Buried truths about NET cancer, 2010

Buried emotions

We buried Jane on Saturday, December 18, 2010. I went back to work Monday morning. People told me I shouldn’t have–and they may have been right. But I knew our children–our students–had lost their surrogate mother and barely seen their surrogate father in more than a month. I needed to be there for them–and they needed to be there for me.

When we reached cruising altitude, I began to write.

I arrived early that morning–as we always had. The halls were dark and empty as my soul. I opened the door to my classroom. My students stood quietly in the dark beneath a sign that read, “Welcome Home.” That fanned a tiny flame I barely knew existed. In that moment, I knew I was not completely alone–that I would find a way to survive this.

Buried past

For many NET cancer patients in 2010, survival was the central issue. As I said in yesterday’s post, they had few options–none of which did more than slow the course of the disease and/or alleviate some of the symptoms. Those symptoms–frequent diarrhea and flushing, for example–were inconvenient and embarrassing at best. At worst, they became deadly.

…I knew I was not completely alone…

Jane’s NET cancer had gone undiagnosed for decades. She had tumors in her liver the size of her fist–and smaller tumors scattered everywhere in that organ. Students told me later there were times they thought she was about to pass out in front of them. She had daily bouts of diarrhea she told no one about. She was dying–likely knew she was dying–but she worried about her students and the AP and Achievement exams they faced in the spring more than she worried about her own health.

Buried conditions

Carcinoid heart disease remains a fairly rare event for most NET cancer patients. It happens when the tumors in the liver create serotonin in significant quantities. The body produces serotonin for a variety of purposes, including controlling the speed of digestion, respiration, sleep, and mood, among other things. Normally, the liver cleans out the serotonin in the blood stream  before it reaches the heart.

She was dying…

But when the serotonin is manufactured in the liver, that serotonin doesn’t get metabolized. Instead, it flows into the valves on the right side of the heart. It is a chemical that is highly caustic–caustic enough to destroy those valves, causing the blood to leak out around the valves and gather in the legs and lower abdomen. This causes swelling, first in the feet, then in the legs, and finally in the belly as the damage increases and more and more fluid leaks out.

Buried truth

That swelling finally got Jane to the doctor. By then, it was likely really too late to do anything. But we tried anyway–both trying to put an optimistic face on for the other. And we had a plan–an unrealistic one, in hindsight, but a plan none the less.

It is a chemical that is highly caustic…

Job One: lower the serotonin levels with Octreotide and  Sandostatin. Job Two: fix the valves in her heart. Job Three: reduce the tumor load in her liver using liver embolization, followed–or preceded–by liver resection. Job Four would go after the original tumors in her lower bowel.

Unburied truth

We never got the serotonin levels under control before her heart got so bad the operation couldn’t wait any longer. Then, the operation discovered the damage to her heart was greater than anticipated. The surgeon solved that damage, but a carcinoid crisis happened every time she started physical therapy to get her back on her feet. Every time she ate, she got hit with massive diarrhea–which left her increasingly dehydrated and weak.

That swelling finally got Jane to the doctor.

Finally, there was nothing left to try–and no reserves left to try with. Early diagnosis–even just earlier diagnosis by a few years–would likely have made an enormous difference. I know a correct diagnosis in 1980, when Jane had her first symptoms, would mean she would still be here today. I’m fairly certain an accurate diagnosis even as late as 2005 might have made a significant difference. Trials existed and maybe she would have gotten lucky. Instead, she died.

Beginning the next battle

My students got me through that week before Christmas. They didn’t expect much from me beyond my presence–and the assurance I would not disappear on them. They–and some of my colleagues–helped me begin to process everything that had happened in the preceding year. I began to see what needed doing and began to think how best to do those things.

Finally, there was nothing left to try…

As I boarded the plane to Seattle that Thursday night to spend Christmas with my family, I began sketching out a plan that started with a single pamphlet. Doctors told Jane for years her symptoms were caused by Irritable Bowel Syndrome. I now knew NET cancer had a too similar set of symptoms. When we reached cruising altitude, I began to write. 

Jen Chan was Jane's oncologist. Seven years after we buried Jane, Jen works exclusively on NET cancer.

Jen Chan, Jane’s oncologist, helped me write my first pamphlet on the NET cancer. Seven years after we buried Jane, Jen will chair a Phase 3 trial of a new drug for the disease next spring.

Posted by walking with jane on November 3, 2017

6 responses to “Buried truths about NET cancer, 2010”

  1. Patricia Wenk says:

    Glad you’re back, Harry!! Keep them coming!!!

  2. edebock says:

    Your students standing in the darkened classroom ready to welcome you home brought tears to my eyes. As a retired teacher, I can picture that moment and how it must have impacted you! Thank you for all you’ve done since that time to help fight this terrible disease.

  3. Hi
    My name is Gloria
    My son has been diagnosed with nets
    I am looking for guidance
    Could you help

    • My best advice is to find a NET cancer specialist. The Carcinoid Cancer Foundation maintains a list of such people by state. I’m not a doctor–and their guidance has much greater value than mine. That said, if you have specific questions, I can try to point you in the right direction.