Category Archives: Jane

Words on a simple stone

Death, Grief, Jane

Words in a cemetery

I went to the cemetery yesterday morning. I go there every Saturday, usually in the morning. Jane and I went there most Saturday mornings when she was alive. We went to her mother’s grave. Her mother always liked to hear people talking, so we would talk there. It was always quiet.

They are words–and nothing more.

We would water the flowers we took there. We would water the flowers on other nearby graves if they looked dry, pick up the vases and pots that had fallen over in the wind. We did not stay long on any given day–and less on days when it was cold or rainy. Her mother, Jane would say, would understand.

Engraved words

Some day this week, the engraver came through. He incised the date of Jane’s father’s death on the stone and added the date of Jane’s death at the same time. It’s been nearly five years since Jane died–and I kept forgetting to have the date of her death put on the stone. Her sister suggested we do it when her father died.

We did not stay long…

I admit that I’ve avoided doing that–not so much consciously as subconsciously. Nearly five years of weekly visits, nearly five years of visits on the tenth of each month, nearly five years of visits on her birthday, on our anniversary, on Valentine’s Day–on all the small dates of remembrance that make up the memories of a marriage–and I have not yet really come to terms with her death.

Impact of words

I saw those words on her grave yesterday and I cried. Once again, I was back on the day she died, on the day we buried her, on the day she was diagnosed, in the waiting room of the hospital on the day she was operated on, in her room during the onset of each of the carcinoid attacks and comas, and holding her hand through that long last day when there was no longer any hope.

…I’ve avoided doing that…

I visited my sister-in-law afterward. She said she thought this would finally give me closure–finally let me accept Jane’s death and move on with my life. Part of me hopes she is right. I’d love to stop crying out of nowhere; I’d love to stop having days where I wander aimlessly from room to room thinking I need to do the laundry, vacuum the floors, write this letter, draft that article. Then I look up and the day is gone and nothing is done.

Speaking of words

But I also know she is wrong. I know too many people who have suffered this kind of loss. One of my neighbors lost her husband more than 15 years ago. The tears still hit her. The aimless days still come. It still hurts. Nothing cures this. There are only things that mask the symptoms for a time. There are only coping mechanisms we get better at employing over time.

…the day is gone and nothing is done.

Sometimes, Jane and I would look at the words on the other stones in our little section of the cemetery. We would note the spouses who were still alive and those who weren’t, how long they had gone on without their other half. Some were gone in a year or two. Others lived for decades. We wondered how they endured that much time. Neither of us could imagine losing the other.

The meanings of words

And then, I had not just to imagine it, but live it. I keep looking for words–and there are none. One moment, you are sitting in a room holding her limp but living hand. The next, there is a catch in her breathing and you are holding a hand that has no soul attached to it. You are alone in a way that cannot be described–only experienced. And it is an experience you would not wish on anyone.

Others lived for decades.

A wife or a husband is the family member you choose to give absolute and unconditional love to. When you are hurt, they nurture you; when they are hurt, you nurture them; and there are no questions asked in those hours of need. There is no birth connection there–only a conscious decision that you will share your lives with each other, no matter what comes.

The death of words

And then death comes for one or the other of you–and no words can console the survivor; no physical or emotional gesture changes any of that vast emptiness. It is a pain so great and so deep that often, at the moment it happens, you feel nothing at all. Only months later, when everyone else has gone back to their lives, does the real pain begin. You face that, as you faced the moment of death, alone–alone in ways that cannot be described, only experienced.

…the family member you choose…

The words on the headstone that describe the date of Jane’s death may signal closure for her sister. If they do, I am glad for her. For me, they are only another reminder–like the emptiness in the soul of this house–of all that I have lost. They are words–and nothing more.

Jane's death has cast a shadow on my life words cannot describe.
Jane’s death has cast a shadow on my life words cannot describe.

The caregiver at 58 months

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, Uncategorized

Dreaming of Jane

We are walking through the woods on a trail that is wide enough that we can walk side by side. We are holding hands. We come to a clearing and turn to each other. Our arms come up into a tight hug. Nothing could be better.

…my brain is melting.

Then I wake up. I am alone. Jane is not there. The anger and the hurt well up in me in a storm that leaves me shaking. It is 4 a.m. Part of me wishes I could just roll over and go back to sleep–recapture that dream and live there. I know better. I will just wake up again. And every waking is like the moment Jane breathed her last.

Fifty-eight months

The pattern has gone on for months now. It may be years. It may date back to Jane’s death 58 months ago. I know I have come awake in the middle of the night virtually every night since she died in the same state of hurt and rage. Only recently have I begun to remember the dreams that bring me awake.

We are walking through the woods…

In December, it will be five years since Jane’s death: five years of trying to come to terms with that and all it means. Barring accident or some global pandemic, I can reasonably expect to live another 30 years or more. My days are filled with meaningful and important work. I can lose myself and my pain in that. Sometimes, for a few hours, I can almost forget that Jane is not out with her sister or in another room.

Caregiver roll

I read a piece last night on being a caregiver for a cancer patient who is your partner. It says all the right things about diet and note-taking and general support. It gives the standard advice about making sure to take care of yourself. But doing that last piece is easier said than done.

My days are filled…

Jane spent her last 28 days in the hospital. I spent every one of those days with her. The nurses made sure I ate regularly, kicked me out for a periodic afternoon away from her bedside, made sure I showered and shaved and stayed as positive as possible. They, and Jane’s doctors, held my hand through every crisis and helped me let her go at the end.

Caregiver price

I had every form of support from them, from our friends, from her family–and from mine. Total strangers reached out to us in unimagined–and unimaginable–ways. A security guard I’d never met convinced his entire church to pray for us.

The nurses made sure I ate…

I lost 25 pounds in those 28 days. I lost my mind several times. I lost half my soul and the one thing that really mattered in my life. I’ve regained–and lost–some of the weight. But despite support groups and professional help and meaningful work, my heart, mind, and soul are still a shattered mess. I still feel like Job, sitting in the ashes of his burned out farm, surrounded by his friends and neighbors who can only wonder what Job has done to bring God’s wrath down upon him in such a terrifying way.

The living

God’s wrath is not something I concern myself with. I am more concerned with finding answers that will prevent others from going through what Jane went through in the final months of her life, that will prevent their spouses from going through what I went through as caregiver and spouse in Jane’s last months–and what I have gone through since. If my pain is the cost of that knowledge, I may whine about it periodically, but I’ll pay the price.

I still feel like Job...

I’m tired, though. The last two months have drained me. I’ve done fundraiser after fundraiser, meeting after meeting, reading after reading. I’ve walked my father-in-law to the end of his life and held his surviving daughter’s hand through both that and her own broken heel–and she still faces months of physical therapy for the latter while she deals with the aftermath of her father’s death.

Some time away

There’s still a pile of work in front of me. I need to close the books on our team’s Jimmy Fund Walk for the year; I need to plan next month’s NET Cancer Awareness activities–including organizing our annual social mediathon for November 10; I need to get ready for the Gastrointestinal Visiting Committee at Dana-Farber later this month; I have a dozen articles I need to write about the papers presented in Vienna on NET cancer last month, as well as advice for caregivers; and two other projects I can’t talk about yet.

The last two months have drained me.

But my brain is melting. I’m taking a few days off. I’ll do some yard work, go see a play or two, maybe pick some apples or just find a quiet spot on a beach or forest somewhere that I can listen to the waves or the wind in the trees. Cancer may never take a day off, but humans have to sometimes.

I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk. The idea is to end NET cancer--and the need for caregivers.
I was a caregiver. Now, I am a Walker. September 27, I set out in the dark to take on the 26.2 miles of the Boston Marathon Jimmy Fund Walk. 

The tip of the spear

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Goals, Jane, Uncategorized

Holding the spear

I have never felt more alone than I did when Jane was in a coma. I had the words we had spoken to each other and the love we shared, but it was not enough. I remember saying to myself at one point, “You are all alone out here, on the very tip of the spear, and you have to decide whatever is going to be decided.”

It is what families do.

To this day, I don’t know that I made the right decisions in those last days of Jane’s life. I know I made the best decisions I could based on the information I had at the time. I had friends and doctors and nurses to help me think things through but, in the end, I had to make the final calls.

Alone in the dark

Sunday morning at 5 a.m. I boarded the bus that would take me to the starting line of the Boston Marathon Jimmy Fund Walk. It was 42F and sunrise was not even a glimmer on the horizon. It was the first bus and it got me there in time to eat a banana and down a bottle of water before the official starting time.

I had to make the final calls.

I walked up the hill to the start point, asked a police officer to take my picture, and headed off into the dark. I was wearing shorts, knee braces, and a t-shirt pulled over a sweatshirt. I’d decided to wear gloves against the cold and against the blisters my trekking poles would otherwise induce over the 26.2 miles.

The real Marathon

Most human bodies are not really designed for distances greater than 20 miles a day. When armies literally marched into battle, the wise commander limited his men to 20 miles a day, knowing that going much further than that would leave them too tired to fight at best–and vanished into the night at worst.

I walked up the hill to the start point…

Asking a human being to run a distance greater than 20 miles is even more difficult. As a friend who was preparing for his first marathon-length run reminded me, the first guy who did it died at the end after shouting the single word, VICTORY!”

A test of will

I’ve walked 20 miles many times in the last four years. I’ve walked further than that maybe ten times–four of them on the BAA Boston Marathon course for the Jimmy Fund. Most years, I’ve trained hard for that walk. The only difference that training has made is when and where my body starts to object strenuously to what I am doing to it.

…the first guy who did it died…

Yesterday, that point came about Mile 21. The latest it has arrived for me is Mile 23. But whenever that moment arrives, the Marathon Walk ceases to be about physical conditioning; it becomes, instead, a test of will.

My one talent

People tell me I am a gifted writer, a gifted speaker, a gifted teacher. I am none of those things. I am good at each of them, yes. But the word “gifted” implies some inborn talent and that, I don’t have. My heroes had those talents–and I wanted them. But I did not have them.

I’ve walked 20 miles many times…

I became a good teacher, a good writer, a good speaker because I worked to develop those skills–and was fortunate to have good teachers and good models to help me reach my goals. My single talent, if I have one, is that I am stubborn to the point of foolishness. If I want to learn something, I work at it until I understand it. If I want to do something, nothing gets in my way. Or almost nothing.

The tip of the spear

Five years ago, Jane was dying. Neither of us wanted that–and we fought with every measure of our being to stop it from happening. We failed–and every fiber of my being hurts every second of every day as a result.

…nothing gets in my way.

So when my muscles start to scream near the end of a Marathon distance, they have to compete with an even stronger vision–an even stronger voice: I remember Jane’s pain in the last days of her life; I remember my own pain in those days; and I remember the emotional pain I deal with every day; and I know I don’t want anyone to go through what Jane went through, what I went through, what I continue to go through.

Paying the price

Beside that pain, what my body goes through is nothing. It is a part of the price of finding a cure–and a minuscule part for me compared to losing Jane.

Five years ago, Jane was dying.

So I walked through the dark until the sun came up. I walked until I met up with the part of our team that was starting at 13.1 miles. I walked until my body broke–and then I walked some more. And when I crossed the finish line at last and shouted “victory” again, most of our team and another team of zebras was there to meet me.

Forming the spear point

And this is part of what I said to them: We are not merely an alliance; we are not merely a team; we are family. From this moment, no zebra awakens from surgery alone, no one fights alone, no one dies alone, no one mourns alone, no one stands at the tip of the spear alone.

…and then I walked some more.

“Today, we are the tip of the zebra spear. That spear is aimed at the heart of NET cancer and, together, we will kill it.”

The point of the spear

And to each of you reading this, I say the same thing–and make the same pledge: From this moment, no one fights alone, no one dies alone, no one mourns alone. At one time or another, each of us will stand at the point of that spear, each of us will strive to drive it through the heart of NET cancer–and in the end, we will kill it.

…we are family.

If that means walking, we will walk. If that means being part of a trial or study, we will do it. If it means speaking or acting or simply living, we will do it. It is what families do.

Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family--and never alone again.
Yesterday was our day at the tip of the spear, one of many. But each of us has moments when we are there, individually or collectively. And through it all, never forget that we are all family–and never alone again.

Thoughts before the Walk

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, NETwalkers Alliance, Uncategorized

The walk I’m supposed to be doing

I’m supposed to be retired. I’m supposed to be sitting on my deck, looking out over my finely manicured landscape design. I’m supposed to be relaxing and traveling to exotic spots. I’m supposed to be doing all of those things with Jane by my side.

…I know I have to try.

Five years ago this fall, all of that changed. Jane was diagnosed over the summer with NET cancer. In early September, we learned it had damaged the valves in her heart. In late September, we knew we were in a race between her cancer and her heart–a race we needed to win if we were to enjoy even a few months of retirement together.

The cost of failure

By Christmas, it was over–and I was alone. Sometimes, I try to explain what that means to people who have not experienced it. People tell me I am good with words–and maybe I am. But I have not yet found anything that even begins to convey the emptiness that loss creates. My father’s words come closest: “And now you know there is nothing anyone can say to you that will make this feel any better.”

…with Jane by my side.

Someone told me last week that if we had even one child, this would be easier to bear. My father had six of us when my mother died. I don’t think it helped much, even when his eldest son was equally a widower. The relationship between spouses is different from what exists between brothers or sisters or children or parents. Our spouse is the person we choose to be our family. It is the only family relationship we make a conscious choice to have.

Why keep going?

Someone else asked me this week why I take on so much–why I can’t just let this be someone else’s problem. And I have to admit there are moments I just want to walk away from all of it. Nothing I do will bring Jane back. Nothing I do will truly avenge her death. Nothing I do will make this emptiness I feel any better.

…I was alone.

But then I think of the people who walk today because, in part, of what we learned from Jane. I think of the doctors and nurses and researchers Jane’s life–and final days–inspired. I think of the literally hundreds of people I know who are fighting the same cancer Jane had.

I walk because I know…

And I think of their children and their husbands and wives and parents. I know how it feels to look across the kitchen table and see no one there, what it’s like to wake up in the night to half the bed being empty, what it’s like to see something and have no one to share it with–and I know I would condemn no one to those things.

Nothing I do will bring Jane back.

Jane’s death set me on this path–but it is not what keeps me there. Jillian and Andrew and Amanda and Ronnie and their spouses and children do. Pamela and Kelly and Josh and Alicia and all their loved ones do. And Jen and Matt and Eric and Emily and George–and all the doctors and researchers working on this difficult cancer–do.

Choosing to ignore limitations

In the end, I know I won’t find the cure for NET cancer. I know I’m not rich enough or well-connected enough to come up with the money that will find that cure. But I also know that if I don’t do all that I can I won’t be able to live with myself.

I know how it feels…

I know how to write. I know how to speak. I know how to walk. Doing those three things, perhaps I can inspire the people who have the money; perhaps I can inspire the people who have the knowledge and the skills; perhaps that will be enough. And perhaps not. But I know I have to try.

You come, too.

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
Each year, I cry, “Victory” as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.

Reflections on death at 57 months

Death, Grief, Jane, Uncategorized

(Editor’s note: I wrote what follows on Monday morning. Hank died early that evening. Only now, on Thursday, a week after the 57-month anniversary of Jane’s death, have I had time to post it here. You can view his obituary here.)

Life—and death—intervenes

The 57-month anniversary of Jane’s death was last Thursday. I’ve had little time to reflect on that because her father’s health has taken a significant turn for the worse. As I write this, he is on his death-bed just a few feet away. It is 5:50 a.m. and Gail, his other daughter, is sleeping.

Every person’s death diminishes me…

I slept for a few hours earlier. The medicines he is on to keep him comfortable have to be given every hour, so one of us has to be awake at all times. How long this death will take, neither of us knows. But he is seemingly comfortable and, at this stage, that is all that matters.

A time to live…

Jane’s dad was sick long before we discovered Jane’s NET cancer. Kidney problems are easy to spot with the standard blood tests everyone gets with every routine physical. It was a bigger struggle to get him to accept dialysis than it was to discover that he required it.

…he is seemingly comfortable…

Dialysis is an exhausting experience, but it does clean out the toxins in the blood pretty well. While Hank’s life the last six years has not been perfect, the quality of it, until recently, has been decent. He was able to get out of the house, go to cookouts, watch football—most of the normal things people do.

A time to die

Unfortunately, Hank was done in by another medical failure. Apparently, we stop testing for prostate cancer in older men at some point. The thinking, they tell me, is that prostate cancer generally moves very slowly in the elderly. In Hank’s case, that meant the cancer had spread to his bones before it was detected.

Dialysis is an exhausting experience…

The last year has not been good. He has been in and out of the hospital, in and out of rehab, and the quality of his life has steadily declined. Last Tuesday, Gail called 911 when he had become increasingly confused and lethargic. We expected he was dehydrated—the weather was hot and humid and there is no way to pump enough liquids and electrolytes into a person in Hank’s general condition orally.

Waiting for Death

But that was not the problem. The vital organs in his body had begun to shut down. We moved him into hospice care Thursday and brought him home Friday afternoon. He was already asleep most of the time—waking up only when we changed his bed-clothes. Since late Saturday night he has not opened his eyes.

The last year has not been good.

We wet his lips, give him his comfort medications, and sit with him. We talk to him—we can’t know how much registers. But I think that while the porch light is on, there is not much of him left at home.

Memories

Jane’s death was similar at the end. She went into that final coma and slowly drifted away. The difference was she did so in a hospital room. I would have liked to have brought her home to die, but she might not have made it there had I tried—and I did not want her to die in an ambulance surrounded by strangers.

…he has not opened his eyes.

I’ve spent the last few days thinking about Jane and her parent’s house. I have stood by the fence outside where I first told her I loved her, stood in the hallway where I kissed her good night after a date, sat in the dining room where we ate Thanksgiving, Christmas, and Easter dinner—as well as a host of Sundays.

Inhaling life and death

I have stood under the grape arbor where we once sat and inhaled their late summer perfume. That scent is there this week as we wait for Hank’s death. It will close the book on so many memories in a way I can’t quite describe.

Jane’s death was similar at the end.

We forget, sometimes, that medicine is not an exact science. A test not given, a series of diverse symptoms not recognized as part of a larger pattern, a specialist’s rather than a generalist’s view of things—by such little things all our lives hang like the grapes on that arbor. We don’t know when a particular grape will be fully ripe, when a particular leaf will fall—when a specific life will end.

Nine years tomorrow

Jane’s mother died nine years ago tomorrow. I thought of the irony of that last week. That Hank should die on the same day as his wife has powerful symmetry to it, but I kept it to myself at the time. Gail raised the idea this morning and I agreed with her. I feel uncomfortable intruding on her grief.

…medicine is not an exact science.

In a few minutes, I will dip a fresh DenTip—a tiny sponge at the end of a long plastic stick—in water, cleanse Hank’s mouth and then give him his next bit of medicine. I’ll note the slight change in the sound of his breathing, and continue to wait—as I waited with Jane during her mother’s last hours, nine years ago, as I waited for Jane’s death 57 months and four days ago.

Waiting for the harvest

And when the waiting is ended, Death and I will become full adversaries again. I understand the cycle of life and death—of birth and rebirth. I know even the stars have expiration dates. But I am very much a disciple of John Donne: Every person’s death diminishes me, for I am involved with humankind.

Jane’s mother died nine years ago tomorrow.

For now, Henry is dying. I will do what I can to make him comfortable as he waits like a grape to be plucked from the vine.

Marriage doesn’t always end at death

Death, Grief, Jane, Uncategorized

Marriage: real and imagined

A “real” marriage is an insanely difficult thing to try to explain to someone who has not experienced it. I was reminded of that last week as I worked my way through one of the books in the Outlander series currently being serialized on television. Late in the fourth book, one of the characters describes the difference between a real marriage and one based on obligation. The difference isn’t pretty.

It is left to me to make them real.

But the character misses the point. She sees a real marriage as involving only a romantic kind of love. Her mother points out that real love creates obligations–and that obligations are just as important to a sound marriage as romance is. But even she does not entirely get what marriage is about–or at least she doesn’t manage to explain it very clearly. In some respects, I don’t think we can truly understand marriage until one member of the bonded pair has died.

Marriage after death

Jane and I had a good marriage. We were each other’s other half. We understood romance. We understood partnership. We understood love and the obligations to each other love creates. Then Jane got sick and we faced that the way we faced everything else in our lives–together.

The difference isn’t pretty.

And then she died and I discovered an entire piece of marriage I had not conceived of before–and that I don’t think she had either. Love does not die when one of the partners ceases to be. Rather, at least for the one who still lives, it continues. It shapes who we are and who we become. It colors our perception of every subsequent experience. And it makes us a special kind of crazy. Marriage, it turns out, may not entirely end with death.

Remembering the last anniversary

Today is our 26th anniversary–the fifth since Jane’s death in December of 2010. Intellectually, five years is a long time ago. But emotionally, it feels like mere minutes. We both knew there was a good chance that day would be the last anniversary we would truly celebrate together. Seven days later we would make our first trip to Boston to see an oncologist specializing in Jane’s unique form of cancer. We knew we were in trouble.

It shapes who we are and who we become.

But we tried to pretend for each other that day that nothing was different–that we still had years ahead of us. We both failed badly in those attempts. We went out for lunch. Jane tried to eat–and couldn’t. We tried to walk more than the distance to the car, and Jane couldn’t. Every failure hurt her. Every failure hurt us both. But we kept smiling and kept trying.

Trying for normal

We had neither of us slept well for a long time. I have not slept well for a long time. Her slow decline into death haunts my dreams. Her rasping voice in the last days of her time in the hospital haunts my waking hours. It is the only version of her voice I can still hear–and I suspect I will hear it until I die. And perhaps I will hear it even then.

Today is our 26th anniversary…

We made that last anniversary as normal as we could. We exchanged gifts and cards when we woke up. She read my anniversary poem. I fixed us our traditional anniversary breakfast of chocolate croissants and tea. We talked about our hopes and dreams for the year ahead.

The present

Jane never asked me for a particular present for our anniversary until the last one. She had seen a sterling silver bracelet on a leather band. The bracelet framed a single word: “Believe.” It was a message to us both.

I have not slept well for a long time.

It is the one piece of her jewelry I have never put away. It sits on a mirror on a bookcase in the living room, amid our own glass menagerie. It sits between Jane’s Pegasus and my dragon–the symbols we had adopted for ourselves long before we met. Behind it stand three glass unicorns, pawing the air as they prepare to gallop. To the right is a tiny glass beaker, to the left, a small royal swan. Every piece held meaning for us–every piece still has meaning for me.

Moving forward, not on

Every day, I remind myself, I yet have work to do in the world. And every day, I miss her. I miss the shared goals, the shared dreams, the shared aspirations–shared in a way they cannot be shared now. And some days, it is all just too much. I want to stay in bed and stare at the ceiling. But I can’t. And I won’t. Jane won’t let me–and neither will I.

 It was a message to us both.

That’s not to say I don’t take time to cry when I need to, take a day to sit by the ocean and watch the waves come in or climb to the top of some hill or mountain and sit and watch the sky. But Jane told me I could not stop doing the work just because she was no longer there to do it with me. We both had dreams. It is left to me to make them real.

There are few pictures of Jane and I together. That small library does not deny our marriage. It only underlines how much Jane hated having someone else take her picture.
There are few pictures of Jane and me together. That small library does not deny our marriage. It only underlines how much Jane hated having someone else take her picture.

DFCI Jimmy Fund Telethon reflections

Boston Marathon Jimmy Fund Walk, Fundraising, Jane, Uncategorized

Jimmy Fund Radio Telethon time

Listening to the WEEI/NESN Jimmy Fund Radio Telethon is something Jane and I did every year. We did what we could to support the Dana-Farber Cancer Institute through that fund regularly. We never thought either of us would need the very special services they provide cancer patients. Cancer did not, seemingly, run in our families. It was just the right thing to do.

…we still have work to do. 

Then Jane’s sister was diagnosed with Stage 0 breast cancer. It was caught so early and dealt with so quickly locally that DFCI was never seriously considered. That was true, in part, because of the research DFCI and other major cancer centers had done. Then we discovered Jane’s NET cancer and DFCI became the medical center of our universe.

The fairy tale that isn’t one

It’s one thing to hear the patient stories over the course of these two days. It is something else to live in one of those stories.  The dedication of the doctors and the courage of the patients sounds like something out of a Disney fairy tale.

Cancer did not, seemingly, run in our families.

Then you become a patient–or your spouse or your child does–and you discover just how special those doctors, nurses and support people really are. And you discover the deep reserves of courage you have and your spouse has and your children have. Human beings are amazing creatures when everything is on the line.

Doctors and nurses

I’ve walked people to the end of their lives more often than I like to think about. I’ve sat with too many people on the death watch, held too many hands in the final hours of life. I’ve met doctors who, even in those circumstances, were extraordinary. And I’ve met a few who needed serious sensitivity training.

Human beings are amazing creatures…

But I’ve never met a nurse who was not the soul of compassion at those moments. And I’ve never met a doctor at DFCI who was not just as compassionate and caring  and dedicated as the best of nurses. At DFCI, even the people behind the desk making appointments went through the compassion line three or four times more than the rest of us.

Case in point

I’ve told the story of our first visit with Jen Chan several times: how she and Jane seemed to immediately hit it off; how she immediately set up an initial octreotide injection and scheduled an appointment with an onco-cardiologist before we left the exam room.

…I’ve never met a nurse who was not the soul of compassion…

And I’ve told how she called just after we got home that night to talk about ideas she’d had about ways to proceed since we left her office. But I’ve never put it in the context of what the rest of her day must have been like. Jane was not the only patient she saw that day. She saw at least 16 other patients–not all of them NET cancer patients, since she was not working exclusively on NETs at the time.

Odds against

And Jane’s case was not a typical NET cancer case. Jane’s cancer was more advanced than nearly any doctor had ever seen. Her lifestyle had kept her alive with a liver that should long since have killed her. Only a handful of patients lived long enough to develop the heart problems she had. Her cancer was so far advanced, DFCI had turned her down for a drug trial.

…she and Jane seemed to immediately hit it off…

And Jen had two small children waiting for her at home. I can see her tucking them in for the night before picking up the phone to talk to us–two people she had just met that afternoon. Even now, I am awestruck by the person she turned out to be–the kind of person who would put the turkey in the oven and come see Jane on Thanksgiving morning when she didn’t have to.

Skin in the game

People mistake me for a hero sometimes. They think I’m being modest when I say I’m not. The truth is, when someone we love is in trouble, the adrenaline kicks in and we do what we need to do. I see it in a former student whose son was diagnosed with brain cancer and whose wife is now fighting breast cancer. I hear it in the voices of the parents on the radio talking about their child’s cancer. And I hear it in the voices and actions of the patients it is my honor to work with.

…I am awestruck…

But all of us–patients, spouses, children, and patients–have enormous emotional skin in the game from the start. We are, literally and figuratively, fighting for our lives and the lives of those we love. My life and dreams ended the day Jane died. Every day since has been about trying to find new dreams–trying to find a new life–absent her presence.

Defining unconditional love

But when Jen came through that door on that September morning, she took us into her heart the way we took our students into ours on the first day of school. It was something neither Jane nor I expected. We’d dealt with doctors for years, knew–and-to a degree understood–the reason they often stood behind a professional distance: patients die–patients with cancer more often than others.

My life and dreams ended the day Jane died.

Since Jane’s death, I’ve met a number of Jen’s colleagues at DFCI. They are all cut from the same cloth Jen is. They care about their patients the way nurses do–with hearts left open to the cold reality of death. I write about the need for unconditional love even for strangers. They practice that love every day.

Jealousy and joy

Sometimes, it’s hard listening to these stories on the radio over the course of these two days. Part of me is jealous just as part of me rejoices about the progress and cures that have evolved over the 14 years since they launched this fundraiser. The stories of the husbands and wives who speak on the air together about successful treatments and what those treatments have meant to them make me cry.

They practice that love every day.

But I know the fight is far from over. There are still too many stories that end badly–so many stories that end in a graveyard–so many cancers we have no answer to. And I know we still have work to do.

The Jimmy Fund Walk is not the only way DFCI raises money for cancer research. The last two days, WEEI and NESN have run a radio telethon for that purpose.
The Jimmy Fund Walk is not the only way DFCI raises money for cancer research. The last two days, WEEI and NESN have run a radio telethon for that purpose.

Another month alone

Death, Grief, Jane, Uncategorized

Two anniversaries

Two friends celebrated their fiftieth anniversary this weekend. Several of us went to mass with them, then spent the afternoon at a local restaurant eating and laughing together. I smiled, hugged them both, and felt some happiness for them. No one mentioned Friday was 55 months since Jane died. I don’t think anyone remembered. Nor did I expect them to. It would have soured everything.

I don’t fear death.

It’s amazing how good I have become at hiding pain when I need to. My friends were surrounded by an aura of joy and I knew I must do nothing to damage that moment. They are not young and I worry about their health. I want them to suck up and enjoy every minute of couple-hood they can get.

Pain-filled realities

I try to be good at anniversaries, birthdays and the other celebrations in people’s lives. I know too well what it is to face Christmas, Valentine’s Day, and Halloween alone. I understand too well what it is to have no one to share the hummingbird’s return with or the small joys of a freshly finished landscaping project. I know what it is to face every day alone.

It would have soured everything.

There is an underlying tragedy awaiting every pair of soul mates. Sooner or later, one half of that partnership dies. And it is painful on both sides. I remember Jane’s tears when I told her there was nothing left to do–nothing left to try. I know what every day is like for me. I begin and end every day alone and empty.

Celebrating the big and the small

Last September we would have celebrated our twenty-fifth anniversary. The day passed unremarked by anyone other than me. Last November, Jane would have turned 60. I took a card and some flowers to her grave. If anyone else remembered, they didn’t tell me.

I try to be good at anniversaries…

And I don’t expect people to remember those dates any more than I expect them to remember the anniversaries of her death. They are the kinds of things that couples take joy and sorrow in. The rest of the world has its own joys and sorrows. While both halves of a couple are still alive they need–and deserve–to enjoy the days they have, no matter how big and no matter how small.

The nature of couples

Jane and I did that. We sucked the marrow out of every bone the gods tossed our way. We shared not just a bed and a house, but a life as well. I have days I wish I had not loved her so deeply. I have days, still, where I cry myself to sleep, days where I hold the pillow she slept on to my nose, hoping to pick up even the slightest hint of her presence.

Last November, Jane would have turned 60.

My friend talked Sunday about his wife being his right arm. I understood what he was trying to say–but the truth always seems like hyperbole. His wife, like Jane to me, is more than a right arm. She is half of all he is–just as he is half of all she is.

A touch of envy

I won’t pretend I am not both bitter and envious. I very much want the things they have–the years they have enjoyed together since Jane and I celebrated their twenty-fifth anniversary with them less than a year after we were married. I desperately wanted–and needed–Jane with me there on Sunday as a warm, physical presence.

Last November, Jane would have turned 60.

Jane always said we would not reach our silver anniversary unless we counted in dog years. My response was always that we would–that we wouldn’t be that old–62 and 59. Fifty years might be a stretch, but given our genetics, even that seemed possible.

Fighting Death

Loss hurts. Death does not kill just the person we bury. It kills the couple, as well. I am not the same person I was when Jane was still alive. I am, in some ways, a colder and more bitter man. In others, I am kinder and more compassionate.

I very much want the things they have…

I have seen Death in my beloved’s eyes, been so close that I could feel the rustle of his robes, smell the pleasant stench of his presence, and hear the whisper of his scythe. I know what it is to try to stop Death–and I know what it feels like to fail.

Moving forward, alone

I don’t fear death. It is a long time since I did. But I am not anxious for it either. People talk about seeing their loved ones again and how happy they will be when that happens. The possibility holds no fascination for me. Jane and I were about making this world better. I still am. That work is not finished. It would profane all that we were if I abandoned that task.

I have seen Death in my beloved’s eyes…

So I keep trying to move forward. I get up every morning. I make the bed. I shower. I shave. I have breakfast. I do whatever work is before me every day. And I celebrate the milestones in other people’s lives, hoping the memories we create on those days will help sustain them in the days when half of who they are is no longer present.

One reason I work on NET cancer issues is that I don't want anyone else to face a life alone without their other half.
One reason I work on NET cancer issues is that I don’t want anyone else to face a life alone without their other half.

 

Relay and a vacation for the mind

Carcinoid/NET News, Fundraising, Jane, Uncategorized

What’s in a name?

I know I’m in big trouble when my idea of a vacation is spending six weeks commuting back and forth to Boston every day to teach high school students the basics of journalism in a summer program run by the New England Center for Investigative Reporting. I know I’m in bigger trouble when that course starts less than 48 hours after walking through the night and into the morning at the Greater Fall River Relay for Life.

We are not a mindless cancer cell…

But it does create a break for me. I like driving. I like teaching. I like journalism. I like having a reason to get up and put on a suit and tie every day. I like having an excuse to go out for breakfast. I like having an excuse not to think about NET cancer for a few hours, even when it makes me feel a bit guilty about it when I think about it. I am completely aware that NET cancer patients and their family caregivers don’t get that opportunity.

Never far away

But over the last five years–we are coming up next month on the fifth anniversary of Jane’s diagnosis–there have been very few days that have not been filled with thoughts of cancer and the possibility and reality of death at its hands. And even as I teach this summer, thoughts of Jane are never far away. Neither are thoughts of all the patients I know who are fighting exactly what Jane went through.

I know I’m in big trouble…

Yesterday, we dropped off the deep-friers we used as part of our on-site Relay fundraiser the end of last month. The friend we borrowed them from, who has done much more than lend us equipment, said I really need some time on a tropical island beach sipping something alcoholic from a coconut with a little umbrella in it. She’s probably right. But for now, teaching journalism is the best I can do.

Relay impact

This year’s Relay may be the most intense, in some respects, we have ever done. Our clam cake and chowder fundraiser netted $1131.50–an increase from that effort alone of nearly $500 over last year. We put out 1200 zebra-themed luminaria in two massive herds around the track, accompanied by informational signage that told the NET cancer story.

…thoughts of Jane are never far away.

Those herds and signs led to many people coming by our site to learn more about NET cancer. And there was lots of conversation on the track about NET cancer among participants as a result. It’s safe to say the local cancer community knows far more about NET cancer now than most people do elsewhere.

Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand--and a long area of track to house 1200 zebras.
Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand–and a long area of track–to house 1200 zebras.

Walking through the night

Unfortunately, we didn’t get the press coverage I had hoped for. That meant we had less impact than I would have liked. Still, it created a prototype I hope other teams elsewhere with a NET cancer focus can use in their local Relays to attract greater attention to carcinoid/NETs.

We put out 1200 zebra-themed luminaria…

There is something emotionally powerful about walking through the night, alone or with a small number of friends that is hard to explain to people who have not done so. By 2 a.m., only the serious walkers are left on the track. They are silent or speak in soft voices. The quality of both light and sound evolve through the night.

Birds in the night

The birds begin chirping about an hour-and-a-half before sunrise and somehow the night is not quite as dark when they do. It is really not darkest just before the dawn–at least not in early summer. And after a night of walking, the walls have come down and we have conversations that would not happen any other way.

There is something emotionally powerful about walking through the night…

Relay for Life teams are supposed to keep going through the night because cancer never sleeps–and, figuratively, we can never sleep either if we are going to find a cure. The long walk through the night is a symbol of our resolve to beat cancer–for ourselves and for those we love–no matter what the personal cost.

The fight goes on

But even the best of us need a break now and again. We are not a mindless cancer cell or a mindless tumor. We have minds that require sleep and recreation to function at their peak.

It is really not darkest just before the dawn…

So I will make a drive to Boston every day for six weeks to give my mind a break from cancer and a time to think on other things. Even a break is a part of the struggle.

Eventually, the Zebra Herd lined both sides of this section of the track at Relay.
Eventually, the Zebra Herd lined both sides of this section of the track at Relay.

Killing what killed Jane

Carcinoid/NET News, Goals, Jane, Uncategorized

A long-delayed meeting

We had our long-delayed Walking with Jane Board of Directors meeting yesterday. We normally meet the second Saturday in January but I had oral surgery scheduled for two days before that date this year, so we moved it later in the month. Then it started to snow. And the further we moved into the spring, the more scheduling conflicts erupted.

My focus needs to reflect that reality.

I understand now why our lawyer advised limiting the board to three people. The problem was I wanted a wide range of expertise and opinion in that group. We ended up with six trustees plus me as chairman. And yesterday, we had serious discussions about the need to expand the board to include people from outside the immediate area. For now, we have put that idea on hold. But in light of some other things we decided thereafter, it is an idea I expect we will return to very soon.

Decisions made

The formal meeting lasted over three hours and included decisions on a mini golf tournament tentatively scheduled for late August, a regular fundraising dinner schedule, a comedy night, ideas for a new public service announcement campaign, acceptance of an offer from Amazon.com to donate a percentage of some sales to Walking with Jane, and a revised corporate sponsorship program.

Then it started to snow.

I’ll write more about each of those things as we get them set up. But the lion’s share of our time–and the main subject of this post–focussed on our goals and our vision for where we want Walking with Jane to go over the next few years. The more we talked the more clear it became that we all felt we needed to refocus our energies on our original reason for starting Walking with Jane.

A brief history

If you’ve followed Walking with Jane for any length of time, you know Jane’s story and you know why, eventually, we set up Walking with Jane. In brief, when Jane was diagnosed with NET cancer in August of 2010, her doctor had never heard of it. When I went online to look for information, there was very little to be found–and much of what I did find was written in doctor-speak. Her first oncologist had heard of it, but never seen a case. She sent us to Jen Chan at the Dana-Farber Cancer Institute.

…we all felt we needed to refocus our energies…

The week after Jane died, one of her doctors called to tell me Dana-Farber was forming a program aimed specifically at carcinoid/NETs. They asked me to be a part of what they were doing–and I agreed. But I have never been one to put all my eggs in one basket–and our friends agreed with me. We wanted to do more.

Past as prelude

So we set up Walking with Jane–first as a Relay for Life team and later as a non-profit. Our goals, from the start, were three in number: first, to raise awareness about carcinoid and NET cancers among both medical professionals and the general public; second, to increase funding for research into the disease and possible cures; and, finally, to provide scholarships for students entering the medical field in the hope of creating doctors, nurses, and researchers who would help fight cancer and other diseases–and for students entering science education to carry on Jane’s work in the classroom.

…I have never been one to put all my eggs in one basket…

To date, we have paid out $16,000 in scholarships and directly raised or directly generated nearly $200,000 for research and awareness. Some of that money has helped seed ground that raised substantially more than that–or so I’ve been told. We’ve done two social media marathons on carcinoid and NET cancer, appeared twice on Doctor Radio’s cancer program, created several PSAs, and done everything we could to change the carcinoid/NETs environment.

The dark side

Frankly, from my perspective, it hasn’t been enough. We haven’t reached enough people or raised enough money–or created an environment in which other groups have been able to raise enough money or reach enough people. Our board disagreed with me somewhat on that issue yesterday. I live too closely to things to see just how far we have come as a community or how much has changed.

So we set up Walking with Jane… 

I see the ongoing ignorance of the mainstream medical community. I see the ongoing lack of funding for research–how hard every NET cancer program has to work to find the research dollars they each need to make a difference. I see our ongoing failure to reach the general public in a meaningful way.

The bright side

But there are rays of hope. Today, we spend four times as much on NET cancer research as we did in 2010 when Jane died. There are 50 papers on carcinoid/NETs at this year’s ASCO conference. We’ve had two new drugs receive FDA approval and have a significant number of potential new treatments in the pipeline, including immunotherapy. PRRT is undergoing trials in the US and is increasingly widely available within the strictures of the trial process.

…it hasn’t been enough.

I won’t pretend Walking with Jane is responsible for any of that happening. Most of it was in the pipeline long before we knew what Jane had. I won’t pretend Walking with Jane will have much responsibility for what happens in the future. We are still too small to have a very large–or even significant–voice in what happens next in research and treatment. I do know we will continue with what we started: trying to make a difference in the lives of others with carcinoid/NETs–and I hope we will get better at that with each passing day.

Eyes on the prize

To do that, though, we need to keep our eyes on our original purposes. We are not trying to provide money for research into the more common forms of cancer. There are plenty of organizations doing that job. We aren’t trying to provide transportation or lodging for people who have to travel long distances–though God knows NET cancer patients have greater need of those kinds of support services than most.

But there are rays of hope.

Right now, the only possibility of curing carcinoid/NETs is early detection followed by prompt surgery. Early detection can only happen through broader awareness in both the medical and general populations about this form of cancer. And we need to continue searching for ways to detect the disease reliably–and early.

Grim realities

But most tumors will continue to remain undetected until they have spread. For those patients, we have no cure–only a handful of palliative treatments that can prolong life and decrease suffering in some patients. We need to continue supporting research into both palliative treatments and potential cures. We need to support the basic research into the disease from which those treatments will come.

…we need to continue searching for ways to detect the disease reliably–and early.

And we need to continue to support the education of future scientists, doctors and nurses–and the educators who will help create those researchers.

I wish we could do more than that–and we will continue to work to educate patients and their doctors about not only symptoms but also potential tests and treatments–but, as Walking with Jane’s board pointed out to me yesterday, most of the time I will still have to function as an army of one when it comes to this organization. Our focus needs to reflect that reality.

While I am often alone --often function as an army of one--I know I am not really alone in my passion to end NET cancer. My job is to bring people together so that, truly, no one fights alone. I have the luxury of time that few others have--and that means much of the organizing and writing that go into Walking with Jane falls on my shoulders.
While I am often alone –often function as an army of one–I know I am not really alone in my passion to end NET cancer. My job is to bring people together so that, truly, no one fights alone. I have the luxury of time that few others have–and that means much of the organizing and writing that go into Walking with Jane falls on my shoulders.