Winter has been overly kind to us here on the south coast of Massachusetts this year. Perhaps this is Nature’s way of apologizing for last winter’s endless snowstorms and brutally cold temperatures. In New England, however, we doubt such things. Our Puritan past reminds us that weather like this is merely setting us up for some massive payback in the weeks ahead.

Last year’s weather suited my mood. My soul was frozen by the numbness of grief. It was as though I had to prove something. Each snowstorm forced me to reopen the pathway to my wife’s grave. The cold winds pummeled me as I stood by her grave trying to make sense of what had happened. Everything was drenched in metaphor.

There have been times this winter the weather has been contrary to my state of mind. Much of January and February were difficult for me. The numbness of a year ago has worn away–and facing loss without that numbness has been difficult.

But a poet should be more attuned to what the world is saying to him than I have been. I should have seen the early arrival of the crocus shoots and the sudden rising of the daffodils as the Earth’s way–as Jane’s way–of telling me it was time to wake up and get on with not just the work in front of me, but with the life as well. The eternal Narnian winter has begun to melt–and the white witch of grief has begun to lose her hold.

This is not to say that I am done with grief–far from it. Depression and sadness still grip me–and will still rule me–at times. I am not fool enough to think a single flower stalk represents an end to the deep emotional ties between my wife and me. Those ties are eternal. And I cannot escape the long silences her absence creates. Rather it is the beginning of the end of this awful paralysis that has stunted everything I attempt.

That paralysis is not gone. Everything I do is still an enormous struggle. I still keep having to add more things to my list every day than I can take off it. And even things I know are critical do not always make it to the top of the list by the end of the day. Going to bed and getting out of bed still remain among the hardest parts of the day.

But where once everything was stagnant–where every move left me feeling like a fly caught in slowly drying amber–something has begun to change. What that change is, where it will lead, I do not know.

But spring is coming. There may still be horrible storms to get through, awful cold to endure–and this positive energy I feel may shrivel in those days the way I worry about a sudden cold snap killing off the promise of those first shoots–but the sun rises a little earlier each day and sets a little later.

It is time to plan the garden and start some seeds.

A friend once told me this story about her son.

She was lying in bed asleep one morning when her son bounced onto her bed, waking her up.

“Mommy, mommy,” he chirped, “The sun is shining…the birds are singing…I’m hungry.”

For a child, every day is about new experience and new knowledge. Every day is about the excitement of possibility. Every day is about being hungry–not just for food but for the new that each day brings with it.

Somehow, neither Jane nor I ever lost that child-like desire for the new. We counted any day wasted where we had not learned something new, experienced some new perspective. It was why teaching suited us both so well. Even if you had taught something a dozen times, teaching it to someone else made it different–it forced us to see everything we knew from a different angle. And it gave us both an excuse to read, to study, and to learn something new every day.

Jane played tennis every day in the summer. For two hours, she and her sister would hit together in a local park. One day, two women challenged them to play doubles against them. Jane and her sister lost the first three games of the first set.

Then Jane took her sister aside. “I know now what they are doing–what they like and what they don’t like. They don’t win another game.” Jane had spent those three games studying and learning. Once she knew, they had no chance. She and her sister ran off the next six games, then smoked them in the second set.

Jane hated losing. I hate losing. It is what has made her death so hard for me to deal with. We learned all we could. We applied what we knew and what her doctors knew–and we still lost. Never mind the fact we didn’t know enough–any of us–to win the battle. Losing gracefully simply never has been part of our make-up.

I realized this morning that part of what ails me these last weeks is that, while I have stuck to learning something new every day, I have found less of a child’s joy in it. Part of it is the deadly seriousness of what I have put myself to learning. I learn less for its own sake and more for the deadly purpose of taking on this disease. Some will argue that is a good thing–that I have grown up at last.

But this work requires more than the recitation of factoids. It requires the mind of the child who sees the connections between disparate branches of knowledge–who delights in the connections not because they will provide new weapons, but simply because they are there to be discovered. In forcing myself to focus on how everything relates to this cancer I have stopped seeing the larger picture.

In ignoring my nature I have decreased my value and made myself more unhappy.

The sun

is shining…the birds are singing–and I am, again, very hungry.

I’ve been cranky lately. Fourteen months of grief combined with ten months of focusing on cancer in general, and NET/CS in particular, will do that to you.

I’m tired of feeling like a wet blanket at best–and a damned disruptive nuisance at worst–at virtually every social event I attend. I won’t stop going to them because getting out is good for me–but I’d like to feel like something more than the odd wheel and an object of pity.

And it is not that other people are trying to make me feel that way–or have objectively or subjectively given me any reason to think they do. In fact, people have been pretty universally wonderful. When I need to blow off steam, they let me. When I need hugs, I get them. From conversations in my grief support groups I know this is generally not the case: within a few months folks tell me their friends start trying to line them up with dates and begin insisting that they should be over this by now. No one has done anything like that to me. My friends have largely figured out that this is going to take as long as it takes–and that they are not going to push me to move through this faster than I can.

I’m just tired of feeling down so much of the time. And it makes me cranky.

As does what I have learned about cancer these last months. Cancer in any of its forms is a nasty business. It is a mutation that mutates as fast as we can find things to hit it with. Most forms are difficult to detect and are too often detected too late to bring the best strategies and tactics to bear. And cancer can tear apart families and emotions every bit as effectively as an alcohol or drug addiction can.

And as if all of that were not bad enough, politics gets involved. The Komen case two weeks ago is only the most recent manifestation of that–though it is more blatant than some others. I received praise in an email I got from Dr. Otis Brawley, the chief medical officer at the American Cancer Society, because I said I was not interested in taking money from research into other cancers for NET/CS research but rather in finding new money for that work. He told me that most people lobby for their cancer at the expense of others–not with an eye to making the whole pie bigger.

Yet I understand why people do that. Their loved one has a fatal, awful, wasting disease that strips them of their humanity and dignity one painful layer at a time. It makes us selfish and cranky–and it  hurts like hell that there is just about nothing you can do to even slow the thing down. It reduces lay caregivers to teenagers with no other way to release their anger than acting out.

And when you lose that loved one after that long battle that deserves more than a funeral at the end, it is damned hard to be selfless and rational when it is over.

I was listening to A Prairie Home Companion until a few minutes ago. They have been doing this ongoing skit about the life of a snowman. He and the snow-woman down the street have been talking together for some weeks. They both know their time is short. Today was about saying good-bye. The tears started streaming down my face. I had to turn it off. I don’t like to be distracted when the tears come. I want to feel them. My friends in the grief groups tell me that is the best thing to do–that if you try to hold them back you only make things worse later.

I keep coming back to something my mother-in-law said when she was told what she had was fatal: “Everyone dies of something–I just know what it is that is going to kill me.”

Jane knew what was going to kill her. She walked across the street one day to see our neighbors. They winter in Florida. They told me she said to them that day shortly before they left that she did not expect she would still be here in the spring. To me, she said optimistic things. She was being brave for me.

I had done the reading. I knew what the odds were–knew that her seeing another summer was not likely. But I stayed upbeat every day about her chances. I apparently did such a good job acting brave for her that she thought she had to be brave for me.

But I think there were times in the hospital that we both believed devoutly that she would make it–that we would find a cure and that she would be the first person to truly defeat this disease and live to tell of it.

We had the best doctors and the best hospital and the best attitude.

My mind knows we did everything humanly possible. But I keep looking at it and wondering if there is anything else I could have done–that either of us could have done–that anyone could have done.

The truth is there was nothing we could have done differently by the time we knew what was going on. And even had her doctors figured out what she had five years earlier all we could have done was, maybe, hold off the end another year or two longer.

Do we know more now than we did then? Yes. Would it have made a difference in her quality of life? Maybe. But the truth is we still have no cure unless we find this cancer early–and for Jane, early was five years before I met her.

We are all snowmen and snow-women. What matters is not that we will melt–but what we do with the time before we do.

Thinking outside the box is one of those phrases that has become a truism. Have a problem? Think outside the box. Facing declining sales? Think outside the box. Your team isn’t winning? Think outside the box. Personal problems? Think outside the box.

The phrase has become so ubiquitous that it is now a cliché. And the problem with a cliché is everyone hears it and thinks they know what it means–so they don’t think about what it really is about.

I don’t like boxes when they become pigeonholes. I do like them for storing things and for moving things around with relative ease. They have great entertainment potential–as any parent has discovered when they bring home one with the latest toy in it–and discover the child finds playing with the box far more interesting. And in a pinch a good size box can provide shelter from the elements–as too many Americans have had cause to learn far too well in recent years.

Sometimes staying inside the box is a very good thing. Ask any scientist about staying inside the box when it comes to adding acid to water rather than the other way around. Ask any carpenter about staying inside the box when it comes to wearing safety glasses.

So sometimes staying in the box is a good idea. Sometimes it is a bad idea. And sometimes you just don’t know until you try.

I went on a scouting expedition today to look at a different way of marketing Walking with Jane merchandise. We’ve sold items at yard sales, at basketball games, at school in the cafeteria, at Relay. Someone suggested two ideas last summer I never quite managed to make happen: farmers’ markets and flea markets. It’s a bit early in the season here in New England for the first, but there are three indoor/outdoor fleas markets within easy driving distance so today I went to check them out.

In my youth, flea markets were like massive yard sales. Someone rented a giant parking lot and then sold table size lots for the day or two of the event to anyone with merchandise to sell.

Things change. The first two I walked into today were indoors and it was clear the vendors were semi-permanent residents. The booths were more like small storefronts than tables. And given what was there, people don’t pack up everything they own at the end of the day and take it home.

The third was more like what I remembered–much of it was outdoors on long tables–but even there I sensed a semi-permanence to much of what I was looking at. But it seemed like a better match. Still, I am afraid Walking with Jane items won’t sell very well there. What t-shirts there were sold at a third of what I have to charge for the classic shirt–and half of what I pay for those shirts. The less expensive items might do well though.

Sometimes a thinking-out-of-the-box idea is a clear winner. Sometimes it is instantly clear the standard pull-it-out-of -the-box idea makes more sense.

But this is one of those times the answer is just not clear.

I am not ok.

It is Friday night. This was our night to go out. We would leave work and go out for an early dinner. I would have my glass of wine. Afterwards, we would go to Dunkin’ Donuts and I would get her a large coffee, me a hot chocolate and a couple of doughnuts we would share. Most nights we would go home and curl up on the couch. Some nights we would go to a movie or a play.

It doesn’t sound like much. I can’t explain the romance of it. Even as I write it, it seems mundane and anti-climactic. But at the end of a long week it was all either of us really wanted: some time to be with each other, some time away from the books and the papers and the reminders of our jobs, some time to reconnect and pretend we lived the lives of normal people.

I went for a walk this afternoon. The weather was too nice to sit in the house working on this website or the Relay for Life or any of the other projects that are waiting for me. My barber reminded me this morning that I need to take some time for me more often. He’s right–but I am not sure how well I can follow his advice. The disease is still out there. Ignorance is still out there. Pain is still out there.

Of course, they will still be out there no matter what I do. But neither Jane nor I  ever gave up easily.

People keep telling me Jane would be proud of what I have done these past 14 months. People keep telling me they are amazed–some even say inspired–by how positive I seem to them–by how much I do–by my desire to save others from what we went through.

The truth is, though, that I am too aware of where I am falling short. The information for the pieces on administrative costs  and how much charities spend on actual program costs have been on my desk for a week–I have not touched either. There are three other projects that need my attention three days ago. I have not touched them either. I feel guilty about all of that.

Part of me wishes I had loved Jane less so that the eagle gnawing on my liver would be easier to endure. Part of me wants just wants to go into the bedroom, curl up in a ball on the floor, and ignore the world and everyone in it. Part of me wants to let half the world die so everyone left can feel what I feel.

But the rest of me simply is not wired that way. I cannot love any other way than the way I love her–completely and without reservation. I cannot conceive of any other way to love. Jane and I loved each other. But we loved the people in the world as well. And we loved them as we loved each other.

Jane’s death did nothing to change that. There are people who hurt in the world. There are people who are ignorant in the world. There are people who need help in the world.

So I can’t curl up in a ball and sink into my own pain. I have to get up and fight through it. Jane said before she went into the hospital that if she didn’t make it that she wanted me to go on and enjoy my life–not get bogged down in the loss and the hurt.

But she also knew who I am. And I hope she understands why I can’t go there.

I keep careful track of what draws an audience here–and what doesn’t.

The ongoing series on the Business of Cancer I think of as being important. There are thousands of charities in this country vying for the very limited funds available from private donors. There are hundreds of cancer charities. There are dozens of cancer charities working to fund research. There are barely a handful with any interest in NET/CS–and only three are actively funding research focussed exclusively on the cancer that killed my wife that I have been able to find so far.

The series is aimed, however, not just at NET/CS charities. I

worry about cancer generally. As I have written here before I feel like a magnet for cancer. I am surrounded by people who are fighting this–and who are all more likely to die from it than from something else. I think it is important for people to make their donations wisely and I want to provide the information to make those choices in a form that is a bit more accessible than Charity Navigator can provide.

Yet only 8-10 people a day have looked at what I have written on the subject in the 48 hours after each post. And the numbers after that fall off precipitously.

Posts about new treatments and links to conferences and articles don’t generate much traffic either–though arguably those links are the most valuable things here–especially for those who have the disease, lay caregivers, and medical professionals. That has begun to change some in the last two weeks as more and more of those folks have discovered this site thanks to work the design group has done on SEO things I don’t entirely understand.

The biggest traffic driver is when I write about what Jane went through with the disease–and what I am going through as I struggle with adjusting to losing her. I hope the interest is driven by people trying to find ways to deal with their own losses–their own struggles. I have always been of the opinion that intelligence is learning from your own experiences–and that wisdom is learning from the experiences of others.

But we also live in a culture that is increasingly starved for real experience and real emotion. The closest most people come to a battlefield is “Call of Duty” or some other video game. The closest they come to love is what they see on television or on film. Fifty percent of the population never sees what a real marriage is about because at the first sign of a problem a couple files for divorce. The result is kids have no real vision of how a marriage works.

What I felt about Jane–how I still feel about her–is impossible to describe except with the abstract term of unconditional love–which tells no one anything.

But the stories I tell here perhaps help people conceive of what that term really means.

I started this piece because I wanted to complain about people being more interested in the raw emotion than in the hard facts of fighting this disease. But we all have to remember that we are emotional creatures–and that learning to deal with those emotions is every bit as important in fighting this disease as where to put your money or what medical treatments are available.

Fourteen months and four days—

You breathed in my arms

One last breath.

I kissed you,

Closed your eyes,

Let you descend and ascend.

Kissed you again–

Your forehead cold

Against my lips.

Fourteen months and four days—

I kissed your lips

The day we buried you—

Carried your coffin

Into the church

And out again—

From the hearse

To the grave—

I kissed your coffin—

Fourteen months, four days—

Fourteen minutes, four seconds—

Fourteen years, four months—

The time spins out like straw

Becoming lead—

The gold is gone—

No alchemy reclaims it—

Fourteen months and four days—

Shut up in darkness—

Shut up in tears—

Shut up in silence.

Fourteen months and four days—

We are the dead—

We are the living—

We are the stuff of stars—

We are the stuff of God—

So we will dance again—

And sing again—

And love again…

For when the darkness rises

The light will descend to meet it.

All my love, always and all ways,

Harry

I have had enough today. I don’t want to write about cancer. I don’t want to write about charities and how they spend their money. I don’t want to write about the latest research or the latest conference on NET/CS.

I most certainly should–but do not want to–write about the cancer fraud case at Duke that aired on 60 Minutes last night.

I’ve had enough of the business of cancer. I’ve had enough of writing every day. I’ve had enough of reading every day. I’ve had enough of analyzing and thinking every day.

I want my wife back and I want my life back.

But it isn’t going to happen.

Tomorrow is Valentine’s Day. It will be fourteen months and four days since my wife died–since she took her last breath in my arms. It will be fifteen months and one day since the last night we slept together in this house.

Today I went to my voice therapy session. Then I went down the road and bought some craft supplies so I could build a decoration for her grave. I finished it just a few minutes ago. She’d like it, I think.

Tonight, after my ACS meeting, I will write her a Valentine’s Day card. I will finish her poem. I will place them in a clear plastic bag and seal it.

In the morning I will have breakfast, take the pills that are supposed to help lower my cholesterol and keep my heart healthy. I will pack the card, the poem and the decoration into my car. I will drive to the cemetery. I will place them on her grave.

I will stand there in the cold and talk to the stone. It is a ritual that keeps me sane on these emotional days. It gives me an anchor for my grief. I can cry there and no one will notice or care or ask for an explanation.

Then I will come home. I will do the research, the thinking and analyzing, the writing. I will go out and sell t-shirts and buttons. I will tell people I am doing OK–that I have good days and bad days–that today…is whatever it is.

Part of me doesn’t want to do any of this anymore. Part of me wants to curl up in a ball and hide from the world.

But I won’t do that. Maybe I am foolish or egotistical for thinking this, but somewhere out there is a young couple–and one of them has this awful disease and does not know it yet.  Maybe, just maybe, what I write and what I do will make a difference in their lives. Maybe they will not go through in their 50s what Jane and I went through in ours.

Maybe one of them won’t have to make the weekly trek to the cemetery–or the really tough ones on those days that every couple has that are special.

And maybe one of them won’t have to sleep in an empty bed that has a spot in it that never quite gets warm the way it once did.

I’ll give you three guesses which cancer research charity with a three or four star Charity Navigator rating and over $100 million in donor income has the most efficient fundraising operation–and 99 percent of you will still probably get it wrong.

There are four things I look for when I want to donate to charity. The first is mission–I want to align what the charity is doing with what I want that money to accomplish. The second is the percentage of what the organization takes in that actually goes to what it claims is its mission. The third is how much gets tied up in administration. We’ll deal with all three of those in later parts of this series.

The fourth is the one we will deal with today: How efficient are you at raising money? If 90 percent of what you raise is spent on raising money–and at least one cancer charity I encountered this week does that poorly–then I m not really interested in whatever it is you are selling me elsewhere.

The top seven grossing cancer charities raised over $4.3 billion last year. Any of the top six beat number seven easily–but only one of them did it with nearly the efficiency of that seventh place finisher. And none of the other five really were in the same league.

In terms of total income last year the American Cancer Society nosed out the St. Jude Children’s Research Hospital by less then $7 million–but neither was close to the top in terms of fundraising efficiency. In fact, among the 53 three and four star charities, ACS finished next to last with 22.2 percent of its money going to fundraising activities. It beat the Childhood Leukemia Foundation (26.3 percent) which raised just under $3 million last year. Both spent $0.25 on fundraising for every dollar they raised.

St. Jude has long been one of my favorite charities. I love the backstory. I love the way they have been on the cutting edge of children’s cancers for years. But they spent 16.9 percent on fundraising last year to finish eighth from the bottom among those 53 charities.

The Leukemia and Lymphoma Society, which raised over $246 million last year to finish sixth in gross revenues, also finished sixth–but this time from the bottom–for the percentage of its revenues it spent on fundraising. The organization spent 17.6 percent of its income on fundraising.

The third most frugal fundraiser among those with more than $100 million raised was City of Hope. They spent 3.0 percent of their income on fundraising. That was good for eighth place overall.

The Susan G. Komen for the Cure Foundation did significantly better than either ACS or St. Jude’s with 9.8 percent going to raising money, but that was not enough to broach even the top 15 in terms of efficiency. They finished in the middle of the pack both overall and among the high revenue group.

The Dana-Farber Cancer Institute finished in a tie for fourth overall in fundraising efficiency in a photo finish. Dana-Farber had only 1.6 percent of its income going to fundraising expenses. This placed it second among the charities with more than $100 million in revenues.

Cold Spring Harbor Laboratory ($132,495,402) finished first among the $100 million+ club. Most people have never heard of them.

Cold Spring Harbor Laboratory is a purely research oriented organization. They treat no patients but do the kinds of basic research that make new treatments possible. Their head honcho pulls down $498,596. Administration costs are 9.9 percent and 88.3 percent gets spent on program expenses.

But Cold Spring Harbor finished behind two others overall.

The Jonsson Cancer Center Foundation raised just $9,345,091, but spent just one percent on fundraising. They spent $.01 for every dollar they raised. How could anyone beat that?

The people at the Minneapolis Medical Research Foundation found a way. They raised $26,649,107 and spent just 0.1 percent on fundraising.

(Next: Program Costs)

In a separate post I will list the 53 three and four star cancer charities I looked at in the order of their fundraising efficiency.