The daylight hours of Saturday went pretty well. I set up a table at a local craft fair and, while sales were not particularly good, I talked to lots of people about NET cancer who had never heard of it before.
Someday, perhaps, I will love again…
Where I come from we call that a minister’s delight. It means you can use an old sermon and no one knows but you. A new audience reacts differently and the talk feels new even to the speaker.
Better hours
I also read Matt Kulke et al’s –and that certainly boosted my spirits. We still have a lot to learn about this new drug that stands before the FDA for approval between now and spring. But it clearly will improve life for many patients.
…we call that a minister’s delight.
It’s not a cure, but, at first reading, it seems to have cut the number of daily bowel movements in half for many patients. It also cut 5-HIAA levels significantly. I’m planning to write a more detailed piece on the study later–I want to review it more closely–but it brightened the day considerably.
Dark hours
I came home, finally took the Halloween decorations down, and made myself a light dinner. I ate at the small kitchen table. A week’s worth of mail buries the dining room table–and I only eat there when I have company anyway.
It’s not a cure…
Then the sun set and the loneliness settled in as it does most Saturday nights. Jane and I didn’t usually do anything special on Saturday night. We’d sit in the living room and read or watch what we’d taped over the week. She’d put her feet in my lap and I’d rub the soreness out of them.
Consequential hours
I miss that. It seems inconsequential when I look at it logically–but it is somehow the most painful reminder of what is gone. I’m alone on Saturday night in ways I simply am not the rest of the week–even when no one is here.
…I’d rub the soreness out of them.
I would not wish these nights on Satan himself–even as bad as the Bible makes him appear. Even Judas deserves better. But every widow and widower lives in this bit of Hell.
Loving hours
People ask me, periodically, how I do what I do. I shake my head because I don’t feel I do enough. I haven’t figured out how to keep people out of this Hell I live in. To me, that means I’ve failed: failed to keep others healthy and alive, failed to keep someone from losing the one they love.
Even Judas deserves better.
Love defines my life. The search for love shaped who I became and how I became who I became. To live without that defining love–the love Jane and I shared every day–tears at me every second.
Loving hours
I envy those of you who have that love in your lives. I will not take it from you. Instead, I will do all I can to keep your love alive in the way mine cannot be. That means finding answers to this disease–and all the others.
Love defines my life.
Someday, perhaps, I will love again as I loved Jane. That does not feel likely on a Saturday night in November. The expression, “Once burned, twice shy,” comes to mind. Love requires leaving yourself open to a repeat of this kind of pain. But I would not give up what we had even to avoid this searing emptiness.
The hours of our lives can cast shadows on even the most beautiful of memories. Lost love does that, especially.
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.
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.
I met with Matt Kulke, Hillary Repucci and a NET cancer patient at the Dana-Fraber Cancer Institute on a muggy day in late August of last year. We’d gathered to talk, not about current research, but about the financial situation NET cancer researchers were facing not only at DFCI, but across the country as well. The topic was a simple enough one.
I will continue to write here…
The patient had an idea for a multi-year, multi-million dollar fundraising campaign that would reach out to regular businesses and others with deep pockets in ways we had not attempted in the past. We began working on an initial kick-off meeting and getting the approvals required from the upper levels we would need to proceed immediately thereafter.
The not-so-simple truth
By mid-October, we had settled on three years and $3 million for the campaign, which we launched on December 9–the fifth anniversary of the last day Jane was conscious. No one knew that until I brought it up in my opening remarks that night. They had suggested the date and I didn’t object because it seemed a symbolically fitting moment.
The topic was a simple enough one.
Since that night, we have raised over $600,000 for NET cancer research at DFCI’s Program for Neuroendocrine and Carcinoid Tumors, negotiated a first-of-its-kind Jimmy Fund Marathon Walk group in support of all the teams and Walkers walking specifically for NET cancer, held a summit for the captains of those teams, done an extensive photo shoot in the DFCI NET cancer lab, and worked on a slide show and presentation we can take on the road to tell the Program’s NET cancer research story and why it matters that we hope to put the finishing touches on this week.
Simple realities
The simple truth is that all of those things have chewed up both time and emotional energy that normally would have gone into other NET cancer projects–like this website. I’ve slowly realized this spring that, much as I’d like to do everything, I can’t.
…a symbolically fitting moment.
Much as I’d like to spend all day every day working on NET cancer, I can’t do that either. It isn’t healthy–for me or anyone else.
Simple emotional needs
I need time to mourn. Nearly 66 months after Jane’s death I know that too much of this house looks like a shrine to the couple we were and the person she was. Last summer, I replaced all the furniture in the living room. I took down the photo collages of her I had hung on the walls after her death and began putting up artwork that is more reflective of the person I am now than the person I was then.
…much as I’d like to do everything, I can’t.
The result is I find myself living largely in that room. I use the kitchen, where I have made the second most changes, to cook in and to eat in. The only times I use the dining room are when I have large groups in for dinner or to work on a project. I sleep in the bedroom, but I had to move it before I could really sleep at all, and still have great reluctance about going in there. Our former bedroom has become a collection point for odds-and-ends I don’t know what to do with. Environment, it appears, really does matter.
Physical reality
I need time to exercise my body as much as my mind. I work on the landscaping around the house every day. I’m gradually transforming the yard into a bee, butterfly and bird sanctuary of gravel paths and flower and vegetable beds. I do everything there by hand–one shovelful, one wheelbarrow-full at a time. The transformation is painfully slow, but sometimes I find myself sitting in the midst of what is finished and discovering a peace I have not felt in over six years–the time before Jane fell ill. In truth, the sanctuary is as much mine as it is the birds’ and insects’.
I need time to mourn.
And I walk. I go for walks in the city through quiet neighborhoods and busy streets. I walk through local woods and fields and along the beach in the late afternoon. Part of it is I know the yard work alone won’t prepare me for the 26.2+ miles of the Jimmy Fund Walk on September 25–and that is a priority. But the walking gives me a chance to clear my head and explore the person I am becoming. It is a meditation that does more than anything else to remind me that I am a human being with needs that go beyond NET cancer or politics or the emotions of loss.
Simple truths emerge
The simple truth that emerges out of all of this–including Parts 1 & 2 of this series–is I need to rethink what is going on here and how best to address the ongoing needs of both patients and caregivers. I’ll need some time to do that but there are some things I can begin fairly quickly. The first of these is to clear out and update some of the sections I’ve ignored entirely over the last year. There are, I suspect, links that no longer go anywhere, for example; and the calendar is completely out of date at this point.
…one shovelful, one wheelbarrow-full at a time.
The simple truth is I need your input about what you need and want to see here. There are basic things– links to foundations, links to support groups, links to NET cancer programs–I know need to be here. But do the things I write here need to be supplemented with other kinds of topics than we currently provide? What do you need that you can’t get somewhere else? Are there other blogs we should be linking to?
The need for other voices
The simple truth is I need other voices beyond mine in this space. As I said in an earlier post in this series, my experiences with Jane during her illness and my own in the aftermath of her death are closing in on six years in the past. Yes, I’m still involved with patients, but not in the way I was with Jane. My role with doctors and researchers is also changing–and will continue to evolve as I move forward with what I am doing with the “3-in-3” campaign.
…some things I can begin fairly quickly.
The simple truth is we need more people to write about their experiences as lay caregivers, as doctors, as nurses, but most especially as patients. While there is great truth to the idea that if you’ve seen one case of NET cancer, you’ve seen one case of NET cancer, that doesn’t mean those patients and caregivers don’t have things to say that others facing this disease don’t need to hear–or won’t find useful.
A simple request
I will continue to write here, but I am also perfectly happy to serve as editor for those with things to say to this audience. Building and maintaining a blog or a website is not something everyone has the time or energy for. We have a good-sized audience here that is hungry not just for the latest research, but for the experiences of other patients and other caregivers.
…we need more people to write…
It’s time we made changes here to do that.
Attracting bees can be simple with the right flowers. Attracting donors is not always that easy.
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.
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.
(Editor’s note: As I do every year, I am making the following letter available to everyone raising money for NET cancer research, whether for our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team or for a regional event in your area to support some other NET cancer research group. In the latter case, you have my permission to make changes in it to get it to work for your purposes. You can also use it as a model for creating your own fundraising letter. I don’t ultimately care who finds an answer to NET cancer–so long as someone does and it happens sooner rather than later. And, of course, if you’d like to make a donation to my Walk, I won’t object to that either.)
The Letter
Dear friends,
You’d think over five years after Jane’s death I’d have come to terms with that event. Friday night, I bawled my eyes out for close to three hours before I crawled into bed. Saturday morning, I started screaming, “I want my life back” at the top of my lungs. It didn’t change anything, but I felt better afterward.
I like to think I can have my life back anytime I want it: I just have to turn my back on NET cancer, turn my back on all the patients and caregivers I’ve met—and all the doctors and researchers working to find a cure for the cancer that killed my wife. People tell me it is my work against this cancer that holds me back from getting over Jane’s death—that my insistence on being in daily contact with it and those who have it is what prolongs my grief. They may even be right.
I just have to turn my back on NET cancer…
But I can’t un-see the truth of Jane’s 30 years of struggle with sleepless nights and constant diarrhea, nor un-see her final days in that hospital room. I know what every patient suffers. I know intimately what their families will go through–and are going through.
Yes, we’ve made substantial progress in the last five years. We have new imaging systems that make the disease easier to see. We have new drugs and treatments that ease the symptoms and prolong patients’ lives. And we are doing the basic research that will help us understand how this cancer works and how we can attack it. But we still don’t have a cure.
I know what every patient suffers.
So, again this year, I will walk the length of the Boston Marathon route on September 25. Over the last five years, you’ve helped me raise nearly $70,000 that way—every nickel of which funds NET cancer research at the Dana-Farber Cancer Institute. The teams I’ve captained have raised over $180,000 for that purpose—and you’ve played an important role in inspiring that.
I am asking for your help again this year. We have a donor who will match every donation you make by June 30, dollar-for-dollar, up to $7500. And if we get that entire amount, I won’t ask you for another penny until this time next year. If we don’t, I’ll have to write again this summer.
P.S. If you’d like to join us September 25, whether for 5K, 10K, 13.1 miles, 26.2 miles–or as a Virtual Walker–you can sign up by clicking here. We want to recruit 115 Walkers this year–one for ever 1000 patients who are living with the disease in the US–and one dollar for every one of those patients. Help us #cureNETcancernow.
Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.
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.
I face my sixth holiday season without Jane this year. I am not using “holiday season” to be either offensive or politically correct. Jane and I celebrated each of the festivals and holy days that mark this time of year in every faith and tradition. I still observe them all. I’d like to say it has become easier with time. It hasn’t–different, but not easier.
Have a blessed holiday season…
The end of each year is a time of both rejoicing and remembering. It is a time to look at the past and to plan for the future. I’ll spend many of the next days reflecting on the events of the year now ending and how those things connect not only to the past but also to the future.
A year of challenges
2015 has been a challenge on many levels. We lost my father-in-law, the last of our four parents, in September, one day before the ninth anniversary of his wife’s death. His body simply shut down over the course of about a week. His surviving daughter, Gail, broke her heel in the midst of that. Her surgery followed closely on her father’s funeral.
I still observe them all.
I also lost more than a few former students this year, the most recent barely two weeks ago. When people much older than me die, it is easier to accept. When a young person dies–especially one Jane and I held in our hearts–it is particularly difficult.
And I lost several friends I have made in the NETS community. Each one strikes me and reminds me of the urgency of the work I try to do every day. In my heart, I know I am doing all that I can, but I still wish I could find a way to do more.
A year of growth
Walking with Jane continues to grow in influence, if not in size. By the first of the year, we should have over 24,000 hits for 2015 on the website–an increase of nearly fifty percent over last year. We have directly generated nearly $95,000 in funds for research and awareness–though most of that money never passed through our coffers–and helped to launch 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute in Boston on December 9. Next year looks likely to continue to build on those efforts.
…I lost several friends…
Personally, I’ve navigated some difficult waters this year. But I’ve also done a number of things outside of NET cancer I am pleased with. I taught for six weeks this summer at the New England Center for Investigative Reporting’s summer program for high school students at Boston University–a thing I thoroughly enjoyed despite the long daily commute.
I continued my ongoing landscaping and interior decorating projects, have decided to get back into serious photography–the one visual art I seem to have any small talent for–read more novels than I can count, pretended to play some golf, listened to some live music, and witnessed the completion of the initial loop of the topiary heart I restarted after Jane’s death. Tomorrow, they put enough solar panels on the roof of the house to generate all the electrical power I currently use in the course of a year.
A time to heal
I am not yet fully healed from the events of five years ago. Honestly, I don’t think I ever will be. But I am hopeful in ways I have not been for a very long time. This season of the year is about rekindling the fire in our lives and beginning anew the things that define us.
…a thing I thoroughly enjoyed…
I think I am ready for that this year.
I hope you and yours are as well.
Have a blessed holiday season–regardless of your faith or lack of it–and a glorious New Year. As a friend once put it: A year of new light–let it shine.
Pax et lux
Harry
This was the year the topiary heart completed its journey around the mold. My own heart continues to rebuild itself–as fragile as the single strand that forms the topiary circuit, but growing stronger every day.
(Editor’s note: This is the text of the speech I gave December 9 at the Dana-Farber Cancer Institute as part of the kick-off for 3-in-3: The Campaign to Cure NET Cancer. The subheads were not included in the speech. They are used here as graphic devices to break up the page.)
I want to welcome all of you to this kick-off of 3-in-3:The Campaign to Cure NET Cancer—a campaign we hope will be a real game-changer for all of you here—and for all NET cancer patients and their families everywhere.
But tonight is a truly bittersweet moment for me. Five years ago tonight I was in a hospital room with my wife. She’d gone into a coma about 10 that morning—a coma induced by her fourth and final carcinoid crisis following surgery to replace the valves in the right side of her heart that her cancer had destroyed.
…a real game-changer…
Just before 6 p.m., Jane regained consciousness for a few minutes. I had to tell her there was nothing more her doctors could do—that we were taking her off the machines that were helping her breathe, taking out the feeding tube, and shutting down her pacemaker so that she could finally die.
“You’re going home to the garden,” I told her. She closed her eyes and I kissed her forehead. “Good night, my warrior princess,” I said. That’s the last thing I know she heard me say. I read to her, I sang to her, I talked to her, and I held her hand—but how much she was aware of after that….
The warrior princess
Jane was a warrior against ignorance all her life. She taught science—as I taught English—in a school that educated the working class children of a small town. We stayed there because we believed they deserved as good an education as anyone else got.
…she could finally die.
And when Jane was diagnosed with NET cancer, she became a warrior against it. She was determined to be the first person to beat it, but she was equally determined to end our ignorance of the disease and how it worked. She faced her life and her death with a singular kind of courage.
She died just before 8 p.m the next night. There was a slight catch in her breath—and she was gone.
Warrior days
Two days after we buried her, I went back to work. I was a teacher—and my students needed me. But Jane and I had decided well before she was diagnosed that we would retire from teaching that June—and I kept that promise.
There was a slight catch in her breath…
But I had made another promise—that if she killed her advanced disease the only way anyone ever had—by dying and taking it with her—that the battle against it would not end for me until it was dead.
I went to Seattle to be with my family that Christmas. On the plane out, I drafted my first NET cancer pamphlet. On the plane home, I drafted my plan for attacking the funding and awareness issues that had made Jane’s death inevitable—and that still plague our efforts today.
Warrior work
On the night of what should have been our retirement dinner, I spoke at the local Relay for Life and walked through the night in Jane’s memory.
But I had made another promise…
That fall, I walked the length of the Boston Marathon course for the first time. I raised nearly $5,000 for NET cancer research—far more than I expected. In December, I pledged $100,000 over five years to support the small but growing program at DFCI. Tonight, I make the final payment on that pledge—and renew that pledge for the next five years.
But I don’t just put my money where my mouth is—I put my labor there as well. I’ve captained four Jimmy Fund Walk teams that have raised an additional $175,000 over the last four years. I’ve put together pamphlets, a website for Walking with Jane that averages nearly 2000 visits a month, and served the NET cancer community in every way I’ve been able to think of—including asking everyone I know for money.
The dream
I do that in the hope that my friend Jillian will see her two four-year-old sons graduate from college and dandle their grandchildren on her knee. I do that in the hope my friend Andrew will have the same experience with his pre-teen daughter. I do that so my friend Kara can dance at her teenage son’s children’s weddings.
…I don’t just put my money where my mouth is…
And I dream of the day I can stand at Jane’s grave and say, “It’s over—it’s dead. No one ever has to go through what you did for 30 years—the insomnia, the stomach pain, the bloating, the diarrhea—NET cancer is well and truly dead—and we played our part.”
I truly hope you will all join with me in making those dreams a reality.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.
Introduction of Jennifer Chan, MD
Now, it is my honor to introduce Jane’s oncologist, the director of clinical trials for the Program in Neuroendocrine and Carcinoid Tumors, Jennifer Chan, who holds a very special place in my heart.
I can’t speak to Jen’s feelings when she first met Jane. But for Jane, it was as though she were meeting her sister. Jane was a very private person. It took me years to get where Jen was after two minutes.
But Jen is a very special kind of person. Jane was exhausted that night. We were in bed reading at 8:45. Then the phone rang. It was not a telemarketer—it was Jen—and she had a plan.
When Jane was in the hospital, Jen spent part of her lunch break with us seemingly every day. On Thanksgiving, she put the turkey in the oven and came to see us.
And on the last day of Jane’s life, she sat with us—both during her lunch and before she left for the day. She said she saw patients in clinic that day, but her heart was in the room with Jane—and with me.
I could tell you about Jen’s background, her colleges, degrees and accomplishments—but the most important thing I can tell you is she is wonderful, intelligent and creative human being who brings love and passion to whatever she does.
Ladies and gentlemen, my very dear and very good friend, Dr. Jennifer Chan.
(Editor’s note: Please help spread the word on this campaign by sharing this speech and the press release that will follow shortly. When the slides from Jen and Matt’s presentations become available, I will pass those along as well. Contribute to 3-in-3: The Campaign to Cure NET Cancer.)
(Editor’s Note: My apologies for a long gap between posts here. I’ve been busy working with the people at Dana-Farber on a new fundraising campaign to raise money for NET cancer research there.)
Thanksgiving Eve
Thanksgiving five years ago was both the best and worst I’ve ever had. It was the best because, despite a life threatening coma that had ended two days before, Jane was alive and seemingly well. The night before had been difficult. My simple presence in the room seemed to be having a bad effect on Jane’s state of mind–and on her physical health as a result.
…it has to be done.
At about 10 p.m., the medical people sent me down the hall to sleep in another room. “If we need you, we’ll come get you–and if we do, you’ll need to be sharp.” The words were not comforting, but Jane and I had insisted they be brutally honest at all times about Jane’s condition and prognosis.
Thanksgiving sunrise
I slept very little that night. Mostly, I waited for sunrise. I knew, somehow, that if the sun came up and no one had come to get me, things would be all right. And they were.
The words were not comforting…
I called the front desk. They said to come over when I was ready–that things were better. I walked down the hall and turned into her room. Jane was sitting up in the bed. She turned to me and smiled. “I love you hubby.” And then I was in her arms–and we were happy.
The best of times, the worst of times
Friends brought her father and sister to visit that day. When they left, I went downstairs and found a cup of pumpkin soup. By the time I got back, Jane’s chicken broth had arrived. That was our last Thanksgiving dinner together. We watched the Patriots beat the Cowboys and Jane fell asleep. Jane thought this was the final brightening in her family’s tradition. I had hope it was more than that–but we had squeezed out one more Thanksgiving.
…and we were happy.
And that was why it was the worst Thanksgiving–because it was the last. It haunts me to this day. Twenty-four hours later, she had another carcinoid crisis and went into another coma. I spent Saturday morning agonizing over what to do: should I let her go? Was there still a fighting chance?
Decision point
A friend came up that morning and Jennifer Chan, her oncologist, came in a little later. They convinced me that there was one more card to play: a massive dose of octreotide that would run the hospital’s supply to zero and deplete supplies elsewhere in the city as well.
It haunts me to this day.
Six hours later, Jane was awake–and both surprised and delighted to be there. Thanksgiving was not a false renewal after all. She was going to go home–not for Christmas, she knew–but in time for us to spend February vacation in the room overlooking the lake we had spent the last night of our vacation at in August.
The dream–and the nightmare
We lived for that dream for almost two weeks. Doctors put in a pacemaker, friends visited, we watched television together. We even argued once or twice–the kind of arguments people who have been married and love each other have when things are going well.
…one more card to play…
Five years ago today, things started to go to hell. Jane wanted to get out of bed to use the bathroom, wanted me to carry her there. I couldn’t–she had a feeding tube and all kinds of monitors that limited that kind of thing. If she wanted to sit in a chair, she had to be lifted with a small crane.
Into the night
She wanted me too take her home. I told her I couldn’t–not yet. She needed to stay her and get stronger. “I want to go home,” she whispered.
…things started to go to hell.
She did not sleep that night. I should have known then something was wrong. But I was tired. I was cranky. I hadn’t slept in a real bed in nearly three weeks–hadn’t really slept well in months. At least, those are the things I tell myself.
The final crisis
In the morning, the nurses sent me to have breakfast. I brought it back to the room with me as I sometimes did when Jane seemed to want me close at hand. We moved her out of the bed and into a chair. We watched two episodes of Frasier and Jane started nodding off.
She did not sleep that night.
The nurse came in and asked her if she wanted to take a nap. Jane nodded. We put her back to bed and she fell asleep. I sat next to the bed, holding her hand while I read something. An hour went by. The nurse came in with a blood pressure cuff. She said the sensor didn’t seem to be working right. This was not abnormal. Jane’s arms were so thin things didn’t always work right.
The hospitalist
Nurses have great poker faces, but spend enough time with them and you can tell when something isn’t quite right–and we’d asked for honesty. She went to find the hospitalist. He came in and ran through Jane’s vitals. We all knew by the time he was finished that Jane was in a coma. And I knew what that meant.
An hour went by.
He left to call Jen. He came back a few minutes later. “There’s nothing left to try,” he said. ” We promised honesty. We can keep her alive–maybe even bring her out of the coma. But there will be another–and she’ll just keep getting weaker. She’ll never come off the machines again–and we both know she doesn’t want to live that way.”
Keeping promises
The fighting chance had turned into no chance just that quickly. And I knew he was right–this was not how Jane wanted to live. I had promised her I would let her go if–or when–the time came. And I would do it beautifully and with honor.
‘There’s nothing left to try.’
We would start taking her off the machines in the morning, he suggested. That would give me time to gather some friends together to be with us at the end. And if she woke up, I needed to tell her what was going on. It was the hardest thing I’ve ever done–and I don’t think I did it very well.
Building the future
I will give a speech tomorrow night as we launch a fundraising initiative with the people at the Dana-Farber Cancer Institute. I’ll talked about Jane’s final days and hours. I’m not sure I’ll get through it without a cascade of tears. But I’ll do it because, just like letting Jane go, it has to be done.
…I don’t think I did it very well.
It has to be done so that someday there won’t be a need to tell her story again; so that someday no one will have to suffer what she did; so that someday no husband or wife will suffer what I–and so many others–have suffered because of this disease.
May that day come soon.
On Thanksgiving, I gave thanks for what Jane and I had together. But one day I want to be thankful that no one else will die from the cancer she fought.
