Category Archives: Jane

Darkness and an empty well

awareness, Death, Grief, Jane
In 1992, Jane had already been fighting her cancer for a dozen years. We lived in the darkness of ignorance--only experiencing endless symptoms no one could figure out. We would only know its name four months before she died.
In 1992, Jane had already been fighting her cancer for a dozen years. We lived in the darkness of ignorance–only experiencing endless symptoms no one could figure out. We would only know its name four months before she died.

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…

Moment of choice

awareness, Jane, NET Cancer Awareness Day/Month, , ,
This day in November I remember the moment I decided to keep Jane alive when I could just as easily let her die. Doing so would have saved her 18 days of suffering. I know that decision made a positive difference in the lives of others. But i still wonder if I made the right call for her.
This day in November I remember the moment I decided to keep Jane alive when I could just as easily let her die. Doing so would have saved her 18 days of suffering. I know that decision made a positive difference in the lives of others. But i still wonder if I made the right call for her.

A moment

“Breathe with me,” I chanted as I held her hand in both of mine..

Her chest rose and fell, rose and fell, rose and fell.

And then it stopped.

I could have done nothing–perhaps should have done nothing. I could have just held her hand and let her slip away. The nurse was in the hall listening to rounds on the patient in the next room. The doctors were all focussed on that.

A decision

We’d talked about this moment–the moment she stopped breathing. But I wasn’t sure. I wasn’t ready.

I opened my mouth and called for the doctors and nurses. “Something’s not right here,” I said in a voice I knew would carry but not convey panic.

They came into the room. They put an oxygen mask on her face and put me behind a screen while they bought a few minutes to figure out what was going on and if her life was over.

Another moment

The hospitalist came onto my side of the curtain. “We think we know what is going on. We think we know how to fix this–how to give her a fighting chance. But we’ll have to intubate her. What do you want to do?”

And there it was–the thing we hadn’t planned for, hadn’t known to talk about–the vast area of gray where we had expected black and white–a simple decision that was no longer simple. But it was a decision I had to make quickly–one way or the other.

And so I chose to let her fight–to put off letting her die for another time–and hopefully another place somewhere in the distant future.

Consequences

Nine years later, I still don’t know if what I did was the right thing or the wrong thing in that moment. I only know I made the choice.

I know the good that came out of that choice. I know there are people who have had that same heart surgery who lived unexpected years because I made that choice. I know we became a beacon that had nothing to do with cancer for some other lives. I know Walking with Jane does not exist without that decision.

I suspect there’s a lot of money beyond what I’ve contributed directly that found its way into NET cancer research that might not have otherwise. I suspect some of the bright lights in the NET cancer community aren’t doing what they are doing if I make a different decision in that moment. I suspect there are dozens of positive outcomes for others because of what the following 18 days created.

Things are different

But I also know those 18 days are 18 days of suffering that Jane did not have to endure. I know how Orpheus felt at the top of those stairs one step away from joy–how it feels to have that joy thrown into endless night by a single turn–by a single moment.

I don’t know how one balances the one against the other–the human costs against the human outcomes. I can’t see how my life is different if I make a different call. I only know it is. I can’t say how the lives of others are different–for better or for worse–if I make a different call. I only know there are lives that are different.

A moment…

“Breathe with me,” I chanted as I held her hand in both of mine.

Her chest rose and fell, rose and fell, rose and fell.

And then it stopped…

And what followed changed things. That’s all I know

Jane went into her first coma on this date in 2010. The coma was caused by what doctors call a carcinoid crisis, which is when the NET cancer tumors suddenly begin producing hormones in even larger quantities than normal. In Jane’s case, the excess serotonin they produced crashed her respiration and blood pressure. Her doctors addressed this with fairly massive doses of octreotide. She would remain in a coma for about 35 hours. She would endure two more such attacks and comas–the last one resulting in her death on December 10.

Putting the symptoms together

awareness, Jane, NET Cancer Awareness Day/Month
NET cancer was once considered a zebra among zebras. That meant it was well down the list of diseases doctors thought about when presented with a set of symptoms that today screams neuroendocrine cancer at me. Increasingly, I wonder just how much of a zebra this cancer really is. Sometimes, I think of it as a horse disguised in stripes.
NET cancer was once considered a zebra among zebras. That meant it was well down the list of diseases doctors thought about when presented with a set of symptoms that today screams neuroendocrine cancer at me. Increasingly, I wonder just how much of a zebra this cancer really is. Sometimes, I think of it as a horse disguised in stripes.

Symptoms don’t always help

The focus of this week’s #30NETfactsin30days posts is largely on the symptoms of the disease. There are problems with that focus. The first is that many patients never exhibit any symptoms at all until the day they are faced with an intestinal blockage or some other life-threatening situation. Not every neuroendocrine cancer appears to secrete a hormone, so finding one based on looking for hormone issues does not always work.

We need your help, too.

And even those that do secrete hormones can go for years without producing more than vague, irritating symptoms that people learn to cope with. That vagueness also complicates things for doctors trying to decipher what is going on. Lots of things can cause intermittent bouts of diarrhea, lots of things can cause flushing, lots of things can cause wheezing…

The specialist problem

To further confuse things, patients may see one specialist for one set of symptoms and remain mum about those same symptoms with another specialist in another field. My wife Jane, for example, talked with a gastroenterologist about her stomach issues and her gynecologist about her hot flashes. The one told her she had irritable bowel syndrome, likely brought on by the stress of teaching high school students, since it seemed to subside over vacations. The other blamed that flushing on early menopause.

…many patients never exhibit any symptoms at all…

That Jane also suffered from regular bouts of insomnia she largely kept to herself–blaming her love of coffee and tea for it–compounded the problem. All those things taken together scream NET cancer to me today. Hindsight is a wonderful thing. But none of her doctors had the ability to put all those symptoms together because they were only seeing parts of the story.

Zebra symptoms

Even had they seen all of her symptoms, though, they still were unlikely to come to the conclusion she had neuroendocrine cancer. As Jane’s heart surgeon said to me the night before Jane died, the first thing we teach young doctors is, when you hear hoofbeats think horses not zebras. That means look at the most common diagnosis for a set of symptoms and treat that first. Only if that treatment does not work should you think about other causes–and the next disease on the list is unlikely to be a zebra.

… they were only seeing parts of the story.

“Unfortunately, a zebra killed your wife,” he finished.

A zebra among zebras

And neuroendocrine cancer was a zebra even among zebras for Jane’s doctors. It was considered thought so rare that Congress eliminated funding for research into it in 1968. They didn’t come back to it until 2008, when they funded a conference of doctors with an interest in the subject to talk about what they would do if there was federal money to fund something.

…the first thing we teach young doctors…

Congress funded actual research for the first time since 1968 in 2010.

If you don’t suspect it…

It was thought so rare that apparently medical schools didn’t it mention it much, if at all. Even today, I regularly hear from both doctors and nurse practitioners the same kind of thing Jane’s doctor told us the day she was diagnosed: “I’ve never heard of this form of cancer.”

…a zebra even among zebras…

The Carcinoid Cancer Foundation has a wonderful aphorism about NET cancer that applies to almost any relatively rare disease: “If you don’t suspect it, you can’t detect it.” It’s the absolute truth. No medical practice orders tests for a disease unless they have strong reason to suspect that disease is present. But it is impossible to suspect a disease you’ve never heard of.

Raising awareness of symptoms

Part of what the #30NETfactsin30days campaign is about is raising consciousness among the doctors and nurse practitioners who are most likely to encounter neuroendocrine cancer at an early stage when swift intervention could make a real long-term impact on the lives of patients.

“I’ve never heard of this form of cancer.”

But part of it is also about reaching out to potential patients. Jane had symptoms for 30 years before diagnosis. She was in superb physical shape. She played singles tennis every morning of every summer up until the summer of 2009. She often played another couple of hours of doubles with men in the afternoon. We walked 2-5 miles every day from spring to late autumn. We frequently went on 20-30 mile bike rides on ancient steel-framed bikes. She had the same body fat as an elite female athlete.

Looking too good to be sick

Despite all that, she had regular bouts of diarrhea, painful stomach bloating if she ate later than 5 p.m., frequent insomnia, blood pressure low enough that she sometimes passed out getting up from the toilet, hot flashes from her late 30s to the end of her life that never went away, a persistent rash on her face she covered with make-up and never gave a second thought to…

Jane had symptoms for 30 years…

She looked too healthy to be sick, felt too healthy to be sick. She didn’t look or feel like cancer was eating her alive. But it was. And it wasn’t all in her head.

The price of ignorance

We need better ways for doctors to communicate what they are seeing to other doctors; better ways to coordinate diagnoses; better ways to bring the supposed zebras to the attention of the frontline doctors and nurses who see patients earliest and most regularly.

She looked too healthy to be sick…

The consequences of our ignorance are enormous for both patients and their loved ones. Jane died less than four months after being diagnosed. By the end, she’d been stripped of every ounce of human dignity she possessed. The person I was died with her that night. The future we dreamed of died that night.

We need to do all we can to prevent that from happening to anyone else. I work at it as hard as a broken soul can. I’m not enough. We need your help, too.

Little things real killers in grief

Death, Grief, Jane

A life of love is created by the 10,000 little things we take for granted--until they are gone. Jane already had had NET cancer for more than a decade when this picture was taken; we just didn't know it.
A life of love is created by the 10,000 little things we take for granted–until they are gone. Jane already had had NET cancer for more than a decade when this picture was taken; we just didn’t know it.

Big things hurt; little things kill

Valentine’s Day, Christmas, Thanksgiving, birthdays, Halloween, even our anniversaries are not the worst days in my life since Jane died. They can be hard–and no mistake. But the little things are the real killers.

The little things really do add up…

I loved Jane’s voice. No recordings of it exist, though. I don’t know when the sound of it vanished from my memory. All I have left is the scarred, post-surgery voice she had in the hospital. Even it fades 84 months later. To be honest, a part of me wishes that, too, were gone. It comes freighted with too many painful memories.

The little things I miss

I miss the morning hugs; I miss holding her hand; I miss the daily drive to work and the walk to her classroom. These seemingly small things grounded us both, reinforced the basis of our love in ways no bunch of flowers or cards could do.

I loved Jane’s voice.

We cooked together; we cleaned together; we shopped together; we gardened together. Now I cook alone, clean, alone, shop alone, garden alone. The lovemaking and the sex matter far less than the companionship–the simple day-to-day acts of sharing a life together.

Logic, evidence and compassion

Jane was smarter than I was–better able to look at evidence and draw conclusions dispassionately. Those things tempered my compassion. And my compassion, she said, tempered her logic. We made each other better together than we were alone. Now, bereft of that balance, I second-guess my every decision and my every action.

…the simple day-to-day acts of sharing a life together.

My single talent revolves around words. It was the one place my skill was greater–marginally–than hers. But even there, she made me better. She was my best and clearest editor. She helped me prune and shape my written words to greater effect constantly. And when the writing fit was truly on me, she would make sure I ate and drank, knowing in that state, time ceased to exist for me.

Little things shared create partnerships

She, too, could vanish into herself. When she crafted she got caught up in the emerging piece so much time stopped for her, as well. The same thing happened when she worked an interesting physics problem or tried to unravel a complex concept into terms her students would understand. In the classroom, for both of us, the world ceased to exist beyond the people in front of us and their need to understand.

We made each other better…

One of my professors told me I had a mind that embraced everything–that wanted to understand everything and how it was connected. Jane had a similar mind. We read everything on everything. And then we talked about it–education science, art, literature, history, philosophy; the universe was our classroom and we were each other’s teacher, student, and colleague.

Learning to hear

But we also learned from each other how to listen with a singular focus some might find unnerving. We heard each other with every sense attuned to the other. We did not hear the other’s words–we felt them in our entire being, with every sense–and in every sense.

We read everything on everything.

And that is what I miss most–the sense of two souls twined together beyond words and beyond thought or emotion. And it is what frightens me most when I think about the possibility of other relationships. I know how long it took us to reach the place that we were–how much time and how much patience and how much understanding. We worked at being us every day.

The little becomes the big

In the end, it created this enormous vulnerability we did not conceive of–that if one of us died–despite our deeply held beliefs–the loss would cripple the other in ways I only now begin to understand.

…the sense of two souls twined together…

And yet, I know I would risk that same investment to have that feeling of unity again. The little things really do add up to something far greater than two little lives in a universe of stars and open space.

Seven years: an ending and a beginning

Death, Grief, Jane

For seven years, my Saturday ritual has included a visit to Jane's grave. Today seemed different.
For seven years, my Saturday ritual has included a visit to Jane’s grave. Today seemed different.

The cemetery

I drove to the cemetery this morning. The ground was covered in a thin coat of snow and there was a touch of wind. It was cold, but I’d dressed for it. I stood at Jane’s grave. I said some things to her stone–private things and not so private things. The things one says at the grave of one seven years’ dead after seven years of mourning.

Tell them you love them in word and in deed.

I received no signs–no acknowledgment. I didn’t expect any. Her rebirth came nearly three years ago. I can see her toddler form in my mind’s eye, can see her parents, can almost hear her new voice. Her soul remembers me, but not her child-mind-body. She has new and old work before her–work that eventually will take her to new places and new loves.

The length of seven years

I miss her. I will miss her until Time’s river brings our souls together again some lifetimes from now. In the scope of time, that will be the blink off an eye. But that is not how we experience time in these mortal vessels. From that perspective, seven years is both the blink of an eye and an eternity. Today stretches on infinitely despite the efforts of my friends to distract me–despite my own efforts to distract me–from the events of seven years ago.

I received no signs–no acknowledgment.

A death watch is a hard thing. The details etch tendrils of acid into the brain more deeply than any but the brightest joys–and even those joys they somehow occlude and pervert to a degree. I can see Jane coming down the aisle toward me on our wedding day, remember with crystal clarity waking up on Christmas morning in our new home. Each Valentine’s Day morning, each Christmas morning is still there. And yet each now has a faint tinge of what we did not know was coming.

An imperfect love

In some senses, those memories are the richer for that knowledge. But they remain painful to look at–almost too painful to be fully enjoyed. When I return to the present moment, I know there will be no more new memories of the two of us together–not in this lifetime. I am starved for the simple joy of her voice coming through the door, of the simple note tacked to a door, of her feet in my lap as we watched TV or graded papers.

Today stretches on infinitely…

We argued. We disagreed with each other. Sometimes we shouted at each other. There was nothing perfect in us or in our relationship. But we loved each other–our lives wrapped up in each other. Our souls meshed at every level. We thought everyone’s did. But we also knew maintaining that mesh required an every day effort from both of us–even in anger, even in pain.

Death is easy–compared to love

Letting her die was easy compared to what followed. Her body failed her. I knew what she wanted when there was no more hope, no more value to her going on. I loved her enough to let her body go–let her soul move on. But it broke my heart in ways neither of us saw coming. Seven years later, it still hurts.

…our lives wrapped up in each other.

And yet, I keep trying to move forward one step at a time. Somehow, these two days have a sense of closure to them–the kind of closure funerals bring in our mythology of death and mourning, but rarely deliver to those closest to the one dead. I have cried a different kind of tears this weekend, tears that seem to say good-bye rather than express the pain of mourning. There is sorrow and hurt in them–yet something more, as well. I can’t explain that something more–just report its existence.

Seven years’ of lessons

The journey continues. The work continues. NET cancer still needs a cure. The world still needs the lessons we spent our lives serving–still needs ambassadors for unconditional love, for the use of evidence and logic and compassion, for all the things we tried to be flawed exemplars of. Death does not stop us or end our work–just shifts it to other venues.

Seven years later, it still hurts.

Tonight, give your loved ones an extra hug, an extra kiss. Tell them you love them in word and in deed. Give an extra thought to those who live on the fringes–to the homeless, the hungry, and the bereft. And remember the sick and the dying and those who care for them. Do all you can to lift the burdens of others. It is what Jane did every day of her life. It is what I try to do.

Thankful? Perhaps. Terrified? Absolutely

awareness, Caregiving, Death, Grief, Holidays, Jane

I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.

Thankful for what is

I have much to be thankful for: I have cupboards stocked with food, I have a roof over my head—a heated home with comfortable chairs and a warm bed to sleep in. I have clothes to wear at every season of the year. I have friends who would walk to the Gates of Hell with me if I asked them to.

It’s painful to lose your wings…

Most importantly, I have my health. Yes, I have the aches and pains anyone my age experiences. Yes, I’m still recovering from the summer’s surgery. And yes, I’m still grieving the loss of my wife seven years after her death. But my mind still works and I can still walk a goodly distance at a pace that would leave many a younger person gasping at the roadside.

Thankful but pained

One night, when Jane was in the hospital and unconscious but still with weeks to live, I stood alone in the waiting area outside the ICU. I was looking out the window at the city beyond. But the city did not register. The cars in the streets below did not register.  My mind was in the room with Jane.

I have much to be thankful for…

I was always in the room with Jane. If I went to dinner in the cafeteria, my mind stayed with her. If I drove home to pick up clean clothes and pay the bills, my mind stayed with her. When the nurses sent me out to take an afternoon’s walk, my mind stayed with her. Truth be told, part of my mind has never left that room.

Memories and weights

I still see the early morning view of Binney Street from her window—the cancer patients pulling up to the door of the Dana-Farber clinic and walking in. I still see Jane sleeping in her bed, still see her not sleeping when the bouts of insomnia came on, still see the madness and anger in her eyes. But I still see the smiles, still feel her hand in mine, still feel the tears and the final brush of her lips as she died.

My mind was in the room with Jane.

But that night, standing alone, looking out over the city, the enormity of what I was doing came down on me like the world settling onto Atlas’s shoulders. I had two decades of conversations to rely on—and they were too slender to do more than be crushed beneath the knowledge that I really was at the point of the spear—and thoroughly alone. I had friends and doctors behind me, but the weight was mine—the decisions were mine.

Living with decisions and consequences

On good days, I know I made the best decisions I could, given the information I had to work with. On bad days, the guilt is overwhelming. Most days fall between those two extremes. I console myself that Jane’s death—like her life—made a difference in the lives of others.

…the decisions were mine.

Seven years ago today, Jane was in a coma. I talked with her doctor. I talked with a friend who had come up to visit. Jane had come through one coma already. Part of me said,”Enough. Let her go.” But there was hope, I believed, with the right approach and a bit of luck, that Jane’s desire to be the first person to beat NET cancer might yet be realized. I let them convince me the chance was good enough.

Thankful, but…

And for 13 days, it looked like the right decision. And then, suddenly, it wasn’t. If you’ve been in my position, you know what that feels like. If you haven’t, I hope you never do.

Jane was in a coma.

This is what it is to be a caregiver and lose the person you love at the end. You can have food, shelter, clothing and friends. You can know how thankful you should be for each of those things—and you are. You can have your health and know how valuable that is, and be thankful for that, as well.

The terror of the void

But there is this void you can’t fill—that you are afraid to even try to fill. At first, you give yourself altruistic reasons not to. “I would never want to put someone else through this,” you tell yourself. “I don’t want anyone to feel they have to live up to my image of the one I’ve lost—that they’d constantly be compared to an idealized memory.”

You can know how thankful you should be…

The truth is, you’re terrified. You don’t want to go through watching someone else you love that much die again. You don’t want to hurt like this again. You don’t want the responsibility or the guilt or the pain. You come to prefer the real pain of solitude to the potential pain of that level of loss.

The end of the world

The Mulla Nasrudin, a Sufi teaching master, put it best when he said there are two ends of the world. “The lesser end of the world is when I die. The greater end of the world is when my wife dies.” Truly, the death of one’s other half truly is the end of the world. I’ve experienced nothing more painful.

But there is this void you can’t fill…

Truth be told, I’ve had momentary crushes—feelings I’ve squashed nearly as quickly as they appeared. When I have thought women have shown potential romantic interest in me, I’ve been quick to drive those interests away–or into safer channels. I’ve never been particularly quick at picking those things up, so perhaps those moments were imaginary. But I’m terrified to think any of it might be real—and both my conscious and subconscious minds have proven quick to put a stop to any potential relationship beyond friendship. Even that, sometimes, frightens them.

Of wings and hearts

It’s not that I can’t imagine falling in love again. I hear Jane’s voice in my ear constantly, reminding me that part of that final Saturday conversation before she went into the hospital was about her desire for me to find someone else if she died—to fall in love again. But my wings were singed long before I met Jane. She healed them, made them strong again. But her death charred them back to cinders.

Even that, sometimes, frightens them.

It’s painful to lose your wings that way. It hurts like Hell to have half your heart carved out of you without benefit of anesthesia. That’s what grief is like when the love is strong enough. But I can’t live with half a heart—don’t want to live without my wings. Still, I remain terrified of what happens if they fully recover. And equally terrified of what happens if they don’t.

Birthday takes me back seven years

awareness, Death, Grief, Jane, NET Cancer Awareness Day/Month, Uncategorized

Today would have been Jane's 63rd birthday. Seven years ago, she was recovering from heart surgery.
Today would have been Jane’s 63rd birthday. Seven years ago, she was recovering from heart surgery.

Jane’s birthday present

“I got a new heart for my birthday.” Jane said that cheerfully seven years ago today. She had gotten out of bed, briefly, for a short walk down the hall. She’d begun doing other pieces of physical therapy. We were preparing to move her to the step-down unit as soon as they had a bed for her. They’d taken off the monitors as part of that preparation. It was truly a happy birthday for both of us.

…especially on her birthday.

Then the shift changed and the new nurse started doing her review of Jane’s condition. Jane’s blood-oxygen level had dropped into the upper 80s. Jane went back on oxygen, but the numbers refused to budge. Then they fell into the low 80s. They took Jane to another building for a scan in the wee hours of the next morning. I never got back to my hotel room that night.

Birthday night drama

None of us realized until weeks later this may have been the first of the carcinoid crises that would eventually kill her. We thought the problem came from a lung that hadn’t fully re-inflated after the surgery. Jane would spend many hours strapped into a CPAP mask over the next couple of days. She hated the mask. She was claustrophobic to begin with. Life in that mask was a hateful struggle.

I got a new heart for my birthday.

This was not the first complication in the replacement of the valves in the right side of Jane’s heart. Two days before a 4-6 hour operation had turned into 10 hours. First, they’d had difficulty placing the central line because Jane was so dehydrated her veins just didn’t take well to the needles. Then, in mid-operation, they’d discovered the damage to her heart was much more extensive than anyone had imagined. The surgeon had to build a new seat for one of the valves.

Two days before Jane’s birthday

I’d sat in the heart surgery waiting area as doctor after doctor came in to speak to other patients’ loved ones. At one point, I went for a walk down Tremont Street to Mission Hill Church. Senator Ted Kennedy had made a similar trek every day when his son was in the hospital fighting his cancer. Kennedy’s own funeral was held there years later–and Jane and I had watched it on television.

Life in that mask was a hateful struggle.

In college, I’d lived in that neighborhood. I’d watched the sun rise from a small park next two the church on many mornings. That afternoon, I sat in that same space for a time. Then I went inside and sat in a pew at the back of the church. Someone walked the Stations of the Cross as I sat there. I’m not Catholic–not even traditionally Christian. But the arches and the stained glass and the silence eased me marginally.

Into darkness

I walked back to the hospital, hoping for some news. There was none to speak of–just that the surgery continued. The people at the desk were supportive. They’d seen this all before–knew and understood my anxiety. Slowly, the room emptied out until I was the only person besides the person on the desk still there. At 8 p.m., they closed that area. I went to the lobby outside the ICU and let the nurses know I was there. Periodically, they gave me what bits of news they had.

In college, I’d lived in that neighborhood.

I tried to watch some television. It was just noise. Most of the time I stood at the window, looking out over the area I had once called home–and pacing back and forth, trying to burn off the nervous energy. I did that a lot in the weeks that followed when I couldn’t be with Jane for one reason or another.

Home by Christmas

Eventually, they told me Jane was in a recovery room and would be upstairs in a couple of hours. I called her father and sister to let them know, then settled in to wait for the surgeon. The surgeon came up about 11:30. He told me about the damage to her heart, the problems with her dehydration. But the surgery had gone well, despite that. He expected her recovery would go as planned–slow, but ultimately, she’d be home by Christmas.

I walked back to the hospital…

They let me see her about an hour later. They try to prepare you for what you will see. People sometimes pass out when they see someone like that. The paleness alone is difficult. There are lines and wires everywhere and you can’t touch the person you most love in all the world despite knowing how much you need to hug them–to let them know you are physically there and not just a disembodied voice in their dreams.

Back to the present

Wednesday, I had meetings with people at Dana-Farber, Jane’s oncologist, Jen Chan, among them. I had a meeting with people from the Jimmy Fund Walk in the morning. Then I went into Kenmore Square for lunch. I walked back to DFCI afterward for my meeting with the 3-in-3 committee. I was early, so I walked out to Mission Hill Church. They were in the middle of a service, so I didn’t go in.

…she’d be home by Christmas.

I walked back, going down the long main corridor at Brigham and Women’s Hospital, as I had during every day of Jane’s time there. It dawned on me only then I was retracing my steps on that day seven years before. My conscious mind was focused on meetings and the work in front of me. My subconscious was busy reliving the events that started me on this path.

Birthday memories

After the afternoon meeting, I walked back to the heart clinic building. I took the elevator to the sixth floor ICU. I stood, once again, in front of those windows. I looked out at the lights on Mission Hill. And I remembered the young man who once lived there. I remembered the older man waiting for news about his wife. I saw the face of the person I’ve become–and saw the work that remains for me to do.

…I walked out to Mission Hill Church.

Jane could have died that day seven years ago. She could have died from that first crisis the night of her birthday. I could have let her die when the second crisis took her down the following Monday. Sometimes, I think I should have. Sometimes, I think she would have liked any of those options better. The thought still haunts my sleep.

Contemplating different paths

I would be different today. I might be doing other things. Perhaps I would sleep better. Perhaps not. The events that followed shaped more than my life, though. They helped shape the lives of others as well–doctors, nurses, caregivers, patients. New knowledge emerged from those events–new alliances, new friendships, new ideas, new focuses, new procedures, as well.

The thought still haunts my sleep.

Jane’s death and the manner of it made a difference in the lives of others, just as her life had. But I miss her–and the loss still hurts–especially on her birthday.

 

 

 

 

 

I hate one day in every month

awareness, Caregiving, Goals, Grief, Jane, NET Cancer Awareness Day/Month

I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.
I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.

Days that hurt

I hate the tenth day of the month–any month. But I especially hate November 10 and December 10. I hate the fact November 10 is Worldwide NET Cancer Awareness Day. I don’t want to, but it falls on the tenth of the month and that day has a double sacredness to me in November.

…I love the possibility NET Cancer Day helps create.

Today is the monthly anniversary of Jane’ death. It also marks the seventh anniversary of the last even remotely normal day of my life. Worse, this year, it stands one month away from the seven-year anniversary of Jane’s death for a man whose life runs in sevens, not decades.

The last sane day

Seven years ago today, Jane and I went to bed early. The next morning, we faced the difficult rush-hour drive into Boston to Dana-Farber. We’d see Jen Chan, Jane’s oncologist, get another round of blood tests, wait for the monthly Sandostatin shot to thaw out, get that injection done, see a dietician. It was supposed to be a routine day. It wasn’t.

…that day has a double sacredness to me…

There was trouble with the blood draw because they couldn’t find a vein that would work. Jen was concerned about the build-up of fluids in the abdomen. The meeting with the dietician went well, but then we discovered Jane was leaking a clear fluid from the injection site. When we got home, for the first time, I had to carry Jane up the stairs. That had never happened before.

The beginning of the end

The next morning, Jane’s heart surgeon called. He wanted to move the surgery to replace the valves in the right side of her heart to Monday. They’d been damaged by the cancer. We’d planned to do that surgery after the holidays. Now…

It was supposed to be a routine day.

Saturday, we had that long conversation everyone needs to have. We did it once a year in January. This was an extra one–a more difficult one–the real one no one really wants to have. But we both stayed optimistic. This was a precaution–not a good-bye.

Sudden decline

Sunday, I had to help her off the toilet. That had never happened before. We arrived at Brigham and Women’s Hospital that afternoon. She didn’t have it in her to walk to admitting. I pushed her wheelchair to the desk on her floor and to her room. I can’t describe how that felt–how it feels, even now. She had always refused a wheelchair before.

But we both stayed optimistic.

Monday, they took her into surgery about noon. Part of me wishes she’d died on the table. She could have. The heart was more damaged than they expected. The brilliance of her surgeon saved her. But six hours of surgery became 11. I got to see her after midnight–unconscious and with tubes and wires flowing everywhere.

Aftermath

I loved her and I fought for her. And then I let her die. I planned the funeral she refused to believe she’d need. I buried her and settled her affairs. I stayed strong for her family and our students. Two months later, I started to cry. I haven’t really stopped since.

Sunday, I had to help her off the toilet.

But everyone else had moved on. They thought I had, too. No one saw the tears. No one saw me walk into the grocery store and start shaking. No one saw me walk out the door. I worked as I always had–though not as efficiently. I wandered the house aimlessly. I didn’t sleep. But slowly, I learned to cope, if not to heal.

Seven years in solitary

I understand solitary confinement. Every widow and widower does. You go from constant human contact to almost none in an instant. You join support groups, have coffee and meals with friends and children. But at the end of the day, you come home to an empty house filled with silence and memory. For all that you fill your life with other people and other things, a part of you no longer exists.

No one saw the tears.

Something has changed in you and you can never go back. You can only live with it and keep moving forward. So you change grocery stores, go to different restaurants. You paint rooms and redecorate. Sometimes, you move. You find work that has meaning for you. You cope–but sometimes–even years later–you just cry for no better reason than it hurts too much not to.

A day of hate–a day of love

November 10 marks the last sane day of my life. It marks, too, the last day I could–if even for a minute–pretend  NET cancer wouldn’t prove the end of our life together. I wish NET Cancer Day fell on any other day of the year–and I’m glad that it doesn’t. In a very real sense, for me, it falls on the perfect day–a day of remembrance that lets me fight back.

…a part of you no longer exists.

I hate that other people face what Jane faced. I hate that we don’t have a cure. And I hate the idea that too many other spouses face the same solitary life I live if nothing changes. But I love the possibility NET Cancer Day helps create. It helps me deal with the second worst day in my year.

 

Chemistry between patient and doctor matters

awareness, Caregiving, Jane, NET Cancer Awareness Day/Month

Jane taught chemistry, physics and biology at the end off her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.
Jane taught chemistry, physics and biology at the end of her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.

Matters of taste

My friend John and I had very different taste in doctors. Two years before I met my dermatologist, John had an appointment with him. After the appointment, John called him a cold fish with no personality. He knew his stuff, he said, but there was no chemistry between them.

It took Jane three tries…

My primary care doctor sent me to see the same dermatologist for a spot on my face. I went to that appointment with an open mind–knowing John and I were different people. The doctor and I hit it off immediately. We’d both been serious runners in our youth and still ran recreationally. Our appointments always end with us catching up a little.

Individual judgements

Jane went into the hospital for a blood clot that may have been related to her cancer the same day we learned about her NET cancer. An oncologist met with us while she was there. When he left, Jane’s reaction was, “Not him.” The man was as knowledgeable about NET as most oncologists were at the time–which is to say he didn’t know very much beyond what he’d read. But Jane found his tone offensive and his manner abrasive. I’ve since known other patients who liked him just fine.

The doctor and I hit it off immediately.

A week later, we met with another oncologist from the same office. She, too, had very little knowledge of NET cancer beyond what she’d read. But she and Jane hit it off well. She referred us to Dana-Farber for a consult that turned into Jane being treated there. But if that hadn’t happened, Jane really liked that second local doctor a great deal. The chemistry worked.

Powerful chemistry

Matt Kulke, the head of the NET cancer program at DFCI, was out of the country at the time. We went to see Jen Chan instead. I watched two long-lost sisters meeting for the first time when Jen walked through the door. That encounter was a confluence of chemistry, biology, and physics in a single second.

The chemistry worked.

I’ve heard wonderful things about Matt as a doctor and a person from his patients over the years. I’ve worked with him on committees, gone on walks with him, had dinner with him. I’d take him as my doctor in a heartbeat–as I would Jen. But given the instantaneous chemistry between them, for Jane, Jen was the better choice.

Why the relationship matters

Especially with a disease like NET cancer, having a knowledgeable doctor is not really enough. The personal relationship matters. Patients need a doctor they are comfortable talking with about diarrhea episodes and other uncomfortably intimate matters. Sometimes, the only way a doctor can know what is really going on with a patient comes out of those kinds of conversations. It informs treatment just as much as knowledge of the treatments does.

…a confluence of chemistry, biology, and physics in a single second.

But the chemistry that exists between any particular doctor and any particular patient does not provide an indicator  of the chemistry between that doctor and any other patient. Nor does it help describe the chemistry between that patient and some other doctor. Each case is different. The doctor I like, you may hate; and the doctor I can’t stand, you may love.

Each relationship is different

I’ve met a significant number of NET cancer specialists over the last seven years. Some, I’ve immediately hit it off with. Others, not so much. But they’ve all had two things in common. First, they all were really knowledgeable about NET cancer, though all have more expertise in some forms of the disease than they do in others.  Second, they all have patients who love and respect them who say they have the best doctor they could ask for.

The personal relationship matters.

And they do. Knowledge matters. So does being comfortable with your doctor. But just because a particular doctor is right for you, doesn’t mean that doctor is perfect for everyone. And just because you don’t get along well with a particular doctor, doesn’t mean they are wrong for everyone else.

Are you comfortable?

It took me four tries to find the right cardiologist for me. I like him so much, I made him my primary care doctor, as well. Those other doctors were just as knowledgeable, but I never felt quite comfortable talking to them. I have friends who like them fine. It took Jane three tries to find the perfect oncologist for her. The others were fine doctors, just not the right people for Jane.

…they have the best doctor they could ask for.

Like the elements in the Periodic Table, we are all different–and we all react to each other in very different ways. We all need to keep that in mind while we search for the right doctor for us–as well as after we’ve found them.

2010: NET cancer’s watershed moment

awareness, Jane, NET Cancer Awareness Day/Month

Standing on the watershed

Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and past president of NANETS, calls 2010 a watershed year in the treatment of NET cancer. He cites FDA approval of the first new drugs to treat pancreatic NETs in more than a decade and a handful of papers on the basic science.

…2010 was an improvement over what had gone before…

It was a watershed for my wife and me in a very different way: we learned in August that she had NET cancer. We learned her primary care physician had never heard of it before. We also learned her first oncologist had never seen a case of it before. We met Jennifer Chan, who would become my wife’s NET cancer specialist and become a good friend to both of us.

Our shared watershed

Jane decreed she would become the first person to beat advanced NET cancer. She told her doctors to learn all they could from her. She brought a science teacher’s mind and observational powers to the NET cancer research table. And on December 10, 2010, 23 days after her 56th birthday, she would beat her advanced NET cancer the only way anyone ever had–by dying and taking it with her.

It was a watershed for my wife and me…

She also left a series of images indelibly printed on my mind: Jane sitting in the bathroom injecting herself in the belly twice–and then three times–a day with octreotide; Jane struggling up the stairs at night after a long day on the road and a long day at Dana-Farber; Jane unconscious in a hospital bed; Jane letting a final breath escape her lips–a breath I caught on my own.

My personal watershed

That night, I went home to an empty house and an empty bed. The dread quality of the silence I cannot describe–only that I knew instantly I needed to find a way for others never to hear that particular silence. Had I not already made promises to Jane, made promises to her doctors, that silence would have put me on my current course all by itself.

Jane sitting in the bathroom injecting herself…

I knew Jane had died because of ignorance. Her local doctors did not know NET cancer existed–and so had no way to test for it. We had no reliable imaging system that could see the tumors, no fully reliable blood or urine tests. Her doctors at Dana-Farber–NET cancer doctors everywhere–did not know enough about how the disease worked to have a cure–or even a treatment that worked for the majority of patients to alleviate symptoms.

Sources of ignorance

I knew that ignorance stemmed from two sources. I knew the disease was considered rare–and largely ignored except as a curiosity in medical schools and in-service training. There was little awareness of NET cancer in the general medical community–and even less awareness among the general public. It was thought so rare that in 1968 the US Congress had removed all funding for research into it and no one at the federal level had given it another thought until 40 years later.

I knew Jane had died because of ignorance.

That lack of awareness meant 40 years of virtually no research into the disease because of lack of money. People don’t donate money to diseases they’ve never heard of. Governments don’t dedicate money to diseases no one cares about beyond a relative handful of patients and their families. Neither does the cancer research establishment. No money means no research. No research means no treatments. No treatments means people die at the end of long periods of largely silent suffering.

Spend nothing, get nothing

We spent less than $2 million on Jane’s treatment and hospitalization in the last four months of her life. We spent even less on basic research that year. We spent less than a rounding error of a rounding error on what we spent on breast cancer on NET cancer research that year.

…40 years of virtually no research into the disease…

In 2010, we diagnosed about 10,000 cases of NET cancer in the US. About 105,000 were living with diagnosed disease. In the US, we had octreotide and it’s longer lasting form, Sandostatin for use in most forms of NET cancer. We had sunitinib and everolimus for pancreatic NETs.

Staring into darkness

None of those drugs offered a cure for the disease, just a hope for eased symptoms and slower tumor growth. If you were wealthy, or could otherwise scrape together sufficient money, you could fly to Europe for a radiation treatment called PRRT. It wasn’t a cure, either, but it could buy you some time and a better quality of life. If the drugs didn’t work for you, you could hope it would make a difference.

In 2010, we diagnosed about 10,000 cases…

For those who had been fighting NET cancer for a long time, 2010 was an improvement over what had gone before–but it was still a very dark time. For those of us just beginning to deal with the disease, darkness did not begin to describe what we were looking at.

Every personal watershed moment carries a personal cost. Jane's death changed the direction of my life. Some people say it changed theirs as well.
Every personal watershed moment carries a personal cost. Jane’s death changed the direction of my life. Some people say it changed theirs as well.