Tag Archives: grief

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.

Thirty-seven months of grief

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That night

Jane died 37 months ago tonight. I knew it was coming. I knew there was nothing I could do to stop it from happening. I held her hand, read to her unconscious form, did all that love can do. And then she was gone. Her breathing stopped. Her heart stopped. Her life stopped.

…none are as hard as the day you watch the one you love die…

The doctor came in, listened to her heart, nodded and confirmed what we all already knew. I made the calls I had to make in the shock and numbness that makes a person look so much braver and stronger than he is. A friend drove me home to the silence of this house where we had laughed and argued and cried and loved. I threw myself on the bed. Eventually, I slept. I woke up in the dark and the silence and the emptiness and knew just how alone I was.

We know nothing–until we do

I knew all the theories about grief. I had seen others grieve. I thought I understood. I understood nothing. I knew nothing. There are no time limits on grief. You don’t wake up one day and discover you are “over it.” You get better at coping, but the hurt never really goes away.

…all but a handful will die of the disease unless something changes.

You can bury yourself in work. You can go out with friends and family. You can laugh. You can drink. You can talk to counselors and take the drugs they offer. But at the end of the day, you come home alone, you go to bed alone, you wake up alone. Even in a crowded room at a party there comes a point that you look around and realize you are alone.

Imagine grief mirrored 37,000 times

I had that moment again on Christmas Day. I was at my brother’s house in Seattle. We were all sitting at the table. People were talking and laughing–and suddenly it was just too much. I got up quietly and went to another room. I sat next to the Christmas tree and stared mindlessly into space for a few minutes. My family has seen it before. They know, I think, that I am feeling something difficult in those few minutes. They leave me alone long enough to gather myself.

I try to imagine that and it staggers me.

Over 37,000 people have died of carcinoid and NET cancer since the night Jane died. Each one of them had someone who loved them–spouses, parents, children, grandparents, grandchildren. Each of them had a precious mind and a precious soul that is now missing from the world. My grief has been mirrored at least 37,000 times in 37 months. I try to imagine that and it staggers me.

‘Why do you care?’

There are 120,000 diagnosed patients living with NET cancer in the US–and all but a handful will die of the disease unless something changes. That’s 120,000 more grieving spouses and primary caregivers.

There are no time limits on grief.

Someone said to me recently, “Why do you care about what other people feel? Just deal with your own grief and get over it.” Someone else said, “We all have to die of something. If she hadn’t died of this, it would have been something else. You can’t stop death, so why try? She’s gone. Move on.”

Living the reality of grief

I might have thought that way once. I envy them their ignorance and their ability to maintain their logical fantasy. It sounds nice until you have to live it. Once you live it, you do not want others to experience any part of it. No one who has actually experienced combat wants anyone else to experience any part of it. No one who has actually experienced grief wants anyone else to experience any part of it, either.

Her life stopped.

So I keep working; I keep trying to make a difference. Some days are easier than others. Some days are harder than others.  But none are as hard as the day you watch the one you love die, knowing there is nothing you can do–nothing anyone can do–to stop it.

Tonight marks the 37th month of my journey through grief--and my efforts to save others from its premature experience.
Tonight marks the 37th month of my journey through grief–and my efforts to save others from its premature experience.

Twenty-five months

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The NET Cancer Walker
The NET Cancer Walker

The face in the mirror

I looked at myself in the mirror the other day—I mean really looked—not like I do when I shave or brush my teeth. I did not recognize the person staring back at me in the glass. Jane’s death 25 months ago from NET cancer has changed me as much physically as mentally and emotionally.

…there is no price nor barter for the brush of a vanished soul.

I don’t know what caused me to look. Maybe it was a passing glance that turned to fascination. But had I seen me in the street I would not have known me. Even the eyes have changed. There is sternness there instead of the twinkle I had grown used to over our 21 years three months and eight days of marriage. And my smile has died.

The price of Jane’s NET cancer

I should not be surprised. Our lives were two intertwined vines, locked together from root to crown. No gardener could have pulled out one without damaging the other. When the NET cancer ripped her away, half my roots and stems and branches went with her—and the bits of her that remain tangled in me have hardened to such stiffness that removing them would kill what is left of me.

And now, there is nothing.

Over time I will grow around those parts of her that remain in me—encase them within the bark of my being. But for now, they are all sharp and brittle. They scrape against me and wear down the edges of me, leaving dark scars and avenues for invasion of the soft tissue beneath.

NET cancer’s survivor

Eventually, perhaps, those sores will callous over. I am in no position to know. My vegetable existence is caught up in the moment. I explore the pain of it like a tongue caressing the place in the mouth the teeth have just errantly bit. The taste of it is salty and bitter and tinged with the regret of a self-inflicted wound.

Eventually, perhaps, those sores will callous over.

I’ve been reading a book—From We to Me. At one point the authors talk about something they call “skin hunger.” We are addicted to our lover’s touch—and when it vanishes we become so starved for it that the hunger leaves us open to a thousand poor relationship choices.

The first hunger

I know precisely what they are talking about. There was not a day we did not touch in those 21 years. At the end we held hands at every opportunity—and would have held each other more closely if we could have. Before they sealed her casket, I stood alone in the chapel and kissed her forehead, nose, and lips as I had every night before we slept. And before they lowered the coffin into the ground, I gave it one last kiss, wishing it were her.

Our lives were two intertwined vines…

And now, there is nothing. I go days—sometimes weeks—with no physical contact with another human being of any kind. I crave even a handshake—and a hug…a hug is a pleasure almost beyond imagining. But neither of those comes close to the feel of her next to me in the bed at night—an hours’ long snuggle that stands in memory like a myth of the gods.

The greater hunger

But there is a thing even worse than that physical absence. I had no name for it until two days ago. I call it “soul hunger.” And it is a privation that makes “skin hunger” the merest wisp of desire by comparison. If friends are, as Plato would have it, a single soul in two bodies, what, then, are lovers, whose unity grows out of true friendship?

Jane’s death 25 months ago from NET cancer has changed me…

I miss Jane’s touch; I miss touching her; but it is the absence of her soul that grieves me most and throws my mind into chaos. A hug can be had for the price of a hug—but there is no price nor barter for the brush of a vanished soul.