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…