Category Archives: Death

Darkness and an empty well

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In 1992, Jane had already been fighting her cancer for a dozen years. We lived in the darkness of ignorance--only experiencing endless symptoms no one could figure out. We would only know its name four months before she died.
In 1992, Jane had already been fighting her cancer for a dozen years. We lived in the darkness of ignorance–only experiencing endless symptoms no one could figure out. We would only know its name four months before she died.

Darkness arrives in words

I read two things today that crushed my heart. They both had to do with NET cancer patients. One was about a death. The other was about a teenager with all the symptoms but no diagnosis—at least not yet.

Jane had other plans for me…

The woman who died was 42. She wrote a piece on dating while dying of cancer for the New York Times a few months ago. She was young and intelligent and vibrant–and none of that mattered to the disease.

The darkness of ignorance

When Jane was diagnosed, we were told this was a cancer largely of people over 50—and Jane was 55. Of course, she’d been living with the symptoms—the bloating, the stomach pain, the diarrhea—since her late 20s. But her doctors had never heard of NET—never heard of carcinoid, as it was called in those days. Ignorance killed her as much as the cancer. 

…none of that mattered to the disease.

Nearly nine years later, too little has changed on that front. Doctors and nurse practitioners are largely just as ignorant of Jane’s cancer today as they were when she should first have been diagnosed in 1980. I’ve spent nearly nine years trying to find ways to change that. I can’t say I’ve had much success there. Neither has anyone else.

Bright spots in darkness

Fortunately, there have been successes in other areas. We know more about the disease than we knew then. We have more and better ways to address the symptoms and slow the progress of the disease. We have a slightly better idea about what to do when a carcinoid crisis hits—the thing that really killed Jane at the end.

Ignorance killed her…

But there remains no cure for advanced stages of the disease—and no screening test we can use to diagnose the thing before it gets to an advanced stage. Accidents happen. People go in for an appendectomy and, “Oh look, there’s a neuroendocrine neoplasm. Let’s get that out of there.” Otherwise…

What she wanted

Increasingly, I wonder why I’m doing this. It isn’t at all what Jane wanted. The day before I took her to the hospital for the heart surgery to repair the valves in the right side of her heart, she told me in no uncertain terms how I was deal with her death, if it came.

Accidents happen.

“I don’t intend to die during or after this operation,” she said. “But if I do, I don’t want you to mourn for long. Give yourself six months to a year. Then fall in love again, remarry, have a good life.”

What I did

I told her she must think I didn’t love her very much—that her timeframe was not possible. She nodded at that but told me to do it anyway. She also told me I had to put up the tree every year—including that one—and that is something I have done. 

I wonder why I’m doing this.

Nine years later, here I am. I’ve poured out my soul on the parched earth of NET cancer. I’ve written essays and posts, encouraged doctors, encouraged researchers, encouraged patients, encouraged caregivers. I’ve designed posters and pamphlets and awareness campaigns and planned and executed fundraisers. 

Darkness of grief

And, privately, I’ve mourned an insurmountable loss. Grief groups? I’ve been to them. Counseling? I’ve done that, too. Bawled my eyes out until I have no tears left? Yes. Spent time at her grave? Yes. Spent time away from her grave? Yes. Moved my bedroom, replaced the furniture, purged my living areas of anything that might remind me of her? Yes. Redone the house and yard? Yes, though the yard remains a work in process. I’ve done everything but drugs—and with my family history of addiction, those are not really an option.

Nine years later, here I am.

Along the way, I’ve discovered that what we believe about grief and loss is largely a fairy tale. We learn to cope—we learn to put on a happy face for the world. We also learn that most people want to continue to live in whatever illusions comfort them. They don’t want to know about cancer or death or the suffering of others any sooner than they have to. And I find I can’t blame them for that. Those of us who have lost a spouse call widowhood a club no one wants to belong to.

Human nature amazes me

But I’ve also discovered many good and caring people along the way. Human beings are amazing creatures sometimes. They’ll fund the treatment of complete strangers, take care of kids, pay this month’s mortgage…

I’ve mourned an insurmountable loss.

But periodically, someone tells me cancer research is a hoax—that after all we’ve spent on research there has to be a cure big pharma is hiding from us. There are two fundamental flaws in that argument.

Light in darkness

The first is that cancer is not a single disease. There are multiple forms of breast cancer, multiple forms of lung cancer, multiple forms of prostate cancer, multiple forms of pancreatic cancer. What works on one form of breast cancer doesn’t often work on the others—let alone on a cancer that starts in the lung. Even the immunotherapies we have that everyone has become so excited about, work only on some cancers and not others.

Human beings are amazing creatures sometimes.

In real terms though, the reality of cancer has changed remarkably over the course of my lifetime. In 1952, nearly all cancers were almost invariably fatal. If a child had leukemia, all anyone could really do was make funeral arrangements. Today, the vast majority of children diagnosed with cancer survive to have largely normal lives. I have female friends who are 10, 20, 30-year breast cancer survivors, my younger sister and sister-in-law among them. We’ve made substantial progress.

Stopping conspiracy theories

The second flaw is the doctors and researchers I’ve met over the last nine years. They see cancer every day. They see what it does to patients and their families. They are compassionate and caring folks—and every death hurts them personally. I know because I’ve seen what happens when they lose a patient. 

We’ve made substantial progress.

If someone came up with a cure and tried to hide it, those doctors and researchers I know would shut down such a conspiracy with every device and method at their command. Their patients become members of their family. Imagine for one moment what you would do if someone withheld a lifesaving treatment from your spouse or your child. Doctors would do no less. Researchers would do no less.  

Bringing light to darkness

The face of cancer is different than it was when I was born. The face of NET cancer has changed in the nine years since I became aware of it. I don’t kid myself that I’ve played a large role in that change. I’ve done the things an English major and former teacher with limited money can do.

They see cancer every day.

I’ve donated money—likely more than I could afford—to help fund some basic research and encouraged others of greater means to do the same.  I’ve captained a Boston Marathon Jimmy Fund Walk team, helped advise a Pan Mass Challenge team captain whose efforts have far exceeded anything I could have done myself, chaired a successful fundraising campaign for Dana-Farber’s NET cancer efforts, inspired some other people to undertake patient education and awareness efforts…

Dawning darkness

But I’m tired and feeling badly beaten. Part of that comes from the date: November and December mark memories of the worst days of my life—and what I still view as my greatest failures. Today, Jane entered her last coma. Nothing remained to try. Nothing remained her doctors could learn from her. Only the process of letting her go remained.

I’ve donated money—likely more than I could afford…

Tomorrow, I would read to her and hold her hand. I would say the prayers of our peculiar faith for the dying for her. And I would tell the story of her life. Then her breathing would stop, her heart fall still and her brain shut down. I would close her eyes and come home to a house that was empty in a way it had never been before. Eight days later, we would bury her body and send her soul home to the garden we both emerged from.

The darkness of an empty well

But those memories are not all that troubles me. I have seen too much of death, too much of suffering from too many places and too many things. Every life I touch touches me. Every death carries with it memories of Jane—and memories of all the deaths that followed. Each haunts me.

But I’m tired and feeling badly beaten.

I know I have done all I can do. Each word I write carries a piece of my soul. Each word I speak carries a piece of my soul. Every poster I design, every video I make, every photograph I take, carries a piece of my soul. Somehow, all those pieces of my soul are not enough—and the bucket I throw down into that well now comes back up filled with damp sand.

A break from darkness

In ten days, I take my annual month-long hiatus from all things cancer. This year, I’m taking a vacation from everything else, as well: no politics, no climate change, no economics, no religion—nothing dealing with anything more urgent than plant starts, housekeeping, yoga, meditation, and the healing of mind, body, and soul.  

Every life I touch touches me.

And then, we’ll see. There is yet work to be done in this vineyard—and in others. But there is a well to fix, first. And Jane had other plans for me…

Dignity dies in a hospital bed

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People complain that Franklin and Jobs didn’t do enough to educate people while they were alive. If what they were going through looked anything like what Jane went through, I understand their reluctance completely.

Editor’s Note: If you are a NET cancer patient, you should not read what follows. It is filled with triggers that will not be good for you. If you are a lay-caregiver of a NET cancer patient, you should not read this for the same reason. If you are a widow or widower who has experienced the death of your other half as a result of NET cancer, you need not read this. You have already had the experience the piece describes and it will upset you, at best. It will have triggers in it you don’t need to deal with. I’m writing this piece for doctors and the general public, not for patients, lay-caregivers, or the bereaved.

I have seen Death in my life

I have seen death and suffering in my life. I spent part of my life as a police and fire reporter. I have arrived at fatal accident scenes moments behind–and once minutes ahead–of police and EMTs. I’ve walked into a burned out trailer with a fire marshal just after a fire was put out to find a charred body feet from the door. Those events were the stuff of my nightmares for years.

…much greater than anyone can imagine.

Then I sat the deathwatch with my wife and her sister as we watched my mother-in-law drown in the final throes of pulmonary fibrosis for three days and nights. That death was so ghastly her priest called it a martyr’s death. It drove the nightmares of my days as a journalist out and replaced them with new ones.

Nightmare diarrhea

Those nightmares lasted four years before being replaced with the images of my wife’s last days. Those images will never leave me. She did not drown, as her mother did. But what happened to her–and to me–was, somehow, far worse.

I have seen death and suffering in my life.

Aretha Franklin and Steve Jobs died from pancreatic NET. In some respects, it is a very different form of NET than the GI NET Jane dealt with. Their tumors were likely producing pancreatic hormones. Jane’s GI tumors were producing serotonin. The thing large quantities of some of them causes is food to be moved through the intestines very quickly, resulting in ongoing and massive diarrhea. I can’t be sure what happened in the case of Franklin and Jobs. I know what happened to Jane in too much detail.

What diarrhea does to dignity

Not having complete control over your bowels is worse than embarrassing in most human cultures. It reduces one, at times, to an infantile state. When that lack of control results not simply in a stinking stool in your underwear, but in diarrhea streaming down your legs and onto the floor, you feel worse than anyone can imagine. People can tell you it’s all right–that it’s your disease doing it–but that is the kind of thing that destroys your image of yourself.

…ongoing and massive diarrhea.

Many of us in the NET cancer community wish that Steve Jobs or Aretha Franklin had said something while they were alive about their disease. They could have done much to raise public awareness of the disease and how awful it is. They might have inspired more money for research that might have moved us closer to a cure. But they were proud people, living in a culture in a time and a place where we can only joke about what happens in a bathroom. It’s difficult to discuss, even with a doctor, being constipated. And diarrhea makes constipation look easy to talk about.

Simple human dignity

Jane was a proud woman. The night she went into the hospital for heart surgery to replace the valves her cancer had destroyed, they told her she had to go to the seventh floor of the building across the street. “I’m sorry,” she said to me, nearly in tears. “I can’t go that far. You’ll have to push me in a wheelchair.” She was visibly upset by that seemingly simple thing.

…they were proud people…

Jane hated the very idea of a wheelchair. We’d argued, sometimes loudly, about using one to get from one point to another in the hospital on earlier visits. It was an argument I’d decided I could not win. But I’d had to help her off the toilet at home that morning. I’d had to help her off the toilet in the Women’s Room at a rest stop on the way to the hospital. Her self-image and sense of dignity was in trouble long before the operation the next day set the stage for its absolute annihilation.

Diapers and dignity

Over the next four weeks, my wife became an infant. It destroyed us both. I replay those scenes over and over again in my mind. I look for things I might have done differently that might have made it better–might have left me with some small piece of a soul. There’s nothing there.

Jane hated the very idea of a wheelchair.

I diapered my first baby when I was six. I was the oldest of what would turn out to be six children. I put diapers on three of them–and helped by handing my mother diapers and powder on a fourth. I likely diapered the last one more often than my father did. Cleaning up an infant is often a stinky, messy job.

Changing Jane

Jane was my first adult. I knew she was having trouble. I came back from dinner one night to be told I should stay in the waiting area–that she’d had a bowel movement and her bedding and bedclothes needed to be changed. It took half-an-hour before they came to get me.

…my wife became an infant.

I don’t recall the exact details of what happened leading up to me helping change her. I just knew it was a two-person job and I wasn’t letting her lie in that mess one second longer than necessary. I told the nurse if he told me what to do, I’d help. He took me at my word.

A clinical description

I put on the gloves. I rolled her onto her side and held her there. The nurse did what he needed to do and I watched closely so I’d be able to do it myself if I needed to. I don’t remember the exact order of the process. He used the same kind of disposable cloth they use on babies to clean the diarrhea off her buttocks and legs. He rolled the sheets up close to her back. Then I lowered her back onto the bed. I walked to the other side of the bed, rolled her onto her other side. The sheets came off and he finished cleaning her up. Eventually, I lowered her back down on clean sheets in clean nightclothes.

Jane was my first adult.

I don’t know how many times I helped change her. She told me she was more comfortable when I was there to help. The nurses told me I got good at it–that they’d hire me. I like to think they weren’t just being nice. Even when they had someone immediately available, they let me stay in the room while they did it. It made Jane happy.

Breaking minds, destroying dignity

But it also broke her in ways that are hard to describe. She became emotionally more fragile and increasingly more child than wife. She became, for a time, completely paranoid–convinced the doctors and nurses were plotting something. She asked me to eat in the room rather than in the cafeteria so I could keep an eye on them. Periodically, I would drive back to Fall River to pick up clean clothes, cash a check, and pay the bills. She would be angry at me when I came back, even if I’d arranged for visits from friends and family for her while I was gone. Even if she were asleep much of the time. I’d left her alone for too long.

I put on the gloves.

And it broke me in ways that are hard to describe. You can’t help clean the shit from your other half’s body without it changing you. It deepens the relationship in unexpected ways at the same time it frays your soul. It felt like we were both creating these cool exteriors to hide the raw emotions that were coursing through us both. Even now, as I look at the description of changing her soiled sheets and gown, I see it so clinically–say it so clinically–knowing that to do otherwise would be to start crying and never be able to stop.

I live with it

It’s not that I don’t cry. I do–great hacking sobs that leave me drained emotionally and physically. In the midst of those episodes, I really do feel like the tears will never stop. And then they do–and I feel better for a time. Sometimes that time lasts for months–to the point I start to think maybe, at last, things will stay better.

She would be angry at me…

Then I come around a corner, catch something in my peripheral vision, wake up from a dream–sometimes a dream that has nothing to do with Jane or hospitals or mortuaries or cemeteries–sometimes for no reason at all–and it all rushes back in and I’m standing or sitting by that bed or rolling her on her side or looking out that hospital window…

Why we don’t talk about it

I understand why neither Aretha nor Steve talked about their NET cancer while they were alive. I watched what it did to Jane, year-by-year, month-by-month, week-by-week, day-by-day, hour-by-hour, minute-by-minute, second-by-second. They were all proud people who spent their lives in control–and who saw that control vanishing in the most embarrassing ways imaginable.

It’s not that I don’t cry.

And I understand why their families don’t want to talk about it now they are gone. To talk, even in vague terms, about what happened to the person they loved–and about what happened to them as they watched that person sliding into the abyss of diapers and a second childhood–comes at a heavy cost. It’s taken me nine years to put even this much down on paper and release it for public view.

Real courage, real dignity

Each of you reading this would do anything to protect those you love. Each of you would want to protect their image, even in death. We want the world to believe they died a brave, clean death filled with honor and strength and courage–and a kind of calm beauty.

I watched what it did to Jane…

Somehow, a bed soaked in diarrhea doesn’t create that image, for all that that reality makes what they endured so much greater than anyone can imagine. There may be little dignity in such a death, but it rehires far more courage more courage, far more patience.. And it is why NET patients and caregivers need more than sympathy or dignity–they need a cure.

Thoughts on Jane’s 65th birthday

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By the time of Jane’s heart surgery, her cancer had consumed much of her liver. The next step in her treatment would have been to address that issue. Today, doctors might go after the primary tumor instead.

The birthday that might have been

Jane would have turned 65 today. We would have done something special. I’d have written her a poem, given her presents and flowers and a couple of cards. We’d have gone to dinner someplace we both liked. Given the milestone 65 represents, perhaps we’d have spent the weekend on the lake or flown somewhere exotic.

…the moment Jane stopped breathing.

Instead, I took flowers to her grave. The weather is raw and blustery. I didn’t stay long. I could hear her in my mind telling me to get somewhere warm. I woke up in the dark this morning. I immediately missed her. That happens most mornings–but this morning was harder than usual. I lay there with tears in my eyes.

Jane’s last birthday

Her last living birthday we spent in the hospital together. She was two days out of surgery and improving rapidly. They wanted to move her to the step-down unit, but there was no bed available. Instead, they began the process where she was. They took her off oxygen and removed the remote monitors. They began weening her off the other drugs she was on.

Instead, I took flowers to her grave

We had talked about what I would do once she moved out of the ICU. I’d check out of my hotel room the next day and head home. I’d visit on the weekend and maybe once during the week. Jane didn’t want me driving back and forth to Boston every day after work. She needed to focus on healing–not worrying about me driving home. Her doctors agreed: I’d just be in the way. Jane joked she’d gotten a new heart for her birthday.

Harbingers of death

Everything shattered a bit after 7 p.m. The night nurse came on and started running vital signs. That’s standard procedure in the ICU–or anywhere else in a hospital. What she found, she didn’t like. And things went rapidly downhill from there.

She needed to focus on healing.

Jane’s pulse-oxygen level had dropped into the upper 80s. It’s supposed to be well into the 90s–anything below 90 marks a problem somewhere. We were up all night. They did scans and blood tests and could find nothing to explain what was going on.

Carcinoid birthday greetings

What was going on was the first of four carcinoid crises likely triggered by the physical therapy and the weening her off the octreotide drip that helped fight off carcinoid crises in operative post-operative NET cancer patients. No one realized it at the time. It was one of the things Jane taught her doctors. Unfortunately, they didn’t figure that out until she was in her final coma.

Everything shattered a bit after 4 p.m.

Jane never lost consciousness that night. I suspect that was another piece of the carcinoid crisis as insomnia is a symptom of high levels of serotonin. But I chalked up her wakefulness to what was going on around us.

When your best isn’t enough

I wonder now how much brain damage she sustained that night. She was still recovering from the anesthetics from the surgery and was a little loopy to begin with. I never saw her pulse-ox levels dip below 80. But she was never quite right after that night. Still, Jane was always hyper-sensitive to anesthesia, so I just don’t know.

Jane never lost consciousness that night.

I just don’t know too many things from that time period. I second-guess everything I did and said during that final month of her life. I console myself with the knowledge I did the best I could with what I knew and believed at the time. But there was too much suffering there for the final outcome.

The cost of knowledge

I was at a funeral this week. One of the readings was the story of Jesus raising Lazarus from the dead. I know that act made his family and friends happy. But we never hear from Lazarus. I wonder where he was and what that miracle took him away from.

I second-guess everything

And I wonder what additional suffering I inflicted on Jane by calling her back from the edge of death on two later occasions before we let her go home. Those things haunt me. I know the good that came of those decisions. I know what the doctors learned, know how the nurses felt about what they saw. I know how those extra days have shaped my life since–for both good and bad.

Happy birthday or sad birthday?

But I just don’t know if I did the right thing–don’t know how to balance any of it. I doubt I ever will. I’m struggling with a lot of things–trying to figure out what I’m doing, whether I’m making enough of a difference for the energy I’m putting into things, whether it’s time to do something else.

Those things haunt me.

Today is hard. It is always hard. I remember how happy we were for so much of the day–and how rapidly things fell apart as day turned to night. I feel enormous bitterness and enormous sadness. And then I tell myself how little of the good that has happened since exists without that day and the ones that followed.

That thought does not console me. People tell me it should. But they have no idea what I lost–and no idea what the world lost–the moment Jane stopped breathing.

The pain of NET Cancer Day

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People tell me my wife was beautiful. I certainly thought so. But the beauty of her mind and soul dwarfed her physical beauty. NET cancer could not touch those.

The Tenth of November

I never look forward to World NET Cancer Awareness Day. It reminds me of too many things. It is the day of the month on which Jane died, though she died in December and not November. But the tenth of every month tends to be difficult.

We need to kill NET cancer.

Still, November 10 is worse than all but December 10. It was the night before what would prove our last trip to Dana-Farber together–the last night that had any sanity in it at all. Not that there had been much sanity in our lives for more than a year.

The price of ignorance

The H1N1 virus had hit Jane particularly hard in October the year before. She’d missed a month of work between it and the pneumonia that followed. In truth, she never fully recovered from that.

…the last night that had any sanity…

I wonder how many years that flu cost us. Sometimes I think it opened the door that let the NET cancer she’d unknowingly been fighting for 30 years gain the upper hand. Other times, I think the NET likely weakened her enough to let the H1N1 really kneecap her. Probably both statements are true. Both things killed her, though the cancer was always going to be the root cause.

The face of NET

She was in tough shape on November 10. We both knew things were coming to a head. The thrice-daily octreotide injections were doing little to thwart the diarrhea, the bloating, or the swelling that had started in her legs that spring and had spread to her abdomen. She’d stopped trying to go up and down the stairs to the cellar. She’d stopped helping with the cleaning, though she did still manage to cook dinner much of the time.

…she never fully recovered…

She was a better cook than I was, so I cleaned up most nights. When I cooked, she cleaned. Now, it didn’t matter who cooked, I did the dishes. We’d always shared the yard work and the housework. She didn’t like that those tasks now all fell on me. She told me she felt guilty. I told her she’d do the same for me if I were the one fighting cancer.

Talk in the face of NET

We talked that night. She listed the things we needed to make sure we asked the next day. I added a couple of things. My official job was to make sure we came away with answers to everything, as wells taking the notes. My bigger job was staying supportive and positive no matter what we heard.

She told me she felt guilty.

We talked, too, that night about other things. We always did. We talked about our days, what we’d read, what our students were doing. The long drive to and from Boston sat on the table in front of us. It stayed quiet, as did the cancer once we’d finished with it. We both knew they were there.

Miracles needed

I can’t say what she felt that night. I know I was terrified. She’d lost too much weight, too much strength. She was dying and there was nothing I could do but hold her hand, massage her feet, and hope the long-odds approaches both we and her doctors had in mind would work. I put on a confident face. She did the same.

We both knew they were there.

We didn’t need a miracle–we needed several. It turned out we needed miracles we didn’t even know we needed–that the doctors didn’t even know we needed. It was November 2010–and what we knew about NET cancer with certainty could be reduced to a 3×5 index card. And some of that was wrong.

Long day’s journey into NET

The next day, the traffic was awful. But we came away hopeful. We met with a dietician who gave us some thoughts on things Jane might eat that would help. Jane’s doctor wanted to set up a procedure for the following week to draw out some of the fluid from Jane’s abdomen that would alleviate some discomfort and help get a handle on what was going on.

She was dying…

But when we got home–after three hours in traffic–I had to carry Jane up the stairs. It was the first time that happened. We chalked it up to each other as the end result of a long day and too much time sitting in traffic.

NET consequences

The next day, Jane’s heart surgeon called. A month before we’d talked about surgery “after the holidays.” Now, after seeing the results from the day before and talking with Jane’s other doctors, he wanted to do it Monday or Thursday. We went with Monday. That meant driving to the hospital late Sunday afternoon

I had to carry Jane up the stairs.

I’m not sure Jane would have made it until Thursday now. Given the month that followed, I’m not sure she would not have been better off. She would have died at home in her own bed on her own terms. But we both wanted her to live–to have a fighting chance–to reach the goal she’d set the day she was diagnosed.

What it was worth

She had the surgery. Her heart was worse than they expected. With a lesser surgeon, she would have died on the table. The doctors learned a lot in the days that followed. The people around us learned a lot in those 25 days. I learned a lot in those 25 days.

…to have a fighting chance…

But it cost her more than I can say. And I have never been the same. The tenth of the month has come around 107 times since I caught her last breath on my lips.

The deepest wounds

I did not cry that night. I was too numb–too numb for a long time. And I have work to do. But the tenth of every month breaks open every wound and leaves me with tears and memories–memories of the end.

…it cost her more than I can say.

We need to kill NET cancer. It tears apart the soul of the patient who has it–tears apart the souls of those they love.

My nightmare nights

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My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution--but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.
My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution–but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.

What keeps me awake

Three things keep me up at night. The first derives from the empty space beside me where Jane is supposed to be. I’ve tried for years to describe what that is like–how many nights it makes me reluctant to go to bed and deal with that reality.

Jane’s story becomes the norm.

I won’t go into that again here. I’ve written too much about grief, here and elsewhere, over the years. Not much has changed over the eight years, ten months, and 29 days since Jane died. I’ve just gotten better at coping with the pain.

The diagnostic nightmare

The second thing that keeps me up is the reality that too many patients go through too many incorrect diagnoses before learning the cause of their suffering is neuroendocrine cancer. Despite the improvements in awareness and scanning technologies, patients still go through years of shuffling between doctors and multiple diagnoses that tell them they have something else.

…the empty space…

I wonder how many patients die of NET cancer believing they have something else. Jane could have dropped dead in front of her students with a piece of chalk in her hand–and I would have been told she died of heart failure or a stroke. Her students told me later of episodes in her classroom her last year teaching that sound like a stroke–sudden changes in her voice, in her handwriting, moments of confusion…

Why diagnostics matter

The valves in the right side of her heart were dying. The serotonin from the tumors in her liver was not being metabolized. Instead, it was frying her valves into a brittle, fibrotic mass that leaked fluid into her legs and abdomen. We wouldn’t learn about that until September.

…too many incorrect diagnoses…

Her liver was toast–90 percent of it eaten by neuroendocrine tumors. It was a marvel she could walk, let alone climb stairs or teach. And then, she couldn’t.

How many don’t know?

By the time Jane was accurately diagnosed, it was really too late to do much of anything. We tried anyway. Doctors tried to treat the symptoms, tried to decrease the tumor load, tried to repair the damage to her heart, made plans to try to address the liver problem. And we made plans for the years ahead we thought she might find a way to enjoy.

Her liver was toast…

I wonder how many patients die without knowing what they had? How many die without the treatments that might ease their suffering? How many loved ones think they know what killed their wife, husband, mother, father, child–and are wrong? Not, mind, that it makes much difference in most respects: loss is still loss.

Autopsy studies

The number may be bigger than we think because the number of patients is potentially much bigger than we want to think. In February, 2010, eleven months before Jane died, researchers published a paper on the results of an autopsy study.

We tried anyway.

They hadn’t gone in looking for anything in particular. They just wanted to see what was there. They found neuroendocrine tumors in close to one percent of the bodies. I encountered that study only after Jane had died.

Backing up that study

Three years ago, I had lunch at a NET cancer conference with a doctor from a major medical center. He told me one of his colleagues was engaged in a similar study–and finding similar results.

…researchers published a paper...

Slightly less than one percent doesn’t sound like a lot–until you scale it up. The US population is roughly 330 million. One percent of that is 3.3 million. To me, that’s a big number. And it scares me.

The stuff of nightmare

We can’t say with certainty what the number of undiagnosed neuroendocrine cancer cases is. Three million is a worst-case scenario. But it is the stuff of my nightmares.

And it scares me.

Primary care doctor awareness is enormously important. Nurse practitioner awareness is enormously important. ER personnel awareness is enormously important. Catch this cancer early in its progression and surgery can create a cure.

Catch it late, and Jane’s story becomes the norm. It’s a norm that I would wish on no one. And it is too often the case. It, too, is the stuff of my nightmares.

Death, incidence, prevalence–a NET perspective

awareness, Death, NET Cancer Awareness Day/Month

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

 

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

Diagnoses and deaths

About 328,030 Americans were diagnosed with gastrointestinal cancers in 2018. There were 165,460 deaths. That’s 27 percent of all the cancer deaths in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…more research than we are doing now.

In contrast, 234,030 people were diagnosed with lung cancer and 154,000 died; 334,200 new breast cancers were diagnosed and 42,260 people died.

Death by the numbers

In terms of both diagnoses and deaths, colorectal cancer is the worst of the GI cancers. Last year, 145,600 Americans were diagnosed with it: 51,020 died. It is also among the worst cancers overall in terms of mortality–only lung cancer killed more Americans last year.

There were 165,460 deaths.

Traditional pancreatic cancer was diagnosed approximately 56,770 times last year; 45,750 died from it. It is the third most common form of cancer death in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

Where NET cancer sits

Liver/biliary cancer is the fifth most deadly form of cancer. With 35,740 deaths a year, it trails breast cancer by about 6500 deaths a year. But it is a far less common diagnosis at 54,400. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…only lung cancer killed more Americans last year.

As I wrote two days ago, we have no up-to-date numbers for NET cancer. The 12,000 cases a year cited in 2012 would put it behind both stomach cancer (27,510) and cancer of the esophagus (17,650) but ahead of all other GI cancers. Even assuming a five percent increase in diagnoses, which would take the number to 16,080, it would still trail those more frequently diagnosed cancers.

But no up-to-date numbers

We don’t have any recent statistics for how many people die from the various NET cancers each year in the US either.

…more frequently diagnosed cancers.

The one thing we do know is, in 2012, about 171,000 diagnosed patients were living with the disease in the US. We had two drugs approved for use in NET cancer patients at the time–and surgery for those whose disease was discovered early enough for that to be helpful.

Making a case for an increase

We’ve since added three FDA approved drugs, liver embolization procedures, and a radiation treatment called PRRT that had been used for some years in Europe. There are additional treatments in the pipeline.

We don’t have any recent statistics…

My guess is that 171,000 patients has increased over the last seven years, perhaps significantly.

Why second?

But even if it hasn’t, NET cancer would still be the second most prevalent form of GI cancer, trailing only colorectal cancer. The others kill too fast to build up that large a number of patients. Simply put, there are very few five-year survivors of pancreatic, liver, stomach or esophageal cancer.

There are additional treatments in the pipeline.

Colorectal cancer is also deadly, but so many patients are diagnosed with it that the net gain in living patients is about 100,000 a year.

Quality of life issues

Yes, NET cancer patients can–and often do–live for many years after diagnosis. I know many patients who have fought NET cancer since before Jane was diagnosed over nine years ago. But quality of life matters–and the quality of life for many NET patients is quite poor: constant diarrhea, insomnia, intestinal pain and bloating are just some of what those patients deal with constantly.

The others kill too fast…

Our treatments, other than surgery, are not curative. They offer symptom relief and slow the progress of the disease. Nor do they work for every patient.

And many suffer for many years before they get a diagnosis. It was 30 years between Jane’s first symptoms and her diagnosis. She was an outlier, but many go 5-7 years before being diagnosed.

Research and awareness matter

The problem is the tumors really can form just about anywhere–and the symptoms can vary based on where the tumor is located and what hormones it is producing. And sometimes, there are either no hormones to detect–or, perhaps, hormones we don’t yet know how to detect.

…many suffer for many years…

All of this underlines–again–the need for greater awareness among both medical professionals and the general public–and much more research than we are doing now.

Little things real killers in grief

Death, Grief, Jane

A life of love is created by the 10,000 little things we take for granted--until they are gone. Jane already had had NET cancer for more than a decade when this picture was taken; we just didn't know it.
A life of love is created by the 10,000 little things we take for granted–until they are gone. Jane already had had NET cancer for more than a decade when this picture was taken; we just didn’t know it.

Big things hurt; little things kill

Valentine’s Day, Christmas, Thanksgiving, birthdays, Halloween, even our anniversaries are not the worst days in my life since Jane died. They can be hard–and no mistake. But the little things are the real killers.

The little things really do add up…

I loved Jane’s voice. No recordings of it exist, though. I don’t know when the sound of it vanished from my memory. All I have left is the scarred, post-surgery voice she had in the hospital. Even it fades 84 months later. To be honest, a part of me wishes that, too, were gone. It comes freighted with too many painful memories.

The little things I miss

I miss the morning hugs; I miss holding her hand; I miss the daily drive to work and the walk to her classroom. These seemingly small things grounded us both, reinforced the basis of our love in ways no bunch of flowers or cards could do.

I loved Jane’s voice.

We cooked together; we cleaned together; we shopped together; we gardened together. Now I cook alone, clean, alone, shop alone, garden alone. The lovemaking and the sex matter far less than the companionship–the simple day-to-day acts of sharing a life together.

Logic, evidence and compassion

Jane was smarter than I was–better able to look at evidence and draw conclusions dispassionately. Those things tempered my compassion. And my compassion, she said, tempered her logic. We made each other better together than we were alone. Now, bereft of that balance, I second-guess my every decision and my every action.

…the simple day-to-day acts of sharing a life together.

My single talent revolves around words. It was the one place my skill was greater–marginally–than hers. But even there, she made me better. She was my best and clearest editor. She helped me prune and shape my written words to greater effect constantly. And when the writing fit was truly on me, she would make sure I ate and drank, knowing in that state, time ceased to exist for me.

Little things shared create partnerships

She, too, could vanish into herself. When she crafted she got caught up in the emerging piece so much time stopped for her, as well. The same thing happened when she worked an interesting physics problem or tried to unravel a complex concept into terms her students would understand. In the classroom, for both of us, the world ceased to exist beyond the people in front of us and their need to understand.

We made each other better…

One of my professors told me I had a mind that embraced everything–that wanted to understand everything and how it was connected. Jane had a similar mind. We read everything on everything. And then we talked about it–education science, art, literature, history, philosophy; the universe was our classroom and we were each other’s teacher, student, and colleague.

Learning to hear

But we also learned from each other how to listen with a singular focus some might find unnerving. We heard each other with every sense attuned to the other. We did not hear the other’s words–we felt them in our entire being, with every sense–and in every sense.

We read everything on everything.

And that is what I miss most–the sense of two souls twined together beyond words and beyond thought or emotion. And it is what frightens me most when I think about the possibility of other relationships. I know how long it took us to reach the place that we were–how much time and how much patience and how much understanding. We worked at being us every day.

The little becomes the big

In the end, it created this enormous vulnerability we did not conceive of–that if one of us died–despite our deeply held beliefs–the loss would cripple the other in ways I only now begin to understand.

…the sense of two souls twined together…

And yet, I know I would risk that same investment to have that feeling of unity again. The little things really do add up to something far greater than two little lives in a universe of stars and open space.

Seven years: an ending and a beginning

Death, Grief, Jane
For seven years, my Saturday ritual has included a visit to Jane's grave. Today seemed different.
For seven years, my Saturday ritual has included a visit to Jane’s grave. Today seemed different.

The cemetery

I drove to the cemetery this morning. The ground was covered in a thin coat of snow and there was a touch of wind. It was cold, but I’d dressed for it. I stood at Jane’s grave. I said some things to her stone–private things and not so private things. The things one says at the grave of one seven years’ dead after seven years of mourning.

Tell them you love them in word and in deed.

I received no signs–no acknowledgment. I didn’t expect any. Her rebirth came nearly three years ago. I can see her toddler form in my mind’s eye, can see her parents, can almost hear her new voice. Her soul remembers me, but not her child-mind-body. She has new and old work before her–work that eventually will take her to new places and new loves.

The length of seven years

I miss her. I will miss her until Time’s river brings our souls together again some lifetimes from now. In the scope of time, that will be the blink off an eye. But that is not how we experience time in these mortal vessels. From that perspective, seven years is both the blink of an eye and an eternity. Today stretches on infinitely despite the efforts of my friends to distract me–despite my own efforts to distract me–from the events of seven years ago.

I received no signs–no acknowledgment.

A death watch is a hard thing. The details etch tendrils of acid into the brain more deeply than any but the brightest joys–and even those joys they somehow occlude and pervert to a degree. I can see Jane coming down the aisle toward me on our wedding day, remember with crystal clarity waking up on Christmas morning in our new home. Each Valentine’s Day morning, each Christmas morning is still there. And yet each now has a faint tinge of what we did not know was coming.

An imperfect love

In some senses, those memories are the richer for that knowledge. But they remain painful to look at–almost too painful to be fully enjoyed. When I return to the present moment, I know there will be no more new memories of the two of us together–not in this lifetime. I am starved for the simple joy of her voice coming through the door, of the simple note tacked to a door, of her feet in my lap as we watched TV or graded papers.

Today stretches on infinitely…

We argued. We disagreed with each other. Sometimes we shouted at each other. There was nothing perfect in us or in our relationship. But we loved each other–our lives wrapped up in each other. Our souls meshed at every level. We thought everyone’s did. But we also knew maintaining that mesh required an every day effort from both of us–even in anger, even in pain.

Death is easy–compared to love

Letting her die was easy compared to what followed. Her body failed her. I knew what she wanted when there was no more hope, no more value to her going on. I loved her enough to let her body go–let her soul move on. But it broke my heart in ways neither of us saw coming. Seven years later, it still hurts.

…our lives wrapped up in each other.

And yet, I keep trying to move forward one step at a time. Somehow, these two days have a sense of closure to them–the kind of closure funerals bring in our mythology of death and mourning, but rarely deliver to those closest to the one dead. I have cried a different kind of tears this weekend, tears that seem to say good-bye rather than express the pain of mourning. There is sorrow and hurt in them–yet something more, as well. I can’t explain that something more–just report its existence.

Seven years’ of lessons

The journey continues. The work continues. NET cancer still needs a cure. The world still needs the lessons we spent our lives serving–still needs ambassadors for unconditional love, for the use of evidence and logic and compassion, for all the things we tried to be flawed exemplars of. Death does not stop us or end our work–just shifts it to other venues.

Seven years later, it still hurts.

Tonight, give your loved ones an extra hug, an extra kiss. Tell them you love them in word and in deed. Give an extra thought to those who live on the fringes–to the homeless, the hungry, and the bereft. And remember the sick and the dying and those who care for them. Do all you can to lift the burdens of others. It is what Jane did every day of her life. It is what I try to do.

Thankful? Perhaps. Terrified? Absolutely

awareness, Caregiving, Death, Grief, Holidays, Jane
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.

Thankful for what is

I have much to be thankful for: I have cupboards stocked with food, I have a roof over my head—a heated home with comfortable chairs and a warm bed to sleep in. I have clothes to wear at every season of the year. I have friends who would walk to the Gates of Hell with me if I asked them to.

It’s painful to lose your wings…

Most importantly, I have my health. Yes, I have the aches and pains anyone my age experiences. Yes, I’m still recovering from the summer’s surgery. And yes, I’m still grieving the loss of my wife seven years after her death. But my mind still works and I can still walk a goodly distance at a pace that would leave many a younger person gasping at the roadside.

Thankful but pained

One night, when Jane was in the hospital and unconscious but still with weeks to live, I stood alone in the waiting area outside the ICU. I was looking out the window at the city beyond. But the city did not register. The cars in the streets below did not register.  My mind was in the room with Jane.

I have much to be thankful for…

I was always in the room with Jane. If I went to dinner in the cafeteria, my mind stayed with her. If I drove home to pick up clean clothes and pay the bills, my mind stayed with her. When the nurses sent me out to take an afternoon’s walk, my mind stayed with her. Truth be told, part of my mind has never left that room.

Memories and weights

I still see the early morning view of Binney Street from her window—the cancer patients pulling up to the door of the Dana-Farber clinic and walking in. I still see Jane sleeping in her bed, still see her not sleeping when the bouts of insomnia came on, still see the madness and anger in her eyes. But I still see the smiles, still feel her hand in mine, still feel the tears and the final brush of her lips as she died.

My mind was in the room with Jane.

But that night, standing alone, looking out over the city, the enormity of what I was doing came down on me like the world settling onto Atlas’s shoulders. I had two decades of conversations to rely on—and they were too slender to do more than be crushed beneath the knowledge that I really was at the point of the spear—and thoroughly alone. I had friends and doctors behind me, but the weight was mine—the decisions were mine.

Living with decisions and consequences

On good days, I know I made the best decisions I could, given the information I had to work with. On bad days, the guilt is overwhelming. Most days fall between those two extremes. I console myself that Jane’s death—like her life—made a difference in the lives of others.

…the decisions were mine.

Seven years ago today, Jane was in a coma. I talked with her doctor. I talked with a friend who had come up to visit. Jane had come through one coma already. Part of me said,”Enough. Let her go.” But there was hope, I believed, with the right approach and a bit of luck, that Jane’s desire to be the first person to beat NET cancer might yet be realized. I let them convince me the chance was good enough.

Thankful, but…

And for 13 days, it looked like the right decision. And then, suddenly, it wasn’t. If you’ve been in my position, you know what that feels like. If you haven’t, I hope you never do.

Jane was in a coma.

This is what it is to be a caregiver and lose the person you love at the end. You can have food, shelter, clothing and friends. You can know how thankful you should be for each of those things—and you are. You can have your health and know how valuable that is, and be thankful for that, as well.

The terror of the void

But there is this void you can’t fill—that you are afraid to even try to fill. At first, you give yourself altruistic reasons not to. “I would never want to put someone else through this,” you tell yourself. “I don’t want anyone to feel they have to live up to my image of the one I’ve lost—that they’d constantly be compared to an idealized memory.”

You can know how thankful you should be…

The truth is, you’re terrified. You don’t want to go through watching someone else you love that much die again. You don’t want to hurt like this again. You don’t want the responsibility or the guilt or the pain. You come to prefer the real pain of solitude to the potential pain of that level of loss.

The end of the world

The Mulla Nasrudin, a Sufi teaching master, put it best when he said there are two ends of the world. “The lesser end of the world is when I die. The greater end of the world is when my wife dies.” Truly, the death of one’s other half truly is the end of the world. I’ve experienced nothing more painful.

But there is this void you can’t fill…

Truth be told, I’ve had momentary crushes—feelings I’ve squashed nearly as quickly as they appeared. When I have thought women have shown potential romantic interest in me, I’ve been quick to drive those interests away–or into safer channels. I’ve never been particularly quick at picking those things up, so perhaps those moments were imaginary. But I’m terrified to think any of it might be real—and both my conscious and subconscious minds have proven quick to put a stop to any potential relationship beyond friendship. Even that, sometimes, frightens them.

Of wings and hearts

It’s not that I can’t imagine falling in love again. I hear Jane’s voice in my ear constantly, reminding me that part of that final Saturday conversation before she went into the hospital was about her desire for me to find someone else if she died—to fall in love again. But my wings were singed long before I met Jane. She healed them, made them strong again. But her death charred them back to cinders.

Even that, sometimes, frightens them.

It’s painful to lose your wings that way. It hurts like Hell to have half your heart carved out of you without benefit of anesthesia. That’s what grief is like when the love is strong enough. But I can’t live with half a heart—don’t want to live without my wings. Still, I remain terrified of what happens if they fully recover. And equally terrified of what happens if they don’t.

Birthday takes me back seven years

awareness, Death, Grief, Jane, NET Cancer Awareness Day/Month, Uncategorized
Today would have been Jane's 63rd birthday. Seven years ago, she was recovering from heart surgery.
Today would have been Jane’s 63rd birthday. Seven years ago, she was recovering from heart surgery.

Jane’s birthday present

“I got a new heart for my birthday.” Jane said that cheerfully seven years ago today. She had gotten out of bed, briefly, for a short walk down the hall. She’d begun doing other pieces of physical therapy. We were preparing to move her to the step-down unit as soon as they had a bed for her. They’d taken off the monitors as part of that preparation. It was truly a happy birthday for both of us.

…especially on her birthday.

Then the shift changed and the new nurse started doing her review of Jane’s condition. Jane’s blood-oxygen level had dropped into the upper 80s. Jane went back on oxygen, but the numbers refused to budge. Then they fell into the low 80s. They took Jane to another building for a scan in the wee hours of the next morning. I never got back to my hotel room that night.

Birthday night drama

None of us realized until weeks later this may have been the first of the carcinoid crises that would eventually kill her. We thought the problem came from a lung that hadn’t fully re-inflated after the surgery. Jane would spend many hours strapped into a CPAP mask over the next couple of days. She hated the mask. She was claustrophobic to begin with. Life in that mask was a hateful struggle.

I got a new heart for my birthday.

This was not the first complication in the replacement of the valves in the right side of Jane’s heart. Two days before a 4-6 hour operation had turned into 10 hours. First, they’d had difficulty placing the central line because Jane was so dehydrated her veins just didn’t take well to the needles. Then, in mid-operation, they’d discovered the damage to her heart was much more extensive than anyone had imagined. The surgeon had to build a new seat for one of the valves.

Two days before Jane’s birthday

I’d sat in the heart surgery waiting area as doctor after doctor came in to speak to other patients’ loved ones. At one point, I went for a walk down Tremont Street to Mission Hill Church. Senator Ted Kennedy had made a similar trek every day when his son was in the hospital fighting his cancer. Kennedy’s own funeral was held there years later–and Jane and I had watched it on television.

Life in that mask was a hateful struggle.

In college, I’d lived in that neighborhood. I’d watched the sun rise from a small park next two the church on many mornings. That afternoon, I sat in that same space for a time. Then I went inside and sat in a pew at the back of the church. Someone walked the Stations of the Cross as I sat there. I’m not Catholic–not even traditionally Christian. But the arches and the stained glass and the silence eased me marginally.

Into darkness

I walked back to the hospital, hoping for some news. There was none to speak of–just that the surgery continued. The people at the desk were supportive. They’d seen this all before–knew and understood my anxiety. Slowly, the room emptied out until I was the only person besides the person on the desk still there. At 8 p.m., they closed that area. I went to the lobby outside the ICU and let the nurses know I was there. Periodically, they gave me what bits of news they had.

In college, I’d lived in that neighborhood.

I tried to watch some television. It was just noise. Most of the time I stood at the window, looking out over the area I had once called home–and pacing back and forth, trying to burn off the nervous energy. I did that a lot in the weeks that followed when I couldn’t be with Jane for one reason or another.

Home by Christmas

Eventually, they told me Jane was in a recovery room and would be upstairs in a couple of hours. I called her father and sister to let them know, then settled in to wait for the surgeon. The surgeon came up about 11:30. He told me about the damage to her heart, the problems with her dehydration. But the surgery had gone well, despite that. He expected her recovery would go as planned–slow, but ultimately, she’d be home by Christmas.

I walked back to the hospital…

They let me see her about an hour later. They try to prepare you for what you will see. People sometimes pass out when they see someone like that. The paleness alone is difficult. There are lines and wires everywhere and you can’t touch the person you most love in all the world despite knowing how much you need to hug them–to let them know you are physically there and not just a disembodied voice in their dreams.

Back to the present

Wednesday, I had meetings with people at Dana-Farber, Jane’s oncologist, Jen Chan, among them. I had a meeting with people from the Jimmy Fund Walk in the morning. Then I went into Kenmore Square for lunch. I walked back to DFCI afterward for my meeting with the 3-in-3 committee. I was early, so I walked out to Mission Hill Church. They were in the middle of a service, so I didn’t go in.

…she’d be home by Christmas.

I walked back, going down the long main corridor at Brigham and Women’s Hospital, as I had during every day of Jane’s time there. It dawned on me only then I was retracing my steps on that day seven years before. My conscious mind was focused on meetings and the work in front of me. My subconscious was busy reliving the events that started me on this path.

Birthday memories

After the afternoon meeting, I walked back to the heart clinic building. I took the elevator to the sixth floor ICU. I stood, once again, in front of those windows. I looked out at the lights on Mission Hill. And I remembered the young man who once lived there. I remembered the older man waiting for news about his wife. I saw the face of the person I’ve become–and saw the work that remains for me to do.

…I walked out to Mission Hill Church.

Jane could have died that day seven years ago. She could have died from that first crisis the night of her birthday. I could have let her die when the second crisis took her down the following Monday. Sometimes, I think I should have. Sometimes, I think she would have liked any of those options better. The thought still haunts my sleep.

Contemplating different paths

I would be different today. I might be doing other things. Perhaps I would sleep better. Perhaps not. The events that followed shaped more than my life, though. They helped shape the lives of others as well–doctors, nurses, caregivers, patients. New knowledge emerged from those events–new alliances, new friendships, new ideas, new focuses, new procedures, as well.

The thought still haunts my sleep.

Jane’s death and the manner of it made a difference in the lives of others, just as her life had. But I miss her–and the loss still hurts–especially on her birthday.