Category Archives: Grief

Failure and success: Walking with Jane in 2011

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

Planning against failure

Goals, as I used to tell my students, are meaningless without a plan for how to accomplish them. On the flight back from Seattle on New Year’s Day in 2011, I looked at the two general goals I’d arrived at for my personal NET cancer campaign and crafted what I thought was a workable plan to make those things happen. From my perspective, failure was not an option. I’d seen too much of how NET cancer killed to think otherwise.

…I was not feeling very successful.

Unfortunately, no plan, no matter how well crafted, survives first contact with reality. Things that seemed self-evident to me did not share space in many minds outside my own. There were huge bureaucracies involved, as intractable in their beliefs as a fundamentalist religion.

Unexpected sources of failure

Worse, I underestimated the impact of the other things in my life on the time and energy I would have for this new endeavor. I knew I had teaching commitments through the end of June–with all the reading and writing and grading that entailed. I had adjusted the pace of my actions to account for that–or so I thought.

…failure was not an option.

But what I had failed to consider was the strength of my own grief and how that would have an impact on every aspect of my life. People who have never experienced profound grief have no idea how pernicious an emptiness that creates. At first, you feel nothing at all. It’s eerie to see people around you in tears, charged with grief, while all you feel is guilt because you feel nothing at all despite having lost everything that had any meaning for you.

Failure to understand

Six to eight weeks later, after everyone else has moved on with their lives–and think you have, too–the pain descends like a fire curtain across a stage. You wander aimlessly from room to room, burst into tears when you enter the grocery store, wake up and stare at the ceiling for an hour trying to will yourself out of bed. Sometimes, you read the same sentence over and over again, but can’t decipher what any of it means. It is all a jumble of senseless words. You sleep only when exhaustion claims you–and then only until the first painful dream arrives.

At first, you feel nothing at all.

You go to grief groups, seek counseling, take part in programs designed to help you recover. You discover everyone’s grief is different–as are their methods of handling that grief. Slowly you come to understand that grief never really dies–never really goes away–you just get better at coping with it–at putting on a brave face for the world that believes you do, eventually, “Get over it.”

Accepting failure in times of grief

I was not the teacher I wanted to be the last year of my career. The first half of that year was devoured by Jane’s illness; the second by my grief. I know I graded papers and prepared lessons. I know I delivered the lectures and led the discussions. But I remember very little of any of it. There are emotional moments–like the morning I came back to work–that I will never forget. But the day-to-day work that was once my joy vanished in the fog of grief.

…the pain descends like a fire curtain…

Even the discussions that led to Walking with Jane are pretty foggy. I know I determined I’d walk for all of the Relay for Life–and that people decided I needed to be saved from myself lest I kill myself in the process. I remember the day Bonnie and Morgan and I watched the Walking with Jane logo roll out of the printer in its final form for the first time, but I have no memory of how the shirt the logo went on got designed.

External failure

I know I started lobbying the American Cancer Society about the lack of resources for NET cancer on its website that spring. I know that, as I write this, more than six years later, nothing has changed on that front. We now have more NET cancer patients in the US than brain cancer or ovarian cancer patients, but you’d never know that to look at the ACS website. And you’d never know it from the amount of money ACS spends on researching the disease.

I was not the teacher I wanted to be…

My plan was to get copies of Is it IBS? Or Is it NET cancer? into doctors offices across the Southcoast of Massachusetts that year. We got them to many in Greater Fall River, but they rarely went further than the hands of the doctor we put them in. No one reported copies finding their way into waiting rooms. They have become a staple in every mailing we do looking for sponsors and donors, but it’s not enough. I have a lead for funding a larger medical mailing campaign. I just need the time to put it together.

Failure on line

In June of 2011, we made our first foray into social media with a Facebook page. That September, we launched this webpage with the help of Carissa Broadbent and Mike Goeppner. They did the heavy lifting–I did the writing. The page initially had an online support group for patients that crashed and burned pretty quickly. It attracted lots of spam, but no patients–no audience. Today, there are several such private groups on Facebook that we’ll talk about in detail later in the month.

…you’d never know that to look at the ACS website.

For the first few months, I made daily posts to the website. We attracted few patients in those days. Part of it was I wrote too much about grief and the end of Jane’s life–and not enough about NET cancer. Part of the reason was there was still so little to write about the disease. But part of it was my grief dominated everything. The experience was frustrating. Pieces on NET I expected to do well, vanished into the ‘net without a trace. Pieces on Jane’s death generated audience some days and not others. Pieces on my grief suffered a similar fate.

Learning from failure

I knew the internet would matter in raising awareness. I knew social media would be a significant part of that effort. But I came into that part of the campaign with no real understanding at all of how any of it worked. I understood the theory well enough–but the differences between theory and reality were–and are–huge. I’ve gradually come to the conclusion that anyone who claims to be an expert on social media and how to use it is trying to sell you a course or a book. Six years in, large parts of it remain a mystery to me.

…I made daily posts to the website.

Print media should be less of a mystery to someone who taught journalism for parts of four decades with occasional stints as a reporter and editor. But getting the mainstream media to pay attention to NET cancer has proven an equally daunting task. In the fall of 2011, we recruited a group of my former students, many of whom were working journalists, to put together a package of stories for the local, regional and national media for NET cancer Awareness Day. Those stories are still a part of our press kit, but only appeared in four publications, despite our best efforts.

Success from failure

We’ve had better luck in recent years getting stories into the local press in the Greater Fall River and New Bedford areas. But those stories have only come about when attached to some other event–like my annual 26.2 mile hike from Hopkinton to Boston as part of the Boston Marathon Jimmy Fund Walk. That’s true of most coverage of NET cancer. The few stories we see are in local media and rarely make it to the national stage even briefly, let alone have an impact on the national consciousness.

I knew the internet would matter…

That September, I’d raised about $4,500 for NET cancer research at the Dana-Farber Cancer Institute through the Jimmy Fund Walk. I’d expected the $300 minimum would prove a stretch, but I first saw the potential power of social media the night I posted my plans to do the Walk. Within two hours, I’d raised almost $1200. More would follow from that and a small direct-mail campaign based on our Christmas card list. I was stunned. Between that and what we had raised at two Relays, we’d raised just over $7000 for cancer research and patient support. And we’d had no idea what we were doing.

Rising from the ashes

Based on that, I approached Dana-Farber about starting a NET cancer fund in Jane’s memory, pledging to raise $20,000 a year for five years. In its best year, The Walking with Jane Fund created just over $88,000 for NET cancer research, though the average is closer to $60,000. That $100,000 pledge  at the end of 2011 meant the Program in Neuroendocrine and Carcinoid Tumors–as it was called at the time–could add Jennifer Chan to its full-time roster.

Within two hours, I’d raised almost $1200.

As the first anniversary of Jane’s death approached though, I was not feeling very successful. Yes, we’d set down some kind of foundation to build on, but too many things had crashed and burned that I thought should have been easy to accomplish. ACS was proving intractable. The website was struggling to find an audience. The Facebook page was struggling to find an audience. And despite the belief that a year of grief resolved everything, I felt even more miserably alone than when I’d started.

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.
I hobbled across the finish line at my first Jimmy Fund Marathon Walk. Failure was not an option that day. I’d vowed to finish the course if I had to crawl most of it. It was a nearer-run thing than anyone at the time knew.

Remember the day where the pain resides

awareness, Caregiving, Death, Grief, Jane

I remember to forget forgetting

I lost track of the date over the weekend. It happens when you really don’t have a good reason to remember. But I don’t really need a calendar to find the tenth of any month. All I have to do is look at my behavior and how I’m feeling. My subconscious knows the monthly anniversary of Jane’s death even when my conscious mind doesn’t.

…the sounds of an empty house when half its soul is gone.

It really starts the night before. I avoid going to bed. When I get there, I don’t sleep. I know what Ebenezer Scrooge dreamed that night, but my ghosts visit me the tenth of every month. They are relentless. Someone asked me last month to write a piece about dealing with the failures and regrets after you lose your spouse. I want to answer that question as a last part of my series on being a caregiver. But I don’t have an answer.

Remember to forgive

Jane forgave me before she died. I know that because she said it. But I have yet to figure out how to forgive myself. Intellectually, I know I did all I could have done. I made the best decisions I could, given what we knew at the time. But emotional forgiveness is a very different story.

I avoid going to bed.

And I also know that even if I find a way to get my emotional side to accept and forgive, I will never be entirely whole. I wrestle with that part of the loss as well–and never more than on the ninth and tenth of the month.

I remember confusion

The good news is that I cope pretty well the rest of the month. I cook, I clean, I buy groceries and pay the bills. I go out to listen to music or see a play. I laugh. At times, I can even pretend for a few hours that everything is normal.

…I did all I could have done.

Last night, I buried myself in a book for six hours. I went to bed about 3 a.m. I woke up late, not knowing what day it was. I went to the kitchen and made six separate trips to the refrigerator to gather the ingredients for breakfast, interspersed with doing dishes, opening the drapes, and moving randomly from room-to-room to no earthly purpose. I dropped things. I couldn’t get my mind to focus and soon was berating myself for being stupid.

I remember why

Then it came to me: today marks 73 months since Jane’s death. It is the day my mind does not function, the day my body doesn’t work, the day I will say hurtful and destructive things to people without a second thought–and not know I’ve done it if they don’t call me on it. I am always a sick human being, but never more so than on the tenth of the month.  I should–and usually do–withdraw from the world that day.

I couldn’t get my mind to focus…

And so I did today. My only human interaction was with the folks at the flower shop where I bought the monthly bouquet for Jane’s grave. The cemetery was empty when I got there–and stayed that way. I put the flowers in the cemetery vase, then stood in the snow and the wind and talked to my dead wife for 20 minutes.

Cold memory

The clouds scudded across the sky. There is a storm coming in tonight that will melt all the snow. But I always find her grave a cold place. It felt that way before she died, as well. I can dress that stone any way I like, but the flowers do little to blunt the pain.

The cemetery was empty…

I count my other losses while I am there. My mother-in-law, dead of pulmonary fibrosis, is buried there with her husband, whose body simply shut down over the course of a weekend. My mother, who died of Alzheimer’s, and my father, who died of a stroke, have no grave. Their ashes are scattered together in my sister’s garden in Seattle, feeding a tree that plays host to hummingbirds throughout the year.

Remember the others

I think of all the NET cancer patients we have lost since Jane’s death, knowing that barring a major breakthrough, we will lose more in the years ahead. I wonder if I have done all I can to change that future, knowing even if I have, it is not nearly enough. And I think of all the people I have lost to other forms of cancer and other diseases–lives cut short by things I could not cure or prevent.

The clouds scudded across the sky.

Today, I got a note from a man who lost his wife to NET cancer on Christmas Eve. She died in his arms, as Jane died in mine. I gave him what little comfort I could, knowing there is nothing I can do or say that will make any of what he faces feel any better. You think there is nothing worse than that feeling of absolute helplessness when you hold someone in your arms knowing there is nothing you can do beyond what you are doing–and that it does not seem like enough.

The days that hurt

But it’s not the day they die that really grinds on your soul. Nor is it the day you bury them. You have things to do those days–and people to hold your hand. It’s all the days that come after–all the days you wake up alone, live alone, and go to bed alone. If you’re lucky, as I have been, you find meaningful work to do. If you are really lucky, as I have not been, someone comes into your life to share that burden with. But you never forget–and it never really stops hurting.

She died in his arms…

You learn to cope. You learn to show the face to the world it wants to see. And you talk with the others who have made–and are making–the same journey. You share a secret those who have not lost never really come to understand. And you move forward, as best you can, through a world that has no idea–and no vocabulary that will let them understand until they experience it themselves. And it is, if you have a heart, something you would never wish on anyone.

Remember the now

The rain has begun. The droplets run down the window across from me. I can hear the clock ticking over my shoulder, the rumble of the furnace in the basement and the sound of my own breathing when my fingers pause on the keys. My stomach grumbles.

You learn to cope.

These are the sounds of an empty house when half its soul is gone. It has been the background noise of my life for 73 months. It is why I fight so hard to end the things that have cost me so much–and why I keep fighting six years after I lost everything that mattered.

I remember Jane's love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.
I remember Jane’s love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.

Nurture heart, nurture patients, nurture science

awareness, Goals, Grief

A bit of ivy

We lost one houseplant when Jane was in the hospital. It was an ivy plant Jane had trained to a topiary mold in the shape of a heart. She started it our first year of marriage. Its death marked her death and the shattering of my own heart.

Our job is to nurture…

I had another bit of ivy in another pot. It was a single strand, perhaps two inches tall. I scooped it from that pot and placed it at the base of the heart form. It grew with painful slowness, becoming for me a symbol of the state of my own heart.

A bit of heart

When it filled half the form, I wrote a piece about it. That was almost two years ago. This summer, it finished its first circuit. It’s really taken off since then. Today, it sits on its perch, fully formed and healthy.

It grew with painful slowness…

I wish I could say I were as fully healed. I wish I could say the end of NET cancer stands clear on the horizon. I wish I could say we had the funds we need to make that moment happen. I can’t say those things.

A bit of healing

I feel both better and worse. I am no longer numb. I can feel again. Unfortunately, much of what I feel is the real grief the numbness kept from overwhelming me. I sense now the deep and truly serious damage my soul absorbed when Jane died. For five years, I felt virtually nothing. Now, at last, the pain is real. But with the pain also comes a strange new sense that I may survive what has happened. I sometimes feel joy again, albeit never for long. My laughter feels real again. And so do the tears.

I wish I could say I were as fully healed.

I look at that plant every day. Its growth moved so slowly for so long that some days I wondered why I bothered. Nothing seemed to change, with it or with me. And then it reached critical mass and began to grow and fill at a rapid pace.

Critical mass

It is not what it was before Jane went into the hospital. My own heart has not fully healed either. Neither will ever be what they once were. But they will grow so long as I can nurture them.

… I may survive what has happened.

NET cancer research has not come as far as I would like these last six years. Nor has the funding for that research. But we know much more than we did–have better funding than we did. I don’t know–any more than I knew for the topiary–what the tipping point will be. I know only that it is there–know only that once we cross it NET cancer may unravel very quickly.

Nurturing the future

Our job is to nurture the science, nurture the patients, nurture the caregivers, nurture the researchers, until we have the knowledge we need to put NET cancer on the same shelf with small pox and polio.

…we know much more than we did…

The day will come. May it come soon.

The topiary heart I began after Jane's death has filled its form and continues to fill in. The nurture of it has helped me nurture--and monitor--the state of my own heart.
The topiary heart I began after Jane’s death has filled its form and continues to fill in. The nurture of it has helped me nurture–and monitor–the state of my own heart.

Day to reflect on more than death

awareness, Caregiving, Death, Grief

A lost day

The moment of Jane’s death six years ago stands barely an hour from now as I write this. I’ve had a miserable day, as I should have expected. I had hoped to make cookies this afternoon and do the prep work for decorating the tree tomorrow. But the afternoon dissolved into mindlessness. I should have seen this coming.

…how we can make a greater difference…

I went to a play last night–a romantic comedy I hoped would lighten my soul. It was funny if the laughter from the rest of the audience was any indication. I fought back tears, throughout. It was a play about growing old together–from wedding day to the end when only one partner remains.

Roads to recovery

Six years is a long time to mourn in the eyes of the modern world. We move so quickly from relationship to relationship, from problem to problem, from job to job. We seem committed to everything and nothing and no one. Sometimes, I think people thought Walking with Jane would prove a passing fancy–a means to heal the grief and failure I felt after Jane died. In a couple of years, I would heal and move on.

…when only one partner remains.

Yet here I am. Now some people tell me my NET cancer work and Walking with Jane hold me back from healing. That may even be right. But I can’t walk away. I know too much. I know what a cure would mean. And I know it not about faceless strangers, but about people I know and have come to care about. I know what they face in their day-to-day lives because I saw Jane’s life fighting the same disease. I know how their stories end if nothing changes.

Enter Scrooge

Each year, I go to a local theater company’s re-imagining of A Christmas Carol. Each year, I watch the George C. Scott film of the same story. I am haunted at this season of the year not only by Jane’s ghost, but by all my other ghosts as well. I know my failures intimately. And I am haunted by Scrooge’s ghosts as well. They tell me not only his story, but my own.

I know what a cure would mean.

They remind me not only of my failures, but of my successes as well. Sometimes, I focus too much on what I have failed to do–the lives I’ve failed to save. Sometimes, I focus too much on the things that have happened to me that have brought sorrow rather than joy. I understand pieces of why Scrooge became the man he became because they so resemble moments in my own.

Actions matter

Ultimately, though, I am reminded that all our actions matter. We have it in each us to save or condemn Tiny Tim–and all his brothers and sisters–or at least make the attempt. Sometimes, we will succeed and Tim will throw away his crutch and grow to adulthood. But sometimes, no matter what we do, there will be an unused crutch by the fireplace–an empty place at the table.

… I am haunted by Scrooge’s ghosts…

That we may fail is not a reason to stop trying. That the problems seem too big does not let us ignore them and walk away. We can only do the best we can with the tools we have and hope what we do will prove enough. We can’t do nothing and expect things will change on their own. If we want to save a life–any life–it is on us to do what we have to do to make that happen.

Thinking about futures

For several months, I’ve debated what to do with Walking with Jane in general–and what to do with this website, specifically. I’ve written elsewhere about how others seem to fill the niches I envisioned this site and this organization filling better than I ever have. I’ve written elsewhere about the other NET cancer oriented demands on my time. I’m still debating what precisely our purpose is in the emerging NET cancer world–a world very different from the one that existed the day Jane died.

That we may fail is not an excuse to stop trying.

I do know this website will remain in one form or another–and that Walking with Jane as an organization will not go away anytime soon. But both need more thought about their future than their past. I expect the coming months will see some changes in both in terms of content, here–and goals for the parent organization. We need, 5+ years in, to re-examine who we are and where we are going–and how we can make a greater difference in the world.

Each day is a journey down an unknown path. Sometimes we can work out where it is headed. Other times, we can't. Today's path was predictable.
Each day is a journey down an unknown path. Sometimes we can work out where it is headed. Other times, we can’t. Today’s path was predictable. It was the sixth anniversary of Jane’s death.

Attitude contagious, so stay positive–Advice Part 3

awareness, Caregiving, Grief

The power of positivity

Studies have shown patients with a positive attitude do better in the longterm than patients at the same stage with a negative attitude. While the patient plays a large part in that, the task of nurturing and maintaining that attitude often falls squarely on the lay caregiver.

…the sickness and death part.

Outside of a hospital or nursing home setting, no one sees more of the patient than the spouse. If your attitude is negative, their attitude will rapidly decline. So no matter what, the caregiver has to remain positive. No matter what the news, we have to find a way to turn it into a positive–or at least keep smiling in their presence.

On the rollercoaster

This is not easy. After Jane and I first met with her Dana-Farber oncologist, we were very happy. Jane and Jen had hit it off immediately. They’d given her the first shot of Octreotide and she felt hungry on the way home. She’d been able to eat without pain for the first time in months. We had every reason to believe Jane would have a reasonable quality of life for at least a couple of years. And given the pace of medical advancement, two years might well mean something new to buy her more time.

…the caregiver has to remain positive.

A week later, we got the results of the scans of her heart. Both the valves on the right side of her heart were leaking. They were causing the swelling in her legs and abdomen. The serotonin created by the tumors in her liver had fried those valves. The prognosis destroyed all the good feelings of the previous week.

Shattered attitude

Jane was convinced those results represented “Game Over.” The cardiologist had said otherwise, but that didn’t matter. Jane’s positive attitude crumbled. My own mind was reeling. We’d gone from good chance to barely fighting chance in seven days. For the first time in many years, we had an argument about something other than the real issue we had to deal with.

This is not easy.

I ordered the wrong hamburger. I did it. I admit it. I hadn’t understood what she wanted and thought I did. My mind was as wrapped up in pain as hers. I’d spent the previous hour trying to ignore what I felt so I could buck her up. My brain seized up. Now, she wanted  divorce because I wasn’t listening.

Shared attitude repair

We came down off that ledge as we realized how scared we both felt. We both knew she still had a fighting chance, but the odds no longer felt in our favor. We both knew we could improve those odds if she could just stay positive. My job was to help her do that. That meant I had to turn down my fear so I could hear what she said and felt. She was terrified that I would desert her. She saw me angry only twice after that–and I wasn’t angry at her in either instance.

Jane’s positive attitude crumbled.

I did sometimes get frustrated and angry with her. But I made sure she never saw that. Over time, I became better and better at separating Jane from her cancer, in both my mind and my emotions. But it required a constant effort. Lack of sleep and constant worry didn’t help. Self-care, however, is a subject for another day.

Maintaining independence

Maintaining your own positive attitude–or at least the illusion of it–isn’t easy. You have to smile even when you are hurting so badly you want to scream. And it has to be a real smile that reaches your eyes.

…we realized how scared we both felt.

But that isn’t enough. Any cancer–any debilitating illness or injury–requires finding a way to let the patient maintain their independence as long as possible. Jane’s world shrank a little every day. We liked to go for walks, so we drove to a flat area and walked every day for as far as she could manage. We shared all the household chores, so I put off taking them over as much as I could. We did all the shopping together, and I kept taking her with me until she told me she just couldn’t do it anymore.

Into darkness

And every time she had to take a step back, I had to find a way to put a positive spin on it. Once they replaced the valves in her heart, I’d tell her, she’d walk again, do chores again, go shopping again. I reminded her we were partners–and that she would be doing the same for me when I got sick. In all of it was the promise that she would  be well again. In my head, I might have had doubts, but those doubts never made it to my heart–or to my face.

Jane’s world shrank a little every day.

Jane was still unconscious when they let me into see her after her heart surgery. They warned me what to expect when I saw her. But nothing can really prepare you for the dead white complexion or all the wires and tubes running in and out of the body. Yet even then, I knew I had to be positive and upbeat. A person in a coma can hear what is going on at a subconscious level. I talked to her, told her I loved her, held her hand. Then the nurse told me it was time for me to go get some sleep.

Positive unto death and beyond

I made sure I was there the next morning well before the first time her eyes opened. And I did everything I could to stay positive for her until her last breath. I walked her through three comas, talking to her and holding her hand. When she died I was telling the nurse the story of Jane’s life and the powerful, positive influence she she’d had on so many students’ lives.

A person in a coma can hear…

Even after her last breath, I tried to keep thinking and acting in a positive way. I don’t know how long after she was pronounced dead she was still aware of what was going on around her. I wanted her to know love even then.

The hand we’re dealt

The person taking care of someone with a fatal disease faces an endless rollercoaster ride of emotions. And those emotions belong not only to you, but to the patient as well. To a large extent, you end up putting your emotions on hold at times. That has dangers of its own that may require professional help when the ordeal ends. It has taken a long time for me to begin to feel anything approaching normal again. Three years passed before I could really cry again–and only now does it happen the way people would expect it should have after Jane died.

I wanted her to know love even then.

Rule #3: Do everything you can to keep the patient positive, even when it means never letting them see you sweat. Don’t count the cost until the dealing’s done. If you understand accept the marriage vows, this is the sickness and death part–and the love and cherish part.

Even now, nearly six years after Jane's death, I try to maintain a positive attitude. Jane may be gone, but there are patients who need to maintain their positive attitude as the fight NET cancer.
Even now, nearly six years after Jane’s death, I try to maintain a positive attitude. Jane may be gone, but there are patients who need to maintain their positive attitude as they fight NET cancer.

Quiet? Quiet? I wasn’t built for quiet

awareness, Grief, NET Cancer Awareness Day/Month

My day without NET

I had a quiet day yesterday. In the morning, a friend and I drove out to Cape Cod to see another friend inducted into the Hall of Fame of an organization he volunteers for. On the way out, we caught up on the little things going on in our lives. On the way back, we talked about another friend dealing with brain cancer. We are part of a group that gets him to his appointments and such.

…it didn’t matter what cancer took Jane.

After we parted, I went to a local mall to do some shopping. I felt tired, so I got a cup of coffee and sat at a quiet table and listened to the Christmas music. I watched families coming and going. Some went to visit a lonely Santa in the middle of the mall.

Time without memories

Jane and I used to walk there on cold winter mornings or hot summer days when walking outside was more than either of us wanted to do. But I didn’t think about that as I sat there. I drank my coffee and watched and listened. I wondered if this was what normal was like when you’re a widower on a quiet Saturday afternoon.

 I watched families coming and going.

After a while, I got up. I had some things I wanted to get. I bought a new charging wire for my phone so I could have one in the car and not have to remember to take the one from the house when I went out somewhere. Next, I bought a dietary supplement to help with the still-unexplained neuropathy in my feet. I went into an antique store and saw the price on a table I like had gone down another $10.

Quiet distractions

I saw a store I like has begun a going-out-of-business sale. I’m friendly with the manager and staff there. They told me they all had other jobs waiting for them with other companies after the store closes. But I will miss them. They’ve become a part of my limited social circle–and a part that lets me forget for a few minutes about Jane’s death because they never knew her.

I drank my coffee and watched and listened. 

I came home and ate and had a glass of wine. The phone rang and I spent two hours talking with an old friend in Canada. His wife seems to have fought off breast cancer. He gets a piece of what I’ve encountered: he knows the fear when you hear those words about someone you love. He lives in western Canada now, and we rarely get to talk.

A quiet awakening

He hung up to have dinner and I read for a bit. I did a little writing and checked to make sure nothing existed in my inbox I needed to deal with. Again, I thought, this must be what the world is like for a widower who has lost his wife to a “normal” disease. Yes, the house is too quiet and the rooms too empty. Maybe he walks on a Relay for Life team or does the Jimmy Fund Walk. But maybe his life is not consumed by cancer.

I came home and ate and had a glass of wine.

And then, I woke up this morning. I thought about all the people I know fighting to survive other types of cancer. I thought about a friend going in for a biopsy next month. I thought about the news I got Friday night that a former student had died of breast cancer last week. At that moment, I remembered who I am and the way I deal with things.

Grow where you’re planted

The truth: it didn’t matter what cancer took Jane. In a sense, it was better it was something rare that almost no one was doing much about. Breast cancer, pancreatic cancer, lung cancer, prostate cancer, all have legions of people working on them. NET cancer needed me–and, perhaps, I needed it.

…I remembered who I am…

Otherwise, I might be sipping coffee in a mall somewhere, watching other people go about their lives. It would be a quiet life–but not a very productive one.

Sometimes I need a quiet hour or two where I don't think about NET cancer. Working on a landscaping project, going on a trip, or sitting in a mall can sometimes create that space. And sometimes. I need that quiet more than others.
Sometimes I need a quiet hour or two where I don’t think about NET cancer. Working on a landscaping project, going on a trip, or sitting in a mall can sometimes create that space. And sometimes. I need that quiet more than others.

Caregivers have different set of problems

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

The weight of caregiving

We focus most of our energy–and rightly so–on the needs of patients. Their lives are at risk and we need to find ways to help them. We need treatments to ease their symptoms, slow the course of the disease and, ultimately, cure it. Many of us, when we hear the word caregivers, think of doctors and nurses and technicians–at least I always did until Jane got sick.

They are fighting for their lives.

But the bulk of the day-to-day care of someone with a chronic or lingering or debilitating illness falls on ordinary people. Lay caregivers get no specialized training. You simply wake up one morning and discover your entire world has changed. Suddenly, you need to learn the details of a disease you may have heard of but know nothing about. Sometimes, you draw a disease like NET cancer about which no one seems to know anything. You have to juggle a job while taking on all the chores a significant other either did or helped with–as well as your own.

The emotional and physical toll

In an instant, you become both the emotional and physical support of someone you care deeply about. Their pain becomes your pain. You bottle up your own pain and negative emotions because the last thing the person who is sick needs is to see what their illness is doing to those around them.

Lay caregivers get no specialized training.

People tell you to take care of yourself so you can keep helping the patient, but no one really tells you how to do that in a practical sense. And even when you figure out how, you feel guilty because the person you are caring for never gets a second off from their disease.  And sometimes you watch as every day the person you care for gets weaker and weaker–until you have to dress them and change their soiled underclothes and bathe them. It’s not that you mind the work, it’s how awful it is to watch someone you care for become an infant.

Personal impact

From the day of Jane’s diagnosis to the day of her death, I lost more than 20 pounds. Emotionally, I was–and still am–a mess. When I was with her, I was generally patient and gentle and kind. There were times, though, I failed. I carry the guilt of those times with me, even now, nearly six years after she died.

People tell you to take care of yourself…

When we were apart and I didn’t have to be perfect, I could fly off the handle at the slightest miscue. I was walking across the lawn one afternoon. I was buttoning up the outside of the house for the winter. My foot went into a hole. Every ounce of repressed anger came out in that instant. I couldn’t yell at Jane, couldn’t yell at her cancer–but I could pound my fist into the ground over and over again.

Outcomes

And if you get lucky, the person you love survives. They regain their strength and become someone similar to who they were before. They are not the same person–you don’t look death in the eye and return unchanged. But love abides because of what you’ve both been through. Neither of you is unchanged–and it makes you both stronger.

…I lost more than 20 pounds.

And if you are not lucky, you pick out a coffin and plan a funeral service. You choose a burial plot and a headstone. You put on a brave face and thank people for coming to the wake or the funeral service or the burial. And you cry yourself to sleep at night until you find a way to deal with the empty chair at the table that represents the void in your life.

Tears on the road to Boston

I’m still crying. The tears sneak up on me at the strangest moments. I drove to Boston late yesterday afternoon. I pulled into a rest area to check a phone call. I’ve stopped there before without incident–but suddenly I’m crying, remembering our last trip to Boston together the day before Jane’s surgery. We’d stopped there because Jane needed to go to the bathroom.

You put on a brave face…

I’ve done grief groups, had counseling, and I still get ambushed by grief like that. Nearly everyone I know has largely moved on from Jane’s death. For me, the numbness has just begun to wear off–and the real hurting has just begun. The pain is a good thing, though. It means the wound has healed enough to hurt.

The unanswered need

We have support groups for patients. We have support groups for grief. Caregivers lurk in both. Too often, they have nowhere else to turn for the solace and support they need. But a caregiver cannot really talk about what they experience in either place. We’re determined not to let patients know what we are feeling in our darker moments. They are fighting for their lives. And grief groups aren’t quite the right forum for that either. They are about the pain of loss, not the pain of having failed.

I’m still crying.

Support groups for caregivers do exist, but they are too few and too far between–and often focussed on a particular disease. NET cancer caregivers need such a group, but we are so scattered that getting together–other than online–is difficult. But we really do need such a group where we can let out hair down without inflicting our pain on the patients who are our loved ones.

On the surface, caregivers may appear serene when taking care of a loved one. that serenity comes at a price.
On the surface, caregivers may appear serene when taking care of a loved one. That serenity comes at a price.

 

Promises and forgiveness in the name of love

awareness, Death, Grief, Jane

Forgiveness in the face of life

Jane and I forgave each other for the mistakes we had made over the previous 21 years, two months and 11 days on this date six years ago. We also forgave–or tried to–each other for the mistakes we knew we would make in the next few weeks as we prepared for her heart surgery, scheduled for November 15. We knew she would be in the hospital for at least three weeks. We both expected she would be home for Christmas. But we wanted nothing left unsaid, just in case. And we made each other promises.

…I have promises of my own to keep.

I brought her body home two weeks before Christmas and put it in the ground next to her mother–fulfilling one of those promises. Hard as this is for me to say–hard as this is for some of you to hear–my life has been empty ever since.

Promises to fill the void

I’ve tried to fill that emptiness by doing good in the world. I’ve worked on cancer funding–both generally and specifically for NET cancer. I’ve worked on NET cancer awareness by creating brochures, writing articles, making videos and talking to anyone who would listen–as well as those who didn’t want to. I’ve worked to raise money for research, helped patients try to find the resources they need to live better lives, tried to console and inspire others who have lost what I have lost.

Jane and I forgave each other…

Beyond that, I’ve written about the power of love, the power of forgiveness, and the need to embrace those things in our daily lives. I’ve tried to practice those beliefs every day in everything I do. Some days I’ve been better at it than others, but the desire is always there.

Broken promises

I envy those of you who find solace in prayer and simple faith. I equally envy those of you to whom those things have no meaning. Believers and unbelievers alike have certainties I do not share–and cannot share. I have seen too much to deny the existence of some higher power–or powers. But, equally, I have seen too much to believe in their benevolence–at least toward me and those I care about.

I’ve tried to fill that emptiness…

I have seen too much of death–too much of suffering. I’ve watched a man gouge grooves in the arms of a maple chair against the pain of end-stage lung cancer; watched a woman drown for three agonizing days as pulmonary fibrosis slowly choked her to death; watched my wife suffer for decades with the NET cancer that slowly destroyed her heart and shredded her bowels before it killed her. I have seen too much other hideousness to remain on speaking terms with divinity.

The empty sound of a shattered heart

Something snapped in me while I slept last night. I’ve felt it building in me for weeks–for months–for years, really. I’ve taken, as Peter, Paul and Mary sang, my “place on the Great Mandala, as it moves through your brief moment of time.” I have made my choices and live the outcomes of those choices every day–as well as the promises.

I have seen too much of death…

But I feel empty–empty in the way this house too often feels empty–even when it is full of people. I feel abandoned–the way I abandoned–and Jane abandoned– her cooling body after her death. And I’m tired–tired of the daily effort, the daily lifting and turning, and the slow, almost invisible progress that some days seems as much illusion as reality.

Dancing our promises

I danced with Jane to the end of her life. It was a dance filled with love. And since her death, I’ve tried to keep dancing that dance, even with my partner gone and the music fading like the sound of her voice at the end. We believed in love and forgiveness–and once you’ve heard that song, you can never dance to anything else–nor stop dancing.

Something snapped in me while I slept last night.

I made Jane promises before she died: I promised her a cure for NET cancer; I promised her I would not stop living; I promised her I would never stop working for the things we believed in. Those promises were not mistakes–but they are proving really hard–and often very painful–to keep.

Promise me this

Someone said to me this week that I am a person who goes where angels fear to tread. I said, “It’s easy to do when Heaven doesn’t want you and Hell is afraid of what you’ll do next.” I said it lightly, and the other person laughed. But it is how I feel–how I’ve felt for a long time.

I danced with Jane to the end of her life.

So don’t pray for me. Instead, love one another and forgive one another, even when you feel some people don’t deserve it. They’re probably struggling, just like you are, with something you can’t see. The hurt coming from their mouths and actions is evidence of that battle–a battle they sometimes can’t see or even acknowledge.

And I, I have promises of my own to keep .

 

For me, promises can have the power of a vow, depending on when and how they are made. The promises I made to Jane at the end of her life have that power.
For me, promises can have the power of a vow, depending on when and how they are made. The promises I made to Jane at the end of her life have that power.

 

Home: a place to live and not to die

awareness, Death, Goals, Grief, NET Cancer Awareness Day/Month

What I heard

“I want to go home,” Jane said in the quiet whisper that was all the voice she had after the tracheotomy they’d done so they wouldn’t have to ventilate her again. “I want to go home.”

And then we need a cure.

I told her we couldn’t do that yet. I told her she had to be patient. I said we hoped she’d be in rehab by Christmas–and home by mid-January. I promised her we would go back to the Lake over February vacation. “I want to go home,” she repeated.

What she meant

I believed all those things were true. But she got angry with me that night. “I want to go home,” turned into the cold silence she gave me whenever I did something wrong or she was convinced she knew better than I did. I should have listened to her better.

‘I want to go home.’

Twelve hours later, she would go into the coma that would end in her death. It was only later that I figured out what she meant by, “I want to go home.” She knew she was dying–and she didn’t want to die in a hospital bed. She wanted to die in her own.

Living failure

I failed Jane that night. I failed her just as I had failed her by not getting her to go to the doctor earlier in our marriage. Had I done so, maybe we could have bought her a few more years of tennis and long walks along the beach. Maybe, now, I would hurt less than I do, even had she died.

She knew she was dying…

I don’t know that getting her to the doctor in February of 2010 when she nearly passed out in front of her students with a piece of chalk in her hand would have made any real difference. I know I tried. I know she refused to go. I know I should have tried harder–but moving Jane, once she made up her mind was nearly impossible. Three years of dating and 20 years of marriage had demonstrated that.

Home for the holidays

Sometimes I think about the consultation with her heart surgeon in mid-October. He wanted to put the surgery off until after Christmas so Jane could enjoy the holidays with her family. That would also give her oncologist more time to lower the cancer load through the use of the few tools we had then. That would improve her chances.

I failed Jane that night.

In hindsight, I should have suggested doing the surgery sooner. Maybe the damage to her heart would have been less. Maybe the carcinoid crises would not have been so severe. But how much time would that have bought her? What would the quality of that time have been? And maybe she would have died that much sooner.

Nothing to be done

Intellectually, I know nothing I could have done differently would have made any real difference. None of the doctors she might have seen would have known about NET cancer, wouldn’t have ordered the one test we had even if they’d heard of NET because, “It’s so rare, it couldn’t be that.”

I should have suggested doing the surgery sooner.

They’d have poked her and prodded her and done nothing but make her miserable. Jane didn’t like being touched. She didn’t like going to the doctor–at least not for herself. Strangely, she made certain I got my physical done and peculiar symptoms checked out. She made sure her parents did, too.

Nothing to be done

It took me three days to get her to the doctor when her arm went numb and began to swell. She went only because the biopsy report on her cancer was coming in the same day. There was a blood clot in her shoulder. Her hospital stay for that was the first night we slept apart in 15 years.

Jane didn’t like being touched.

Even today, we have nothing that really would have helped Jane by the time she was diagnosed–and certainly nothing that would have cured her.

What she did

She injected herself in the belly with a blood thinner every morning for the blood clots. She injected herself twice a day in the belly with octreotide. She waited patiently every four weeks for her Sandostatin to warm up so they could inject it into her buttocks.

…nothing that would have cured her.

None of it did much for her. She couldn’t eat more than a few bites at any meal. She had daily diarrhea. She had nightly insomnia. Her belly was full of fluid from the leaking valves in her heart. Her world was shrinking every day. She just wanted to go home.

Things to be done

The only thing that would have helped was the early diagnosis we still, today, don’t have. We need a simple, inexpensive blood test we can make as routine as the one we have for prostate cancer.

None of it did much for her.

And then we need a cure–a cure that is so effective that NET cancer dies and the patient goes home to their family to live a normal life until old age takes them.

What did home mean to us? It meant sitting on the deck at night and watching the hummingbirds; it meant walks along the boardwalk or the beach; it meant mornings in the garden and quiet afternoons reading together under the oak trees. But most of all, it meant time in each others presence--bathing in the love we had for each other.
What did home mean to us? It meant sitting on the deck at night and watching the hummingbirds; it meant walks along the boardwalk or the beach; it meant mornings in the garden and quiet afternoons reading together under the oak trees. But most of all, it meant time in each others presence–bathing in the love we had for each other.

Tears won’t always come when you need them

Death, Grief

Tears in my soul

I want to curl up in a ball and cry until I’m out of tears. This morning I woke up alone again  in an empty house. There is a hole in my life that refuses to be filled, no matter what I do.

 It informs all that you do–and all that you are.

I wish I didn’t care. I’d like to sit in my chair and pretend everything is fine. I’ve spent much of the last month on the road. I go to craft fairs and dinners and meetings. Cancer follows me everywhere.

Tears of loneliness

I went to a luncheon last week at my alma mater. I sat, as I nearly always do, with people I didn’t know. Small-talk always begins with the “What do you do?” question. My answer moves us quickly from light banter to seriousness–or ends conversation all together.

I wish I didn’t care.

No one knows what to say to a widow or widower. No one really wants to talk about cancer. No one really wants to talk about death and what it’s like to hold your wife in your arms as she takes her last breath–or what happens after that.

Tears for the dying

Unless, of course, that is what you, yourself, are facing. The person sitting next to me last week was unaccompanied. His wife has pancreatic cancer. Nearly two years ago, they told her she had six months. I gave him my phone number.

‘What do you do?’

Literally and figuratively, we all hold the hands of the dying in our lives. But no one holds the spouse’s hand; no one holds the children’s hands. It’s the loneliest thing in the world. And then the hand you’ve held is gone between one breath and the next.

Tears of the numb

Sometimes, you cry. Sometimes you are too numb for tears–and you feel guilty about that because you think you should feel something–anything. But you can’t feel the worst wounds. It’s your body’s way of protecting you. Sometimes grief is so great, your mind does the same thing.

…we all hold the hands of the dying…

I’m still numb. Nearly six years later, I’m still trying to cope with Jane’s death. It’s awkward. I lost two people this summer I hardly knew compared to Jane. We worked together on NET cancer things. I cried when they died.

The tears that won’t come

Sometimes, when I stand at Jane’s grave or look at her picture, I feel tears in the corners of my eyes. Only rarely do they come down. My soul is afraid to let them come–terrified that the full force of my grief will take me to a place I can’t return from.

I’m still numb.

Two or three times the grief has overwhelmed me and I’ve cried uncontrollably for a few minutes. Then the terror inside me clicks and reels me back in. I want to be done with this. I want it all to go away. It is the classic, uninvited, guest who never leaves.

Fearing the tears

But if it left, what then? Is the house less empty? Does the loneliness vanish as though it never was? Or does life drag on like the steppes of Russia with everything tasting like mashed potatoes?

It is the classic, uninvited, guest who never leaves.

This week, seven years ago, Jane went back to work after a month of fighting the H1N1 flu and pneumonia. This week, six years ago, we were enjoying the last few days of relative sanity before the decision to move up Jane’s heart surgery put us in separate beds and on separate paths. This week, five years ago, I was preparing to relive those days alone for the first time.

Tears for another

Yesterday, my high school alumni magazine arrived. I have few fond memories of high school–and only two of the people I knew then have in any way stayed a part of my life. I read the magazine anyway–especially the class notes. I’m intrigued by the lives of others fired on similar trajectories from a similar place.

Is the house less empty?

A woman I knew vaguely then, lost her husband to cancer recently. That notice contained the usual words people use in reporting such deaths at the beginning. But the writer went further to describe how the widow was handling things: “They made a great team. His love continues in her heart.”

Tears remind us, don’t define us

I cried then, not for him, but for her. I know, too well, what it means to lose half of who you are; what it means to have that partner’s love continue in your heart. It informs all that you do–and all that you are.

They made a great team.

Tomorrow, I have a meeting with the 3-in-3 group at Dana-Farber. This weekend, I have a craft fair in Tiverton, RI. Next week, I have a scholarship night to attend, a friend to take to the doctor, and a Jimmy Fund event. We fight cancer, one day at a time–one person at a time. It’s what I do.

Tears are not the only way we mourn our lost loved ones. I thought I was ready for the weight of creating Jane's Memorial Garden near the side of the house. Some days, I wonder if I was.
Tears are not the only way we mourn our lost loved ones. I thought I was ready for the weight of creating Jane’s Memorial Garden near the side of the house. Some days, I wonder if I was.