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.