We were watching a “Frazier” rerun in Jane’s hospital room four years ago today. Jane had not slept much the night before but we had moved her out of bed earlier. Now she was having trouble keeping her eyes open. The nurse asked her if she wanted to get back in bed and take a nap—and she did.
…you’ll be making a difference in the lives of carcinoid/NETs patients…
Moving Jane from the chair to the bed meant getting her back into a sling that hung from a crane. I remember having to support her head as we moved her that morning—something I had not had to do before. Alarm bells should have gone off in my head at this new weakness, but we had been in the hospital for more than a month. I had helped change her bedclothes after multiple episodes of diarrhea, walked her through two comas, major heart surgery, and, just the week before, the installation of a pacemaker.
Everything looked promising
Neither of us had gotten much sleep the night before, but I was more optimistic every day that we were headed in the right direction in this long battle against her NET cancer. She had begun physical therapy again two days before and today was the third day in a row she’d been able to spend time out of her bed.
I had helped change her bedclothes after multiple episodes of diarrhea…
I held her hand as she fell asleep—and continued to do so as I read once she was napping.
Jane’s last carcinoid attack
Maybe 45 minutes later the nurse came in to take Jane’s blood pressure. While Jane was on a monitor, sometimes it would stop working because of her position and how thin her arms were. The nurse said she was checking it manually because of that ongoing problem.
…I was more optimistic every day…
But the monitor wasn’t the problem. Jane’s blood pressure was crashing as a new carcinoid attack went coursing through her body. This time there was nothing left we could do to stop it. Thirty-eight hours later, she would be dead.
What we learned from Jane’s case
In four months, from Jane’s single case, her doctors told me, we had essentially doubled our knowledge of carcinoid syndrome and NET cancer. It isn’t that we learned that much, it is that we knew so little. But Jane was a scientist—and she knew how important even the small amounts doctors and researchers could learn from her body as it dealt with the disease could be.
Thirty-eight hours later, she would be dead.
The world of NET cancer has changed a lot in the four years since Jane’s death. We’ve found some new techniques that can slow down its advance and discovered new methods that can help us detect it more reliably. And we know a lot more about the genetics that drive the disease. But we still have nothing that looks like a cure.
I’ll walk again on September 20, 2015 and serve as captain of the NETwalkers Alliance team—a new name for the Caring for Carcinoid/Walking with Jane, Hank and Anne team I’ve worked with the last four years. Every penny we raise will go to researching carcinoid/NETs and finding a cure for the disease that killed my wife.
You can help
You can help in one of two ways. First, you can join our Walk team. You can walk the full 26.2 miles of the historic Boston Marathon course from Hopkinson to Boston, or you can walk 13.1 miles along the same course, starting in Wellesley, or you can walk five miles from Cleveland Circle, or three miles from the Jimmy Fund Clinic. In each of those cases, you’ll need to raise $300. Or you can be a Virtual Walker, cover no distance, and raise whatever you can.
Either way, you’ll be making a difference in the lives of carcinoid/NETs patients–and hastening the day I can stand at my wife’s grave and tell her that her cancer will never kill another living soul.
Pax et lux,
Harry Proudfoot
NETwalkers Alliance
(Formerly Caring for Carcinoid/Walking with Jane, Hank, and Anne)
Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.
When we think about death, most of us think primarily about our own death. If we think about it in terms of its impact on others, we think about whether we have provided for our loved ones sufficiently through insurance or inheritance, whether anyone will miss us, whether we have done anything worth being remembered for in the larger world.
…what the Hell do I do now?
But we don’t spend much time thinking about how our deaths will really emotionally affect the people who love us. Part of it is most of us are pretty self-centered when we think about death—when we think about it at all. In the United States, we are almost pathological in our efforts to avoid death and avoid talking about it. More importantly, however, none of us wants to think about the psychic pain our deaths will inflict on those closest to us. Contemplating our own impending death is hard enough. Contemplating its true impact on others under those circumstances is beyond most of us.
The proper focus excludes us
Even if we know someone who is dying, our thoughts are rarely on those they are leaving behind. Instead, we focus on the dying person’s last days and hours. The soon-to-be-mourners wrestle with their coming loss in the sickroom, but largely try to put up a brave front for the soon-to-be-deceased in order to ease that person’s movement from life into death. We do what we can to ease that passage, telling them they will soon see the loved ones they have lost, that they are going home to the heaven they believe in, and we ply physicians and nurses with pleas to ease the dying person’s last hours with the latest concoctions of modern medicine.
…most of us are pretty self-centered when we think about death…
Then, the breathing stops, the heart shuts down, and the brainwaves vanish.
Every death is different
Sometimes the death is sudden. Sometimes it comes with agonizing slowness. Sometimes there is time to say good-bye—to say all the things you want to say to each other. Sometimes, there is only a phone call or a knock on the door, and all the things you wished you had time to say can never really be said.
We do what we can to ease that passage…
Whatever it was that animated the body is gone. The survivors make the necessary phone calls to the relatives and friends who could not be at the bedside. They write eulogies, finish the funeral arrangements, and prepare for the wake and the burial.
Ritual thinking, ritual words
Those rituals are supposed to give the survivors comfort. We go through the receiving line and offer our stock phrases: “I’m sorry for your loss;” “At least they are no longer suffering;” “I’m here if you need me;” “Anyone as good as they were has gone straight to Heaven;” “Call me if you need anything.” Some people bring food by the house in the immediate aftermath. Others send flowers or sympathy cards.
Sometimes it comes with agonizing slowness.
The night Jane died, I called her sister and father. I’d told them not to come to Boston on that last day because I wanted them to remember Jane as she was the last time they had seen her. In retrospect, that may not have been the right thing to do—but it seemed so at the time. I asked them to call Jane’s aunts, uncles and cousins.
And now you know
Then, I called my father. He had lost my mother just 10 months before after a long struggle with Alzheimer’s. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.” That may sound cold and heartless, but it was the truest thing anyone said to me in the ensuing months—and somehow there was more comfort in that than in all the hugs and condolences that followed. My father was telling me the one thing I really needed to hear—that the bleak greyness that had crept around me for weeks and now shrouded everything, was not going to go away because of what people said to me, no matter how well-said or well-meant. Jane was gone—as my mother was gone for him—and nothing was going to bring her back to me this side of the grave. If I were going to live—really live—again, I would have to accept that reality and deal with it: there was nothing anyone could say. There were things they might be able to do that would help me get through what I was feeling, but the clichés of the receiving line—no matter how carefully crafted—would be of no use.
Those rituals are supposed to give the survivors comfort.
Strangely, I thought at the time, I felt pretty good in the immediate aftermath of Jane’s death—so much so that I apologized to her doctors and nurses for seeming so unaffected by it. But I had, finally, given her the dignified death she wanted—even if it had been delayed from the earliest moment it might have happened. I was proud of the way she had fought her cancer, proud of the way she had moved the hospital staff with her constant displays of love and courage, proud of the way we had held each other up. I was relieved that she was out of the agony and the soul-crushing embarrassments of the uncontrollable diarrhea she had endured. She was no longer in pain and had moved on to our garden home, where she would be cared for and loved and prepared for her next flight into this world.
Think about impact of different deaths
I have slowly come to realize that this is a normal reaction for those who lose a spouse or a parent to cancer or some other protracted death. We are relieved that their pain—and our own, born in having to watch their final struggle—has finally ended. They are at peace—and so are we.
I was proud of the way she had fought her cancer…
The death of someone we love brings a stunning shock with it that numbs our souls and our emotions for a time. It lets us function in the world long enough to get through the funeral planning and participation. It lets us stand at the head of the receiving line and talk with those who have come to say farewell. It let me serve as a pall-bearer to help carry Jane’s coffin to her grave, as I had once carried her across the threshold the day we were married. It let me convince everyone that I would be fine. I even had myself convinced.
I wasn’t fine
But I wasn’t fine—and I should have known I wasn’t fine. I should have known the moment I entered the empty house the night Jane died. The quality of the silence was different—different even from the silence of the times I had come home to water the plants and pay the bills while Jane was in the hospital. It was the silence of a house that no one lives in—a silence that can only be experienced and never really described.
I should have known by the way my body curled into a fetal ball in the extreme upper left corner of the bed—as far from where she should have been sleeping as possible.
I should have known from the way I aimlessly wandered the house the next morning—finding myself now in this room and now in that with no idea how I got there or why I was in that particular spot.
They are at peace—and so are we.
I should have known from the way I could not bring myself to open the bag of clothes we had taken to the hospital for her to wear during her physical therapy in the step-down unit—the bag of clothes that we had never opened.
I should have known from the way I could not open the plastic bag that contained the clothes she had worn the day she checked into the hospital for the surgery to replace the valves in the right side of her heart that her cancer had destroyed.
I should have known from the volume I played the music at to break the silence and fill my mind with something beyond the thought that she was dead and never coming home again.
There were a thousand other things that should have told me then—and in the days that followed–that I was not OK—and that I was never going to be OK in the way I had been ever again.
It is nothing…
I’ve lost both my parents. I know what it is to find myself an orphan at 62 years old. I know what it is to suddenly be the oldest person in my immediate family. I know what it is to stand over the body of my father’s corpse. It is nothing compared to losing Jane.
We lost Jane’s mother four years before Jane died. It was the most horrible death I have ever witnessed. She spent the last three days of her life suffocating from the effects of pulmonary fibrosis. It was like watching someone drown for three days and not being able to do anything about it. I know what it is to lose a mother-in-law who has adopted you as her own son. It is nothing compared to losing Jane.
I should have known…
I have lost students I cared about deeply—every teacher does. I have cried uncontrollably for those losses. But they were as nothing compared to losing Jane.
I have never lost a brother or a sister. I have never lost a child as a parent does. I don’t know what those things feel like. I may experience the first. I will likely never experience the second. Perhaps they are like losing Jane was for me. Perhaps they are worse.
What we say and what we do
But we don’t talk about any of these things until they happen to us. Even those who have been through them only talk with others who have had those experiences. And most only do so briefly. We are like soldiers who have experienced combat. We do not speak of it to the uninitiated.
It is nothing compared to losing Jane.
We have this bizarre belief that grief lasts a year, at most—that anyone who has grief that lasts beyond that needs professional help because that kind of grief is abnormal, at best—and unhealthy, at worst.
A different vision
I work with an online grief group that has a very different attitude toward grief. We say, “The deeper the love the longer the grief.” We talk about adjusting to the “new normal” that is never the same as the “old normal” even if we fall in love again and remarry. If we were given to laughing at ignorance, we would laugh at the idea that once around the calendar through all the firsts—the first Christmas, the first New Year’s, the first Valentine’s, the first birthday, etc.—cures grief and returns one to the person he or she was before their spouse’s death blew their world into smithereens that make the task of putting Humpty Dumpty together again look easy.
We have this bizarre belief that grief lasts a year…
Our experience is that often the second run through the calendar can be just as hard as the first. Perhaps it is because of the belief that after the first go-round everything is supposed to be normal, which raises our expectations too high to be met by the reality. I can’t say. I know only that I am facing my fifth Christmas without Jane—and that it still is not right, despite putting up a tree every year and decorating the house.
People think we’re fine
One of my neighbors lost her husband to a heart attack more than 15 years ago. She tells me she still has not healed from his death. My father died 54 months after my mother. He was still mourning her death when he died. My father-in-law, over eight years after his wife died, still has not recovered from her death—nor has he recovered from Jane’s. Neither has Jane’s sister.
I know only that I am facing my fifth Christmas without Jane…
Of course, we all look fine. We do the grocery shopping, keep our houses tidy, read the newspaper, watch television, go out with friends, work—some of us even date—though I haven’t yet. I even have two friends who have remarried.
But the world is different for all of us. We do not see the world in quite the same way. We do not experience things in quite the same way.
Experienced voices
When Jane was in the hospital, I ran into a younger couple whose experience was similar to ours in some respects. The husband had gone through serious heart surgery with a long recovery and poor prospects of success. He had survived—and more.
We do not see the world in quite the same way.
He spent 30 minutes telling me what Jane needed from me—and his perspective as a patient was invaluable. But when he went off to answer a phone call, his wife took me aside. Her role had been what mine was now.
Our point of view
“Everything he told you is true,” she said. “But he was a patient—not the caregiver—not the spouse. Our experience is different from his—and different from you wife’s. They don’t know the things that we know—they don’t know the things that we experience. They have no idea how hard it is to be positive every minute we are with them. They just expect it—and get angry with us if we fail even for a second. He threw me out one day—said I clearly didn’t love him enough if I couldn’t stay positive.”
Her role had been what mine was now.
Her husband had survived, she told me. But there were times the doctors had told her things he never heard. It was a miracle he survived—and a miracle the stress had not driven her crazy. She told me to get out and walk for a while every day—even if Jane wanted me there every second. She told me I needed to eat whenever I could—and that I needed to eat as healthy as I could.
Actions have consequences
“You’re going to lose weight,” she said. “You probably already have. You are putting huge stress on your body—and no matter how this turns out, you are going to get really sick yourself if you don’t take care of yourself. And after the hospital thing is over, no matter what, you have to keep taking care of yourself. You have to force yourself to laugh—no matter how miserable you feel. Go rent the funniest comedy you can find—and make yourself watch it. It will help you get through the aftermath.”
‘They don’t know the things that we know…’
She was right on every count. By the time Jane died, I had lost 20 pounds—over 10 percent of my body weight in less than six weeks. The night before Jane died, I realized I had stopped walking the way I had—I was using an old-man-shuffle to get around. I was 58 years old. And I couldn’t remember the last time I had really laughed.
Complications
Of course their situation was very different from Jane’s. He had faced one major, high risk, heart surgery. It had gone well. Jane’s heart had been much more badly damaged than expected. Her surgeon had to get creative to make it work—but he had succeeded. Jane’s heart was healing normally.
By the time Jane died, I had lost 20 pounds…
But her cancer complicated her recovery. Unlike most cancers, her tumors came with the power to create any of the 24,000 hormones and peptides the body manufactures. Her tumors had settled on serotonin, a hormone that controls digestion, blood pressure, and respiration among other things. Any operation or physical stress can kick the tumors into high gear, creating what doctors call a carcinoid attack that crashes blood pressure and respiration while causing dehydrating diarrhea.
God is an elephant
And Jane’s heart operation was the first of three procedures we would have to have done—including, potentially, one that had never been done on a patient with her cancer before.
Jane’s heart was healing normally.
I am not a traditionally religious person. I think most views of God(s) are like the three blind men sent by their busy king to find out about the elephant. The first describes it as a great snake that blows out hot air. The second calls the first an idiot and says it is a great dusty wall. The third calls down curses on the other two for their clear ignorance, for the elephant, he says, is like a rope that ascends to heaven—and when you pull on it all this smelly stuff comes down and hits you in the head.
What no one tells you
But if someone asks me for proof of an interested divinity, I point without hesitation to that chance encounter in the lobby outside the sixth floor cardiac ICU one day in early December, 2010. Between the two of them, I learned some things I desperately needed to know that I had no idea I needed to know.
I am not a traditionally religious person.
There are lots of articles and books for patients about the challenges they face as they deal with cancer or heart disease or a host of other diseases. When you visit a doctor or surgeon, they will patiently explain what the procedures are they will do and how they will affect your body. But no one explains what your role as spouse/caregiver needs to look like. No one explains to you the emotional rollercoaster you are about to embark on. No one tells you just how murky the lines are when it comes to making life and death decisions about your unconscious love’s treatment. No one tells you anything except that you need to take notes, keep the list of questions that need to be answered and ask those questions when your other half—caught up in the breathtaking moments of treatment and confusion—forgets to ask them.
Then it all changes
We and the doctors and nurses focus on the patient—as we should.
And just about the time you figure out all the things you really need to know and do that no one has told you that you need to know and do, you turn from caregiver and assistant to chief mourner and executor. And no one tells you about any of that in advance, either.
There are lots of articles and books for patients…
If you get lucky, a social worker comes to talk with you in your spouse’s last hours when all you want to do is hold her hand and whisper final words to her that will comfort her and guide her home. You are numb and torn by a range of emotions that includes anger, sorrow, guilt, and failure. There is no one there to take notes or ask the questions you should ask but don’t know you should ask—nor how to ask them even if you do. Maybe there are other family and friends there at that moment, but they are nearly as torn up as you are.
The question
And if you are like me, you look and sound competent and aware and healthy while every dream you had turns into insubstantial dust that gets picked up by the ventilation system and blown out over the city.
You are numb and torn by a range of emotions…
One thought kept coming back into my mind unbidden over and over again: I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?
I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?
To everything there is a season, and a time to every purpose under heaven.
Jane-and-Harry died December 10, 2010 just before 8 p.m. EST in the Cardiac Intensive Care Unit at Brigham and Women’s Hospital in Boston, MA. Four years later, I still have not made peace with that fact nor been able to adjust to the reality of it in any but the most superficial of ways. Jane is buried next to her mother in a cemetery in Fall River, MA. The headstone that marks the grave still does not bear the date of Jane’s death.
I haven’t forgiven myself yet…
Jane was my wife for 21 years, three months and eight days. We knew each other for almost exactly four years before we married–and we knew the day we met that we were soul mates. But the knowledge terrified us both. We did not go on our first date together for two years after that first meeting. We were that afraid we would screw things up.
Saving each other from worse than death
I’d had six relationships before Jane, if you count kindergarten and one case of unrequited love in high school. I was the second person she’d ever been out on a date with, and her first boyfriend. I was 38 when we married. She was 35.
Jane-and-Harry died…
Jane told me several times that I had saved her life–but never more poignantly than the day before I took her to the hospital for her final battles against the cancer that eventually killed her. And I told her several times that she had saved my life–and my soul–over the course of our marriage–and never more poorly or awkwardly than on that day.
Joining two souls beyond Death
Our wedding vows consecrated our bodies as one flesh. Our souls were joined long before that event. We both believed we had lived many lifetimes together. We both believed–and I believe now–that we were destined to live many more in the future. And we both believed I would recover from losing her very quickly because of that belief. What, after all, is the passage of even 100 years in the lives of two souls who counted their existence in billions of years? In that scale of things, even lifetimes of separation amounted to no more than a business trip.
…I had saved her life…
We were totally wrong about that–at least from my perspective. Seven days from now, I will visit her grave on the fourth anniversary of her death. The pain is not less than it was the day she died. The quality of the silence in the house has not changed. The emptiness of the space in the bed next to me at night has not changed. The absence of her touch or the sound of her voice at any point during the day or night has not changed. The missing her has not changed.
Death and loss take no holidays
All that has changed is my ability to deal with those things. They are–on most days–less debilitating than they were. For the first year after Jane’s death, I don’t think I ever slept more than three hours a night. Going to bed is still difficult, but once there I sleep for 5-6 uninterrupted hours. When I do wake up, most nights, I can get back to sleep. I rarely dream of her last days in the hospital now. Instead, I dream about the better times or have conversations with her about what I am doing and what I’m thinking about doing next.
Our souls were joined long before…
But the tears still come with little or no warning. I was in the grocery store Monday, walking down an aisle. I was looking for candied fruit for the fruitcake we made every year. I reached to pick it up and maybe the colors struck me in just the right way, but my eyes were brimming up with tears. Later that night I was watching a scene from Gods & Generals in which Lawrence is talking to his wife–and there we were. The tears came down across my face.
What Death took
Jane and I were a couple in a way it is difficult to describe to someone who has not had that experience. It wasn’t that we finished each other’s sentences or dressed to match each other–we didn’t do either one. But even separated by the length of a school, we could be on the same page. I taught English and she taught AP Biology, chemistry and physics in the same building.
Going to bed is still difficult…
One summer, I grew a beard. I’d had one when I was younger, but Jane had never seen me with one except in pictures. She liked how it looked, but was not really in love with how it felt against her face in the end. Still, I kept it to begin the school year while we saw whether it would soften. My students were stunned by my appearance and wanted to know why I’d grown it.
A story without death
“Ms Dybowski and I had an interesting summer,” I dead-panned. “The CIA asked us to come back to work and go to Afghanistan to look for bin Laden. I grew the beard as part of my cover.” Now neither of us had ever been spies or undercover agents. Nor had we been to Afghanistan. Our knowledge of any of the languages there was non-existent.
High school students can be pretty gullible, but I really didn’t expect them to swallow that whopper whole. We maintained a certain air of mystery about our outside interests and our students knew we both had a dry sense of humor that could be missed if they were not paying attention. But this tale was way over the top.
One summer, I grew a beard.
Still, they weren’t sure whether to believe me or not. Instead, since several of them had chemistry with Jane the next block, they held their peace, certain they would get a straight answer from her. Jane knew nothing of what I had told them and could have laughed at their question. She didn’t.
“Were you and Mr. Proudfoot really in Afghanistan this summer,” they asked?
“Yes,” she replied with a straight face, “And let me tell you, those burkhas are itchy.”
I’d made the story up on the spot. I’d never discussed it with her. But her answer was psychically perfect.
It took us weeks to get our students to believe we’d been kidding–and some of them are still nor entirely convinced.
Couplehood
We knew each other that well because we never made major decisions about anything without talking to each other–and rarely made even minor decisions without discussion. It wasn’t that we didn’t trust each other or were incapable of making decision without the other’s input. Rather, we wanted to be sure we had considered all the angles on everything before making a commitment. We knew that we were smarter and more observant together than we were separately.
‘Were you and Mr. Proudfoot really in Afghanistan…’
For example, we looked at more than 400 possible houses before settling on the one I still live in. We had a checklist that included the dimensions of every room as well as the shape of the yard and the position of any trees on the lot. This house was a shell when we decided to buy it. We looked at light fixtures for days and discussed the pros and cons of each one in each room before making a decision. We did the same thing with the flooring, the cabinets, the exterior and interior colors. We studied grass seed and foundation plantings and landscaping–even lawn mowers and snow shovels.
Human work
There was no such thing as man’s work or woman’s work. We both cooked–though Jane was the better cook–we both cleaned, we both mowed the lawn and pruned the trees and shrubs. I did more weeding and vegetable gardening, perhaps, but only because I enjoyed doing it more than she did. She loved cross-stitch and other forms of needlecraft–which I have no facility with–and filled the house with examples of her work.
It wasn’t that we didn’t trust each other…
On a hot summer afternoon, we would sit under the trees and read or write or work on some craft we loved. The majority of the ornaments on our Christmas tree are things Jane had created. We would work together on finishing a piece of furniture or designing a new flower bed. If one of us wrote something, the other would play editor.
To Hell and back
Sometimes we argued with each other. Sometimes we got angry with each other. One day, Jane was so angry she told me, “Go to Hell–And come back.” Then we both laughed. “Well, at least I told you to come back,” she said by way of apology. We might go to bed angry with each other, but by morning the fit would have passed. Before Jane’s illness, we spent just one night in different beds–and that was because I was out of town for a conference. We both hated it so much neither of us ever went on an overnight again without the other.
…no such thing as man’s work or woman’s work.
Yet we had very different interests we pursued without a second thought. Jane loved playing tennis. In the summer, she would play for two hours every morning with her sister. Sometimes she would get an invitation in the afternoon to go play doubles with three male teachers we knew. While I like watching tennis, it was never a sport I had much interest in playing–and what ability I had was so far below hers that it would spoil the game for her were I on the court. I had interests, birdwatching, for example, she found equally dull and excused herself from.
Great expectations
While we were both politically quite liberal, I was more of an activist than she was. We never discussed whom we voted for after the fact, though we explored every candidate and issue in detail together beforehand. Most of the time, I think, we agreed in the voting booth, but I suspect there were sometimes real differences we simply ignored. But those differences were more a matter of the pace of change than where we wanted things to end up.
‘…at least I told you to come back…’
We both fully expected to grow old together, gradually losing our physical and mental strength over time at about the same rate. Then we would die–if not at the same moment, then close enough to it that the other would not have too long a time before joining the other. We both come from long-lived families that tend to stay sharp and healthy into their 80s and 90s. We believed we would have 30-40 years together after retirement
The argument
Two nights before she died, we had a horrible argument that left us both angry and frustrated. It started when she told me she wanted me to help her into the bathroom so she could use the toilet. She’d been on bedpans and catheters since the operation that replaced the valves in the right side of her heart three weeks before. I had to tell her that I couldn’t–and that the nurses couldn’t–that moving her that far would risk pulling out the needles that were keeping up a steady drip of medication, risk pulling out the monitors. Getting her out of bed meant putting her in a lift–and that lift would not fit through the bathroom door.
Then she told me she wanted to go home–and I had to tell her she couldn’t–that she wasn’t strong enough and that she needed to go through rehab first. “You’ll be out of here right before Christmas,” I told her–as they had told us both earlier in the day. “Rehab will take until the first of February–and then you’ll come home. We’ll go to New Hampshire for a week–like we planned.”
‘I want to go home,” she said. “I want to go home tonight…now. I want to sleep in my own bed.” Every sentence was a breathy rasp and a struggle–as every word had been since they had put in the breathing tube in her throat so they would not have to intubate her again. It was a combination of reading lips and trying to make out the words she had not yet entirely succeeded in learning how to form. The exercise frustrated us both at the best of times.
We both fully expected to grow old together…
I explained again why that couldn’t happen. She sank into a sullen silence, then returned to wanting to go to the bathroom. I went out to consult with the nurse about making that happen, knowing already that it simply was not possible. The nurse came in and explained it to her in much the same way I had already done. The explanation just made Jane angry at both of us–and even more angry with me.
The nurse left and I tried to distract Jane from her helplessness with a Celtics game. She liked watching basketball and previous games had taken her mind off her troubles before–but not tonight. She would not look at the screen. Instead she glared at me. I tried showing her a comedy, a drama, a sit-com. She glared at me. I tried a channel that was just music. I was angry now, myself. Still she glared.
I talked with her some more–explained why she couldn’t use the bathroom like she wanted, explained why she couldn’t go home yet. Her glare said, “You don’t love me; you never loved me. If you did, you’d get me out of this bed.”
Time out
Finally, I gave up. I walked out of the room for a few minutes to try to calm myself. It didn’t do much good. I wasn’t angry with her. I understood her frustration. I was frustrated, too. We’d been in the hospital for 26 days. I’d been sleeping on the fold-down couch in her room for 22 of those days. I wanted us both to go home, but knew that was still weeks away. I’d explained it all the best I could. The doctors and nurses had explained it the best they could.
‘You’ll be out of here right before Christmas…’
But we could get up when we wanted, use the toilet when we wanted. My world was limited, for the most part, to the corridors of the hospital. But her world was limited to what she could see from her bed and the chair next to it. She felt trapped and alone and there was nothing I could do to change any of that. I could be there every waking moment of every day, but just the fact I could get up and move without help was a painful reminder of what was denied her. It made me an alien to her at times–and it had to hurt.
That I couldn’t fix that made me angry–especially at myself. Not for the first time, I wondered if it would not have been better if I had let her go the first time she’d gone into a coma. Not for the first time I wondered if I made a mistake letting myself be convinced not to let her go when she had gone into the second coma. Logically, I had made the right call on both occasions. I know that now and I knew that then. Our mantra was, “So long as there is a fighting chance, keep fighting. When there is no longer a fighting chance, let go.”
Death’s doorstep
I took a deep breath and went back into the room. “We both need sleep,” I told her. “Do you want the TV off?”
She glared at me.
That I couldn’t fix that made me angry…
I turned away and lay down on the couch. I closed my eyes and tried to sleep. I opened them. She was glaring at me. “Go to sleep, love. You need to sleep.”
Every time I opened my eyes, she was glaring at me. Every time, I begged her to go to sleep.
Death’s truth
At 4 a.m., they came in to do the overnight x-ray. I left the room while they did it. When I came back in, I sat with her until the sun came up. Somewhere in there, she softened. She still wasn’t happy. But the edge of anger was gone. In retrospect, I think she knew she was dying–that the reason she wanted to go home was so she could die in her own bed.
By 10:30 a.m, she was in a coma again. At noon they told us there was nothing more they could do. That afternoon, we began planning to take her off the oxygen and the feeding tube and everything else so she could die the way she had always wanted to. But it would be in a hospital room and not at home.
‘Go to sleep, love. You need to sleep.’
I haven’t forgiven myself yet for that final argument, for not realizing what she was trying to tell me, for not sitting up that whole night with her holding her hand. I thought I was seeing one thing when something else entirely was happening.
Jane was 56 years and 23 days old when she died of a cancer her doctor had never heard of. Her death changed everything.
Count no man as happy or noble until you have seen what death does to him–whether his own or that of the one he most loves.
I awoke alone in a hospital room on Thanksgiving morning four years ago today. I didn’t know what kind of day it would be because I didn’t know if Jane had survived the night. Her doctors had sent me off about midnight as they tried to calm her down. My very presence seemed to upset her.
…it is easy to forget that there is good in the world…
Jane had emerged from the first carcinoid attack two nights before following a 33-hour coma. She’d initially been angry to find I’d allowed them to intubate her but understood after I explained to her why I’d agreed to it. She insisted it come out as soon as they could do it and–against the advice of the hospitalist–it had come out Tuesday night.
The night before
But Wednesday, she’d become increasingly agitated. She tried to pull out the monitoring and medication lines and became violent when we stopped her. Her blood pressure, heart rate and respiration rose and fell like the stock market and a particularly volatile day. I tried to talk to her–to calm her down–but no matter how soothing I tried to be, everything I did just upset her more.
My very presence seemed to upset her.
I was doing no good and was, myself, becoming more and more frustrated. In the back of my mind the chorus of voices kept reminding me that I should have let her go Monday morning. I hadn’t–and this was the result. They had put Jane in restraints, but her body was still thrashing around in anger as they took me down the hall.
Sleepless in Boston
The doctors and nurses promised they’d come get me if they needed me or if things took a sudden, fatal turn. I tried to sleep, curled in a fetal ball on the too small bed in an alien space. I knew that if they came for me I needed to be able to make good decisions–knew I was too tired and frustrated to make them.
They had put Jane in restraints…
I didn’t sleep well, but I slept. They hadn’t come for me in the night. But that didn’t mean the situation had changed in a positive way, either. She might still be agitated and angry this morning–and part of me did not want to see that. I stared out the window for a few minutes, steeling myself for the worst.
Jane’s last Thanksgiving
Finally, I opened the door and walked down the hall. There were still people in the room with her but they were all calm. Jane was no longer in restraints. She turned her head as I came in sight of the door.
They hadn’t come for me in the night.
“I love you hubby,” she said as she saw me. She was wearing the biggest grin–the grin she used when she was really happy–the grin she had on our wedding day as we walked down the aisle and out of the church.
Then I was hugging her and all was right with the world.
Thanksgiving visitors
We arranged for Jane’s father and sister and a couple of friends to come visit that afternoon. Jen Chan, her oncologist, came by in the morning–having put the Turkey in the oven and leaving her husband in charge of it and her children–just to visit. It was the best Thanksgiving Jane and I ever had–even if all we had to eat together was a cup of broth for her and a bowl of pumpkin soup for me.
‘I love you hubby.’
It was also our last Thanksgiving together. Fourteen days later she would go into a coma for the last time. Thirty hours later her heart would stop and she would draw and exhale her last breath.
Giving thanks
I am thankful for that day, for all that the memory of it inflicts such pain now. I am thankful for most of the two weeks that followed–though there are moments in those two weeks I would like to forget. Her calm bravery still inspires me.
It was also our last Thanksgiving together.
But the Thanksgivings since have been empty exercises. I bake bread in the morning, as Jane once did, using Jane’s recipe. I’ll bake a pie this year, I think. I go to dinner, watch football, talk with Jane’s sister, aunt and cousins. This year, I’ll visit Jane’s father in a rehab facility if they don’t parole him for the day.
Thanksgiving pain
I’ll come home, at last, to the emptiness of this house. The remnants of the love we built here will try to console me but the silence will engulf everything. I’ll watch Miracle on 34th Street or It’s a Wonderful Life and they will drive the darkness back until I can sleep.
…Thanksgivings since have been empty exercises.
In the morning, I will decorate the house for Christmas. I’ll remember the years we did that together and be thankful I have those memories, be thankful I have the ornaments she made to hang on the tree, be thankful for all the blessings that remain from our 21 years, three months and eight days of marriage.
Reclaiming Thanksgiving
And I’ll be thankful for the friends who’ve helped me endure these four years of grief and who have helped me find ways to help others. I’ll be thankful for the roof over my head and the food in the pantry. I’ll be thankful for the doctors and the nurses who are still out there fighting injury and disease and for the researchers trying to find the answers not just to Jane’s cancer but to all the other diseases human beings endure.
…I will decorate the house for Christmas.
In grief and pain it is easy to forget that there is good in the world–and that the authors of that good are often other people like ourselves: mere wounded souls who yet hold candles in their hands to light the darkness regardless of the wind.
Happy Thanksgiving to you all.
Pax et lux,
Harry Proudfoot
Walking with Jane
I’m thankful for everyone who has walked with us and worked with us to end NET cancer. We will kill this thing, together.
Today is the day I should have let Jane die four years ago. Death that day would have been, in retrospect, better for her. It might have been better for me. But it would not have been better for our knowledge of carcinoid/NETs. It would not have been better for those who took life-lessons from her struggle. It would, arguably, not have been better for patients.
…Death was in the room with us–and I knew it.
The weekend before had been difficult. Jane had suffered from massive diarrhea as the food she was finally able to eat passed through her almost as quickly as she could eat it. I helped change her gown and the filth laden sheets after nearly every episode–though twice I had gone down to the cafeteria for food for myself and found myself locked out while they cleaned her up.
Psychosis in the ICU
She also lost her mind for long stretches of that weekend. She asked me to eat my meals in the room because, she said, she thought the doctors and nurses were trying to kill her. She lied about her physical therapy and said her doctors had told her not to do it–that she didn’t have to. She was angry and terrified and, sometimes, a complete stranger to me. There were times I was not sure she knew who I was.
Today is the day I should have let Jane die…
One of her doctors told me she was suffering from what they called ICU psychosis–a thing that is not uncommon among patients who are trying to shake off the lingering effects of the sedatives used during extended surgeries and begin feeling trapped in a small bed. Certainly, that was possibly part of what was going on. I know I was terrified and working hard to keep it out of my face and out of my voice.
Death enters the room
I was up with her much of Sunday night into Monday morning and she seemed to be calming down. I held her hand and talked soothingly to her until the day nurse came on at 7 a.m. I went out in the hall to tell her what the weekend had been like. She said she thought the idea of ICU psychosis might be wrong–and that I should be prepared for the possibility Jane might not make it. She saw a marked deterioration in Jane since Friday.
There were times I was not sure she knew who I was.
That this might well be the end had been in my mind all weekend. I knew diarrhea like she was having could not be sustained for long. I knew her blood pressure and respiration were fluctuating wildly. I told the nurse I would not sit in on rounds that morning–that I would stay with Jane instead. It was my habit to listen to the reports on Jane each morning and to understand the plan for the day in the week since her surgery. I felt like I was more a part of the team that way.
Staving off Death
I went back into the room. Jane was sleeping. I took her hand. She opened her eyes and looked at me, then closed them again and focussed on her breathing. I breathed with her. “Breathe with me and stay with me,” I repeated over and over in time with her breathing. I was dimly aware of the doctors, nurses and medical students talking in the hallway.
…she seemed to be calming down.
“Breathe with me and stay with me,” I chanted. The medical group moved down the hall to the next patient. “Breathe with me and stay with me.” Then her breathing caught and stuttered. I should have just continued to hold her hand. I should have said nothing and done nothing and let her slip away just after 9 a.m that Monday morning.
Death’s exit
But I didn’t. In a calm, un-panicked voice I called into the hallway. “Something isn’t right here.”
Then her breathing caught and stuttered.
Then the room was filled with doctors and nurses and they were pushing me behind a curtain so I couldn’t see what was going on. I hated that–but then the hospitalist was there asking about intubating her again. He said that would buy them a little time to figure out what was going on–and if they couldn’t fix it, they could always take it out again.
Conversing with hope
“Give it a few hours,” he said.
“A fighting chance,” I asked?
…they could always take it out again.
“A fighting chance.”
‘The moment it isn’t, you’ll tell me and we’ll end this?”
“The moment it isn’t, I promise.”
The end of the first death
We pulled her back from the edge of death. She spent 33 hours in a coma before the steady drip of octreotide brought her back to consciousness at 6 p.m. Tuesday night.
‘The moment it isn’t…’
You think about a lot of things when the person you love most is unconscious and you don’t know if they will ever wake up again–or what they’ll be like if they do. I sat by her bed. I held her hand. I talked to her. I watched the news with her. I sang to her. Somewhere in there I slept a little, I think. I know they sent me off to eat a couple of times. The memories are fuzzy.
I should have let her go
I never stopped believing she was coming back. I never stopped believing she was going to heal. I never stopped believing she would beat her cancer and all the damage it was causing. But Death was in the room with us–and I knew it. And I should have let her go with him–no matter how much it changed the future.
The memories are fuzzy.
But I didn’t. I didn’t know what I didn’t know. And the world is a different place because of that.
Would I be doing something different if Jane’s death had happened today instead 18 days from now? Would people have died who are alive today? Would I be different? Would you?
Jane and I were celebrating her 56th birthday in her room in the ICU at Brigham & Women’s Hospital in Boston four years ago today. She was recovering from the heart surgery done two days earlier to replace the valves in the right side of her heart. She joked with the doctors and nurses that she’d gotten a new heart for her birthday–and that while she couldn’t have ice cream and cake today, she was looking forward to it when she could finally eat again.
The fight goes on–and we will find a way to win.
I had come in from the hotel I was staying at early that morning. There was a joy in my step. Jane’s recovery was a little behind where it would be for a normal heart patient, but right on schedule for one whose heart problems were caused by carcinoid/NETs. Our original plan had been for me to go home Wednesday night after they moved her to the step-down unit for rehab, but the decision about was coming later than we had hoped. I’d arranged to stay on at the hotel through Friday morning.
Preparing for the move
After rounds, they decided they would move Jane to the step-down unit late that day or early Thursday. It was simply a matter of waiting for a bed to open up. They would finish weaning Jane off of oxygen and the drugs they were pumping into her over the course of the day to get her ready for the transfer. The physical therapy people arrived in the afternoon and worked with her as they had the day before. Jane had been following their directives faithfully–almost obsessively–ever since they left Tuesday afternoon.
…she’d gotten a new heart for her birthday…
Dr. Couper, her surgeon, came in and said her heart was healing normally. Jen Chan, her oncologist came in to check on how Jane was doing. Her cardiologist, Javid Moslehi, came by as well. Everything seemed to be moving in the right direction, so much so that they started turning the monitors off about 2 p.m.
Our birthday nightmare
The night nurse came on at about 7 p.m. She ran through her checks and asked for a pulse-ox measurement. From that moment on what had been a happy birthday filled with hope went sideways. Jane’s pulse-ox was down in the 88-90 percent range. Everything else looked fine, but that pulse-ox was way below where it should be in a healthy human being. We didn’t know it then, but Jane was in the midst of the first of the four carcinoid crises that would ultimately kill her.
Everything seemed to be moving in the right direction…
Jane’s tumors were producing serotonin. Serotonin controls lots of different things, including respiration and blood pressure. Drop those very far outside the human norms and you simply won’t have enough oxygen in your blood stream to keep your body happy.
Sleepless in the ICU
I stayed with Jane all night, save for a road trip she made to another building in the hospital where they still had a scanner manned. I’ve rarely been more frightened in my life–but I pushed the fear away. I knew I had to stay sharp and–as her nurse said to me–there was no need to panic unless the nurse panicked–and she wasn’t going to.
…a happy birthday filled with hope went sideways.
It was a sleepless night for both Jane and me. Sometime the next morning, they got things under control again–but all thought of a transfer to the step-down unit was gone. I went back to the hotel and slept for a few hours that night. It was a fitful sleep. It was the last night I wasn’t in the room with her–and the last time I would leave her other than when the nurses threw me out to get something to eat or to spend time away from the hospital for an afternoon.
The carcinoid riddle
The riddle of her recurring carcinoid attacks has never been scientifically resolved, as far as I know. I suggested the day before Jane died that it seemed like every time she started physical therapy again, an attack followed within 24 hours or so. I’m convinced that isn’t a coincidence–that when the body started calling up the hormones needed to rebuild her muscles, the tumors got the same message and started kicking out large quantities of serotonin that suppressed her respiration and blood pressure.
I stayed with Jane all night…
Her doctors told me at the time I might be right. And I know the protocols for carcinoid heart surgery patients have changed somewhat based, in part, on what they learned from Jane’s experience. At least that’s what they have told me–and that other patients have benefited from that knowledge.
A fighting chance
I take consolation from that. Jane and I both knew we were sailing into terra incognita. We both knew there was no other chance of changing no hope into a fighting chance for us–or for anyone else. We weren’t bargaining with gods or anyone else. We were just doing what we had spent our lives doing: fighting against long odds for the greater good.
…other patients have benefited from that knowledge.
Happy birthday, my darling. The fight goes on–and we will find a way to win.
Jane Dybowski died of NET cancer on December 10, 2010. She taught at Westport high School in Westport Massachusetts for 30 years. She would have been 60 today. –Westport High School yearbook
I did something I have not done before yesterday. I was at a craft fair running a booth for Walking with Jane and carcinoid/NETs awareness–which is nothing new. I take every opportunity I can find to talk about carcinoid/NETs and raise money for the research I hope will finally find a cure. But someone asked me yesterday how long ago Jane died and I told them it would be four years the tenth of next month.
It measures time, not healing.
Usually, I speak of her death in terms of how many months have passed. Actually, the clock in my head knows to the day how long I have lived without her–and if I am near a clock, I can state it to the hour–sometimes to the minute–without working up a sweat. As I write this on Sunday afternoon, in preparation for NET Cancer Awareness Day tomorrow, Jane died precisely 46 months, 29 days, 18 hours and 29 minutes ago.
The tenth of every month
People out in the world who are not widows and widowers look at me like I’m crazy when I state things that precisely. Those who are, nod their heads knowingly–as do, I suspect, those who have lost children. There are, ultimately, two kinds of people in the world: those who have experienced soul-shattering loss and those who have not. And I would not wish the experience on anyone.
…Jane died precisely 46 months, 29 days, 18 hours and 29 minutes ago.
I still visit Jane’s grave every Saturday, every tenth of the month, every anniversary, birthday and holiday. I still can’t believe that she is dead–even though I know she is. The evidence is all around me every day. It is there in the silence of the house, in the solitary meals, and the empty bed at night. She is the last thing I think about at night and the first thought I have every morning.
The silence of the month
My mind escapes loss for hours at a time if I am out with other people or working on a project that requires my full concentration. But friends know that in the midst of a party or social event that a grey mist will suddenly envelop me. I will move away from the crowd and find a quiet place to sit alone for a few minutes. It happens most often when I am out with a group of couples. Suddenly, I am totally aware of what they have I don’t–and who is not waiting for me at home.
I still visit Jane’s grave every Saturday…
I have struggled for nearly 47 months to find words or analogies to explain what this is like. One day last week I realized I was waiting for the refrigerator to come on to break the silence in the house–that sometimes I hope for the heat to come on for the same reason. That is how desperately empty my life has become if I let myself think about it. And I can’t imagine how depressed and crazy I would be without the work I do here and at craft shows and meetings and the 10,000 other things I fill each month with.
One month from today
Still, I am better than I was 47 months ago. I am better than I was 46 months ago or 45 months ago. I don’t remember much of anything about the two years after Jane died beyond the grinding emptiness and despair that formed a damp cloak around every waking minute–and every sleeping one as well. Fall remains a difficult time, full of unfulfilled dreams and daily nightmares that keep me from wanting to sleep. It hurts too much.
My mind escapes loss for hours at a time…
One month from today, four years will have passed: four years alone at Christmas, even with my family around me. Four years of single midnight toasts at New Year’s. Four years of waking up alone and gift less on Valentine’s Day and my birthday. Four years without fireworks on July Fourth. Four years spent in the cemetery on our Anniversary. Four years of greeting the trick-or-treaters alone with no one to share it. Four years of catching myself looking for birthday and Christmas presents for her. Four years without the smell of her baking on Thanksgiving morning. Four years of not making fruitcakes together. Four years of empty silence.
What is a month?
I want to believe the fourth anniversary of her death will bring the peace the first three anniversaries have not. From a month away, it doesn’t look likely. There is no magic in the date. It measures time, not healing.
One month from today, four years will have passed…
Change is incremental and does not run like a clock. Healing is the same–even from grief.
Jane would turn 60 this month. It makes me cry when I think of it.
