What serotonin does

Serotonin is an important hormone for human beings. In the right quantities, it balances our moods, aids our digestion, regulates our blood pressure and respiration, and a bunch of other things as well. But if we have too little of it–or too much–the results are nasty.

…it has all filled me with a terrible resolve.

Some NET cancer tumors produce serotonin. Jane’s did. I’ve seen the impact of a steady overdose of that hormone from the outside. What it feels like to be on the inside of that situation is beyond my ability to imagine. But for lots of NET cancer patients, they don’t have to imagine it because they live it every day.

Why NET isn’t ‘the good cancer’

And they can live with it for decades. That fact lets some people–including too many doctors–think NET cancer is a good cancer to get. The patient looks healthy. And in a culture obsessed with weight, some of the women may even be envied for their ability to stay slim. Too many people count the years and forget about everything else.

…the results are nasty.

No one thinks about the quality of life in those decades except for patients and their families. They live with what the disease does to the quality of a person’s life in ways no doctor, no insurance or drug company rep., no average person does. They see the reality of the disease and what it does.

The beginning of Jane’s journey

Jane and her family dealt with her cancer for five years before I met her. They didn’t know that cancer was the cause of Jane’s sudden weight loss in 1980–they just knew she stopped eating. Her mother thought her daughter might be dealing with anorexia. But Jane only knew that every time she ate more than a few bites, her stomach filled up with painful gas that made her look three months pregnant.

The patient looks healthy.

Then the diarrhea would arrive and she’d feel better for a few days. She discovered if she stopped eating after 5 p.m., she had fewer problems. Slowly, she figured out that some foods were less of a problem than others. She adapted her behavior to minimize the impact of the disease–at least where eating was concerned.

Hidden symptoms

She stopped losing weight. Over time, she gained back a few of the pounds she had lost–though nowhere near what she had lost. People around her thought whatever she had had vanished. But it hadn’t. It was still there. She’d just learned to cope with the food part of it.

Then the diarrhea would arrive…

The insomnia was a different story. No one really saw it. When she couldn’t sleep, she got up and made her family fancy pastries for breakfast, graded papers, or prepped lessons. No one connected her sleeplessness and her digestion issues.

And then there was me

And then she met me. I didn’t make those connections either. At first, she kept her dietary issues from me–until I took her out for pizza after a movie one night. When I called the next day, she told me she wasn’t feeling well. The next time we went out, she told me she couldn’t eat after 5 p.m.–that it did bad things to her digestion. She was embarrassed by it and hadn’t wanted to spoil our date. She’d spoiled the rest of her weekend, instead.

The insomnia was a different story.

I come from a family that doesn’t need much sleep. I chalked her hours of sleep up to the same genetics we have that wakes us up after 6-7 hours of sleep. If I get much more than that, I stay groggy for the rest of the day.

Day-to-day realities

It was only after we were married I realized the extent of her insomnia, which gradually worsened over the course of our life together. I’d wake up at 2 a.m. to find her using her earbuds to listen to the tiny radio she kept on her nightstand. I functioned on 6-7 hours of sleep. She worked on 3-4–and sometimes on none at all.

…she kept her dietary issues from me…

Diarrhea was her constant companion. At first, it was a couple times a month. It would be proceeded by a couple of days of boating and gas. She’d trace it back to something she’d eaten or the pressure we both faced in the classroom. A doctor had told her teaching was stressful and the most likely cause of what ailed her. The first symptoms had come on just after she’d started teaching. It seemed logical.

Getting through the day

The number and frequency of diarrhea episodes increased gradually over time. She was embarrassed by them and, for a long time, would not admit even to me that they were happening. Her last year teaching, every morning started with diarrhea followed by an Imodium tablet that would get her through the day.

Diarrhea was her constant companion.

I tried to get her to the doctor, but her response was always the same: “They’ll just tell me it’s IBS, again; that it’s all in my head.” She thought the job was the problem and, in another 18 months we’d retire, and that would solve everything.

Mood shifts

Jane’s moods were also mercurial. We could be laughing and joking or snuggling in each other’s arms and, out of nowhere, she’d be so angry she couldn’t speak. It could be a compliment or a well-meant tease in response to a tease of her own. She would suddenly go cold and silent. By morning, she was herself again, as though nothing had happened.

…every morning started with diarrhea…

Those sudden shifts in mood became increasingly frequent over time. Often, I could ascribe them to the pain in her bloated belly. Sometimes, I knew I’d said something or done something that set her off. But sometimes, they came out of nowhere. Knowing what I know now about serotonin levels and moods, it was one more signal of the cancer that I could not see.

Another masking agent

Menopause came early for Jane. Her menstrual cycle, always irregular at best, went completely haywire in her late 30s. She had the hot flashes and night sweats we associate with menopause start up at about that point as well. Her libido died before she was 45. We still snuggled and kissed each other good night; still woke up in each other’s arms and held hands everywhere we went. We still loved each other deeply. But the sexual piece of our time together was over.

But sometimes, they came out of nowhere.

And, of course, we both ascribed a chunk of her moodiness to the emotional struggles many women go through during the “time.” It made perfect sense. But in the background, those tiny little tumors were churning out their deadly little drops, poisoning everything–or trying to.

Other things we might have connected

Jane had chronic low blood pressure. Her resting heart rate was sometimes under 50. We ascribed both of those things to her excellent physical condition. She never smoked, rarely drank and exercised vigorously virtually every day.

Menopause came early for Jane.

But sometimes she would get dizzy if she stood ups too quickly. Sometimes she fainted getting up off the toilet. She confessed later, there were times she felt like the world was coming to her from far away–as though she were having some kind of out of body experience.

Damage we couldn’t see

Serotonin is a caustic substance. In the amounts we’re supposed to have in our intestines, it doesn’t do more damage than our bodies can repair. But in the quantities NET cancer tumors can produce, they can slowly induce a fibrosis that makes the intestines increasingly brittle. In that state, they have greater and greater difficulty absorbing the nutrients the serotonin is pushing through them at faster and faster rates.

Jane had chronic low blood pressure.

All of this conspired to increase the rate at which Jane was starving to death. She needed bathrooms more and more often. It made travel of any kind more and more difficult. There came a point where just going out for groceries meant a pit stop in every store. And then, even that was too little.

Into the liver

At some point, long before the events of that last paragraph, Jane’s tumors hit her liver and exploded. The serotonin the body produces is supposed to be metabolized in the liver. This prevents it from reaching the heart in all its destructive power. But when the hormone is manufactured in the liver, all that serotonin shoots up through the valves in the right side of the heart, doing to them what has already begun to happen in the intestines.

…Jane was starving to death.

Jane was a physically very active woman. She played tennis every day in the summer–singles with her sister in the morning, often followed by doubles in the afternoon with three men, all of whom were good players. At school, we paced the halls at speeds that left even teenagers trying to keep up with us breathless.

Destroying the heart

As the valves in her heart deteriorated, stairs became increasingly difficult to navigate. Her feet would swell up with the fluid leaking back into her body from those leaking valves. Then her legs filled with that fluid. Then her belly. Without surgery, she would have died from congestive heart failure–essentially drowning in her own fluids as they squeezed her heart to the point of shutdown.

Jane was a physically very active woman.

She gave up tennis that last summer. We tried to go for walks and hikes, but they became shorter and shorter. Sometimes, she would send me on to finish what we started while she sat and read the newspaper or stared out across the water to the farther shore.

Every story is different

Not every NET cancer patient whose tumors are producing serotonin goes through everything that Jane did. Some go through more–or a different mix of events and symptoms. Nor does every NET cancer tumor produce serotonin. Some produce other hormones and peptides that create very different symptoms and experiences. Some appear to produce no hormones or peptides.

She gave up tennis that last summer.

It is a truism among the doctors who have become experts on this form of cancer that, “When you’ve seen one case of NET cancer, you’ve seen one case.” Every NET cancer is different, seemingly, from every other NET cancer.

The impact crater on my soul

I can’t say what any of this felt like to Jane. I can’t imagine what it was like for her to watch her world closing in on her every day until all that was left was what she could see from her hospital bed or the chair in the room she had to be hoisted in and out of with a crane.

 Every NET cancer is different…

I only know the damage it has done to my own mind–my own soul. And I find I can’t describe that in any way that makes people understand the depth of either her suffering or my own in having had to watch her go through it. But it has all filled me with a terrible resolve: NET cancer dies.