Category Archives: Jane

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.

 

 

Conversation matters

Death, Jane

An important conversation

Jane and I were not obsessed with death. If anything, we were too busy living to spend much time on the subject. But once every year we took a portion of a day to talk about life-threatening medical issues and what we wanted done if we were incapacitated for some reason in a way that left us unable to make end-of-life decisions for ourselves.

Have the conversation.

That discussion became considerably more intense in the days leading up to the surgery to replace the valves in her heart the NET cancer had destroyed. At the best of times, those conversations had been difficult. But we saw them as necessary long before we heard the word carcinoid–and they became even more necessary as her disease progressed.

We all live with death

Neither of us feared death. Nor did we see it as an immediate threat when we first began having those conversations in the months before we got married. Death, for us, was a piece of life–but a piece of life in the distant future. That didn’t mean we did not prepare for it as best we could. Neither of us wanted the other to have any questions about where the lines were, though, if it came on sooner than expected.

Jane and I were not obsessed with death.

As I wrote recently, death is one of the elephants in the room for NET cancer patients. But it is an elephant in the room for most Americans. It is a thing very few of us are comfortable discussing. It is as though we think that by not talking about it, we can avoid it.

Knowledge matters

After Jane’s surgery, she spent four weeks in a cardiac intensive care unit. On three separate occasions, I had to make decisions about her care because she was not in a position to make those decisions. Someone who is comatose can’t answer questions about her care. I was very glad we had discussed, as precisely as inexperienced people can, what it was she wanted done under those circumstances.

Neither of us feared death.

I discovered that the land at the edge of death is far more murky than either of us could have imagined. We had seen it as a place with clear black and white boundaries. We could not have conceived the number of shades of gray that inhabit that place until we had seen them. If intubation will buy the time it takes to solve the riddle of potentially life-ending falling blood pressure and respiration, is it really an “heroic measure?” And when the only thing keeping the body alive is a pacemaker, is there a point to letting it continue to circulate the blood?

Decision-making about care

Despite all the conversations we had about what to do, none of the decisions I confronted in those final 28 days was easy to make. But I cannot imagine having to make them without those conversations we had about where Jane saw lines–about how and when she wanted her life to end. I tried to honor what she wanted–which was not necessarily what I wanted.

…the land at the edge of death is far more murky…

Yet I also know that the vast majority of the patients on that floor had never had a conversation with anyone about what they wanted the end of their lives to look like. Nurses and doctors told us over and over how lucky we were to have discussed those issues–that two-thirds to three-quarters of the patients in that cardiac unit had never had a conversation with anyone about what they wanted if they were in a coma with no hope of recovery.

Knowing where the lines are

And I saw the results of those failures to communicate on this vital subject. The husbands’, wives’, sons’ and daughters’ plaintive tears and cries are etched on my brain forever. They didn’t know what to do–and there was no one who could legally–or morally–tell them.

I tried to honor what she wanted…

Jane and I drew our lines in different places than others might–than, likely, you who are reading this will. That doesn’t matter so long as you–as caregiver or medical proxy–know where the lines are for your loved one–and you are willing to carry out their wishes. The only way to know those things is to have that awkward and difficult conversation about end-of-life issues–and I’m not talking about funerals and burial plots.

The conversation matters

If you have advanced NET cancer you owe it to the people you love to have a frank discussion about when it is time to let you go. If you are the caregiver for a patient, there are things about what that person wants that you need to know before they are unconscious and unable to communicate their desires. You can only get that information by talking with them about those realities–no matter how uncomfortable that discussion makes you both.

I’m not talking about funerals and burial plots.

When Jane was in her first coma, someone told me she would awaken from it–but that at some point I would have to make a decision about letting her go based on the quality of life she would have if we continued. When Jane descended into her last coma, one of her doctors reminded me of what we had both said to all of them over the preceding weeks–that when a fighting chance became no chance, that it was time to make her comfortable and let her go.

The value of knowledge

So I did. And I let her go with a clear conscience, knowing she was going to Death on her own terms.

You can only get that information by talking…

The days since have not been easy. I miss her every day. But I know things would have been far more difficult if I had not known what she wanted.

Have the conversation.

Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions--even though the conversations were uncomfortable.
Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions–even though the conversations were uncomfortable.

Impossible? At 51 months, nothing is

Goals, Grief, Jane, Marketing NETs, Uncategorized

Fever dreams

I had a 101.2F fever ten days ago, on the 51 month anniversary of Jane’s death. For the first time, I was not physically at her grave on the tenth of the month. The flu saw to ending that streak in a way no amount of rain or snow or heat or cold had succeeded in doing.

…we need to work more effectively together.

There is a line in The Who’s Tommy about sickness taking “the mind where minds don’t usually go.” My mind took that journey as fevered day turned into fevered night and fevered day for the better part of a week. I’m not sure what I learned from that reminder of mortality, only that something feels different.

The empty grave

I went to the cemetery Saturday, the first day my fever went below normal for a good portion of the day. It was rainy and raw and I gave myself a small relapse that night as a result, for all that I only stayed long enough to walk from the car to Jane’s stone, leave three kisses there, and walk back to the car. For the first time, the gesture seemed empty and almost silly.

…something feels different.

I had no sense of her presence there for the first time since she died. It felt as though her soul had moved on. Maybe it has. Maybe it is time I started thinking about my life without Jane as something beyond this endless war against NET cancer. Not for the first time did I remember that this is not the life she wanted for me. But it was the first time I thought, “maybe she’s right.”

Mourning and killing

For 51 months I have focussed on just two things: mourning Jane and killing NET cancer. Oh, I’ve redone some rooms and worked on expanding some garden beds; I’ve sorted through Jane’s clothes and possessions and sent them on to others where they could do some good; I’ve travelled to Seattle to visit family; but each of those things has been about mourning and dealing with loss.

…the gesture seemed empty and almost silly.

I’ve done some social things as well. But all of those have either been centered on NET cancer or served as a reminder that Jane is not here and that I am truly alone without her, no matter how many people are around me–and no matter how much they are focussed on me and trying to get me to feel better–to forget, even for a little while, the treasure I have lost.

The first burden

A grief counselor suggested recently that I take too much responsibility on myself–that somehow I make myself responsible for all the ills in the world–and for solving those ills. She’s right. Every time someone dies of NET cancer, I feel responsible for that death. “If only you’d worked a little harder, they wouldn’t be dead–we’d have a cure,” the little voice that imitates Jiminy Cricket mutters in my ear.

…I am truly alone without her…

The rational me knows better, of course. I know precisely how that sense of responsibility was born back when I was a child. It is the burden every eldest child carries–especially those from large families. When a younger sibling did something wrong, even if we were not physically present, it was somehow our fault. We were supposed to set the example–and when they failed it was because the example we set was not good enough.

The second burden

My parents added another layer of responsibility to that. Periodically, my brothers and I would be set some task–cleaning the cellar, mowing the lawn, something long and involved. I would do what seemed my fair share of the job–whatever it was–more quickly than whomever I was working with. But if I stopped there to let them do their share, I was told, in no uncertain terms, that I was to work until the job was finished–even if it meant doing more than the others.

…the little voice that imitates Jiminy Cricket mutters in my ear.

I grew up with the idea, then, that I was responsible for everything–no matter when I started and no matter how much of the job I actually did. I grew up with the idea that I was responsible for everything that happened both in my life and in the lives of everyone around me.

The responsible and the impossible

The result is, I set impossible standards for myself and ridiculous goals for anything I put my hand to. There is no such thing as “good enough.” Anything less than the highest standard I can reach is unacceptable.

…I was to work until the job was finished…

That I have rarely failed to reach whatever goals I have set–no matter how insane they appeared to people in the outside world–has reinforced the idea that nothing is impossible if I can put my mind to it and recruit enough of the right people to make it happen. Arguably, Jane’s death was the first time I had not found a way to outfox what any sane person would see as a no-win scenario. In some respects, the work I have done since on NET cancer could be seen as an effort to correct that failure.

Facing the impossible reality

But I have set myself a seemingly impossible task, especially in the way I have approached it. Just keeping up with the research on NET cancer is a significant time and energy commitment. Translating that new information into laymen’s terms requires another not insignificant amount of time and energy. Getting that information out to people who need it through this website, social media and podcasting, brings just that piece of this work to a 40 hour a week job.

…I was to work until the job was finished…

Fundraising and awareness raising consume similar amounts of time and energy. Record keeping, social media, public relations, team building, grant reviews… There is a reason the American Cancer Society employs the number of people it does–a reason that the household names in cancer funding employ the staffs they do.

Impossible isolation

There are at least a dozen small foundations working on NET cancer. Most are one-or two-person operations established and run by individuals whose lives have been touched–or destroyed–by NET cancer. We are, each of us, determined to bring this beast down. But too much of the time, we are working alone. We are isolated–and that isolation weakens the effect of our efforts.

…I have set myself a seemingly impossible task…

And even the bigger foundations–the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–are hamstrung in their efforts by the tiny size of their staffs. I know what it takes to organize a conference, do a major mailing, maintain a website… What they do–what all of us do–is nothing short of miraculous.

Creating a new road

But there is an awful lot of weight on a very small number of shoulders. And sometimes it seems like we are all trying to carry the full load by ourselves. We cross-post some things on Facebook, Pinterest and elsewhere. But we don’t seem to talk to each other very much beyond the needs of the moment.

…isolation weakens the effect of our efforts.

I’m probably the worst of us when it comes to that. It was the mistake I made at the beginning–and it is a mistake I have continued to make since. It has left me physically and emotionally exhausted–and when I look at what I wanted Walking with Jane to be and what it has become I know that I cannot continue as I am.

Recruiting stories

Back in January, I wrote a series of pieces on goals for the year ahead. Among those goals was the need to develop closer ties among all the groups engaged in the fight against NET cancer so that we could all do a better job. It is still an item on the to-do list.

…we don’t seem to talk to each other very much…

But we need to do more than simply unite the groups working on this in the US and elsewhere. We need to get patients and caregivers far more involved than they are now in the public relations, fundraising, and awareness sides of this. I tell Jane’s story constantly–and it is a powerful one that rarely fails to grab whatever audience I tell it to and move them to some action.

Coming together

But each patient, each caregiver has a similar story to tell–and they are stories we need to tell–and tell to the broadest audience we can reach.

I tell Jane’s story constantly…

There is a stone on my desk with a quote from Helen Keller etched into its surface: “Alone, we can do so little; together, we can do so much.” We need to stop working in isolation; we need to work more effectively together.

Together, we can do anything--nothing is impossible.
Together, we can do anything–nothing is impossible.

Preparing for a long walk

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

Hat in hand

Dear friends,

Jane and I usually liked snowstorms. They often meant an unexpected day off from work and an extra hour or two snuggling under the covers. We would have a leisurely breakfast, then go out to shovel together. I would clear a path to the drift from the snowplow at the end of the driveway and work my way through that mountain while Jane attacked the path to the front door before starting on the snow in the driveway.

We are making a difference…

We made a game of it, her working from one end and me from the other. When we finally met somewhere in the middle we would hug and kiss as though we had been separated for days rather than an hour–and that the obstacle between us was greater than a few feet of snow.

Missing my other half

Clearing the snow from the driveway and walks is not the same since Jane died of NET cancer in December of 2010. Now it is just a chore I try not to think about as I do it. Every snowstorm is laced with too many memories. The hot chocolate doesn’t taste the same when there is no one to share it with.

We made a game of it…

Doctors and researchers learned a lot from Jane’s final struggle with NET cancer—and they have learned a great deal more since. The use of liver embolization has become relatively common in assaulting NET cancer tumors that have metastasized to the liver. We have promising new drugs in trials that may better slow the progress of the disease and its debilitating symptoms.

On the near horizon

Later this year, a Phase 2 trial on an immunotherapy treatment that seems to offer a chance of a cure for some patients will begin. A new scanning technique using Gallium-68 is being tested and is detecting NETs we were not able to see before—as well as giving greater clarity to those we can see using the relatively new Octreoscan developed since Jane’s death.

We have promising new drugs in trials…

Those new scanning methods, combined with greater awareness in the medical community, have increased the number of NET cancer cases being diagnosed every day. Four years ago, we were finding 34 new cases a day. Now, 40 new people will hear they have NET cancer in the US today. Another 40 will get that news tomorrow and another 40 the day after that.

Cost of a cure

And while we can offer them more hope than we could offer Jane 55 months ago, we can still not offer them a cure. It is only a matter of time before the number of deaths attributed to NET cancer every day begins to increase to match the number of diagnoses if we don’t keep moving the research forward.

Now, 40 new people will hear they have NET cancer in the US today.

But research costs money—lots of it. And while drug companies and government have increased their support a little bit in recent years, we are still spending barely $8 million a year on a form of cancer that is so nasty even patients are sometimes reluctant to talk about it and its symptoms.

Walk the walk

That’s where you and I come in. I’m not wealthy—and neither are the vast majority of you who will receive this letter. But fighting a cancer whose research has been so poorly funded for so many years, every dollar counts.

…research costs money—lots of it.

And every dollar you donate through this letter will go straight into carcinoid/NETs research at the Dana-Farber Cancer Institute through my Boston Marathon Jimmy Fund Walk. Again this year, I will take on the 26.2 mile course in Jane’s memory–and in support of NET cancer patients everywhere. Please, give what you can.

Change the future

We are making a difference with every dollar every day. And some day, I really will stand at Jane’s grave and tell her we’ve killed her cancer once and for all—that no one is going to die of it ever again.

Please help us make that day happen sooner with your donation today.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Team Captain, NETwalkers Alliance

p.s. An anonymous donor has again offered to match the first $5000 I raise between now and June 30. That means when you donate to my Boston Marathon Jimmy Fund Walk now, your donation is effectively doubled. Please take advantage of this generous opportunity.

p.p.s If you cannot make a donation, please share this letter with people you know and encourage them to get involved. Or, if you’d rather make a donation for NET cancer elsewhere–please do so. I want this thing dead.

p.p.s Of course if you’d like to walk with us, either for real or virtually, you can sign up for that here.

The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic--the research is real.
The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic–the research is real.

For Jane, Valentine’s Day, 2015

Jane, Poems, Uncategorized, Valentine's Day

For Jane, Valentine’s Day 2015

I weep. The snow encases grief in silent white
Cement that crumbles. Cold ignites the frozen tears
That dry the rotting purpose of silent noisome light.
 
My words are paper matches flung against the starless night
And sunless days of deepest space when all is gone
To less than nothing. Nothing moves and nothing sings.
 
My soul aches silence none can hear or feel or see;
That none can taste or smell or sense. The maggots chew
The sounding strings and chew the echoed body’s boards.
 
Five times this day has come. Five times this day has passed.
For fifty months this salt has seared my days and nights
And tried to cleanse my heart and tried to scald my mind.
 
The snow may fall, the wind may rise, the cold may pierce
And shriek the void; still, dawn will come and I will rise
And sing the song and dance the dance ’til time and space both end. 
 
All my love, always and all ways,
Hubby
I wrote a poem for Jane every year on Valentine's Day and on our anniversary.
I wrote a poem for Jane every year on Valentine’s Day and on our anniversary. I still do.

A snow covered grave at 50 months

Death, Grief, Jane

Plodding through the snow

I went to visit Jane’s grave today. To get there, I had to climb over a three-foot high drift the plow left behind when it cleared the narrow road through the cemetery. Then I trudged through the 10-12 inches of powder yesterday’s storm dropped, tramping it down so that others can get to the headstones of their loved ones more easily.  I should have brought a shovel.

…that feels like moving forward.

The snow has reached Jane’s name on her family’s stone.  The snow is actually deeper than that but the wind has hollowed out a space around each grave in that section of the cemetery. It looks strange. The cemetery is at the top of a hill and the wind blows through there at a pretty good clip in the winter. I put some Valentine’s Day decorations on her grave but I didn’t stay too long. It’s been colder there on other days, but on the best of winter days my body won’t stay there long. I can hear both Jane and her mother chiding me for standing out in the cold.

Changing spaces

As these monthly anniversaries go, today was not bad. Last month, I had trouble getting out of bed; every minute of the day was a struggle. I spent yesterday shampooing the rug in the dining room and hall. This morning, I moved the plants and furniture back in place and decided I still don’t have the living room set up in a way that works.

 I should have brought a shovel.

Truth be told, the way Jane and I had it set up originally was just about perfect. Unfortunately, I discovered very early on that I couldn’t live with it set up that way after Jane died. In fact, I’ve redone every room in the house in terms of how the furniture is arranged–and in some cases have changed the purpose of the room as well. What was our study is now my bedroom. The room Jane used for her crafts is now a combination library and home office. The bedroom has become a TV room that doubles as a guest room and a place to keep Walking with Jane items we use for various events.

Mixing pasts, presents and futures

And I’ve been gradually repainting all the rooms in the house, changing the colors from the careful neutrals Jane and I chose when we built the house to warmer, darker tones. It’s not that I am trying to expunge her presence–I have photographs of Jane scattered throughout the house, as well as her cross-stitch and other craft projects.

…I’ve redone every room in the house…

The houseplants we both loved still dominate the living room and dining room as they always have, though I have rearranged them as they’ve grown. And though I’ve replaced the mattress in the bedroom, all the furniture we bought when we first married is still part of my bedroom–and I still sleep in our bed every night, though never on her side of the bed.

Different people, different responses

I know people whose houses have not changed in any way since their spouse died. I know others who sleep on a couch or in a chair at night because they cannot face sleeping in the bed they once shared with their husband or wife. I know others who gave away every stick of furniture they had purchased together because living with those constant reminders was more than they could handle.

…I still sleep in our bed every night…

I know people who sold their house for much the same reason–and others who were forced to sell because with a single income they could not afford to live there no matter how much they wanted to hold onto those memories. There is no magic formula to dealing with grief–no right answer. There is only the answer that works for you—-and that answer is different for every person who grieves.

Moving  thoughts

There are times I think about moving. This house and its yard are too big for me to handle by myself sometimes. And it has too many stairs for me to deal with when I get old. But we spread the soil on this land, planted the grass and the shrubs and the trees. We installed the suspended ceiling in the basement and hung the sheet rock on its walls. We spent hours looking at chandeliers and light fixtures and deciding on countertops and cabinets. I am not ready to abandon those memories–and I am not sure I ever will be.

…that answer is different for every person who grieves.

But I can’t live in some kind of unchanging shrine either–a place where everything is precisely as Jane left it. I want my memories but I don’t want to be overwhelmed by them every day. For fifty months now I’ve tried to reestablish a sense of balance in all areas of my life. Part of me thinks I haven’t been very successful at that. But then I realize that Jane and I spent 23 years together, growing closer and closer every day until, at the end, we truly were Aristotle’s single soul in two bodies.

Questions of balance

And then she was gone–and everything was different. Fifty months is no time at all compared to the years we spent together as a singular entity. We made every decision together, did every chore together–lived our lives as together as two people can be. When Jane died, I suddenly did not know who I was anymore. I’m still trying to figure that out.

I am not ready to abandon those memories…

But change is the nature of life. The carpet and linoleum are beginning to show their age. I replaced the faucets in the bathroom and the kitchen over the last year. I’ve expanded the vegetable garden and enlarged a flower bed. I reworked the sitting area under our deck, digging out the sod and replacing it with stone. I’m thinking about setting up a bee hive, planting some fruit trees and creating a large bed of wild flowers.

Moving forward vs. moving on

People talk about moving on after someone dies. The truth is, often we don’t move on. The further I get from Jane’s death, the more I am convinced I will not “get over it” in the way that most people mean that phrase. But we can move forward–which is very different from “moving on” or “getting over it.” In fact, we have very little choice about moving forward. Life forces us to do that by its very nature.

Fifty months is no time at all…

Faucets do wear out. Lawns do have to be mowed. Driveways do have to be resealed. Our bodies do have to be fed and cared for. We have to cook and clean and do the routine little things that in the depth of grief we do not want to do–but that we do anyway.

Moving through the snows of grief

My muscles ache tonight. I’ve moved over four feet of snow in the last two weeks. I’ve moved every plant and piece of furniture in the living room and dining room at least twice in the last two days. I’ve run the rug machine until my arms hurt and my hands have blistered. There is more snow in the forecast for Thursday and again for Sunday.

The truth is, often we don’t move on.

But for now, the snow is shoveled and half the living room looks and feels right to me. For 50 months after Jane died, that feels like moving forward.

Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane's death today.
Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane’s death today.

 

 

How long it takes to grow a new heart

Death, Grief, Jane

The topiary heart

Jane and I loved house plants in the winter. They brightened things. Jane got into creating topiaries at one point and created a heart from an old coat hanger and an English ivy. When Jane was in the hospital, I rarely got home, but when I did I made sure everything got a good drink. When I came home after she died, we had lost just one of the plants–the topiary heart. The symbolism was not lost on me.

…I have learned, again…to let the dying go.

But in another pot there was a single tiny sprig of ivy that had survived. I took the heart frame and moved it into that pot. I have tended it carefully since then. Forty-nine months after Jane’s death that single strand has grown to cover 4/5s of that frame. It is not as dense as it was when Jane was alive–that will take a couple of circuits–but it has nearly filled the frame.

The real heart

I tell myself my heart will finally be healed, perhaps, when that frame is filled again with green life. A couple more sprigs have appeared in that pot. Eventually, they will grow long enough to join that first strand and strengthen that heart.

The symbolism was not lost on me.

Not long before Jane’s cancer came to light, I was reading a story about the Dragonriders of Pern. One of the Riders loses his dragon and the children ask why he is so sad. They are told that if a man or woman loses their dragon they lose half their heart. One of the children tasks how long it takes for the missing piece of heart to grow back. None of the adults have an answer.

The power of symbol

When Jane died, I suddenly knew what it was to have only half a heart–and I had no idea how long it would take for that piece of my heart to grow back–or if it would do so at all. That silly topiary tells me each day how to regrow my heart–and reminds me every day that it is possible. It takes patience and careful tending–but it can be done.

None of the adults have an answer.

I don’t expect ever to love again in the way that I loved Jane. But I know that, some day, my heart will be fully healed. It will not be the same as it was before. There will be scar tissue there that is never quite right. A part of me is dead and beyond recovery. But I will grow strong again and I will love again. Truth be told, I have never stopped loving–even in the worst hours of grief. I will love Jane until I die–and even then I will still love her.

Lessons of love and death

And I will love the world and every creature in it–because I always have. The pain of loss makes us forget our true nature at times–but forgetting does not mean that nature vanishes or ceases to be. When we are born, the agony of birth makes us forget where we came from. But that pain does not leave us empty of who we are, nor does it change where we came from or where we will go.

A part of me is dead and beyond recovery.

Jane’s death cost me a great deal. It has taxed me physically, mentally and emotionally to the limits of my strength–and sometimes it has seemed like beyond that. And it still hurts–hurts more than anyone who has not had a similar loss can know. But it has made me a better man than I was. It has made me more compassionate, more patient and more driven to be of help than I was before. I understand now things that I really only knew in theory before–as much as I truly believed I understood them.

The price of a new heart

We each have a road to walk and things to endure. We learn from every thing and every being we encounter–and from every experience. Jane paid a hideous price for the knowledge she gained from her illness–and I have paid a hideous price for what I learned from losing her and what I have faced every day since. I cannot dishonor her sacrifice or my own by turning my back on what I have learned–or by failing to share those things with those who need that knowledge.

Jane’s death cost me a great deal.

I have learned what it takes to love those around you when what you really want to do is hate them for the things they still have that you do not–and that you will never likely have again. I have learned what it takes to hold a broken soul in your hands and will it back to life and health. And I have learned, again, in Ursula K. Le Guin’s words, to let the dying go. Most importantly, I have learned what it is–and what it takes–to grow a new heart.

Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.
Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart Jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.

Four years without Jane

Death, Grief, Jane

Four years of avoiding

I picked up my sister-in-law this morning just before 8 a.m. We drove to a local mall where we walked for about 90 minutes. We talked about a number of different things as we paced along–her father’s health, the weather, the economic climate locally–but there were two things we didn’t raise at all, though I am sure we both thought about them. She is going in tomorrow for a biopsy of a suspicious lump. I am going along to keep her company. That came up–but only briefly–when I dropped her off.

It was raining this morning. It was raw and miserable. She commented on that and I said the weather suited my mood. That was as close as we came to what happened four years ago today. But it was the first thing in my mind when I got up this morning.

Four years of traditions

I drove home, showered and shaved. I had soaked some raisins in cherry brandy overnight in preparation for putting together a pair of fruitcakes today. Jane and I made some every year from my old family recipe. I’d pried it loose from my parents a couple of years after I graduated from college. I may have the only copy of it that still exists. The world has stopped caring about fruitcake. And given how bad the store-bought ones were, I’m not surprised.

Making a homemade fruitcake is not for the faint of heart, however. The ingredients can be–some of them–hard to find. And most of them are not cheap. Worse, the ingredients have to be prepared in five different bowls before being combined–and the final mixing requires a strong arm. There is comparatively little flour in a good fruitcake–just enough to bind the fruits and nuts together.

Four years at a grave

The baking takes about two hours in a slow oven. While the heat transformed the sticky batter into something edible, I made my pilgrimage to the cemetery. I took a Christmas basket with me made up of fake Poinsettias and real pine cones and pine branches. It joined the wreath I had placed there after Thanksgiving. There was a soft rain falling and a light breeze. Other than me, the cemetery was empty. Not even the birds were interested in being out there today.

I didn’t care. I wasn’t there to talk with the living or listen to the birds. Four years after Jane’s death, I still hurt–I’m still angry–I’m still frustrated. Of all the cancers she could have had, why did it have to be this one–the one without a cure? The one with endless diarrhea? The one with endless gas and bloating? The one that destroys your heart? Part of me knows the answer to those questions, but the answer brings no real comfort.

Four years of growth

There is some lichen beginning to take root on the stone that marks the grave she and her mother share–that eventually her father and sister and I will share. Part of me thinks I should clean it off come spring. Part of me thinks it gives the granite more character. It is most visible on cold, wet days–like today. It is a pale green against the dark gray.

I left three kisses and four touches on that stone as I left–as I do on the tenth of every month, on every Saturday–and on every other one of the important days on our calendar. Right after she died, I tried to go there every day that I could. I took flowers and small stones and other decorations with me. Those visits tore my soul to pieces.

Four years of painful days

Sometimes the visits I make there still do. Her birthday this year–she would have been 60–and our anniversary–our 25th was September 2–were especially difficult. Today was easy by comparison, but still brutal.

I came home, took the fruitcakes out of the oven, then made bread. Jane taught me about single-rise yeast early in our marriage. It takes what was once a day-long chore and cuts it back to a couple of hours. I’ve been experimenting with a new bread recipe of my own devising. It makes a very fine-textured wheat bread that I like for toast and for sandwiches. I played with the recipe today, scalding the milk and putting just a touch more butter and honey in the mix. It seems to slice a bit better in its freshest state this way. But the weather could be playing a role as well.

Four years of creative tension

Jane is dead. She died four years ago today. Part of me died that day, as well. Sometimes I feel all my movement is just the dying inertia of our life together–that my body is still moving because it does not know it is dead yet. Other times, I know that is not true–that I move forward every day because I still have work to do in this world–that I still have things to discover and invent and experience.

There is this constant tension between those two things. There is constant tension between observing tradition and creating the new. There is constant tension between living and dying. There is fruitcake–and there is bread–and both have a place in this life I am living.

Fruitcake and bread are apt metaphors for my experience today, the fourth anniversary of Jane's death.
Fruitcake and bread are apt metaphors for my experience today, the fourth anniversary of Jane’s death.