Science and religion seem unalterably opposed in many minds: you either believe in science or you believe in religion–you can’t do both. If you accept science you have to deny faith.

And there is, for some, a bit of reality in that: if you accept evolution it is rather difficult to accept the Biblical story of creation as literal truth. The two do seem mutually exclusive at that level.

Today one of my news feeds ran a blog on science and the meaning of life. It made reference to a story 60 Minutes did a few years ago about Tom Brady, the New England Patriot  quarterback, in which he says–after four Superbowls and three wins–“There has to be more than this.”

The writer provides a link to a snippet of the interview, which I dutifully followed. On that page there were a number of other links to more extended clips of that same interview–one of which was a religious site. I was curious about how they would use it, so I followed it as well. There was nothing surprising–and nothing really out there–about how the producer handled the clip.

What amazed me was the stupidity of the comments people had written underneath. Here is a guy trying to figure it out–to really figure it out for himself–and the comments range from “He is so dumb that he can’t see God is the answer” to “He just needs that fourth ring.” The smugness on the one end to the pure materialism at the other were deeply disturbing.

Neither Jane nor I were ever particularly religious. She pursued science for most of her life not as a faith or a religion but because it offered a way of figuring out how the world and the universe actually worked. I was raised in a household where the nightly dinner conversations revolved around engineering and science as often as not. My papers and opinions owe much to my training in the scientific method.

We both subscribed to the idea first espoused by Arthur C. Clarke that advanced technology was, to one not versed in it, indistinguishable from magic. We wanted to understand the magic so we could explain it to others. And the only way to unravel the magic was through science. Religion offered us explanations couched in the language of magic but could not offer us true understanding of those things.

Do not misunderstand me: there is truth in the faiths of the world. But those truths are stated in metaphors and parables designed for other times and other places–for people who did not know about atoms or parasites or the germ theory of disease or genetics or electricity or space stations; who believed the earth was flat and that all the universe revolved around it.

Despite my wife’s lack of formal religion, she was a good person who, quite literally, sacrificed her life for her students’ futures. Even before the illness had grown out into the hideous thing it would become, she was so dedicated to her work as a teacher that she gave up weekends and vacations to grade papers, prepare lessons, and do the reading and the coursework that would keep her current as a teacher and current in the knowledge of the sciences she taught.

But she understood the meaning of life in ways few others get to comprehend. She lived a life in service to humankind. She was a woman of science–but also a woman of deep faith. That faith came from no book and no religion–but came instead from the experience of her own life.

She knew love is what really matters–not love of God–but love for others–even for your enemies.

I am missing Jane tonight more than usual. There is no good and logical reason for it. In fact, I should be in a very good state of mind.

Friday night’s Relay for Life Kick-off Dinner was an overwhelming success. We raised $4100, registered 25 teams, and completely blew our staff partner’s mind with the size and the energy of it. I read the two poems I wrote for it and reduced some appreciable fraction of the audience to tears. By any measure, the night was a success.

I had little to do with that success. The committee did all the heavy lifting: getting the donations, arranging the food, finding the volunteers to run the buffet line. Even setting up the hall ran like clockwork. I’ve worked on a lot of committees and chaired more than a few, but the people on this committee are in a league of their own.

I continued to make progress on reorganizing the house. The blinds, curtain rods, and curtains are all back in their appointed places, the plants are back in the windows, and the bedroom is getting to the point I should be able to paint it  soon.

I’ve done all the social things, received word from an old friend that she has survived her latest cancer operation and is back on her feet, and RSVPed for a number of events in the next few months. The page for the Walking with Jane Fund for NEC Education and Research at Dana-Farber is nearly ready to launch, as is the website for the NEC Research Center there. Those last two items I have had little to do with–but there should be a certain pleasure in their mere existence.

We’ve done a lot the last several months. But none of it holds off the gnawing loneliness on a night like this.

The work does not resolve the loneliness. It holds it at bay for long stretches of time. But then I look up–and there it is again. I don’t do any of this out of the belief that it will eliminate the grief. I know that is not going to happen.

I do what I do out of the belief that maybe I can help prevent someone else from losing their spouse this way–prevent them from going through the awfulness this is.

I know in the short term there is really no hope of that. People are going to continue to die from this disease. We don’t have the knowledge, we don’t have the resources necessary to get the knowledge–at least not yet. Maybe five years from now–maybe ten years from now–that will not be the case. But right now that is the reality.

But reality can be changed. We just have to work hard enough to make the new reality real.

So tonight I will let the grief wash over me. And tomorrow I will get back up and go back to the work at hand.

It is what I do. It is what we all must do if we want to see change in the world.

I have started reading The Emperor of All Maladies again the last few days. My aunt and uncle sent it to me late last spring–but I was in no state of mind to read it then. I picked it up again this fall, thinking I was ready to take it on. A friend had suggested I really needed to read it if I were going to really pursue NET because I needed to understand more about both the history and the politics of the disease.

I was wrong. The book opens with the story of a woman who is diagnosed with a particularly nasty form of leukemia. The progress of her diagnosis was so close to Jane’s–and I was just coming into the worst part of my first year of grief–that it was too difficult emotionally for me to handle. I set it aside, promising myself I would come back to it after my mind was somewhat more settled.

There will never be a perfect time for me to read the text. There will always be sections of it that will be difficult–that carry too strong an echo of what Jane and I went through. I suspect most cancer patients and lay caregivers will encounter the same difficulties. Perhaps for those in the medical profession the emotional ride will be somewhat easier–but one never knows.

But last week as I prepared for the Relay for Life Kick-Off  dinner, I returned to it thinking it might help me gain the insight I would need to write the things I needed to say that night. Part of the result of that reading are the two poems I posted here the end of last week and used at the dinner–though given the sections I had been reading you would be hard-pressed to see how those things emerged from it.

We all forget, periodically, that we are mortal. We are so caught up in the day-to-day habits of existence that we lose track of the idea we are aging. I will turn 60 in a few months, but most of the time I do not think of that number. In my mind I am still in my 30s physically. My mind is not that of a 30 year old–I have had too much experience for that. But I try to see everything as though for the first time–with that childlike sense of wonder.

Jane had  that same perspective, only more so. That was one of the things that made her sudden illness so hard for her to deal with. She was 55 when her life began to unravel–but she never saw herself as old or infirm. She was still seeking new things and learning new things within days of her death.

We all forget, periodically, that we are alive. Those same things that prevent us from remembering we are mortal often keep us from remembering to live as well. The habits of life are both seductive and addictive.

Jane was so alive in every sense of the word–so unconscious of mortality not because she forgot it was there but because she was so busy being alive to every thing and every person she encountered–that her death was that much harder for us both to bear.

And in her death I, too, for a time, have been dead–in the sense that I have become too wrapped up in grief to truly be alive to the world as I once was. But Friday night I danced again–not particularly well–and I am paying for it these last two days–but I did. And in those steps I began to feel a piece of my old self returning. And in those two poems–in “Here is Life” in particular–I began to come to myself again.

The Emperor of All Maladies is a long book. It is a story that will have difficult moments in it for me because of what I have experienced. But it is only a book. Reading is easy. It is life that is hard. But it is that difficulty that makes it worth living.

This is the companion piece to “Here is death.” I will read it tonight at the Relay for Life of Greater Fall River Kick-off Dinner. The event is at 6 p.m. at the Notre Dame Parish Hall on Eastern Avenue in Fall River. Tickets are $10 for adults, $5 for students, and children under six are admitted free. The buffet features food from many area restaurants. There will be drawings, dancing, and a slide show–a good time to be had by all.

Here is Life

Here is life—

Not mere breathing

Eating, sleeping—

Not a job—

But a work—

A child’s vision

That sees a blade

In leaves of grass

That chases snowflakes—

Weeping as they melt—

That sees the color

Of stars against

The dark blue sky

Of night.

Here is life—

A thing that hungers

That thirsts

That risks all

Every day

For one more breath—

That savours every smell,

Delights in every taste,

Treasures every touch,

Devours every sound,

Consumes every sight–

That teaches stars

What it is to burn.

Here is life—

The ebb and flow

Of joy and laughter,

Of sorrow and tears,

Of youth and age at once–

The first steps–

The first bike–

The first love–

The learning

And the learning

And the learning—

That wakes in your arms

Like starlight

Turning into sunlight.

Here is life—

Live.

copyright 2012 by Harry Proudfoot

This is why I walk in circles in June from sunrise to sunrise–and beyond. It is why I hiked the 26.2 miles of the Marathon Walk. It is why this site exists. This is for all of you who have walked someone to the end of cancer’s road. Those of you with cancer might want to skip this one.

Here is Death

Here is death–

Not sharp and sudden—

No bullets, knives,

No stroke or heart attack–

Not quick and clean—

The messy death

Of soiled sheets

And pumps and wires

And frustration—

The loss of every dignity—

The loss of every privacy—

The loss of every human thing.

Here is death

Built slowly day-by day—

The swollen feet, the lump,

The shortness of the breath—

The appetite that fades–

The world that shrinks

From town to home,

To a floor,

A pair of rooms,

A bed and chair.

The pain that grows

In mind and body both

Here is death–

Beggaring the body,

Beggaring the mind,

Beggaring the soul,

Consuming flesh,

Consuming sanity,

Consuming humanity,

Sucking the marrow

Of all that is joy.

Here is death–

I read to you,

I kiss your forehead,

Nose and lips—

The doctor comes

And listens, shakes his head–

I close your eyes–

I carry your coffin

And weep the silence

That remains.

copyright 2012 by Harry Proudfoot

I went out and looked at the stars Tuesday night. I was hoping to see the aurora because of the massive solar eruption early in the week, but there was no sign of that beyond a light haze off to the north that may have just been the beginnings of cloud cover.

But there was a bright red star in the sky that may have been Mars. And if you know how to look, there were red, white, and blue stars scattered across the deep navy blue of the night sky that most people see only as black.

My  fascination with astronomy was one of two things Jane never quite understood about me. She liked star-gazing well enough, but why I wanted a telescope I am not sure she ever figured out. And how I could spend an hour looking through it at the craters on the moon…

But she indulged me just as I indulged her fascination with cross-stitch. She loved watching the picture emerge from the canvas even more than she liked the finished product. It was the thing we both loved about dark room photography–that moment when the picture first popped out and filled the paper with light and shadow held a fascination for us both that digital photography never quite managed to duplicate.

Tomorrow night I will talk about the stars in another context. The theme for the Greater Fall River Relay For Life this year is Relay goes Hollywood. The Kick-Off party is being staged as Oscar Night with cancer survivors as the stars. We will celebrate their lives and their victories with a faux red carpet and each will have a star with their name put up on a wall.

But we will also take time to remember the fallen. Not everyone who encounters cancer survives the experience–as I know far too well. For all our successes with some cancers and some patients, there are still far too many for whom cancer remains a death sentence–there are too many who have died.

And their deaths will fuel the third part of the night: organizing to fight back–organizing not just to raise money but to raise awareness among patients and doctors about all the cancers that are out there. We need more research, yes. But we could have far more survivors with stars on that wall if we caught more cancers sooner. A cancer that is discovered early is far easier to kill than one that is found after it has really had time to sink its roots into flesh.

If you are local, please join us tomorrow night. Tickets for adults are just $10, for students a mere $5–and children under six are admitted free.

And if you are not local, seek out the Relay for Life in your own community. Find a team to walk with–or form a new team. My central concern here is usually NET–but my experience with it has broadened–not narrowed–my concern. Cancer kills. Focusing on just one form of it to the exclusion of the rest will not save those with other kinds.

Come walk with us.

I had an interesting time on the radio today–and afterwards. I did about 15 minutes on WSAR, a local radio station, for Friday night’s Relay For Life of Greater Fall River’s Kick-Off event.

I worked in radio about 40 years ago when my teaching job was not really paying enough to make ends meet. I was amazed by how little had changed in that time. The microphones were a little bigger. There were two people in the room where we generally only had one in the old days. And the traffic report was done using computers. On the surface, at least, very little had changed.

I’m sure beneath the surface technology has changed the business in many ways. But the basic

workings of host and guest in local radio has not changed very much.

Afterwards we talked for a few minutes off-air about cancer in general and NETs in specific. From the description one of the hosts gave me of a cancer a friend had died from it sounded as though she had been an undiagnosed case of carcinoid syndrome. Something had attacked the heart in the process of the disease–and it sounded a lot like what had happened to Jane.

Things in cancer have changed over the last four decades. We no longer talk about what used to be called “The Big C” in the hushed tones we once did. There are forms of cancer we have made real strides against. Some cancers are no longer the absolute death sentence they once were. I was online with ACS CAN last night during the State of the Union and the number of seven, eight, nine, and ten or more years survivors was astonishing.

But there are cancers where our progress has been less stellar. NET/CS is one of those. While we have made great strides in the last two years in terms of our understanding of the disease, our ability to find it is still very limited. Most that

are discovered early enough for a surgical cure are found purely by accident. For the rest, we have no real cure–only a series of holding actions that can slow down the progress of the disease but not eradicate it.

PRRT shows promise, but the trials that lead to approval by the FDA have only just begun in the US. In the meantime, patients like Sunny Carney end up traveling to Europe on their own dime–paying $50-$75,000 for a treatment Europe says works like nothing else in our arsenal.

ACS talks about doubling the research to double the cures. Doubling the research means spending a lot more money than we do now. We need to find ways to double the money we spend on NET/CS research–and then double it again. That sounds like a lot, but the first doubling only amounts to $2.5 million–a tiny fraction of the money that will be raised this year for the fight against breast cancer–or to fund presidential campaigns.

But equally important is educating primary care doctors about what to look for. If we can catch enough cases early enough that surgery can cure rather than just delay, we can save a lot of misery.

If you are looking for a good time Friday night that will also do some good–and you are on the South Coast of Massachusetts–you should chug on down to the Greater Fall River Relay For Life Kick-Off Dinner at the Notre Dame Church Parish Center at 529 Eastern Avenue in Fall River. In addition to a buffet with food from more than 20 area restaurants, there will be drawings, dancing, and information about this year’s Relay. The event starts at 6 p.m.

Tickets are $10 for adults, $5 for students, and children under six get in for free. There will be a table of activities for children, slide shows and music for the adults–in addition to all that food–and a good time to be had by all.

And if all that is not inducement enough, you can see me in my black tux playing master of ceremonies. I may even venture onto the dance floor to see whether or not any of my Fred Astaire, John Travolta and Footloose moves still work.  We will also try to provide a little of what my old friend Reverend Jim Lowe used to refer to as “soul food” as we celebrate survivors, remember our losses, and continue to figure out ways to fight back against the hideousness that is cancer.

This is the official launch of this year’s Greater Fall River Relay For Life. The event helps  raise the seed money for the planning committee so we can rent the tents and pay the initial expenses for this year’s event, which is June 22-23 at Somerset-Berkley Regional High School.

Last year’s event featured over 90 teams and raised over $308,000 for the American Cancer Society. That was good for ninth place among relays in New England.

The goals this year present a real challenge: top 100 teams year and try to reach $350,000. New Bedford beat us last year–they finished fifth–but we want to reel them into harpooning distance.

To do that, we are encouraging every team to try to reach the next fundraising level this year. If you didn’t reach bronze last year we want to help you get there. If you made bronze, make silver. If silver, then gold–and on up the ranks from there.

I have challenged the Walking with Jane team to set the pace this year. We won the team spirit award last year and raised about $4,300–that was good for silver. This year our target is $10,000.

We are poised for a great run. For the first time, we have chairpeople for very committee we are supposed to have. We already have two corporate sponsors on board locally and a bunch of teams lined up at the starting line.  But we will need lots of help to get there. If you ran a team last year, we need you back with us.  If you ran a team in the past but didn’t last year, we need you back. If you were part of a team last year–or the year before or the year before–we need you back. And if you have ever thought about doing the Relay for Life but never quite got there, we need you to get involved.

Cancer isn’t going away…but neither are we.

See you Friday night.

The Kick-Off Friday night is where it really all begins. Hope to see lots of you there.

I got notes from three different people last week. All are going through troubled times and all asked me a variation on the same question: “Why me? What have I done to deserve this?”

I’m afraid I did a very poor job of answering them. Aside from the standard platitudes–you have done nothing to deserve this, God never tests us beyond our strength, we generally emerge from such trials better and stronger than we were–there are really no satisfactory answers to the “Why me?” question when we are in the middle of the battle. They all sound empty in that moment even if they prove true in the long term. And they don’t always prove true.

Another answer to the question seems alarmingly cruel: “Why not you?” The answer assumes there are diseases and injuries that are going to happen to people on a largely random basis, so periodically we are all going to get hit, either directly or indirectly, by misfortune. None of us is special–certainly not so special that bad things will detour around us to hit only those who “deserve” to have bad things happen to them.

But that answer seems far less cruel than what happens to Job in the Old Testament. Job is a happily married man with seven sons and seven daughters and a beautiful farm filled with sheep and cattle and oxen. He is a man of deep faith whose first act every morning is to praise God–and whose last act every night is to thank God for his good fortune in that day. God turns this good man over to Satan to be tested in a sort of wager.

Satan kills his sons and daughters, burns his house and barns to the ground, blights all the crops in the fields, and slaughters his animals. Sitting in the ruins of his burned out farm Job is forced to listen to his neighbors rant about the evil he must have done to so bring God’s wrath down on him. Finally, when Job is about to crack, God intervenes, explains this was all a test, and that Job shall live joyous days. He gets his house rebuilt, his crops replanted–his wife even has more children to replace the ones he has lost.

Maybe Job does live joyous days. But it seems to me that joy must be more than somewhat blighted by the memories of his 14 dead children–lost because God had to prove to Satan that Job was a good man. I hope Satan got the point–it was an expensive lesson Job picked up the tab for.

The night before Jane’s heart surgery, I randomly opened the Bible in my hotel room seeking some bit of wisdom for the days ahead. The book fell open to Job.  I hoped it meant that while we would face difficult times, in the end she would come back to me and we would live joyous days together.

Clearly I was wrong. Now, whatever happiness comes to me in the future, it will be tempered by this loss.

But tempering something also strengthens it. I take solace in that thought.

Sunny Carney, who has been blogging about NET/CS for a number of years–and who has written a book (The Sunny Side of Cancer) on her experiences as a patient with this form of cancer–is likely on her way to Switzerland as you read this. The plan was for her to leave Pittsburgh for Europe Friday morning.

She is going overseas for PRRT therapy–a form of radiation treatment that actually works on NETs.

Why can’t she get that treatment in the US since it has been available for a number of years in Europe? Because the approval process has only just begun in this country. You can sign up for a trial in Houston, Texas. Villanova is building the equipment necessary, but my understanding is they are not on-line yet. And not everyone who wants to get into a trial is accepted for it.

So Sunny has to fly to Switzerland. And she has to fly there on her own dime–and pay for the treatments and all her other expenses out of her own pocket as well. Because the therapy has not been approved in the US her insurance company won’t cover the costs.

Sunny’s family is not financially rich. People in the Pittsburgh area and sales of her book have helped her raise the money she needs. The Pittsburgh Post-Gazette wrote a story about her last week. The cost of the treatment runs $50-75,000 depending on a number of factors, including the current exchange rate.

I know what an ordeal getting from here to Boston was for Jane. It is only about a two-hour drive. A flight to Europe would have been a challenge beyond even her strength in those last months. Sunny knows that flight is going to be tough–but there is not

much choice about it.

She has three kids and a husband who clearly love her the way I loved Jane. And she loves them. She wants to be there for them for the long haul. Without this treatment there is vanishingly little chance of that.

So say a prayer for Sunny today. Say one for her tomorrow and the next day and the next day and the next…until she comes home healthy.

And while you’re at it, say a prayer for all those with this disease who are out there looking for a cure. And say one for the doctors and the researchers who are doing the work to find a cure for this most complex of cancers.

If you are lucky enough to have some money, send a little to Sunny’s fund. The address to make a donation is:

Sunny Carney Carcinoid Cancer Fund
C/o S & T Bank
2190 Hulton Road
Verona, PA 15147

Or you can make a donation or buy the book from her website. This is one of those times where money may help grease the path for the desire expressed in those prayers.

Do what you can.