Category Archives: Death

Lessons learned? Maybe, maybe not

Death, Grief, Jane, Uncategorized

Summer is coming

Good teachers are exhausted the last few weeks of the school year. Athletes talk about leaving it all on the field. Teachers leave more than that in the classroom. For 10 months, every waking moment is about the students sitting in front of you for six hours a day. Your nights and weekends are not your own. They are burned up grading and commenting on student work–and on preparing the next day’s slate of lessons.

Of course, I may be entirely wrong.

Six years ago, Jane and I were coming to the end of what had been our most difficult year teaching. Jane was hit hard by the H1N1 flu in October and had developed pneumonia in the midst of that struggle. She missed nearly a month of work and had tried to find creative ways to get her students caught up–especially those in AP.

Lessons of a Winter’s Tale

In February, she started having swollen feet at the end of the day. Each night as she worked on grading papers and I reread the novels I was teaching, I would massage her feet to try to ease the swelling and the pain she was experiencing. Jane spent every day on her feet on a hard floor. Her feet had always hurt. The swelling just seemed a new addition to the aches.

Your nights and weekends are not your own.

But the swelling got worse and crept up her shins to her knees as the spring arrived. She was having trouble with the stairs in the building. Sometimes, she admitted later, she seemed to be talking to her students from a great distance. I tried to get her to see her doctor–but she worried about missing more time with the AP exam looming.

The death of spring

We went for a walk one afternoon. It was something we did after dinner as the weather warmed. We were coming up a slight incline and Jane suddenly said she needed to sit down. She eased herself onto the curb. We thought she simply hadn’t fully recovered from the illnesses that had fallen on her that fall. In a few minutes, she felt fine and we continued the walk.

…I would massage her feet…

But Jane’s heart was the problem. The NET cancer had begun eating away at the valves in her heart. The swelling in her legs was the result of fluid leaking from those valves and flowing into her lower extremities. Six months later, she would be dead.

Lessons no one saw

Sixty-six months ago–five-and-one-half years ago–today, our closest friends gathered in her hospital room with me to bear witness to her passing. I was strong that day. I read to her, recited poems, said our prayers for the dying and the dead. We talked about the woman she was and how she had led her life. And then she was gone.

…Jane’s heart was the problem.

I stayed strong through the calls to relatives and friends; stayed strong on the ride home and through the public events of the days that followed–the wake, the funeral, the repast, the small gathering afterward. Inside, I was as shattered as a human being can be. But no one saw that. I cried when I was alone, screamed when I was alone, mourned when I was alone.

Lessons in avoiding addiction

I went back to work two days after the funeral. Our students had lost their mother. I would not let them lose their father as well. But I was not right in the head. I’d read a paper three times before it made sense–and I ‘d know the problem was not the writer, but me. I remember almost nothing about the last six months of my teaching career. I’d like to say I was drunk–but I was stone-cold sober. Addiction runs in my family, and I knew if I started drinking I would never stop.

…I was as shattered as a human being can be.

Maybe I should have.

Lessons from my addiction

Instead, I went to war against NET cancer. I wrote pamphlets and did fundraisers. I talked to doctors and nurses and reporters and ordinary people. There were times I reminded myself of Coleridge’s “Ancient Mariner,” condemned to recite his sad tale over and over again to the ears of people who had other things to do with their lives than listen to me talk about the tragedy of mine.

…I was not right in the head.

I could do nothing for Jane. NET cancer had snuck up on her–snuck up on us both–and sucked the life out of her like an aphid on a leaf. I’d failed her–some would say I was meant to–but if I could find a way, it would not happen to anyone else. Awareness? I’d been in the awareness business for years. Fundraising? Not my long suit, but I’d learn. As one of my students said to another, “If I were NET cancer, I’d be afraid–I’d be very afraid.”

Nothing to fear

That confidence was grossly overrated. We’ve made progress against NET cancer, both in terms of science and in terms of awareness since Jane’s death. But I’ve had very little to do with either. I do what I can, but my friends are not rich and I don’t have anything that looks remotely like Bernie Sanders’ mailing list. Local newspapers give me space periodically, but I still have not figured out how to get the major media outlets to pay attention.

“If I were NET cancer, I’d be afraid–I’d be very afraid.”

My supposed strength is an illusion. Sixty-six months after Jane died, I am still deeply in mourning. It’s hard to make headway when part of every month vanishes in a miasma of guilt–I should have saved her–and mental and emotional paralysis. I crawl into bed too often wondering where the day went and how nothing on the to-do list got finished–or even started.

Fear itself

I’ve no idea where these sixty-six months have gone. Large chunks of the first three years simply don’t exist in my memory. I go back and read some of what I’ve written here and elsewhere to discover who I was pretending to be at the time. The only thing I know with certainty is that everything hurt like hell every day–and that I worked really hard to create the illusion that it didn’t.

My supposed strength is an illusion.

And I know I am still not quite right in the head. There are still boxes of Jane’s things I keep making excuses not to open or give away; boxes of mugs we bought together I’ll never use again but can’t bring myself to part with. I bought new furniture for the living room nearly a year ago. The old stuff is still in the basement, waiting for me to find someone who wants it.

Discovering lessons at home

And sometime in the last month or so, I’ve realized I spend an enormous amount of time in the living room–the one room I’ve redone nearly completely since Jane’s death. I still sleep in the bed we bought when we got married, surrounded by the rest of that bedroom set. Yes, I moved it into a different room and repainted the walls, but it is still as though Jane never died.

…I am still not quite right in the head.

And other than changing the orientation of the dining room table, the dining room is almost exactly as she left it. I eat in the kitchen, except when I have major company. I am not comfortable there otherwise. Meanwhile, as I’ve begun to revamp the landscaping in major ways, I find myself increasingly making excuses to sit outside, even when it is cooler than I’d like.

Lessons on moving forward

Two days ago, I did what I likely should have done shortly after Jane died: I ordered a new bedroom set and a new dining room table that reflects who I am rather than who we were. I spent most of the last two days going through the bedroom and the study, cleaning out closets and drawers and making decisions about what needs to stay and what needs to go–and marveling at some of the things I’d set aside as too emotional to part with four years ago. I mean, empty candy tins? Really?

I still sleep in the bed we bought…

Jane didn’t want me turning the house into a shrine of memories about her. I promised her I wouldn’t do that. The last few weeks, however, I’ve realized that is exactly what I’ve done in too many ways. I wonder now if while trying to be strong–sleeping in our bed, sitting in our chairs, working at our table–they are, after all, just objects–I wasn’t undermining my own healing. We become emotionally attached to things to begin with; when those things are attached psychologically to a person we have deep feelings about, that emotional attachment to those things grows even stronger.

Lessons ahead

Of course, I may be entirely wrong. I’m still in love with Jane. We built this house together–and no matter what changes I make to it, that will remain the case. My mind may be irreparably damaged and all of this no more than rearranging the deck chairs on the Titanic.

I mean, empty candy tins? Really?

But I’ve taken the plunge. For the next several weeks I’ll be flying through the air while I await the new furniture and continue the landscaping projects. The water may prove too cold, too hot or just right. It doesn’t matter. I’m committed.

And, in the meantime if you know anyone local who’d like a used bedroom, dining room table and chairs, or couch and love seat…

My landscaping project has uncovered a number of lessons--and not all of them have to do with paths and garden beds. The most important lesson may be that changing the environment may change the pattern of ones grief.
My landscaping project has uncovered a number of lessons–and not all of them have to do with paths and garden beds. The most important lesson may be that changing the environment may change the pattern of ones grief.

Simple truths I deal with–part 2

Death, Grief

Shattered clichés

Clichés stop us from thinking about the common truths they relate–for all that they represent simple truths. Everyone uses them so often that they begin to lose their meaning. And then some event shatters our complacency.

Sometimes the pain wells up and erupts…

Jane’s death underlined the simple truths that life is short and enormously unfair. She began to feel ill shortly after we submitted the paperwork that announced our retirement 18 months in advance of the actual fact, as required by the contract we worked under. In August, she was diagnosed with NET cancer. Four months later–almost to the day–she died, a little over six months before we would have taught our final classes.

Simple truths about teaching

If you’ve never been a teacher, you don’t know what it demands of you. People see only that the school day ends at 2:20 p.m. and that the school year is studded with weeks off and a long break over the summer months. The reality is 16-18 hour days seven days a week filled with preparation, grading, meetings, and time in the classroom–not to mention enormous amounts of figurative handholding with both students and parents. It is not a profession anyone stays in for long without a sense of calling.

Clichés stop us from thinking…

Jane and I spent our summers recharging our souls, but even summer meant reading the latest discoveries and techniques in our fields. We justified our single week in the mountains as time for us away from the books and articles we knew we had to read before school started again.

Unfair truths

Retirement would have shifted our priorities, given us the time to truly relax, read what we wanted to read, travel where we wanted to travel. Yes, we had books on teaching we wanted to write, but our own lives would be the thing we focussed on rather than other people’s children.

Jane and I spent our summers recharging our souls…

And then, all of that vanished in a hospital room at Brigham & Women’s Hospital. Even after they told us there was nothing more they could do, I half expected a miracle. We had worked together so long and so well that the breaking of that partnership was grotesquely unfair. I cannot describe the anger I hid below the surface the entire time Jane was sick. I cannot describe the anger I felt the next day–nor the anger I have yet every day since.

Truths no one sees

Someone told me during Jane’s time in the hospital that this was God’s way of getting our attention and refocusing us on a new task. Some would say now that the work I have done on raising awareness about NET cancer and donating and raising money for NET cancer research means the partnership has continued in a new and different way than we intended. Part of me even acknowledges all of that as true.

I cannot describe the anger I felt…

But it does not ease the anger or the hurt that I let virtually no one see. It leaks out around the edges, though. Sublimated anger emerges no matter how I try to control it. It is in the odd comment, the strange action. I rarely know I’ve done something until someone says something to me. I apologize, but people get hurt.

Unpleasant truths about me

The result is I find myself increasingly asocial, increasingly taciturn. My focus is on the business that I need to do. When I need a break, I work in the garden, play with the landscape, redesign a room, read something purely escapist, build something–all things I can do by myself. Real human interactions are dangerous–and I increasingly avoid them where I can.

…people get hurt.

I’m fine in situations I can script in advance in my head. If we sponsor a dinner, I can make the rounds of the tables, give the necessary speeches. When I thank people for their donations or their work, I truly mean it. But I don’t trust myself much beyond that. Social spontaneity is dangerous.

Platitudes and truths

And then something happens and I have no choice. I know exactly how useless the canned platitudes are when one has lost a loved one. I know exactly how useless platitudes and the well-worn phrases of sympathy are when someone is diagnosed with cancer or some other potentially fatal illness or injury–or someone they love is.

…I find myself increasingly asocial…

The last few months have been particularly difficult. I’ve lost track of the number of funerals and wakes I’ve been to–lost track of how many people I have hugged and spoken to who wander their houses like an errant pinball bouncing from one memory to the next and not knowing where the hours have gone nor how they are sitting in the room they are sitting in.

Unfair truths redux

Four weeks ago, I had lunch with an old friend. He complained about not remembering former students names when he meets them these days. Like me, he has had literally thousands of students, so I told him not to worry about it.

And then something happens…

A week later, he couldn’t tell time, couldn’t tell the difference between his phone and his TV remote. Next week, he will start radiation and chemo treatments for tumors in his brain. I don’t know a better human being than he is. He takes care of the sick–and now he needs to be cared for. I’ll do what I can for him–we all will. We’ll make sure he gets to his appointments, make sure he has the social visits he needs and that the emotional support is constant.

Angry truths

I’m angry. I’m angry about the woman who lost her daughter and her husband within two weeks. I’m angry about my friend’s brain tumors, I’m angry about the daily struggles I see every day among NET cancer patients to get the treatments they need and the care they deserve, I’m angry about the friend I lost to breast cancer, angry about the people who walked away from her.

I don’t know a better human being than he is.

And, sixty-five months and nine days after Jane’s death, I am still insanely angry about that. There is no logical reason for me to be angry with her, but some days–when I am honest with myself–I am absolutely livid. She promised me she was not going to die–and then she did. I think about all the times I told her she needed to see a doctor–and she didn’t. I think about how I listened to her when she told me to go see one–and how she wouldn’t listen to me about her own health.

Telling truths

I wonder if she had seen the right doctor twenty years–or even ten years–ago if she would be alive today–if we would be planning a trip somewhere or working on a book together. The emptiness eats at me and makes me stupid with grief and anger at her, at God, at the world of people who taunt me with their happiness without knowing they are doing it.

I am absolutely livid.

And then the strange combination of compassion and logic pull me up short. Jane didn’t want to die–she had no choice in the matter. She wanted to be here with me every bit as much as I wanted her to be. She suffered for years with a disease we could do nothing significant about even had we known what it was.

Truths we don’t always see

I cannot see the private griefs those happy faces hold behind them–any better than they can see the pain behind the face I present to the world. To look at me on any given day, no one would know how deeply wounded I still am–and, I suspect, always will be. I put on a face for the world every day the same way Jane and I put on a face for our students that kept our personal issues out of our work and out of their lives.

 Jane didn’t want to die…

The simple truths are these: I am always hurting and always angry. It is the nature of grief. We tell ourselves fairy tales about the first year and about getting over it because otherwise the enormity of the emotions would overwhelm us and leave us incapable of functioning. Every event in our lives shapes us and our future. To an extent, we can attempt to craft what follows–try to create a more positive future for ourselves and others.

Forgive me

But there are limits. Sometimes the pain wells up and erupts with as little care as Vesuvius or Mt. St. Helen’s for the people living in close proximity. On those days, I hate myself no matter how irrational that may seem. Like a good doctor, my first commandment is, “Do no harm.” But I am human–and I fail.

 I am always hurting and always angry.

Forgive me. Some days I really don’t know what I am saying–let alone doing.

One of my simple truths is I build things to help me work off my anger. Landscaping somehow eases my pain.
One of my simple truths is I build things to help me work off my anger. Landscaping somehow eases my pain.

Waiting for the click

Death, Grief, Jane, Uncategorized

Looking for a way to cope

In Tennessee Williams Cat on a Hot Tin Roof, Brick talks about waiting for the click–the point at which all the pain drains away and everything seems all right. He gets there by consuming large quantities of alcohol. I don’t drink very much or very often–and even less so the last six weeks. But, like Brick, I am waiting for the click.

…I haven’t done it as well as I could.

I’ve been waiting for it for 63 months now. I’ve tried losing myself in work, in films, in books, in research; I’ve tried meditation, grief groups, and therapy. Increasingly, I begin to feel my father had it right the night Jane died: there is nothing anyone can say that will make any of this feel any better. In truth, there is nothing anyone–including me, apparently–can do to make the hurt go away.

The click in my head

Yes, it is less paralyzing most of time than it was at the beginning. Lose an arm or a leg and you will learn to cope over time. It does not bring the limb back–you always miss it–but you do figure out a series of workarounds that enable you to look normal from the outside a good percentage of the time. But you know it isn’t the same even if the world can forget.

…my father had it right…

I keep hoping, though–foolish as that is. In December, I passed the five-year mark since Jane’s death. I thought that would be the moment of the click in my head–at least that was what a part of me wanted to believe. I resolved to cut back on my visits to her grave; I resolved to at least think about dating again; I resolved to do more things that would make me happy.

Death has murdered sleep

I’d been there several times before. I believed the nonsense about the first year–what the grief community calls “The Year of Firsts“–being the hardest. The second year was much harder than the first because–no matter how hard you try to believe the second year will be better, the person you loved is gone and not coming back except in your dreams–and when you wake up it is so bad that you don’t want to go back to sleep again.

I keep hoping, though–foolish as that is.

You start putting off going to bed at night because you can’t handle the dreams–no matter how happy they make you feel when you are in them. You gradually come to see them as you see drugs–a temporary escape that makes things worse when you come down from them. But lack of sleep carries its own consequences. The depression simply increases from another angle.

Everything comes with a price

I knew better than to expect much from the second anniversary of Jane’s death. But I had hopes for the third–and for the 25th anniversary of our marriage–and, most recently, for the fifth anniversary of her death. There is no magic bullet for grief, though.

…you don’t want to go back to sleep again.

Intellectually, I know that. I know taking her pictures out of the main living areas was a good thing. I know emptying her suitcase last week was a good thing. I know slowly redesigning the yard and the rooms of the house is a good thing. But each comes with an immediate and crippling emotional price–just as each date on the calendar does.

Why, this is Hell…

Much of January and February of this year were dead months. I had trouble getting up, trouble writing, trouble thinking, trouble getting anything done. They were the price of my expectations of what that fifth anniversary would mean. There was no click and my mind descended into the Hell of its own making.

Intellectually, I know that.

Hell is a place of pain without hope of an ending made worse by the illusion that things will get better. Sometimes, I live there.  But I am also the ghost of Jacob Marley. I can do nothing about my own pain–but perhaps I can find some way to ease the spirits of the other damned souls; perhaps I can find a way to prevent–or at least delay–others from joining me here.

Fighting destiny

In my head, I know it is a foolish idea. I know that at least half the population is destined to lose someone they care about; that half of us will be widows or widowers no matter what I do. I cannot stop death. I can only help to slow it down, at best. In the cosmic scale, it amounts to nothing.

There was no click…

But my heart sees the mother with her children, the husband with his wife, the child with her parents. We do not live on a cosmic scale–we live within the construct of our short lives in these fragile bodies. People will tell you these bodies are but vehicles or vessels for souls. I will tell you the same thing.

Body and soul

But in this world we inhabit our bodies matter every bit as much to us as our souls to us. This life is the one that matters now–and it may be the only thing that actually does. Jane’s soul my flit about the house, but I cannot hold it in my arms or feel its breath in my ear. Absent that, she has likely better things to do than hang around waiting for me.

We do not live on a cosmic scale…

And I have better things to do than lying in bed mourning for things that are gone and cannot be recalled in any meaningful way. Jane and I lived to ease the suffering of others, to offer a hand up out of ignorance and poverty, and to bring some small modicum of joy and hope to those who need it.

Waiting for Godot?

For 63 months, I’ve tried to keep doing that. My disappointment is I haven’t done it as well as I could. But, like the person who has lost an arm, or more, perhaps I need to work harder on the workarounds and stop waiting for the click.

…I have better things to do…

We live by living–and not by waiting.

A plant grows by living. It may pause now and again--waiting for the click that tells it growth is possible again--but it never really stops doing what it does to survive.
A plant grows by living. It may pause now and again–waiting for the click that tells it growth is possible again–but it never really stops doing what it does to survive.

 

Christmas interlude, 2015

Death, Grief, Holidays

Oh, Christmas Tree

I took down the Christmas Tree today. I packed up all the ornaments Jane made over the course of our marriage and all the ornaments we had bought or otherwise acquired over 21 years of marriage. For some reason, it felt like I was doing so for the last time. I cried through it all.

The tears keep welling up…

This was my sixth Christmas season without Jane. Somehow, it’s been the hardest of all six. None of them have been easy. I barely remember the first one. I spent it in Seattle and the shock of it is etched into the family picture someone took at my brother’s house that year. I am a ghost in that shot. There is no expression on my face–no pain, anger or disbelief.

Numb Christmas

People tell me you can tell the seriousness of a wound by how much it doesn’t hurt. Minor injuries hurt like hell. Major ones induce a numbness that masks the seriousness of the situation. I felt nothing for a very long time. I went through the motions of life and anyone who has seen me in public these past few years could almost believe I am OK.

I took down the Christmas Tree today.

I’m a good actor. And the numbness helps me create that illusion. Say something funny and I will laugh. Say something sad, though, and the curtain comes down. I may continue to interact with the people around me but my mind is far away. It is the only way I have to deal with the loss that does not leave me sobbing endlessly on the floor. I don’t do that in public.

Christmas then

Christmas was a special time for us. Jane would spend weeks selecting a new ornament to make for us. She would keep the design away from me–not showing it to me until it was finished and ready to hang on the tree. We would wake up on Christmas morning about 5 a.m.–we were like little kids. We would go out to the tree and bring our gifts back to bed, where we would unwrap them, starting with the stockings.

Minor injuries hurt like hell.

We would have cocoa and warmed chocolate croissants after presents–these eaten in bed as well. Then we would get up and Jane would bake bread and desserts we would take to her parents for Christmas dinner. I would wash the dishes as she worked and do whatever other prep work she needed done–chopping onions or veggies or beating eggs.

Christmas now

I spent the first four Christmases in Seattle after Jane died. I would stay with my father most of the time. We would sit up late into the night talking about our wives and remembering better days. Then he died and, because Jane’s dad was not doing well, I spent last Christmas here. I sat with our tree and looked at the lights. I had tea with my croissant.

…we were like little kids.

There were no gifts wrapped under the tree, no stockings, no Christmas morning card. Nor were there this year. I baked bread, a Quiche, and an apple pie and took them to Jane’s cousin’s house for dinner. I came home and watched It’s a Wonderful Life and wondered what George would have done without Mary.

The end of Christmas

Normally, I would have left the decorations up until January 6. Now that I’m retired I can wait until then. Jane and I always took the tree down the Saturday before we went back to work–and always hated doing it.

…I spent last Christmas here. 

Last night, as I sat looking at the tree, I decided I would take it down today. I couldn’t stand looking at it. It reminded me of too many better days–days with Jane in my arms, days with her voice calling down the hallway, days when laughter was real.

Christmas tears

Part of me thinks I must be getting better. I wouldn’t hurt like this if the wound had not healed to the point that the nerves were coming back online. It’s what I tell myself. Maybe it will turn out to be true, this time. But the house is quiet tonight and I am alone. The tears keep welling up and running down my face. It’s been five years and 23 days and I’m still crying, still hurting, still wrestling with a loss I can’t describe or explain or escape.

…days when laughter was real.

Tomorrow, I’ll wake up and get out of bed. I’ll eat breakfast, exercise, and shower. I’ll take on the projects of the day, write the things I need to write, clean the things I need to clean, plan the things I have to plan. I’ll figure out new ways to go after the thing that murdered my wife in the hope I can somehow help to remove that arrow from Death’s quiver so that no one faces what she did–and no one faces what I have since.

Christmas reminds me of why I do what I do.
Christmas reminds me of why I do what I do.

Jane and the second carcinoid crisis

Death, Grief, Jane, Uncategorized

(Editor’s Note: I will preface this as I did the last post: if death and mourning are not things you want to confront, don’t read what follows. Caregivers will likely find it more useful than patients. I will also say this is not the piece I planned to write this morning. But the memories of Jane in her second crisis refused to leave me alone until I set them down here. Whether they will now let me be or not remains to be seen.)

Breathe with me…

Five years ago Sunday I sat with Jane in her hospital room. She was in the midst of her second post-operative carcinoid crisis–though I did not know it at the time. My normal habit was to meet with her doctors as they did rounds outside her room. But there was something wrong with Jane’s breathing and I didn’t want to leave her.

“They told me you had a fighting chance…”

“Breathe with me and stay with me,” I chanted over and over again as I held her hand. The doctors moved down the hall to the next patient.

Something isn’t right

Six days earlier, during Jane’s first crisis, one of her nurses said to me I was only allowed to panic if she did–and that since she wouldn’t panic, I wouldn’t either. So when there was a catch in Jane’s breathing now, my voice was calm as I called to the doctors and nurses from her bedside, “We need some help. Something isn’t right here.”

I didn’t want to leave her.

The room was filled with people in an instant. They moved me behind a screen so they could work. That’s when my mind came unglued. But I fought it off. I knew I needed a clear head.

The grays in DNR

Jane had a DNR and we both thought that was a pretty black and white thing. But when the came through the screen I was immediately confronted with how many shades of gray exist between life and death.

 “We need some help.”

“We know she has a DNR,” he told me. “But we think we know what is going on right now and we think we can fix it. But we have to intubate to buy the time we need to do that. If we’re wrong, we can take the tube out and let her go the way she wants to then.” Simplicity died in those three sentences.

The decision I made

I come back to that moment over and over again. Knowing what I know now, I should have let her go. But I didn’t know any of that. I knew her doctor and knew we both trusted him. I knew Jane and I both believed in the concept of a fighting chance. That seemed to be what I was looking at.

Simplicity died in those three sentences.

I told them to her. I told them to do what they needed to do. I told them if it didn’t work, we’d take the tube out and let her go.

Uncharted waters

Five years ago yesterday morning, Jane was still in a coma. Her breathing and blood pressure were stable. There was an octreotide drip in her arm slowly rolling back the over-supply of serotonin that had generated her collapse. I held her hand and talked to her, not sure she could hear or comprehend any of what I was saying.

I told them to intubate her.

At 10 a.m., I met with her doctors, the nurse on duty when Jane had crashed the day before, and a social worker. We talked about what they thought was going on, about who Jane was and what she would want. The told me they were in uncharted waters in some respects.

What would Jane do?

I thought about Jane, the scientist, as I listened to them talk. I thought about Jane, the compassionate human being, as I listened to them talk. And I thought about Jane, the person, as they talked.

…Jane was still in a coma.

The scientist would want to learn all that she could–help the doctors learn what they could. The compassionate human would want them to learn all they could so the next patient would have an easier time of it. The person would want her dignity.

The backdrop

That dignity had been sorely tried throughout the previous weekend. She had had multiple massive diarrhea episodes that overflowed the bed pan and left her soiled and humiliated. I had been out getting something to eat when the first hit. They would not let me into the ICU until it was cleaned up.

The person would want her dignity.

By the end of the weekend, I was helping change her night-clothes and bedding, holding her on her side as the nurse cleaned and salved her bottom. I remember thinking at one point that I was changing her using the some of the same techniques and dispassion I’d used when I changed the diapers on my younger siblings as a child.

ICU psychosis

The thought made me shudder. I hurt for her every time but carefully kept it out of my voice, face, and manner. I knew where I needed to be–where Jane needed me to be–and knew I could only stay and do those kinds of things as long as I stayed professional in my actions.

That dignity had been sorely tried…

Somewhere in there, Jane lost her mind. There is a thing called ICU psychosis. You can read about it–but reading it and seeing it are two different things. Jane told me the doctors and nurses were trying to kill her, lied to them about how often she was doing her physical therapy–and at times seemed to suspect I was in league with them.

Balancing act

I still don’t know how to balance the things that went through my mind that Tuesday morning. I told the doctors, nurses and social workers about Jane’s vow to be the first person to beat this form of cancer–and my vow to do all I could to help her do that. I forced my emotions down and tried to be logical–to look at the evidence I had and make a decision based on that.

The thought made me shudder.

But there was the voice of the scared little boy in there screaming over and over and over, “Don’t let her die, don’t let her die, don’t let her die…” The voice of reason agreed with the little boy–at least for a few more hours. The doctors and nurses were seeing signs that what they were doing was working. For now, the fighting chance remained–and I would not deny her that chance.

The bedside

Only those who have sat at the bedside of a loved one in a coma understand what those hours are like. There is so little you can do: you hold their hand, you talk to them, you read to them. Periodically, a nurse, doctor, or therapist comes in and you try to stay out of the way while they do what they do. They take blood, listen to the heartbeat or breathing, change a medication bag…

I forced my emotions down…

You know they are doing those things–that sometimes they move you from one side of the bed to the other–but you are aware of nothing but the person on the bed, their unresponsive hand in yours, the steady pulse of their breathing. Sometimes they send you out to get something to eat or to take a walk–but the whole time you are gone your heart and mind never really leave the sickroom.

Waking up

Jane woke up early that evening. She was immediately angry at me because of the tube going down her throat. “Stop,” I said. “They told me you had a fighting chance–and I gave it to you.” She relaxed then and I took her hand. Neither us knew how hard the next 36 hours were going to be, nor how hard the next few weeks would be.

There is so little you can do…

For the next few hours, though, it was peaceful.

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.

Jane’s 61st Birthday: a Heart Meditation

Death, Grief, Jane

(Editor’s Note: Jane’s birthday was on November 17. I have debated since then how broad an audience to send this to–or whether to post it at all. If you are uncomfortable reading about death and mourning, you may want to turn away now and read no further. But if you are a caregiver, what is here may matter to you. If you are a patient, it may help you understand what your partner faces now–and may face later.)

Road trip

Jane would have been 61 today. She would have awakened to cards and flowers and gifts and a poem and breakfast in bed. Later, we would have driven to southern NH to look for Christmas presents and browse the shops. We’d have had lunch in a restaurant we stopped at whenever we were there, then travelled home for a quiet night snuggled on the couch.

If the heart is healed, can the soul be far behind?

Instead, I went to the cemetery where her body is buried this morning. I left some mums there and a card and some tears. I was angry when I left—and sad.

Clearing spaces

Five years is a long time to be in mourning. Five years is no time at all to be in mourning. I’ve lived alone a long time, slept alone a long time, cooked and eaten meals alone a long time.

I was angry when I left—and sad.

This weekend, I started cleaning out the basement. It is where I have stored the things I am not ready to part with. Yesterday, I took the collages of our life together off the walls in the living room and moved them into the guest room. In a few days, I will unpack the suitcase she took with her to the hospital five years ago. It is filled with the clothes she never wore and the clothes she was wearing the day we checked her in for her heart surgery.

A new heart

I don’t know why it is suddenly time to do those things—just that it is.

I’ve lived alone a long time…

Five years ago, we celebrated her birth–and rebirth–in a hospital room in cardiac intensive care. She told the doctors and nurses she had gotten a new heart for her birthday, even though what she really had were two new mechanical valves in the right side of her heart. The plan was for her to move to the step-down unit the next day. She was happier and more upbeat than I had seen her in months.

A different road trip

I should have known…

…we celebrated her birth–and rebirth…

That night, she had her first carcinoid crisis. Her blood oxygen levels fell into the mid 80s, her blood pressure dropped. The doctors and nurses decided she needed a CT scan. But the scanner in the building had closed for the night. The closest one was in a nearby building on the eighth floor. Jane declared she was ready for a road trip—and off they went.

Raised hopes

The scan was inconclusive. Her oxygen numbers came up once she was back on oxygen. Her blood pressure stabilized. I stayed up with her all night and all day the next day. She was weaker than she had been, but she seemed to have turned the corner.

…she had her first carcinoid crisis.

I went back to the hotel and slept for six hours, checked out and moved my car to the hospital. I expected to drive home that night.

Dashed hopes

I did not sleep at home again until after Jane died three weeks later. I barely left her side.

The scan was inconclusive.

Five years later, my heart still bleeds. I get up every morning, I make the bed, eat, do all the necessary things from showering and shopping to reading and writing. Sometimes, as I work on this or that project I can almost forget that Jane no longer breathes, almost forget she is not simply out with her sister.

Small joys–and constant reminders

Then I look up and know she is not there—that her body rests three miles away beneath her family headstone. And then the silence closes in and it is as if she died just moments ago.

I barely left her side.

I debate moving periodically in the hope that some new place will not be so haunting. And then I remember my trips to Seattle since her death, I remember the nights I’ve spent in hotel rooms on one trip or another, I remember being at parties or dinners where the silence comes rolling in—and I know that where I live will not change this grief–that to leave here will only cut me off from the small joys of our life together here—only deepen my grief.

An evolving heart

I remember a friend who lost her father when we were still in junior high school. I remember visiting her home perhaps four years after his death. There may have been some pictures of her father in her mother’s bedroom—or in her own. There were no pictures in the public sections of the house. They did not surround themselves with memories. The house evolved.

…I remember…

Perhaps that is what I am doing this week. Perhaps I am evolving toward some final acceptance that Jane is gone and that my life needs to be about more than her absence—and about something more than the cancer that killed her.

Touching hearts, mending souls

Not that I have not done things other than deal with her death and her cancer over the last five years. But whether working in the garden, reading a novel or a biography, listening to music, or going out to dinner, a play, or just for a cup of coffee with friends, those things are never far from my thoughts.

The house evolved.

Nor will I give up the work against her cancer—I know too many people who have become friends who have NET cancer to walk away from that fight in mid-stream. It will die and I will have a hand—as big a hand as I can manage—in its demise. I owe that not only to Jane and the doctors who worked with her, but to every patient whose life has touched mine in the last five years–and every patient who will touch mine in the years ahead.

The cruelest months

I have no illusions: I will grieve Jane’s death until the last instant of my life. But I need to define myself as more than the grieving husband—the grieving soul mate.

…I know too many people…

The months from August to December have always been hard since Jane’s diagnosis and death. Every day holds a new trigger for grief. And this year their power is greater than ever before. The tears have come daily for the last week. My mind reels from memory to memory.

The heart of things

Yet, in a part of my soul, I know that I am letting go of Jane in a way I have not done until now. I know she is reborn in a new body that does not remember the life we shared together, that is preparing for the new work before her.

The tears have come daily…

And I still have work of my own to do. It is work shaped by the work we had together, shaped by our lives and our deaths—and especially her death in this lifetime. I have pressed forward with that work despite her death and my grief, but my grief has kept me from doing the best I am capable of.

When the heart begins to listen

I have moved forward but I cannot truly move forward until I come to terms with the fact she is dead—that I will never hear her voice again or feel her in my arms. I know it in my head but my heart has refused to listen.

…I still have work of my own to do.

Or maybe it has. Beginning to clear out the basement was not a conscious decision. I went down to put the laundry in the washing machine and, having done that, started cleaning.

The heart moves forward

Taking her pictures down in the living room was not a conscious decision—I saw a way to make the room work a little better by moving three pieces of furniture. When I was done, the collages felt too big for where they were. I took them down and moved them without thinking about it more than what it took to do it.

…my heart has refused to listen.

This morning, I knew it was time to unpack that suitcase—but it is in a closet I can’t easily get at. Once I can, the die is cast.

The topiary heart

Some time back, I wrote a piece about a topiary heart Jane had grown after we were married. It was the only plant that died while we were in the hospital. I discovered another ivy that had somehow survived the neglect that month in another pot.

…the die is cast.

I salvaged the heart form and began a new topiary. This week the sprouts completed the form. The heart is but a single strand thick and not nearly as full and strong as it was—but there. My own heart seems in similar shape—returned from the dead and knitting together, though still far from what it was.

If the heart is healed, can the soul be far behind?

Our original topiary art was the only plant we lost during Jane's time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.
Our original topiary heart was the only plant we lost during Jane’s time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.

Five years ago–surgery day

Death, Grief, Jane, NET cancer experiences, Uncategorized

Dark days of the soul

Jane was in surgery five years ago today as I write this. Part of me wishes she had had a less competent surgeon that day–someone who would not know how to deal with the damage to the heart he found when he opened her chest. It would have spared her the 25 days that followed.

…the price of all that is beyond counting…

I remember everything about that day in too vivid detail. I remember taking off her wedding ring. I remember the hours in the waiting room. I remember the walk up the street to the church where two friends were married–where Ted Kennedy sat when his son was in surgery–where the “liberal lion” of the Senate had had his funeral. It is all long and silent.

A single day

I remember coming back to the waiting room. I remember them sending me off to eat with a pager in my pocket. I remember coming back and watching the other people leave, until I was the only person left. I remember them closing the room and sending me to a waiting area of the sixth floor, right outside the ICU where Jane would arrive after the surgery.

It is all long and silent.

I remember trying to distract myself with television shows. I paced. I looked out the window at the street below and at the buildings across the street. And I remember thinking, this is taking too long–something is wrong.

Living and dying

And something was. The valves in the right side of Jane’s heart were so damaged that the serotonin had begun damaging the area where the new valves were supposed to attach. The surgeon had to sculpt a new seating for them into the flesh of Jane’s heart. A lesser surgeon would not have seen in his mind how to do that. A lesser surgeon would have been forced to let her die.

…something is wrong.

Sometimes I think about the what-ifs of that night. I wonder what would have happened if the surgeon had come to me and told me she was gone. I wonder if her death would have been harder or easier to bear. I wonder if I would be doing what I am doing now. I wonder how my relationship with her doctors would have been different–my relationship with our friends.

The day the world changed

I do know that there are people alive today who would not be if that had happened. They had heart surgery after Jane battled through four carcinoid crises–the last of which killed her. Her doctors learned from those and what they did to stop them. There is consolation in that–but it has not stopped the tears, especially not today.

…I think about the what-ifs…

I went to the wake for the father of some friends this afternoon. Jane and I had his grandchildren in class. They were the kinds of kids you don’t forget. Jane would be proud of them and the people they have become–as am I. She should have been there in more than spirit to see them.

Too much memory

A memorial service was held right after the wake. I’d planned to stay for it. But I could feel the tide rising. I had to get out of there before I lost it. Seeing our friends was one thing–seeing our students in that setting–was too much. Maybe on a different day than this one, it would have been different. But today…

There is consolation in that…

Today, I realized Jane really didn’t come out of that surgery. Her body worked–sort of. The heart pumped and the lungs pushed air in and out. The mouth formed words. But the anesthesia clouded her mind so badly she didn’t know what day it was until December 3. And the endless diarrhea stripped off her dignity more rapidly than her weight.

Forging tomorrow

Yet she stayed with me as much as she could for 25 days–and we forged something out of those days. I don’t know who I’d be without those last fragmentary days–or what I would be doing. I don’t know how many lives we touched in those days–nor how many since and in the future. I think I am a better person than I would have been without them.

Her body worked…

But the price of all that is beyond counting–and today it hurts more than I can say.

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.
Every day this month I try to do something to raise awareness about NETs. It is doubly difficult because the these days encompass the worst days in my life.

Remembering anger–cultivating hope

Death, Grief, Jane, NET Cancer Awareness Day/Month, Social mediathon, Uncategorized

Keeping hope alive

Grades closed for the first quarter at my high school five years ago today. I was supposed to finish grading some papers by Friday so I could post them on the computer before report cards were printed and sent out. But I also knew Jane and I were headed to Boston the next morning for another meeting with Jen Chan, her oncologist at Dana-Farber. I was worried about that appointment in ways I hadn’t been before.

…Jane’s body died and took part of my soul with it

Jane’s legs and abdomen were more swollen than they had been just two weeks before. She had stopped going to the basement entirely and the previous weekend had sent me out alone to do the grocery shopping. Neither the long-term Sandostatin nor the multiple daily octreotide injections seemed to be doing much good. But I worked hard not to let her see I was worried. I wanted her to stay optimistic.

Anger explodes

I know now that Jane was equally concerned. She had seen our neighbors a few weeks before–just prior to their departure for Florida for the winter. She’d told them she didn’t expect to be here when they came back. She felt, I think, that she needed to stay positive for me the same way I felt that for her.

I was worried…

I’d spent the previous weekend buttoning up the gardens around the house and giving the lawn a final mowing. As I carried a pile of brush to the composter, my foot went through the sod into a sinkhole. I lost my mind for a few seconds. It made me insanely angry and I let all the pent-up anger and frustration of the last several months boil out of me in a primal scream.

Explaining anger

The anger hadn’t entirely dissipated by the time I came back in. My voice was still strongly tinged with anger when I told Jane what had happened. “Why are you more angry at this than you ever are about my cancer?” she asked. Her own voice was tinged with anger and hurt.

 I lost my mind for a few seconds.

So I told her. I was calm about it–completely rational. I told her I was absolutely furious about her cancer–and I was. But I didn’t dare let that anger and hurt and frustration out. I had to stay calm because I had to be able to hear what her doctors were saying to us and understand it. I needed to be able to listen critically to what they told us so that I could ask the questions whose answers terrified us but that we needed to hear.

Caregiver anger

And I told her I was terrified that if I let that anger out some of it would splash over on her. She hurt badly enough, I said. I didn’t want to add to that hurt. “I hate this cancer,” I said. “I hate what it does to you. I hate that it makes you angry–hate that the anger gets directed at me sometimes. But when you get angry with me I remind myself that most of the time it is the cancer talking–and not you–and that if I let myself get angry back it isn’t going to help anything.”

I was absolutely furious about her cancer…

I’d watched her get ready to give herself an injection every morning for months. I’d watched her prep the hypodermic, draw out the fluid, cleanse her belly with alcohol swabs, then push the needle into her body and press down on the plunger. I’d watched her go through the same procedure every night, knowing that earlier in the day she had done the same thing when I was not around.

Bargaining in anger

I could see the marks the injections had left on her stomach. I knew there were ways I could not touch her without causing her pain–even a hug could be too much. And I could see how little good those injections seemed to be. It hurt me in my soul to see all that and know all I could do was hold her hand and smile and whisper constant encouragement.

She hurt badly enough…

There were times, when I was alone, that I looked at the heavens and said, “If you’re going to take her, do it quickly and be done with it.” I felt guilty every time I said that–truth be told, I still do. It’s a horrible thing to wish for the death of someone you love. It feels like the worst kind of betrayal no matter how much it may seem like the merciful thing to do.

Changing the landscape

We didn’t know, as we got into bed that night, that Jane had just a month left to live. We didn’t know that we would sleep in the same bed just three more times. She was, however, smart enough to make sure we said our good-byes that weekend after her heart surgery was set for the following Monday. She told me she fully expected to come home again–that she would not die from this surgery or its aftermath–but just in case…

It feels like the worst kind of betrayal…

A lot has happened in the 59 months since Jane died in my arms. The landscape of NET cancer has changed in some significant ways. Most of it has nothing to do with Jane’s death or my actions since then. Most of it was already in the pipeline. I’m not sure anything major changes in treatment or research if I had just curled up in a ball around my grief and disappeared.

What I might have done

Part of me wishes I had done just that. Perhaps then I would not still find myself wandering the house–moving from room to room aimlessly and watching hours vanish with no idea where they have gone. Perhaps then I would not have a dozen projects lying around me half-finished. Perhaps then I would have done what Jane asked me to do in that long Saturday conversation where we said good-bye.

The landscape of NET cancer has changed…

She told me she loved me; that she wanted me to find joy in life again, wanted me to fall in love again; that she fully expected me to go on with my life. Instead I dream of her last months and of trying to find her when we get separated in a store or in the woods. I dream she is lying next to me–and then wake up to find my arms wrapped around a pillow.

What we did and what I do

Every day, I get up. I eat breakfast. I read the newspaper. I craft a list of things I need to do.

Then I sit down and try to do the one thing I know really makes a difference: work to bring hope to patients and caregivers. Some days it’s comforting patients; some days it’s trying to figure out how to explain the latest bit of science; some days it’s helping caregivers understand what they are feeling is normal; some days it’s helping those who mourn find ways to cope; some days it’s trying to figure out how to raise a few more dollars for research; some days it’s about trying to build structures that will help people when I can’t do this any more.

…I dream of her last months…

Fifty-nine months ago today, Jane’s body died and took part of my soul with it. Fifty-nine months ago today, I stopped being Jane’s caregiver and returned to the work we had always done together: trying to help those who needed what we had to give.

Anger and grief fuel my Walk for the Jimmy Fund every year. But no matter what I do, it never feels like enough--and it never alleviates entirely either emotion for very long.
Anger and grief fuel my Walk for the Jimmy Fund every year. But no matter what I do, it never feels like enough–and it never alleviates entirely either emotion for very long.

Words on a simple stone

Death, Grief, Jane

Words in a cemetery

I went to the cemetery yesterday morning. I go there every Saturday, usually in the morning. Jane and I went there most Saturday mornings when she was alive. We went to her mother’s grave. Her mother always liked to hear people talking, so we would talk there. It was always quiet.

They are words–and nothing more.

We would water the flowers we took there. We would water the flowers on other nearby graves if they looked dry, pick up the vases and pots that had fallen over in the wind. We did not stay long on any given day–and less on days when it was cold or rainy. Her mother, Jane would say, would understand.

Engraved words

Some day this week, the engraver came through. He incised the date of Jane’s father’s death on the stone and added the date of Jane’s death at the same time. It’s been nearly five years since Jane died–and I kept forgetting to have the date of her death put on the stone. Her sister suggested we do it when her father died.

We did not stay long…

I admit that I’ve avoided doing that–not so much consciously as subconsciously. Nearly five years of weekly visits, nearly five years of visits on the tenth of each month, nearly five years of visits on her birthday, on our anniversary, on Valentine’s Day–on all the small dates of remembrance that make up the memories of a marriage–and I have not yet really come to terms with her death.

Impact of words

I saw those words on her grave yesterday and I cried. Once again, I was back on the day she died, on the day we buried her, on the day she was diagnosed, in the waiting room of the hospital on the day she was operated on, in her room during the onset of each of the carcinoid attacks and comas, and holding her hand through that long last day when there was no longer any hope.

…I’ve avoided doing that…

I visited my sister-in-law afterward. She said she thought this would finally give me closure–finally let me accept Jane’s death and move on with my life. Part of me hopes she is right. I’d love to stop crying out of nowhere; I’d love to stop having days where I wander aimlessly from room to room thinking I need to do the laundry, vacuum the floors, write this letter, draft that article. Then I look up and the day is gone and nothing is done.

Speaking of words

But I also know she is wrong. I know too many people who have suffered this kind of loss. One of my neighbors lost her husband more than 15 years ago. The tears still hit her. The aimless days still come. It still hurts. Nothing cures this. There are only things that mask the symptoms for a time. There are only coping mechanisms we get better at employing over time.

…the day is gone and nothing is done.

Sometimes, Jane and I would look at the words on the other stones in our little section of the cemetery. We would note the spouses who were still alive and those who weren’t, how long they had gone on without their other half. Some were gone in a year or two. Others lived for decades. We wondered how they endured that much time. Neither of us could imagine losing the other.

The meanings of words

And then, I had not just to imagine it, but live it. I keep looking for words–and there are none. One moment, you are sitting in a room holding her limp but living hand. The next, there is a catch in her breathing and you are holding a hand that has no soul attached to it. You are alone in a way that cannot be described–only experienced. And it is an experience you would not wish on anyone.

Others lived for decades.

A wife or a husband is the family member you choose to give absolute and unconditional love to. When you are hurt, they nurture you; when they are hurt, you nurture them; and there are no questions asked in those hours of need. There is no birth connection there–only a conscious decision that you will share your lives with each other, no matter what comes.

The death of words

And then death comes for one or the other of you–and no words can console the survivor; no physical or emotional gesture changes any of that vast emptiness. It is a pain so great and so deep that often, at the moment it happens, you feel nothing at all. Only months later, when everyone else has gone back to their lives, does the real pain begin. You face that, as you faced the moment of death, alone–alone in ways that cannot be described, only experienced.

…the family member you choose…

The words on the headstone that describe the date of Jane’s death may signal closure for her sister. If they do, I am glad for her. For me, they are only another reminder–like the emptiness in the soul of this house–of all that I have lost. They are words–and nothing more.

Jane's death has cast a shadow on my life words cannot describe.
Jane’s death has cast a shadow on my life words cannot describe.

The caregiver at 58 months

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

Dreaming of Jane

We are walking through the woods on a trail that is wide enough that we can walk side by side. We are holding hands. We come to a clearing and turn to each other. Our arms come up into a tight hug. Nothing could be better.

…my brain is melting.

Then I wake up. I am alone. Jane is not there. The anger and the hurt well up in me in a storm that leaves me shaking. It is 4 a.m. Part of me wishes I could just roll over and go back to sleep–recapture that dream and live there. I know better. I will just wake up again. And every waking is like the moment Jane breathed her last.

Fifty-eight months

The pattern has gone on for months now. It may be years. It may date back to Jane’s death 58 months ago. I know I have come awake in the middle of the night virtually every night since she died in the same state of hurt and rage. Only recently have I begun to remember the dreams that bring me awake.

We are walking through the woods…

In December, it will be five years since Jane’s death: five years of trying to come to terms with that and all it means. Barring accident or some global pandemic, I can reasonably expect to live another 30 years or more. My days are filled with meaningful and important work. I can lose myself and my pain in that. Sometimes, for a few hours, I can almost forget that Jane is not out with her sister or in another room.

Caregiver roll

I read a piece last night on being a caregiver for a cancer patient who is your partner. It says all the right things about diet and note-taking and general support. It gives the standard advice about making sure to take care of yourself. But doing that last piece is easier said than done.

My days are filled…

Jane spent her last 28 days in the hospital. I spent every one of those days with her. The nurses made sure I ate regularly, kicked me out for a periodic afternoon away from her bedside, made sure I showered and shaved and stayed as positive as possible. They, and Jane’s doctors, held my hand through every crisis and helped me let her go at the end.

Caregiver price

I had every form of support from them, from our friends, from her family–and from mine. Total strangers reached out to us in unimagined–and unimaginable–ways. A security guard I’d never met convinced his entire church to pray for us.

The nurses made sure I ate…

I lost 25 pounds in those 28 days. I lost my mind several times. I lost half my soul and the one thing that really mattered in my life. I’ve regained–and lost–some of the weight. But despite support groups and professional help and meaningful work, my heart, mind, and soul are still a shattered mess. I still feel like Job, sitting in the ashes of his burned out farm, surrounded by his friends and neighbors who can only wonder what Job has done to bring God’s wrath down upon him in such a terrifying way.

The living

God’s wrath is not something I concern myself with. I am more concerned with finding answers that will prevent others from going through what Jane went through in the final months of her life, that will prevent their spouses from going through what I went through as caregiver and spouse in Jane’s last months–and what I have gone through since. If my pain is the cost of that knowledge, I may whine about it periodically, but I’ll pay the price.

I still feel like Job...

I’m tired, though. The last two months have drained me. I’ve done fundraiser after fundraiser, meeting after meeting, reading after reading. I’ve walked my father-in-law to the end of his life and held his surviving daughter’s hand through both that and her own broken heel–and she still faces months of physical therapy for the latter while she deals with the aftermath of her father’s death.

Some time away

There’s still a pile of work in front of me. I need to close the books on our team’s Jimmy Fund Walk for the year; I need to plan next month’s NET Cancer Awareness activities–including organizing our annual social mediathon for November 10; I need to get ready for the Gastrointestinal Visiting Committee at Dana-Farber later this month; I have a dozen articles I need to write about the papers presented in Vienna on NET cancer last month, as well as advice for caregivers; and two other projects I can’t talk about yet.

The last two months have drained me.

But my brain is melting. I’m taking a few days off. I’ll do some yard work, go see a play or two, maybe pick some apples or just find a quiet spot on a beach or forest somewhere that I can listen to the waves or the wind in the trees. Cancer may never take a day off, but humans have to sometimes.

I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk. The idea is to end NET cancer--and the need for caregivers.
I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk.