Category Archives: Death

The tip of the spear

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Goals, Jane, Uncategorized

Holding the spear

I have never felt more alone than I did when Jane was in a coma. I had the words we had spoken to each other and the love we shared, but it was not enough. I remember saying to myself at one point, “You are all alone out here, on the very tip of the spear, and you have to decide whatever is going to be decided.”

It is what families do.

To this day, I don’t know that I made the right decisions in those last days of Jane’s life. I know I made the best decisions I could based on the information I had at the time. I had friends and doctors and nurses to help me think things through but, in the end, I had to make the final calls.

Alone in the dark

Sunday morning at 5 a.m. I boarded the bus that would take me to the starting line of the Boston Marathon Jimmy Fund Walk. It was 42F and sunrise was not even a glimmer on the horizon. It was the first bus and it got me there in time to eat a banana and down a bottle of water before the official starting time.

I had to make the final calls.

I walked up the hill to the start point, asked a police officer to take my picture, and headed off into the dark. I was wearing shorts, knee braces, and a t-shirt pulled over a sweatshirt. I’d decided to wear gloves against the cold and against the blisters my trekking poles would otherwise induce over the 26.2 miles.

The real Marathon

Most human bodies are not really designed for distances greater than 20 miles a day. When armies literally marched into battle, the wise commander limited his men to 20 miles a day, knowing that going much further than that would leave them too tired to fight at best–and vanished into the night at worst.

I walked up the hill to the start point…

Asking a human being to run a distance greater than 20 miles is even more difficult. As a friend who was preparing for his first marathon-length run reminded me, the first guy who did it died at the end after shouting the single word, VICTORY!”

A test of will

I’ve walked 20 miles many times in the last four years. I’ve walked further than that maybe ten times–four of them on the BAA Boston Marathon course for the Jimmy Fund. Most years, I’ve trained hard for that walk. The only difference that training has made is when and where my body starts to object strenuously to what I am doing to it.

…the first guy who did it died…

Yesterday, that point came about Mile 21. The latest it has arrived for me is Mile 23. But whenever that moment arrives, the Marathon Walk ceases to be about physical conditioning; it becomes, instead, a test of will.

My one talent

People tell me I am a gifted writer, a gifted speaker, a gifted teacher. I am none of those things. I am good at each of them, yes. But the word “gifted” implies some inborn talent and that, I don’t have. My heroes had those talents–and I wanted them. But I did not have them.

I’ve walked 20 miles many times…

I became a good teacher, a good writer, a good speaker because I worked to develop those skills–and was fortunate to have good teachers and good models to help me reach my goals. My single talent, if I have one, is that I am stubborn to the point of foolishness. If I want to learn something, I work at it until I understand it. If I want to do something, nothing gets in my way. Or almost nothing.

The tip of the spear

Five years ago, Jane was dying. Neither of us wanted that–and we fought with every measure of our being to stop it from happening. We failed–and every fiber of my being hurts every second of every day as a result.

…nothing gets in my way.

So when my muscles start to scream near the end of a Marathon distance, they have to compete with an even stronger vision–an even stronger voice: I remember Jane’s pain in the last days of her life; I remember my own pain in those days; and I remember the emotional pain I deal with every day; and I know I don’t want anyone to go through what Jane went through, what I went through, what I continue to go through.

Paying the price

Beside that pain, what my body goes through is nothing. It is a part of the price of finding a cure–and a minuscule part for me compared to losing Jane.

Five years ago, Jane was dying.

So I walked through the dark until the sun came up. I walked until I met up with the part of our team that was starting at 13.1 miles. I walked until my body broke–and then I walked some more. And when I crossed the finish line at last and shouted “victory” again, most of our team and another team of zebras was there to meet me.

Forming the spear point

And this is part of what I said to them: We are not merely an alliance; we are not merely a team; we are family. From this moment, no zebra awakens from surgery alone, no one fights alone, no one dies alone, no one mourns alone, no one stands at the tip of the spear alone.

…and then I walked some more.

“Today, we are the tip of the zebra spear. That spear is aimed at the heart of NET cancer and, together, we will kill it.”

The point of the spear

And to each of you reading this, I say the same thing–and make the same pledge: From this moment, no one fights alone, no one dies alone, no one mourns alone. At one time or another, each of us will stand at the point of that spear, each of us will strive to drive it through the heart of NET cancer–and in the end, we will kill it.

…we are family.

If that means walking, we will walk. If that means being part of a trial or study, we will do it. If it means speaking or acting or simply living, we will do it. It is what families do.

Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family--and never alone again.
Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family–and never alone again.

Thoughts before the Walk

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, NETwalkers Alliance, Uncategorized

The walk I’m supposed to be doing

I’m supposed to be retired. I’m supposed to be sitting on my deck, looking out over my finely manicured landscape design. I’m supposed to be relaxing and traveling to exotic spots. I’m supposed to be doing all of those things with Jane by my side.

…I know I have to try.

Five years ago this fall, all of that changed. Jane was diagnosed over the summer with NET cancer. In early September, we learned it had damaged the valves in her heart. In late September, we knew we were in a race between her cancer and her heart–a race we needed to win if we were to enjoy even a few months of retirement together.

The cost of failure

By Christmas, it was over–and I was alone. Sometimes, I try to explain what that means to people who have not experienced it. People tell me I am good with words–and maybe I am. But I have not yet found anything that even begins to convey the emptiness that loss creates. My father’s words come closest: “And now you know there is nothing anyone can say to you that will make this feel any better.”

…with Jane by my side.

Someone told me last week that if we had even one child, this would be easier to bear. My father had six of us when my mother died. I don’t think it helped much, even when his eldest son was equally a widower. The relationship between spouses is different from what exists between brothers or sisters or children or parents. Our spouse is the person we choose to be our family. It is the only family relationship we make a conscious choice to have.

Why keep going?

Someone else asked me this week why I take on so much–why I can’t just let this be someone else’s problem. And I have to admit there are moments I just want to walk away from all of it. Nothing I do will bring Jane back. Nothing I do will truly avenge her death. Nothing I do will make this emptiness I feel any better.

…I was alone.

But then I think of the people who walk today because, in part, of what we learned from Jane. I think of the doctors and nurses and researchers Jane’s life–and final days–inspired. I think of the literally hundreds of people I know who are fighting the same cancer Jane had.

I walk because I know…

And I think of their children and their husbands and wives and parents. I know how it feels to look across the kitchen table and see no one there, what it’s like to wake up in the night to half the bed being empty, what it’s like to see something and have no one to share it with–and I know I would condemn no one to those things.

Nothing I do will bring Jane back.

Jane’s death set me on this path–but it is not what keeps me there. Jillian and Andrew and Amanda and Ronnie and their spouses and children do. Pamela and Kelly and Josh and Alicia and all their loved ones do. And Jen and Matt and Eric and Emily and George–and all the doctors and researchers working on this difficult cancer–do.

Choosing to ignore limitations

In the end, I know I won’t find the cure for NET cancer. I know I’m not rich enough or well-connected enough to come up with the money that will find that cure. But I also know that if I don’t do all that I can I won’t be able to live with myself.

I know how it feels…

I know how to write. I know how to speak. I know how to walk. Doing those three things, perhaps I can inspire the people who have the money; perhaps I can inspire the people who have the knowledge and the skills; perhaps that will be enough. And perhaps not. But I know I have to try.

You come, too.

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
Each year, I cry, “Victory” as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.

Reflections on death at 57 months

Death, Grief, Jane, Uncategorized

(Editor’s note: I wrote what follows on Monday morning. Hank died early that evening. Only now, on Thursday, a week after the 57-month anniversary of Jane’s death, have I had time to post it here. You can view his obituary here.)

Life—and death—intervenes

The 57-month anniversary of Jane’s death was last Thursday. I’ve had little time to reflect on that because her father’s health has taken a significant turn for the worse. As I write this, he is on his death-bed just a few feet away. It is 5:50 a.m. and Gail, his other daughter, is sleeping.

Every person’s death diminishes me…

I slept for a few hours earlier. The medicines he is on to keep him comfortable have to be given every hour, so one of us has to be awake at all times. How long this death will take, neither of us knows. But he is seemingly comfortable and, at this stage, that is all that matters.

A time to live…

Jane’s dad was sick long before we discovered Jane’s NET cancer. Kidney problems are easy to spot with the standard blood tests everyone gets with every routine physical. It was a bigger struggle to get him to accept dialysis than it was to discover that he required it.

…he is seemingly comfortable…

Dialysis is an exhausting experience, but it does clean out the toxins in the blood pretty well. While Hank’s life the last six years has not been perfect, the quality of it, until recently, has been decent. He was able to get out of the house, go to cookouts, watch football—most of the normal things people do.

A time to die

Unfortunately, Hank was done in by another medical failure. Apparently, we stop testing for prostate cancer in older men at some point. The thinking, they tell me, is that prostate cancer generally moves very slowly in the elderly. In Hank’s case, that meant the cancer had spread to his bones before it was detected.

Dialysis is an exhausting experience…

The last year has not been good. He has been in and out of the hospital, in and out of rehab, and the quality of his life has steadily declined. Last Tuesday, Gail called 911 when he had become increasingly confused and lethargic. We expected he was dehydrated—the weather was hot and humid and there is no way to pump enough liquids and electrolytes into a person in Hank’s general condition orally.

Waiting for Death

But that was not the problem. The vital organs in his body had begun to shut down. We moved him into hospice care Thursday and brought him home Friday afternoon. He was already asleep most of the time—waking up only when we changed his bed-clothes. Since late Saturday night he has not opened his eyes.

The last year has not been good.

We wet his lips, give him his comfort medications, and sit with him. We talk to him—we can’t know how much registers. But I think that while the porch light is on, there is not much of him left at home.

Memories

Jane’s death was similar at the end. She went into that final coma and slowly drifted away. The difference was she did so in a hospital room. I would have liked to have brought her home to die, but she might not have made it there had I tried—and I did not want her to die in an ambulance surrounded by strangers.

…he has not opened his eyes.

I’ve spent the last few days thinking about Jane and her parent’s house. I have stood by the fence outside where I first told her I loved her, stood in the hallway where I kissed her good night after a date, sat in the dining room where we ate Thanksgiving, Christmas, and Easter dinner—as well as a host of Sundays.

Inhaling life and death

I have stood under the grape arbor where we once sat and inhaled their late summer perfume. That scent is there this week as we wait for Hank’s death. It will close the book on so many memories in a way I can’t quite describe.

Jane’s death was similar at the end.

We forget, sometimes, that medicine is not an exact science. A test not given, a series of diverse symptoms not recognized as part of a larger pattern, a specialist’s rather than a generalist’s view of things—by such little things all our lives hang like the grapes on that arbor. We don’t know when a particular grape will be fully ripe, when a particular leaf will fall—when a specific life will end.

Nine years tomorrow

Jane’s mother died nine years ago tomorrow. I thought of the irony of that last week. That Hank should die on the same day as his wife has powerful symmetry to it, but I kept it to myself at the time. Gail raised the idea this morning and I agreed with her. I feel uncomfortable intruding on her grief.

…medicine is not an exact science.

In a few minutes, I will dip a fresh DenTip—a tiny sponge at the end of a long plastic stick—in water, cleanse Hank’s mouth and then give him his next bit of medicine. I’ll note the slight change in the sound of his breathing, and continue to wait—as I waited with Jane during her mother’s last hours, nine years ago, as I waited for Jane’s death 57 months and four days ago.

Waiting for the harvest

And when the waiting is ended, Death and I will become full adversaries again. I understand the cycle of life and death—of birth and rebirth. I know even the stars have expiration dates. But I am very much a disciple of John Donne: Every person’s death diminishes me, for I am involved with humankind.

Jane’s mother died nine years ago tomorrow.

For now, Henry is dying. I will do what I can to make him comfortable as he waits like a grape to be plucked from the vine.

Jane’s father is dying

Death, Uncategorized

Dear friends,

Jane’s father was admitted to the hospital Tuesday night after he seemed largely unresponsive and confused during the day. After a round of tests in the ER, we were told it appears his body is beginning too shut down.

His daughter Gail and I spent the day with Hank yesterday. He seems both somewhat weaker today than he was the night before and significantly more mentally confused and lost. We spent much of the afternoon talking with four different doctors, including the hospitalist and each of the specialists involved with Jane’s dad’s case.We also spoke with a social worker and representatives of two different hospice groups as potential managers for his end of life care. Gail also talked this morning with the nurse who supervises her dad’s dialysis sessions.

Given those conversations and the significant decline in Hank’s condition in the last 2-3 days, we are ending his dialysis treatments. His quality of life has declined below the level that he would have any interest in continuing his life. He was already on a DNR and had made clear to both Gail and me where the line was beyond which he would want treatment to end.

Today, on the 57 month anniversary of Jane’s death, we will pick a hospice group and make arrangements for him to come home so he can die in familiar surroundings in as much comfort as we can provide him.

As some of you may know, Henry was diagnosed with Stage 4 prostate cancer last year that had spread to his bones. Those metastases have spread well into his rib-cage according to the CAT scan done Tuesday night. He has been on a hormone treatment for this for nearly a year–which is about the time-frame the oncologist here thought it would work, given how far it had already spread at the time of diagnosis.

The doctors have assured us that death from renal failure–he is end-stage there as well–will be a much easer death than waiting for the bone cancer to claim him. They tell us ending dialysis will result in him sleeping more and more until he simply drifts away.

How long that death will take is unclear. Estimates range from a few days to a month at the outside. As I said earlier–and this was reinforced by what the doctors said to us yesterday–his body appears to be shutting down. It’s been fighting a myriad of problems for many years and seems finally to be saying it has had enough.

Needless to say, my work on Walking with Jane will be curtailed significantly in the coming days. I will return to this work as soon as I can, but for now, other priorities must take center stage.

Please give those you love an extra hug or two in the coming days.

Pax et lux,

Harry

Marriage doesn’t always end at death

Death, Grief, Jane, Uncategorized

Marriage: real and imagined

A “real” marriage is an insanely difficult thing to try to explain to someone who has not experienced it. I was reminded of that last week as I worked my way through one of the books in the Outlander series currently being serialized on television. Late in the fourth book, one of the characters describes the difference between a real marriage and one based on obligation. The difference isn’t pretty.

It is left to me to make them real.

But the character misses the point. She sees a real marriage as involving only a romantic kind of love. Her mother points out that real love creates obligations–and that obligations are just as important to a sound marriage as romance is. But even she does not entirely get what marriage is about–or at least she doesn’t manage to explain it very clearly. In some respects, I don’t think we can truly understand marriage until one member of the bonded pair has died.

Marriage after death

Jane and I had a good marriage. We were each other’s other half. We understood romance. We understood partnership. We understood love and the obligations to each other love creates. Then Jane got sick and we faced that the way we faced everything else in our lives–together.

The difference isn’t pretty.

And then she died and I discovered an entire piece of marriage I had not conceived of before–and that I don’t think she had either. Love does not die when one of the partners ceases to be. Rather, at least for the one who still lives, it continues. It shapes who we are and who we become. It colors our perception of every subsequent experience. And it makes us a special kind of crazy. Marriage, it turns out, may not entirely end with death.

Remembering the last anniversary

Today is our 26th anniversary–the fifth since Jane’s death in December of 2010. Intellectually, five years is a long time ago. But emotionally, it feels like mere minutes. We both knew there was a good chance that day would be the last anniversary we would truly celebrate together. Seven days later we would make our first trip to Boston to see an oncologist specializing in Jane’s unique form of cancer. We knew we were in trouble.

It shapes who we are and who we become.

But we tried to pretend for each other that day that nothing was different–that we still had years ahead of us. We both failed badly in those attempts. We went out for lunch. Jane tried to eat–and couldn’t. We tried to walk more than the distance to the car, and Jane couldn’t. Every failure hurt her. Every failure hurt us both. But we kept smiling and kept trying.

Trying for normal

We had neither of us slept well for a long time. I have not slept well for a long time. Her slow decline into death haunts my dreams. Her rasping voice in the last days of her time in the hospital haunts my waking hours. It is the only version of her voice I can still hear–and I suspect I will hear it until I die. And perhaps I will hear it even then.

Today is our 26th anniversary…

We made that last anniversary as normal as we could. We exchanged gifts and cards when we woke up. She read my anniversary poem. I fixed us our traditional anniversary breakfast of chocolate croissants and tea. We talked about our hopes and dreams for the year ahead.

The present

Jane never asked me for a particular present for our anniversary until the last one. She had seen a sterling silver bracelet on a leather band. The bracelet framed a single word: “Believe.” It was a message to us both.

I have not slept well for a long time.

It is the one piece of her jewelry I have never put away. It sits on a mirror on a bookcase in the living room, amid our own glass menagerie. It sits between Jane’s Pegasus and my dragon–the symbols we had adopted for ourselves long before we met. Behind it stand three glass unicorns, pawing the air as they prepare to gallop. To the right is a tiny glass beaker, to the left, a small royal swan. Every piece held meaning for us–every piece still has meaning for me.

Moving forward, not on

Every day, I remind myself, I yet have work to do in the world. And every day, I miss her. I miss the shared goals, the shared dreams, the shared aspirations–shared in a way they cannot be shared now. And some days, it is all just too much. I want to stay in bed and stare at the ceiling. But I can’t. And I won’t. Jane won’t let me–and neither will I.

 It was a message to us both.

That’s not to say I don’t take time to cry when I need to, take a day to sit by the ocean and watch the waves come in or climb to the top of some hill or mountain and sit and watch the sky. But Jane told me I could not stop doing the work just because she was no longer there to do it with me. We both had dreams. It is left to me to make them real.

There are few pictures of Jane and I together. That small library does not deny our marriage. It only underlines how much Jane hated having someone else take her picture.
There are few pictures of Jane and me together. That small library does not deny our marriage. It only underlines how much Jane hated having someone else take her picture.

Another month alone

Death, Grief, Jane, Uncategorized

Two anniversaries

Two friends celebrated their fiftieth anniversary this weekend. Several of us went to mass with them, then spent the afternoon at a local restaurant eating and laughing together. I smiled, hugged them both, and felt some happiness for them. No one mentioned Friday was 55 months since Jane died. I don’t think anyone remembered. Nor did I expect them to. It would have soured everything.

I don’t fear death.

It’s amazing how good I have become at hiding pain when I need to. My friends were surrounded by an aura of joy and I knew I must do nothing to damage that moment. They are not young and I worry about their health. I want them to suck up and enjoy every minute of couple-hood they can get.

Pain-filled realities

I try to be good at anniversaries, birthdays and the other celebrations in people’s lives. I know too well what it is to face Christmas, Valentine’s Day, and Halloween alone. I understand too well what it is to have no one to share the hummingbird’s return with or the small joys of a freshly finished landscaping project. I know what it is to face every day alone.

It would have soured everything.

There is an underlying tragedy awaiting every pair of soul mates. Sooner or later, one half of that partnership dies. And it is painful on both sides. I remember Jane’s tears when I told her there was nothing left to do–nothing left to try. I know what every day is like for me. I begin and end every day alone and empty.

Celebrating the big and the small

Last September we would have celebrated our twenty-fifth anniversary. The day passed unremarked by anyone other than me. Last November, Jane would have turned 60. I took a card and some flowers to her grave. If anyone else remembered, they didn’t tell me.

I try to be good at anniversaries…

And I don’t expect people to remember those dates any more than I expect them to remember the anniversaries of her death. They are the kinds of things that couples take joy and sorrow in. The rest of the world has its own joys and sorrows. While both halves of a couple are still alive they need–and deserve–to enjoy the days they have, no matter how big and no matter how small.

The nature of couples

Jane and I did that. We sucked the marrow out of every bone the gods tossed our way. We shared not just a bed and a house, but a life as well. I have days I wish I had not loved her so deeply. I have days, still, where I cry myself to sleep, days where I hold the pillow she slept on to my nose, hoping to pick up even the slightest hint of her presence.

Last November, Jane would have turned 60.

My friend talked Sunday about his wife being his right arm. I understood what he was trying to say–but the truth always seems like hyperbole. His wife, like Jane to me, is more than a right arm. She is half of all he is–just as he is half of all she is.

A touch of envy

I won’t pretend I am not both bitter and envious. I very much want the things they have–the years they have enjoyed together since Jane and I celebrated their twenty-fifth anniversary with them less than a year after we were married. I desperately wanted–and needed–Jane with me there on Sunday as a warm, physical presence.

Last November, Jane would have turned 60.

Jane always said we would not reach our silver anniversary unless we counted in dog years. My response was always that we would–that we wouldn’t be that old–62 and 59. Fifty years might be a stretch, but given our genetics, even that seemed possible.

Fighting Death

Loss hurts. Death does not kill just the person we bury. It kills the couple, as well. I am not the same person I was when Jane was still alive. I am, in some ways, a colder and more bitter man. In others, I am kinder and more compassionate.

I very much want the things they have…

I have seen Death in my beloved’s eyes, been so close that I could feel the rustle of his robes, smell the pleasant stench of his presence, and hear the whisper of his scythe. I know what it is to try to stop Death–and I know what it feels like to fail.

Moving forward, alone

I don’t fear death. It is a long time since I did. But I am not anxious for it either. People talk about seeing their loved ones again and how happy they will be when that happens. The possibility holds no fascination for me. Jane and I were about making this world better. I still am. That work is not finished. It would profane all that we were if I abandoned that task.

I have seen Death in my beloved’s eyes…

So I keep trying to move forward. I get up every morning. I make the bed. I shower. I shave. I have breakfast. I do whatever work is before me every day. And I celebrate the milestones in other people’s lives, hoping the memories we create on those days will help sustain them in the days when half of who they are is no longer present.

One reason I work on NET cancer issues is that I don't want anyone else to face a life alone without their other half.
One reason I work on NET cancer issues is that I don’t want anyone else to face a life alone without their other half.

 

Month fifty-four

Death, Goals, Grief, Uncategorized

Month vs. year

I wanted to call this piece “Four-and-a-half years,” which is the same as fifty-four months in terms of time, but not, somehow, in meaning. With a child, we draw the line around 48 months. With death–at least with Jane’s–it appears to be different.

Jane’s life was an unequivocal success.

My father died almost a year ago. My mother died 10 months before Jane did. I lost a good friend to triple negative breast cancer just over a year ago. I have no problem talking about their deaths in terms of years. Of course I didn’t spend the last month of their lives in a hospital room holding their hands, either.

A month of deaths

The last month has been a difficult one in my corner of the carcinoid/NETs community. Half-a-dozen patients I’ve become close to–two of them significant figures in creating foundations and support groups–have killed their NET cancer the same way Jane did: by dying and taking it with them. I’ve done what little I can for their spouses and loved ones. It never seems as though it is enough.

…it appears to be different.

Nothing I do ever seems like enough. Friends tell me I can only do what I can do–that one person can only do so much. And intellectually, I can agree with them. But my heart can’t accept that. I’ve seen too much pain and too much suffering and been unable to do much to alleviate either one. My Buddhist training tells me I should take a very different lesson from that than I do. I am not a very good Buddhist.

What I wake up to

My Taoist training insists there is little constructive I can do–that waiting is. I am not a very good Taoist. The Christian part of me talks about all of this being part of the divine plan. I am a lousy Christian. If killing people with this hideous form of cancer is divinely inspired, I want no part of that divinity.

It never seems as though it is enough.

There is a sign on the wall opposite my bed. It is placed so it is the first thing I see when I wake up in the morning. It says, “It is never too late to be what you might have been.” It reminds me that the failures of the day before are no reason to give up on the work of today. It refuses to let me set down the work I have adopted as my own. It refuses to let me stop striving to embody what I believe.

A month for change

I accept that suffering exists in the world–but that does not mean I don’t try to ease it for others where and when I can. I accept that there are things I may not be able to change, but I try to change them anyway because I cannot know what is impossible until I try. Divinity can want what it wants; I can only do what my heart tells me is right. I am more concerned with humanity than I am with the needs or desires of any god.

It is never too late…

People tell me constantly how pleased Jane must be with what I am doing. I do none of what I do to make her happy.  Jane is far beyond my ability to make happy or sad now. It is not that I love her less than I did when she was alive, but our work was for–and with–the living–and my work still is.

A month of frustration

I feel frustrated this month. The anniversary of Jane’s death was much more difficult this month than last. All the deaths of the last month have taken me back to Jane’s last days over and over again.

I am more concerned with humanity…

Financially, Walking with Jane is running behind last year’s numbers. In terms of raising awareness about NET cancer, our efforts seem stalled because I can’t figure out how to extend our reach. The goals I set at the beginning of the year seem to be sliding out of reach. I’m having trouble getting pieces of writing to work–and my book on grief is the worst of it. I feel mentally constipated and my usual laxatives are not working very well. Even the garden is struggling.

Judging a life

But I am too stubborn–or too stupid–to quit. It doesn’t matter which it is. Last night I had a series of dreams about individuals solving problems that improved human lives. Most of them were nameless folks who saw something that needed to be done and did it. They were frustrated at times, too. But they kept working at whatever it was. Sometimes they solved the problem. Sometimes, they created the groundwork others built on. Sometimes, they failed completely.

…our efforts seem stalled…

At the end of Oedipus, Rex, one of the characters says we should never count a person’s life as happy or sad until we have seen the end of it. Equally, we should never consider a person’s life as successful or not until we have the whole body of that life to look at. Jane’s life was an unequivocal success. But my life is not over and no one should judge it one way or the other until it is–including me.

Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress--or at least it cannot be allowed to prevent progress.
Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress–or at least it cannot be allowed to prevent progress.

The Garden

Death, Grief, Jane, Uncategorized
My garden projects all feel like "ground under repair." My life seems the same way at times.
My garden projects all feel like “ground under repair.” My life seems the same way at times.

The garden tells a story

If one can tell the state of a man’s mind and marriage, as one of the characters in Amy Tan’s Joy Luck Club insists, my garden has told a very sad story over the last five-and-a-half years.

…and the possibilities are endless.

In October of 2009, Jane came down with the H1N1 flu. Normally, October and November were button-down months for us. We would pull out the dead annuals, divide those perennials that preferred fall separations, mulch the shrubs, clear the detritus from the vegetable garden, spread compost to let it work its way into the soil over the winter.

One thing drives out another

The flu hit Jane hard. It put her flat on her back for several days. Just as she began to recover, pneumonia sent her back to bed. On Halloween, she watched the trick-or-treaters from the window. I would not let her near the open door, afraid some chill would put her back to bed.

…October and November were button-down months…

My attention was riveted on her. I managed to mow the lawn periodically, but the rest of the yard work was beyond both of us. We left everything for spring.

The last spring

Jane stayed weak all winter, but did the spring pruning. She got up on the stepladder and cut back the Rose-of-Sharon that was–and is–the centerpiece of one bed. Normally, that was a fall project. I coaxed the vegetable garden back to life, but we bought most of the plants that year. Usually, we started the vegetables from seed so we could be certain what they were and that no one had treated them with pesticides.

We left everything for spring.

We both knew something wasn’t right. She tired easily. Every day, her ankles were swollen. She told me later there were times the world seemed to fade around her–that when people spoke, sometimes they seemed to be very far away. She kept that from everyone. She said she had promises to keep to her students.

The last summer

The garden suffered that summer. Jane’s legs were so bad she had to give up her two hours of tennis every day. Normally, I would walk for an hour while she played, then come home and weed and do the other things it takes to make a garden grow. Instead, we tried to walk together every day. When we came home, we would read and talk. The garden didn’t matter much that summer. I neglected the weeds, the rabbits and the groundhogs.

We both knew something wasn’t right.

My focus was elsewhere. I was terrified–terrified that I was losing her. I think she was terrified, too. But we hid that terror from each other. She was probably better at it than I was. I wear every emotion, unguarded, on my face.

The last fall

I did the bare and necessary minimums in the yard that fall. Walking across the lawn one Saturday afternoon my foot disappeared into a sudden sink hole nearly to the knee. It was the only time that Jane was sick that I let my anger out. The air got an earful. All the anger I felt about the cruelty of what was going on with her spewed out in a handful of words before I got control.

The garden suffered that summer.

Jane died just over a month later. The hole in the ground stayed marked, but unrepaired, until spring. I am still dealing with it.

Ground under repair

I’ve made abortive efforts in my garden every year since. The first spring, I pruned the Rose-of-Sharon. I found a hummingbird nest in it and started off the ladder to tell Jane. The realization she was not there shattered me. I went through the motions of putting some plants in the ground, but my heart was in none of it.

I am still dealing with it. 

Nearly two years ago, I started putting a fence around the garden to keep the groundhogs out. Last year, I managed to prune the plants in two of the foundation beds and plant two small trees. I kept starting landscaping projects, but never seemed to finish any of them. Every inch of every bed looked like ground under repair.

Two kinds of people

They were a perfect reflection of my life, my mind, my heart, and my soul. Their unfinished state is a perfect metaphor for every other aspect of my existence.

The realization she was not there shattered me.

A friend of mine once said there are two kinds of people in the world: those who want to die with everything done and those who want to die with a thousand things still to do. I must fall into the latter category: I have a foundation to fight Jane’s cancer that always has at least three new projects hanging fire–and whose government paperwork seems endless; I have the beginnings of two novels, a book on journalism, a book on mourning all started and in various stages of completion;  I have three landscaping projects in progress and plans for another three in mind; and then there are rooms to paint, carpet to replace, and a basement to clean out and rework into the office Walking with Jane really needs.

Something changed

There are times, even now, I am overwhelmed by all of it. But somewhere in April, something changed. Part of it was the 52-month rebirth ceremony I celebrated alone in the rain at Jane’s grave. I felt the way people say you are supposed to feel after the funeral–but never do if you are the spouse or the children. The weight lifted and I could see the world of possibility again.

Their unfinished state is a perfect metaphor…

But part of it was also finally getting into the garden as something more than a chore. I started April determined to get all the beds truly cleaned out for the first time since the fall of 2009, determined to finish the groundhog defense system, determined to finish the enlarged bed around the mailbox with the perennials I spent the winter raising from seed. Each day, I made–and saw–visible progress.

Seeing instead of thinking

In mid-April, I realized I was no longer thinking about the gardens–I was seeing them as they would be; I was sleeping the night through–and no longer awakening from strange and troubling dreams; and the lists I made of things I wanted to do had fewer and fewer tasks unfinished at each day’s end.

…I could see the world of possibility again.

I still have awful days. Sunday marked 53 months since Jane’s death and I got lost in her grave for quite a while that day. I built her a planter of white geraniums, white impatiens, and purple petunias–that last a gesture to her mother who is buried beneath the same headstone.

Seeing the future

When I came home, I did some housekeeping and moved some furniture around. But this time I was not trying to forget my pain in those things. An engineer was coming Monday afternoon to look at the house for solar power. He needed to be able to get to the attic and be able to see some things that are tucked behind the furniture.

I still have awful days.

Finally, I am seeing glimpses of the longer future and there are things I need to do to prepare for it. For both of us, it was important to live our values and beliefs. Our gardens were a symbol of those things–as those solar panels on the roof will be.

The garden and the soul

Our gardens did not just feed the body, they fed our souls. I forgot that somewhere in the last few years. Neglecting them was evidence of how badly injured my soul was when Jane died. They’ve tried to nourish me despite how badly I’ve neglected them. And now that I am truly paying attention again, the dividends are greater than I could have imagined.

…I am seeing glimpses of the longer future…

The ground is still under repair–both in the garden and in my life. Truth be told, they always were–and they always will be.

The garden universe

But if a garden is truly the image of a man’s soul, then mine seems to be in healing and growing mode: the stone paths in the vegetable garden are nearly finished; the peas and onions and radishes are out of the ground, the tomato transplants are doing well and the eggplant is ready to move from the cold-frame to the garden; the day lily transplants have taken hold, as have the coneflowers and alyssum; last year’s hydrangea and lilies have sprouted; the azaleas are in bloom and the peonies have formed their flower buds.

The ground is still under repair…

For the first time in years, my heart feels light–and the possibilities are endless.

The vegetable garden rebuilding project is nearing completion. I still have some stone to move--and I may need more than I have. But I am making progress.
The vegetable garden rebuilding project is nearing completion. I still have some stone to move–and I may need more than I have. But I am making progress.

Ring on my finger

Death, Grief, Jane, Uncategorized

I walked off a cliff yesterday

Jane didn’t want to be buried with her wedding or engagement rings. She insisted I take them off when she died. And I did that. I told her that when she died, I would move my own wedding ring from my left hand to my right after I took her wedding ring off her finger. I didn’t do that–until yesterday, the 52 month anniversary of her death.

Jane put it on my finger…

I’ve felt that moment coming for a few months now. In February, I listened to a story on the radio in which a woman talked about the decision to take off her wedding ring after her husband’s death. Like me, she had not done it immediately. But, eventually, she realized she was no longer the person she had been–and that her ring no longer defined or even symbolized who she was. It was time.

Ring of denial

The day Jane died I fully intended to move my ring to my right hand. But I got caught up in the notifications and the paperwork–and besides, I told myself, the ring was too small to fit on my right hand; it would need to be resized first. The truth, of course, was I was not ready to stop being married–I was not ready to be a widower.

She insisted I take them off when she died.

So the ring stayed where it was for the wake and the funeral–I would make the switch at the cemetery when we left the grave. It didn’t happen then either–there had been no time to get the ring resized. At least that is what I told myself. The fact I wore Jane’s wedding ring and engagement ring on a chain around my neck for the next several months tells the emotional state I was in and why my own ring stayed right where it was.

Ring of discovery

The only reason I stopped wearing her rings was I was terrified I would break them. Every time I picked up something heavy it crushed the rings into my chest. They live in my safe deposit box now. I know no one will ever wear them again while I am alive. My executor will have to figure out what to do with them–and the rest of Jane’s jewelry.

…it would need to be resized first.

I thought about taking the ring off on our anniversary, on Jane’s birthday, on the first anniversary of her death. On the third anniversary of her death, I even went so far as to talk with a jeweler about how long it would take to get the ring resized. Periodically, I would wear the ring on my right pinky, where it fit loosely, just to see if I could bear it. Then it fell off in the back of the car when I was putting some plants in. I thought I had lost it–and realized how unprepared I was for that.

The power of numbers

September 2 of last year was our 25th anniversary–the anniversary Jane had always joked we would never get to unless we counted in dog years. I thought, briefly, about making the switch then. But even the month leading up to that date told me what an emotional tsunami the actual day would be. I took a single-serve bottle of champagne to her grave that day. I drank half and poured the rest above where her casket is buried.

 I thought I had lost it…

Fifty-two is an important number for me for many reasons. It is the number of months between death and rebirth in my religious practice. It is the day of the last readings for the dead because on that day one leaves the garden to become a child again in the physical world.

Preparations

An earthly marriage may survive death, but it should not survive rebirth. That thought came to me on Monday when I woke up. Perhaps I dreamed it. Perhaps Jane said it to my soul in the night. But I knew wherever it came from, it was true. It made this week, which I already knew was going to be hard, much harder.

I drank half and poured the rest above where her casket is buried.

On Thursday, I took my ring to the jeweler and left it there. That afternoon, they called me to say my ring was ready. It slid on easily but did not want to come off. I knew then it was the right decision. Eventually, I got it back on my left hand for one final day.

Rebirth Day

Friday was a dismal day of rain and fog and raw cold. I collected three stones from the yard, placed them in the car with the books for the final readings, my walking stick and my prayer shawl. I picked up the flowers I place on her grave each month. I drove to the cemetery.

I took my ring to the jeweler…

In the slow drizzle, I rearranged the Easter flowers, put the new flowers in the cemetery vase I had brought with me, and placed the stones. I donned my shawl and placed my walking stick against the gravestone. I did the formal readings. The pages curled in the dampness.

Ring moment

I set the books aside. I moved my ring from my left ring-finger to my right ring-finger. The drizzle diminished to a mist. I talked with Jane for a few minutes, then left three kisses on the stone above her grave with four “I love you”s.

Friday was a dismal day of rain and fog and raw cold.

As I turned to leave, a sudden wind came up and slid the shawl gently from my shoulders as Jane said good-bye. I laughed then. It was so like Jane. She always lightened even the most solemn or difficult moments.

Aftermath

I came home. I worked on some Walking with Jane things, did some reading, watched Gene Wilder and Richard Pryor in Silver Streak. My left hand feels funny where my wedding ring lived for 25 years, seven months and eight days. My right hand feels funny because of the unaccustomed weight of that ring. Both hands look funny.

I laughed then.

Until yesterday, I was still a husband, for all that Jane was 52 months dead. Today, I am a widower–and the world feels different.

Everyone is different

This is not to say that taking off a wedding ring is a magical act that immediately alleviates grief and ends all the emotional difficulties that go with the death of a loved one. I’ve had to stop several times in writing this because I could no longer see the keyboard or the screen through the tears. I’ve had to stop other times because the emotions became too strong for words.

…yesterday, I was still a husband.

I know several people who have worn their wedding rings far longer than I have and have accepted their widowhood in ways I still haven’t. For me, this morning, I see my refusal to move my ring as the symbolic denial of Jane’s death that it was. But my life is defined by symbols. I imbue things with symbolic power far beyond human norms. Not everyone does that.

Emotions and me

For most people, I think, a ring is a ring and a grave is a grave. For me, Jane’s grave is an anchor for my grief. That anchor allows me to function more or less normally in the outside world. When grief threatens to overwhelm me, I can go there in my mind. And when I stand there I can let myself feel the torrent of its soul-shattering force without being shattered by it. Like the Japanese characters in Shogun, Jane’s grave became, for a time, a box I could place my grief in when a situation demanded my focussed attention.

…my life is defined by symbols.

I don’t deal well with strong emotions, either in myself or others. But I am a very emotional person. I can either find a way to control the release of my emotions or give them full sway and let them destroy me and everyone and everything around me. The result is that I can come across, on first encounter, as cold and distant–almost heartless. Eventually, people begin to understand that cool logic is a coping strategy that makes it possible for me to function.

The power of symbols

I surround myself with symbols. In fact, nothing that remains in my life, other than people, escapes evolution into some kind of archetypal symbol with its own purpose. A hat and coat are more than mere protections against sun or cold. My dress coat, for example, is a representation of Jane and my grandfather, both of whom protected me from cold far worse than any winter wind can conjure. When I put it on, I feel their arms embracing me with a different kind of warmth.

…that cool logic is a coping strategy…

Each plant, each wreath, has a story and a meaning. Its placement in the room or on the door has a purpose that goes beyond the decorative. Giving away even the least used of Jane’s clothes was difficult because each was a part of her story–and of our story together.

A circle of gold

But a blouse, a plant, a piece of furniture, is not a wedding ring. Over the course of our marriage, my wedding ring never left the finger Jane put it on. Until the morning of her heart surgery, when she had to take it off against the possibility of her hand swelling, Jane’s had never left her finger either. She insisted no one but me would ever take it off–and that morning, I did.

Each plant, each wreath, has a story and a meaning.

My ring is a simple circle of gold. There is nothing physically fancy or remarkable about it. But Jane put it on my finger, just as I had put hers on her finger. Only she should have taken it off my finger. In her absence, it took me 52 months to figure out how and when and why to do so.

If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for for 25 years, seven months and eight days.
If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for 25 years, seven months and eight days.

Difficult decisions

Death, Jane

Decisions Jane made

Some of you reading this are alive today because of a series of decisions Jane made in September, October and November of 2010. Some of you who have just been diagnosed will also benefit from those decisions–as will some people who have not yet been told they have carcinoid/NETs. The day Jane died one of her doctors told me Jane’s willingness to push beyond where she might have drawn the line had enabled them to double the sum of all knowledge about her particular form of NET cancer.

…even when we are dying.

In addition, we learned a great deal about carcinoid heart disease and how to deal with the aftermath of heart surgery in carcinoid patients. At least one hospital changed its protocols based on what they learned from Jane’s experience. They tell me people are alive today because of that.

The decisions people make

As I was reminded in Part 2 of the PBS series “The Emperor of all Maladies,” much of what we know about cancer and how to drive some cancers into the deep remission that at least appears to be a cure, came about because of the decisions of some cancer patients to put their lives on the line for science. Drugs like Herceptin and Tamoxifen didn’t find their way into common use by magic. They require knowledge and research and–ultimately–human beings willing to take a chance on a formula untried outside a petri dish or an animal study.

They tell me people are alive today because of that.

I remember clearly our first trip to Dana-Farber. I remember the drive and the elevator ride. I remember sitting in the waiting room, going over the questions we were going to ask. And I remember a young woman approaching us to ask Jane if she would give them an extra vial of blood so that they could add it to the samples they were studying in an ongoing attempt to understand NET cancer.

Making decisions

I remember Jane being hesitant at first. Her most recent blood draw, two weeks before, had been horrible. Her arms were puffy from fluid retention from the leaking valves in her heart. That made finding a vein an unpleasant adventure that only became worse in the succeeding weeks. They had almost had to milk the vein to get that sample.

I remember sitting in the waiting room…

In the end, the scientist in her won out. We had learned enough about carcinoid/NETs in the three weeks since her diagnosis to know how little anyone knew about the disease. We both knew there was little anyone could learn in time to help Jane, barring a miracle. But there was a moral imperative that had ruled both our lives for decades: Knowledge matters–and the pursuit of some kinds of knowledge is worth almost any cost.

Decisions to help

I can’t say where that imperative came from for either of us. Nor do I know when it was first evidenced in Jane’s life. In my own case, one of my most vivid memories of early childhood was taking part in the first mass polio inoculation in Pittsburgh in the early 1950s. My parents took us there, knowing there was a chance the vaccine–which may still have been in trials at that point–might not work or, worse, might give us polio.

In the end, the scientist in her won out.

There are several things that stand out in the book on which the PBS series is based–as well as in the series. The greatest of those is the raw courage of cancer patients and their caregivers–parents and spouses, mostly. We would be nowhere in cancer research without their willingness to try something new–even if that something new might kill them or their child–or might be a placebo with no more curative power than a lump of sugar.

Impact of decisions

Without those kinds of risk-takers, childhood leukemia would still kill nearly 100 percent of those children. Today, 90 percent leave the hospital cancer-free. Without those risk-takers, every form of breast cancer and lung cancer would still be a death sentence. Without those risk-takers, there would be no hope for those who deal with cancers for which we do not yet have a cure–or anything that looks like one.

…the raw courage of cancer patients…

It is not an easy thing to volunteer for a drug trial. Even when one is not in a double-blind trial, there is no certainty the treatment will work–no certainty that the dose one receives won’t prove fatal. Even when all the laboratory work says something should work, should be safe, there is no way to be sure. Not every experiment works the way we think it will.

The decisions we make

But if we are ever going to beat NET cancer–or any cancer–every patient needs to confront the disease on two levels. First, we need to work on curing ourselves. That means staying positive and taking care of ourselves, mentally and physically. But we also have to be willing to think about making sure the doctors and researchers learn all they can from our particular case, even when we are dying.

It is not an easy thing to volunteer…

That’s what Jane did. As a result, she moved things forward for many others. I hope I can find the courage to do likewise when my time comes.

Jane made a series of decisions that have made a difference in the lives of others. The decisions you make may have a similar impact.
Jane made a series of decisions that have made a difference in the lives of others. The decisions you make may have a similar impact.