Seven years marks the formal period for mourning the death of a spouse. I know my grief will not end when that time has elapsed. But it will free a part of my soul.
The mystery of seven
I don’t measure time in decades. I measure it in sevens–in combinations of threes and fours. In number symbolism, three is the archetypal number of the eternal female, four the archetypal number of the eternal male. Their simplest combination yields seven, the archetypal number of creation. My world fills itself with three and fours, but most especially, sevens.
I can’t say when I heard the body replaces every cell in it over a seven-year period. I know the idea made sense to me–and in a symbolic sense, still does. The truth is more complicated than that–as it is with most things. Some cells live a few days. Others can live a decade or more. But symbols are powerful things. They can rule our hearts even when science speaks otherwise.
Memories and dates
I’m living the seventh year since Jane’s death. In a few days, I’ll face her seventh birthday since her death. She would have been 63. Next week marks my seventh Thanksgiving without her. In less than a month, the seventh anniversary of her last coma–and her death–will haunt my thoughts and feelings.
The cells of my lips that caught her final kiss vanished years ago–as have the cells in my lungs that held that final breath. But I can still feel that final brush, that final breath. I can’t hear her voice, but those tactile moments remain. I can see her walking down the aisle on our wedding day, feel her hand in mine. But equally burned in my memory are that last birthday, that final Thanksgiving, and that hopeless Friday morning and evening of the day she died.
Time of formal grief
The ancients set the formal period of mourning for a spouse at seven years. That hour draws close and I am anxious for it to arrive. I wait anxiously for the time to end, anxious for some small taste of an end to the emotional turmoil of these seven years.
And I am fearful. Grief has defined so much of me the last seven years. What defines me when the formal time of grief ends? Who–or what–have I become inside this chrysalis? A butterfly? A moth? Something else? Or are the seven years of mourning another illusion, like the Year of Firsts? I’m not sure how I deal with that.
Breaking the chrysalis
I know the end of seven years will free a part of my soul–a part of my mind. I know this because I have felt that freedom building inside me all year-long. The waves of grief come less often, the torrents hit less often and with less force–though this weekend was difficult in ways I have not experienced in a while. In September, the last renewal of our vows–an every seven-year event–expired.
But I am not sure this is a freedom I want. It means seeking a new definition of who I am–a definition that includes Jane’s death and the grief that followed and all I’ve learned in that journey–but goes beyond that. What present can I build? What future? Can I still create the visions I hold in my mind?
Dreaming dreams
Like Ulysses before his last voyage, I am not what I once was–or who I once was. My body has grown old–too old, perhaps–to carry forward the things that I conceive. I want an end to NET cancer. But I also want a world where life has meaning and possibility beyond a cure for one disease.
Jane and I dreamed dreams of things we knew we would not see except, perhaps, from a mountaintop across an ocean to a far-distant shore. Those dreams evolved from love–and we knew they could yet be. But no dream comes true from the dreaming and so we set our shoulders to the boulders in the path before us. Many told us we were crazy–that we gave too much and that we expected too much.
Moving boulders
Jane did not quit. Even in her dying she tried to teach–me as well as her students–and every person she encountered. She died a death that changed the lives of doctors, nurses, nurses aids, and technicians. She changed the lives of patients who never met her and never heard her name. Even I was changed by the way she lived her death.
My Penelope is gone. But love remains. Ideals and dreams and goals remain. And the work of those myriad connected dreams remains unfinished. They may die with me, but I will keep shifting those boulders aside, nonetheless. And, perhaps, when I am gone, some other souls will take up the stones Jane and I leave behind unfinished. Perhaps not. But the boulders we moved will be moved.
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.
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.
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.
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.
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. It was the sixth anniversary of Jane’s death.
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.
I was sitting just to the left of Jane’s hospital bed six years ago today. She’d arrived in the cardiac ICU just about midnight and they’d let me in to see her, briefly, about 1 a.m. I’d talked to her doctor about the surgery. He’d seemed pleased, despite the complications they’d encountered, with how things went. There’d been no sense of crisis.
…she kept paying it forward.
They’d warned me what I would see when I entered the room for the first time. Sometimes the pasty complexion and all the tubes and wires cause people to faint when they first encounter it. I spent half an hour there, just holding her hand and whispering sweet nothings. Then they sent me back to my hotel.
Jane wakes up
I slept a few hours but arrived at her bedside a little before eight the next morning. The nurse stood behind his panel of dials and meters, monitoring every vital sign, every drug going in and every fluid going out. I liked him. There was a calm about him I wanted to emulate. I saw that same calm in all her nurses over the next few weeks, even when things collapsed into chaos and crisis. That happened four times before death claimed her.
They’d warned me what I would see…
Now, I held her hand and talked to her. The nurse told me she was unlikely to wake up before noon, but her eyes flickered open within an hour of my arrival. They didn’t stay open long, maybe five minutes, and she dozed off again. But within an hour she was fully awake and alert.
We had a plan
She couldn’t talk with the tube going down her throat to aid her breathing. She couldn’t write with all the tubes and wires she was wrapped in. But we could hold hands and I could tell her what the surgeon had told me. It very much looked like she’d be in the step-down unit by Thursday night–as planned–and I’d be back home and out of the nurses’ and doctors’ way as she began to rehab her heart.
There was a calm about him…
It didn’t happen that way, but we had 30 hours that certainly looked like clear sailing into a difficult but workable future. Yes, her liver was a mess. Yes, her intestines were likely lined with tumors. But we had a plan–and the first part of that plan was going well. Tomorrow, we’d celebrate her birthday as best we could when she couldn’t eat, confident there would be more in the future when she could.
When right turns wrong
By the following day, everything was ready for the move upstairs except locating a bed for her on that ward. No problem: we started taking out the lines and doing the physical therapy as though the move had already happened. And Jane was a more than enthusiastic participant. She kept doing the simple exercises long after the PT people left. They’d told her she could–that it would speed up the process. And Jane wanted to be home by Christmas.
…we had a plan…
And then it all went sideways. At the shift change the new nurse ran the checks every new nurse makes when taking over a patient’s care. They’d taken off the pulse-oxygen monitor in preparing to move Jane to the step-down unit. The exam showed Jane’s blood oxygen levels crashing. They put her back on oxygen but the levels stayed lower than was good. They ran tests, did scans–but could not figure out what was going on.
Carcinoid crisis
I spent that night sitting with her in her room in the ICU. I didn’t sleep–and neither did she. She was in the midst of her first carcinoid crisis, though we didn’t realize it at the time. It was minor, compared to the ones that came later. Those would put her in a coma–and the last one would kill her.
…Jane wanted to be home by Christmas.
Jane never got to the step-down unit. I didn’t sleep at home again until December 10, several hours after her death. I curled up in a fetal ball in my corner of the bed and cried myself to sleep. Then I put on a brave face and went to work planning her funeral.
What we learned
We learned a lot from Jane’s struggles over those four weeks. Doctors rewrote the protocols for heart surgery aftercare on patients with carcinoid syndrome from what Jane went through. People are alive today who might not be because of that. I’m glad about that–a small brightness in an otherwise dark firmament.
Jane never got to the step-down unit.
Jane wanted good things to come from her fight with NET cancer. She wanted her doctors to learn all that they could from her. And she wanted future patients to benefit from her battle with the demon. Even dying, she kept paying it forward.
Walking with Jane was born out of my personal crisis after Jane’s death. She always wanted to keep paying things forward. I still do.
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.
“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.
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.
The daylight hours of Saturday went pretty well. I set up a table at a local craft fair and, while sales were not particularly good, I talked to lots of people about NET cancer who had never heard of it before.
Someday, perhaps, I will love again…
Where I come from we call that a minister’s delight. It means you can use an old sermon and no one knows but you. A new audience reacts differently and the talk feels new even to the speaker.
Better hours
I also read Matt Kulke et al’s –and that certainly boosted my spirits. We still have a lot to learn about this new drug that stands before the FDA for approval between now and spring. But it clearly will improve life for many patients.
…we call that a minister’s delight.
It’s not a cure, but, at first reading, it seems to have cut the number of daily bowel movements in half for many patients. It also cut 5-HIAA levels significantly. I’m planning to write a more detailed piece on the study later–I want to review it more closely–but it brightened the day considerably.
Dark hours
I came home, finally took the Halloween decorations down, and made myself a light dinner. I ate at the small kitchen table. A week’s worth of mail buries the dining room table–and I only eat there when I have company anyway.
It’s not a cure…
Then the sun set and the loneliness settled in as it does most Saturday nights. Jane and I didn’t usually do anything special on Saturday night. We’d sit in the living room and read or watch what we’d taped over the week. She’d put her feet in my lap and I’d rub the soreness out of them.
Consequential hours
I miss that. It seems inconsequential when I look at it logically–but it is somehow the most painful reminder of what is gone. I’m alone on Saturday night in ways I simply am not the rest of the week–even when no one is here.
…I’d rub the soreness out of them.
I would not wish these nights on Satan himself–even as bad as the Bible makes him appear. Even Judas deserves better. But every widow and widower lives in this bit of Hell.
Loving hours
People ask me, periodically, how I do what I do. I shake my head because I don’t feel I do enough. I haven’t figured out how to keep people out of this Hell I live in. To me, that means I’ve failed: failed to keep others healthy and alive, failed to keep someone from losing the one they love.
Even Judas deserves better.
Love defines my life. The search for love shaped who I became and how I became who I became. To live without that defining love–the love Jane and I shared every day–tears at me every second.
Loving hours
I envy those of you who have that love in your lives. I will not take it from you. Instead, I will do all I can to keep your love alive in the way mine cannot be. That means finding answers to this disease–and all the others.
Love defines my life.
Someday, perhaps, I will love again as I loved Jane. That does not feel likely on a Saturday night in November. The expression, “Once burned, twice shy,” comes to mind. Love requires leaving yourself open to a repeat of this kind of pain. But I would not give up what we had even to avoid this searing emptiness.
The hours of our lives can cast shadows on even the most beautiful of memories. Lost love does that, especially.
