governmental hospitals, schools, social service and disaster relief agencies in our world.   On a large scale, it is groups of individuals that band together to address society’s ills and bring just relief to the neediest among us.  Catholic churches and organizations have been doing it for a long time.  Protestant denominations, Jewish synagogue groups and   Muslim organizations all do amazing good in our society.
The hunger for better exists but charities and faith-based organizations don’t appeal to everyone. In that sense, the tendency to vilify the government and so distance ourselves from the widespread and necessary good that we are called to do is so disturbing to me.  It takes out of play one of the three biggest agents of change in our society.  For some our shared nation-hood is the tie that binds.  I hate to lose even one outlet in the struggle to change this world.
Lord knows that there are many issues in this broken world for us to make progress on.  There’s no need to make excuses for the line.  Don’t wait on it either.  If you don’t see what you want, find like-minded someones and start walking.


Wednesday, June 25, 2014

Advocacy (Every )Day 2014

I am not a research oncologist. Boy do I wish I was right about now. I have enormous respect for these folks. They volunteer to attempt to solve some of the most difficult challenges of our time, plugging onward even though the chances of success are small. Those trying to crack one of the very toughest nuts, namely pancreatic cancer, are a breed apart. Whereas other research oncologists are mustering all of their energies to push a very large rock just a few inches, I see those researching pancreatic cancer trying to push that same rock up a hill one inch at a time. To be honest, I don’t know that I have the fortitude to step into that void myself, even if I had the right education and credentials. For this reason I applaud each and every one of the doctors that do.
Instead I wonder about what CAN I do? Thank God - we live in an absolutely amazing and maddening country.
I just returned from my fourth Pancreatic cancer Advocacy Day in Washington D. C It is an annual event where folks from across the nation come to D.C. to urge Congress to take action in the fight against pancreatic cancer. The push during my first couple of years of attending was to get a bill passed that would put a plan in place and increase the research dollars that the National cancer Institute (a branch of the National Institute of Health) devotes to pancreatic cancer. “When the Recalcitrant Cancer Research Act was signed into law in January 2013, it was the culmination of five years of effort by the Pancreatic Cancer Action Network’s passionate advocates and volunteers—who sent 76,000 emails, made 14,000 calls to Congress and participated in 1,500 meetings.” Then came sequestration and the promised funds have never materialized. The fight in the years since has been to restore the planned funds.
The problem is that there is no early detection for pancreatic cancer – ala a mammogram or colonoscopy for breast and colon cancers. For most people diagnosed, like my Papa, diagnosis is a death sentence because it is already too late to do much about it. Which brings up the second problem – few treatment options (besides the Whipple surgery that I was able to have) that can save the life of a pancreatic cancer patient. The 5-year survival rate is an anemic 6% and has barely budged in the past 40 years. Survival rates for most cancers are, thankfully, increasing but while the incidence rate for pancreatic cancer is increasing survival rates are not appreciably. For this reason, pancreatic cancer is projected to be the second leading cancer killer of Americans by 2020. Given the potential genetic link in my family, this is an untenable situation for me and my babies.
This year, approximately 480 citizens from all 50 states and several U.S. territories came to ask Congress to make more funds available. This is an astounding show of force and the sea of purple walking the halls of Congress is a sight to behold. For me, seeing survivors from across the country year after year inspires hope. But hearing the stories of loved ones lives cut suddenly short by the tragedy of this disease is heart-wrenching. D.C. in all of its grandeur makes me proud to be an American and the opportunity to meet with my Senators and Representatives is a testament to the democratic ideals that our Founding Fathers intended for us. It is awesome. Democracy is not (only) about availing oneself of the right to vote every year or four. It is about bringing about the change in this nation that you desire by expressing yourself on the other 364 days of the year to the leaders we’ve elected to represent us.
There are two main arguments that our representatives offer against additional funding for research into the deadliest cancers. They are (1) that we can’t afford it, and (2) our government is already too large and should not be involved in this activity.
In my mind, both of these are purely ideological. The first argument denies the fact that Congress is making spending decisions like this every day. It is, after all, exactly what our elected leaders are paid to do. Besides, the “ask” for cancer research is negligible compared to so much else. If I understand the argument, we can afford tax cuts for corporations and those who are already wealthy in this country but not to help save lives and avoid suffering for all Americans. It is simply a matter of our priorities. The second argument denies the ample evidence that when government funds basic research, cancer survival rates increase (see breast cancer as a glorious example). We the people empower the government to the things that otherwise could not be achieved – like national defense, education, infrastructure, etc. Both lines of refusal are based on flawed logic if not outright lies. Meanwhile, people are dying. Please do not buy this bill of goods. Not for this cause that is of primary importance to me. Nor for your own cause. Advocate for yourself and those you love. Responsible citizenship means writing, calling and visiting our elected leaders. That is the beauty of this wonderful and maddening nation of ours. Embrace it!

Sunday, March 16, 2014

My Oman Odyssey

I am incredibly blessed. As if to put an exclamation point on that fact, I started the year with a two-week travel seminar to Oman (on the Arabian Peninsula). As a student at New Brunswick Theological Seminary, I went to attend lectures and meetings with Ibadi imams and scholars, engage in interfaith dialogue, meet missionaries of the American Protestant Mission in Oman, and explore the interfaith context of Oman.
My first discovery was the amazing culture, sights, people and geography of the otherwise unknown Sultanate of Oman. It is a gorgeous land! We visited the country’s historical sights – the many forts throughout the land, mosques ranging from the Sultan’s Grand Mosque in Muscat to some of the oldest mosques in Islam, and natural wonders like (the Grand Canyon equivalent at) Jebel Shams and the majestic dunes at Wahiba Sands. We stayed in the thick of Muscat (the capital), only a stone’s throw from the dazzling Mutrah Souk (bazaar). I enjoyed sunrise runs along the Corniche that runs along the shoreline of the port. We were repeatedly treated to unmatched hospitality in government offices, religious centers and homes – Omani style.
The second aspect of learning was the class presentations, discussions and exercises. Our hosts at the Al Amana center led some sessions and offered us Imams from the Ministry of Religious Affairs, Omani and U.S. government officials, and leaders of local religious communities. Several sessions of Scriptural Reasoning - where we considered particular biblical or Qur’an texts and engaged in interfaith dialogue – were increasingly stimulating and revealing.
As astounding and inspiring as the first two learning vehicles were, the third may have been the most impactful. Besides the three of us participating from NBTS, we were blessed to be accompanied on this odyssey by five exceptional Muslim students from Hartford Seminary. We had many hours together, especially in cars travelling between sights, to talk theology and ask all that we wondered about each other’s faith traditions. (My constant peppering of questions became a source of good-natured ribbing.) Witnessing their worship practices and experiencing their intentional submission to Allah day in and day out was a welcome, thought-provoking challenge to my own beliefs and spiritual discipline. Despite many months spent (cumulatively) in Muslim countries in my life, I learned more about Islam in these two weeks than in all of my years thus far.
The challenge of interfaith tolerance, dialogue and, beyond that, understanding was a focal point of the trip throughout. It is a testament to the efforts made by Sultan Qaboos and the Ministry of Religious Affairs that such religious acceptance can exist in a conservative and overwhelmingly Muslim society. The Ibadi School of Islam is unique, faithful and tolerant – with none of the extremism we sometimes see in the other, larger schools of Islam. “People of the Book” (especially) are esteemed as believers, even if they do not recognize Mohammed as a prophet. The Omani people seem to have grasped that people longing to worship God need an outlet and that offering them such opportunities is the best way to avoid extremism and societal strife. I have come to see religious exclusivity (i.e., my way is the only way) as the greatest challenge to the achievement of the ideals of religious understanding. It’s a tough nut to crack.
Our visits, presentations and discussions brought me face-to-face with a number of my long-held beliefs. Contrasting the two religions made me consider the difference between being a servant rather than a slave of God. What does submission to God really mean? I became much more acutely aware of the differences in one’s (personal?) relationship to God and the attributes of that God that get most stressed in a particular tradition. Just as there are a variety of different focus points amongst Protestant denominations in the U.S., I also enjoyed considering aspects of faith that I may downplay in my own spiritual life – like standing before God on the Day of Judgment, for instance. I also appreciated the different emphases that I encountered – like the consistent acquiescence to God’s will captured in the phrase “Insha’Allah” (God willing).
One of the most impactful visits we made was to Eloise Bosch, the surviving wife of a missionary couple that spent over 50 years of their lives providing medical care and education to the people of Oman. In thanks, the Sultan built a stunning residence on the coast for them to live out their days. Such gratitude is a testament to all that the Boschs did for the people of Oman. In a moment alone with her, I commented on the courage it must have taken to come to an unknown and undeveloped land like Oman in 1955. This humble servant responded almost matter-of-factly that there is little else one could do when called by God. It was a beautiful thing to witness.
Amen.

Monday, November 25, 2013

November Blessings

I have had an amazing stretch for the past few weeks.
I stepped into November, Pancreatic Cancer Awareness Month, by marking the milestone of 5 years since my diagnosis on Halloween, 2008. Given that the 5-year survival rate for pancreatic cancer is a paltry 6%, I feel incredibly blessed. Thank you God!
Next up was my 47th birthday. A time for celebration anytime but especially so with the full appreciation of what a gift each and every day is – much less the completion of another 365 day cycle.
The very next day I was able to run the NYC Marathon. It was a terrific celebration of my 5-year survival with my hometown city of New York. Running it with my old friend Michael was a special treat and my time of 4:09 was 15 minutes better than my last time. This dog is getting younger!
The next Sunday was the big NJ Purple Stride Walk/Run for the Pancreatic Cancer Action Network. Leading up to that there was an article in the local paper (included below), a couple of radio interviews and an NBC-TV news spot. All of which culminated in my speaking as a survivor to nearly 2,000 people who were at the event.
November has been a reaffirmation of how unbelievably blessed I am. With all of that attention, I felt incredibly loved and supported.
When I thought about it, I decided that what was most wonderful was how very special I felt. You know how there are some people that offer you such considerate attention and appreciation that every encounter is a pick-me-up pleasure? I was feeling a lot of that.
What better expression of love could there be than making someone feel uniquely and unconditionally special? I want to be that walking thanksgiving affirmation for each one of God’s children. May it be so.

Here the article from the Home News Tribune on Nov 3rd. It is a really good article even if not all of it came out just right.
HIGHLAND PARK — In mid-October five years ago, Franco Juricic was in training for the New York City Marathon. On the surface, everything seemed to be going well, but Juricic thought something wasn’t right.
“My diet was good, everything was good, but I was very in tune with my body,” said Juricic, who was 42 then. “I noticed my urine was dark. That was weird. I thought maybe I was overdoing the running. But I went to the doctor.”
Juricic’s physician did seven to 10 days worth of tests, ruling out one thing after another until Juricic realized that what was left was not good.
“I did an Internet search,” the borough resident said. “Pancreatic cancer came up. Sure enough I had a tumor blocking my bile ducts.”
Juricic faced a different kind of marathon that year — one to save his life. After the diagnosis on Halloween and his 43rd birthday in early November, Juricic underwent a Whipple procedure on Dec. 1, 2008.
The Whipple procedure, or a pancreaticoduodenectomy, is a major operation involving the pancreas, duodenum and other organs. Most commonly, it involves the removal of a segment of the stomach, the first and second portions of the duodenum, the head of the pancreas, the common bile duct and the gallbladder.
“It is a very invasive procedure, but my wife and I agreed that we will do whatever we have to do,” Juricic said. “My twins were just 2½ years old. I was lucky. It was caught early enough that it hadn’t spread and the tumor was at the head of the pancreas, which is the best place for it to be for the surgery.”
A year after his diagnosis, Juricic ran the New York City Marathon.
“I had my purple shirt on that had a sign that said ‘Happy Birthday to me’ on one side and ‘Pancreatic Cancer Survivor’ on the other,’ ” he said. “People were cheering me on and wishing me well the whole day. Runners would pat me on the shoulder or my back. I was running in tears. It was an amazing moment.”
Now reaching his five-year mark as a pancreatic cancer survivor, Juricic is taking his milestone on the road once again. He is among the tens of thousands of participants in today’s marathon.
(Page 2 of 4)

Story gets better
Years ago when Juricic ran his first marathon, he thought it would be a lark and something to tell his grandchildren. Now, the story for future generations is even better. During today’s marathon, he again will don his purple “Pancreatic Cancer Survivor” shirt and as his 48th birthday was the day before, his “Happy Birthday” sign also is in tow.
“2009 was going to be my last marathon, but I’ve been applying in secret and got in this year,” said Juricic, whose will be running in his sixth marathon. “It’s a big time commitment, and I kept thinking ‘Do I have it in me?’ But, then I thought to do it every five years for ... forever. That could be my goal.”
“I run because I did before. I run now because, against all odds, I still can,” he added. “This marathon is a celebration of that blessing.”
Most who have pancreatic cancer never see a fifth anniversary. The survival rate is only 6 percent to reach five years or more, said Todd Cohen, 36, of Edison.
The media representative and co-founder of the Northern New Jersey affiliate of the Pancreatic Center Action Network, Cohen knows all too well the statistics of pancreatic cancer. His father, Richard Cohen, died at age 59 in 2002 after a one-year battle with the disease.
“My father’s story is very much the same as many others,” Cohen said. “He had some back pain, abdominal pain. He was relatively healthy. He went for a regular checkup. Then he was diagnosed and I was telling him we would beat this. He was an anatomy and physiology professor. He knew. It was so devastating to see.”
The statistics also include Juricic’s father, Bruno Juricic, who after a diagnosis just after Father’s Day 2012, died seven weeks later in August at age 76.
“While I had the best scenario for the disease,” Juricic said, “he had the worst. And unfortunately, that’s the more typical.”
Juricic said this run will be different than the last. His father, who Juricic said was his “biggest fan and supporter” will not be there as he was in 2009. Juricic’s wife, Jacquelyn, and two children, Ana and Noah, 7, plan to trek from preselected spots in Brooklyn and Manhattan to the finish line in Central Park.
(Page 3 of 4)

“My dad was always at those spots,” he said. “I know he totally will be there.”
Raising awareness
Juricic’s celebratory 26.2 miles comes one week after the NNJ PANCAN’s PurpleLight ceremony on Oct. 27 in Edison and one week before the annual PurpleStride fundraiser on Nov. 10 at the Mack Cali Business Campus in Parsippany. Juricic participates in those events as well.
“We had a very good turnout at the PurpleLight ceremony,” said Juricic, who is registration coordinator for PurpleStride. “For me, I love to see all the volunteers and people that make it happen. I get to catch up on everyone’s stories. There are survivors there and, it is always good to see them. It is very affirming and hopeful. On the flip side, we read the names of those who passed away. It is a way for all of us to come together for a very nice remembrance. I am there for me and also for my dad. We share our sadness but also move that sadness into something else — something that can improve people’s lives.”
While pancreatic cancer was never something Cohen or Juricic would wish for themselves or those they love, they said their involvement has become a blessing.
“It gave me purpose and perspective on life,” Juricic said. “It has become one of the best things to ever happen to me. I wake up every day — 365 days a year — and I feel most blessed. Before my feet touch the ground, before I splash water on my face, I think ‘I get to be alive.’ I am thankful for every day.”
“It’s a whole different life. I knew I had to do something,” Cohen said. “We are part of a fraternity we never wanted to be part of. But, it is all for a good purpose.”
Juricic said his thankfulness for his own life is anchored by what goes on “in the bigger picture of pancreatic cancer.”
“I think to myself ‘six out of 10 people like you don’t get to be here,’ ” he said. “‘You get to be here.’ This five-year mark is what I have been going for. If I do the marathon every five years, that would be a super way to celebrate. I’m surviving. I am lucky. People with pancreatic cancer who did not survive, they didn’t do anything different. For whatever reason, I am alive.”
(Page 4 of 4)

Juricic reflected that he may be the only runner in today’s race who has gone the distance with pancreatic cancer.
“There are 35,000 people running, but when you pair it with surviving cancer, then surviving pancreatic cancer for five years, the Venn diagram shows there is a fair bet, it could be just a couple of people,” he said. “Maybe I’m the only.”
As Juricic runs, he feels it is good to be out there. He hopes his survival serves as hope to others connected to cancer.
“I know that my situation does make for a good story for others,” he said. “It’s not just about surviving, but thriving no matter where they are at.”
For Juricic, after three years of no ill effects, he has had recent bouts of pancreatitis and a surgery may be needed in the future to take care of stones in the pancreatic duct. But, he remains positive about the impact of the pancreatitis. Followup CAT scans for the cancer are now scheduled further and further apart. First they were every three months, then six months and soon, he hopes, they will be annually.
“That is scary for me,” Juricic said. “Most people have a reoccurrence of cancer in the first year. Now, I am officially five years. Five years is definitely a milestone — a marker.”
Story gets better
Years ago when Juricic ran his first marathon, he thought it would be a lark and something to tell his grandchildren. Now, the story for future generations is even better. During today’s marathon, he again will don his purple “Pancreatic Cancer Survivor” shirt and as his 48th birthday was the day before, his “Happy Birthday” sign also is in tow.
“2009 was going to be my last marathon, but I’ve been applying in secret and got in this year,” said Juricic, whose will be running in his sixth marathon. “It’s a big time commitment, and I kept thinking ‘Do I have it in me?’ But, then I thought to do it every five years for ... forever. That could be my goal.”
“I run because I did before. I run now because, against all odds, I still can,” he added. “This marathon is a celebration of that blessing.”
Most who have pancreatic cancer never see a fifth anniversary. The survival rate is only 6 percent to reach five years or more, said Todd Cohen, 36, of Edison.
The media representative and co-founder of the Northern New Jersey affiliate of the Pancreatic Center Action Network, Cohen knows all too well the statistics of pancreatic cancer. His father, Richard Cohen, died at age 59 in 2002 after a one-year battle with the disease.
“My father’s story is very much the same as many others,” Cohen said. “He had some back pain, abdominal pain. He was relatively healthy. He went for a regular checkup. Then he was diagnosed and I was telling him we would beat this. He was an anatomy and physiology professor. He knew. It was so devastating to see.”
The statistics also include Juricic’s father, Bruno Juricic, who after a diagnosis just after Father’s Day 2012, died seven weeks later in August at age 76.
“While I had the best scenario for the disease,” Juricic said, “he had the worst. And unfortunately, that’s the more typical.”
Juricic said this run will be different than the last. His father, who Juricic said was his “biggest fan and supporter” will not be there as he was in 2009. Juricic’s wife, Jacquelyn, and two children, Ana and Noah, 7, plan to trek from preselected spots in Brooklyn and Manhattan to the finish line in Central Park.
“My dad was always at those spots,” he said. “I know he totally will be there.”
Raising awareness
Juricic’s celebratory 26.2 miles comes one week after the NNJ PANCAN’s PurpleLight ceremony on Oct. 27 in Edison and one week before the annual PurpleStride fundraiser on Nov. 10 at the Mack Cali Business Campus in Parsippany. Juricic participates in those events as well.
“We had a very good turnout at the PurpleLight ceremony,” said Juricic, who is registration coordinator for PurpleStride. “For me, I love to see all the volunteers and people that make it happen. I get to catch up on everyone’s stories. There are survivors there and, it is always good to see them. It is very affirming and hopeful. On the flip side, we read the names of those who passed away. It is a way for all of us to come together for a very nice remembrance. I am there for me and also for my dad. We share our sadness but also move that sadness into something else — something that can improve people’s lives.”
While pancreatic cancer was never something Cohen or Juricic would wish for themselves or those they love, they said their involvement has become a blessing.
“It gave me purpose and perspective on life,” Juricic said. “It has become one of the best things to ever happen to me. I wake up every day — 365 days a year — and I feel most blessed. Before my feet touch the ground, before I splash water on my face, I think ‘I get to be alive.’ I am thankful for every day.”
“It’s a whole different life. I knew I had to do something,” Cohen said. “We are part of a fraternity we never wanted to be part of. But, it is all for a good purpose.”
Juricic said his thankfulness for his own life is anchored by what goes on “in the bigger picture of pancreatic cancer.”
“I think to myself ‘six out of 10 people like you don’t get to be here,’ ” he said. “‘You get to be here.’ This five-year mark is what I have been going for. If I do the marathon every five years, that would be a super way to celebrate. I’m surviving. I am lucky. People with pancreatic cancer who did not survive, they didn’t do anything different. For whatever reason, I am alive.”
Juricic reflected that he may be the only runner in today’s race who has gone the distance with pancreatic cancer.
“There are 35,000 people running, but when you pair it with surviving cancer, then surviving pancreatic cancer for five years, the Venn diagram shows there is a fair bet, it could be just a couple of people,” he said. “Maybe I’m the only.”
As Juricic runs, he feels it is good to be out there. He hopes his survival serves as hope to others connected to cancer.
“I know that my situation does make for a good story for others,” he said. “It’s not just about surviving, but thriving no matter where they are at.”
For Juricic, after three years of no ill effects, he has had recent bouts of pancreatitis and a surgery may be needed in the future to take care of stones in the pancreatic duct. But, he remains positive about the impact of the pancreatitis. Followup CAT scans for the cancer are now scheduled further and further apart. First they were every three months, then six months and soon, he hopes, they will be annually.
“That is scary for me,” Juricic said. “Most people have a reoccurrence of cancer in the first year. Now, I am officially five years. Five years is definitely a milestone — a marker.”

Sunday, September 22, 2013

God Interrupted

We tell ourselves stories of who we are. We are fathers and Christians and husbands and cancer survivors and employees and friends and Istrians and brothers and runners and Jaspers and…. The narrative threads are laid out like a jangle of highways around the hub of an existence.
We need those stories – they help to define us, to ourselves if not others. We crave their simplicity. Because of the stories, we like to think that we know what happens next – because that’s what “ought to” happen to me, the health conscious exerciser for instance. But unlike in the movies or great page-turners, we don’t much appreciate plot twists.
We maintain those stories, carefully tending and defending them against all aberrations. They are our comfort. Even when the evidence might say otherwise, we resist edits or rewrites. “I didn’t neglect the relationship. He walked out on me.” If an unfavorable fact or upsetting threat to the narrative plotline arises, we prefer to toss it aside.
Sometimes we willingly shift our stories – maybe by love and marriage or the all-consuming joy of parenthood. Other times life intrudes and we get slammed – like a cancer diagnosis or the death of a much loved one. Those are the blind injustices in life that leave your story tattered. Those times when God interrupts and rudely grabs our attention.
The major alterations to my story – those I’ve chosen as well as those forced upon me - have turned out well in the end. Which is either a testament to the adaptability (and/or self-deception) of the human spirit or a lesson to put more trust in God. Even the slams, I’ve found, offer a stunning confusion followed by a new clarity. My cancer diagnosis obviously changed my perspective on life with the recognition that I could easily not be around someday soon. Every day is precious. Relationships - our connections - are virtually all that matters in the end. It’s all about the love for me now. As best as I can.
I am adjusting to another rewrite to my story. Apparently my pancreas is much less tolerant of fatty foods and alcohol than I previously knew. I have a couple of stones in my pancreatic ducts and spent an overnight in the hospital via the ER a few weeks ago. Not a big deal but necessitating an adjustment to my story. I have to eliminate from my diet the fatty foods and alcohol that inflame my pancreas. Pizza and beer is not worth the damage that they do. The change is not just in diet but in lifestyle and, so, identity. I can still meet my friends out after work, but I won’t be the one having “a drink”. I can no longer justify my plentiful appetite as something I’ve earned by my exercise. Food and drink have gone from being sources of joy in my life to near-adversaries that I need to respect (if not fear). The alcohol will be gone and my food choices more deliberate.
I had planned on not drinking and doing more meditating from the day we returned from our Istria vacation until the NYC marathon in November. I delayed because of a knee injury which kept me from running (so why bother?). Then God interrupted by insisting on the very thing that I sought out for my well-being anyway.
One by one my self-indulgences are being stripped away. The idea of being all good all of the time – although admittedly a positive/good thing – is a rewrite for me. I’ve had to get more responsible in nearly all things as I’ve aged. The older me is updating my story all the time.

As a related aside:
In America today, we have two narratives competing for our allegiance. The one is of a nation of rugged individuals pulling themselves up in the land of opportunity where everything we do is the best in the world. The other story is a land where freedoms come with responsibility for each other and the current situation is unfair to many and there is lots of room for improvement.
As a nation, 9/11 was that kind of slam to our self-story. The financial crisis of 2008 and since has challenged our identity too. Finally, the Sandy Hook tragedy last December shattered our innocence (again). I see each of these as significant incidents where God interrupted. God tried to get our attention. In each case the response of this “Christian nation” has been far from it. We started two wars against people that had done nothing to us on 9/11. We tolerate increasing income inequality and a further erosion of the safety net for those least fortunate. We defend the rights of gun owners over the right to live for tens of thousands of innocent victims of gun violence every year. The knock at the door has come repeatedly and yet we still stubbornly stick to our story.i>

Wednesday, July 31, 2013

On a Pilgrimage

You can go back in place, if not in time. I took a fantastic pilgrimage last weekend back to a couple of my lifelong homes. For a few hours, I stepped out of my wonderful present to reach back into my ever-present yesterdays.
I slipped out of the house solo just after dawn on a Saturday morning. I drove into Manhattan for a long run doing the downtown loop that I have done so many times before. New York City, in general, is a geography that I love and associate with the very best times of my life. The space was simultaneously the same as it ever was, and profoundly different. The same could describe me, of course.
I began by running north up to about 57th St. That’s where the running path (as it was) used to end in my day. All along the waters’ edge, there was lots of beautiful parkland where there had once been empty piers. The cracked concrete coastline had given way to skate parks, tennis courts and boat launches. I then came back down and around the southern tip of Manhattan. The Freedom Tower now stands like the center of the world at the top of Fulton Street. The towers are still missing. Not replaced – there are different good things there now. Swept up in the buzz of my always home, I could not help but cross the Brooklyn Bridge too. I finished up in my old neighborhood of Tribeca. The cheese and the knish guys are still selling their treats at the Farmers Market. The office building where I earned my first post-college paycheck is now a swanky condo. There’s progress all around and it’s enough just to keep up. I am trying to grow in more ways than just getting older.
I hopped back in my timeless Civic and breezed eastward into Queens. I went to see my Papa’s tombstone, set in place, for the very first time. It was a pre-culmination. It’s been weeks of remembering what it was like a year ago today (every day) as he began his cancer spiral. In early July, I remembered the bittersweet treat of Skyping him from Virginia to see how he was doing. Throughout July we went to the oncologist with him to help understand his options and just be present. In mid-month, we decided to go out to Shelter Island one weekend, buoyed by liver enzyme numbers that were finally decreasing – the positive news that we had been hoping for. We visited him on that Friday night to watch the Olympics – just a dad and his two sons. With so many things to talk about but not wanting to believe that there wouldn’t be many more Friday nights left - things went unsaid. It turned out to be our last Friday together.
I’ve been reluctant to “go there” sometimes. My journal from this time last year has been like a travelogue of emotions that I jump into and back out of like a frigid ocean. There are so many flimsy reasons not to “go there”, like ruining my mood ahead of a day with the kids (or whatever) - if I did. On some level, I feared a debilitating sadness – not being able to get back from “there”. That’s why physical places matter so much. Going there, to that hilltop in St. Mary’s Cemetery, all by myself, allowed me to go there. The tombstone made it realer than ever, for me. My dad’s death was no longer deniable – etched in stone as it is. As I sat on the grass, utterly spent, it sent me over a good edge. It was the best cry that I’ve had in a while.
Trying, sweating, avoiding, crying and sometimes getting there.