People tell me my wife was beautiful. I certainly thought so. But the beauty of her mind and soul dwarfed her physical beauty. NET cancer could not touch those.
The Tenth of November
I never look forward to World NET Cancer Awareness Day. It reminds me of too many things. It is the day of the month on which Jane died, though she died in December and not November. But the tenth of every month tends to be difficult.
We need to kill NET cancer.
Still, November 10 is worse than all but December 10. It was the night before what would prove our last trip to Dana-Farber together–the last night that had any sanity in it at all. Not that there had been much sanity in our lives for more than a year.
The price of ignorance
The H1N1 virus had hit Jane particularly hard in October the year before. She’d missed a month of work between it and the pneumonia that followed. In truth, she never fully recovered from that.
…the last night that had any sanity…
I wonder how many years that flu cost us. Sometimes I think it opened the door that let the NET cancer she’d unknowingly been fighting for 30 years gain the upper hand. Other times, I think the NET likely weakened her enough to let the H1N1 really kneecap her. Probably both statements are true. Both things killed her, though the cancer was always going to be the root cause.
The face of NET
She was in tough shape on November 10. We both knew things were coming to a head. The thrice-daily octreotide injections were doing little to thwart the diarrhea, the bloating, or the swelling that had started in her legs that spring and had spread to her abdomen. She’d stopped trying to go up and down the stairs to the cellar. She’d stopped helping with the cleaning, though she did still manage to cook dinner much of the time.
…she never fully recovered…
She was a better cook than I was, so I cleaned up most nights. When I cooked, she cleaned. Now, it didn’t matter who cooked, I did the dishes. We’d always shared the yard work and the housework. She didn’t like that those tasks now all fell on me. She told me she felt guilty. I told her she’d do the same for me if I were the one fighting cancer.
Talk in the face of NET
We talked that night. She listed the things we needed to make sure we asked the next day. I added a couple of things. My official job was to make sure we came away with answers to everything, as wells taking the notes. My bigger job was staying supportive and positive no matter what we heard.
She told me she felt guilty.
We talked, too, that night about other things. We always did. We talked about our days, what we’d read, what our students were doing. The long drive to and from Boston sat on the table in front of us. It stayed quiet, as did the cancer once we’d finished with it. We both knew they were there.
Miracles needed
I can’t say what she felt that night. I know I was terrified. She’d lost too much weight, too much strength. She was dying and there was nothing I could do but hold her hand, massage her feet, and hope the long-odds approaches both we and her doctors had in mind would work. I put on a confident face. She did the same.
We both knew they were there.
We didn’t need a miracle–we needed several. It turned out we needed miracles we didn’t even know we needed–that the doctors didn’t even know we needed. It was November 2010–and what we knew about NET cancer with certainty could be reduced to a 3×5 index card. And some of that was wrong.
Long day’s journey into NET
The next day, the traffic was awful. But we came away hopeful. We met with a dietician who gave us some thoughts on things Jane might eat that would help. Jane’s doctor wanted to set up a procedure for the following week to draw out some of the fluid from Jane’s abdomen that would alleviate some discomfort and help get a handle on what was going on.
She was dying…
But when we got home–after three hours in traffic–I had to carry Jane up the stairs. It was the first time that happened. We chalked it up to each other as the end result of a long day and too much time sitting in traffic.
NET consequences
The next day, Jane’s heart surgeon called. A month before we’d talked about surgery “after the holidays.” Now, after seeing the results from the day before and talking with Jane’s other doctors, he wanted to do it Monday or Thursday. We went with Monday. That meant driving to the hospital late Sunday afternoon
I had to carry Jane up the stairs.
I’m not sure Jane would have made it until Thursday now. Given the month that followed, I’m not sure she would not have been better off. She would have died at home in her own bed on her own terms. But we both wanted her to live–to have a fighting chance–to reach the goal she’d set the day she was diagnosed.
What it was worth
She had the surgery. Her heart was worse than they expected. With a lesser surgeon, she would have died on the table. The doctors learned a lot in the days that followed. The people around us learned a lot in those 25 days. I learned a lot in those 25 days.
…to have a fighting chance…
But it cost her more than I can say. And I have never been the same. The tenth of the month has come around 107 times since I caught her last breath on my lips.
The deepest wounds
I did not cry that night. I was too numb–too numb for a long time. And I have work to do. But the tenth of every month breaks open every wound and leaves me with tears and memories–memories of the end.
…it cost her more than I can say.
We need to kill NET cancer. It tears apart the soul of the patient who has it–tears apart the souls of those they love.
Jane died 37 months ago tonight. I knew it was coming. I knew there was nothing I could do to stop it from happening. I held her hand, read to her unconscious form, did all that love can do. And then she was gone. Her breathing stopped. Her heart stopped. Her life stopped.
…none are as hard as the day you watch the one you love die…
The doctor came in, listened to her heart, nodded and confirmed what we all already knew. I made the calls I had to make in the shock and numbness that makes a person look so much braver and stronger than he is. A friend drove me home to the silence of this house where we had laughed and argued and cried and loved. I threw myself on the bed. Eventually, I slept. I woke up in the dark and the silence and the emptiness and knew just how alone I was.
We know nothing–until we do
I knew all the theories about grief. I had seen others grieve. I thought I understood. I understood nothing. I knew nothing. There are no time limits on grief. You don’t wake up one day and discover you are “over it.” You get better at coping, but the hurt never really goes away.
…all but a handful will die of the disease unless something changes.
You can bury yourself in work. You can go out with friends and family. You can laugh. You can drink. You can talk to counselors and take the drugs they offer. But at the end of the day, you come home alone, you go to bed alone, you wake up alone. Even in a crowded room at a party there comes a point that you look around and realize you are alone.
Imagine grief mirrored 37,000 times
I had that moment again on Christmas Day. I was at my brother’s house in Seattle. We were all sitting at the table. People were talking and laughing–and suddenly it was just too much. I got up quietly and went to another room. I sat next to the Christmas tree and stared mindlessly into space for a few minutes. My family has seen it before. They know, I think, that I am feeling something difficult in those few minutes. They leave me alone long enough to gather myself.
I try to imagine that and it staggers me.
Over 37,000 people have died of carcinoid and NET cancer since the night Jane died. Each one of them had someone who loved them–spouses, parents, children, grandparents, grandchildren. Each of them had a precious mind and a precious soul that is now missing from the world. My grief has been mirrored at least 37,000 times in 37 months. I try to imagine that and it staggers me.
‘Why do you care?’
There are 120,000 diagnosed patients living with NET cancer in the US–and all but a handful will die of the disease unless something changes. That’s 120,000 more grieving spouses and primary caregivers.
There are no time limits on grief.
Someone said to me recently, “Why do you care about what other people feel? Just deal with your own grief and get over it.” Someone else said, “We all have to die of something. If she hadn’t died of this, it would have been something else. You can’t stop death, so why try? She’s gone. Move on.”
Living the reality of grief
I might have thought that way once. I envy them their ignorance and their ability to maintain their logical fantasy. It sounds nice until you have to live it. Once you live it, you do not want others to experience any part of it. No one who has actually experienced combat wants anyone else to experience any part of it. No one who has actually experienced grief wants anyone else to experience any part of it, either.
Her life stopped.
So I keep working; I keep trying to make a difference. Some days are easier than others. Some days are harder than others.  But none are as hard as the day you watch the one you love die, knowing there is nothing you can do–nothing anyone can do–to stop it.
Tonight marks the 37th month of my journey through grief–and my efforts to save others from its premature experience.
OK folks, here’s the skinny on Walking with Jane and the Marathon Walk September 21, 2014. We will have a team again this year to raise money for the Walking with Jane Dybowski Fund for Neuroendocrine and Carcinoid Tumors at DFCI. There has been some talk of us combining forces with both Caring for Carcinoid and one or two other groups and I am thinking about a change in the team name to Carcinoid Walking United–or something along those lines–if that happens.
If you have ideas for fundraisers…
DFCI expects the site to launch for the
2014 walk the first week in February. I have some paperwork I have to do between now and the end of the month to earmark the money we raise for the Jane Dybowski Fund and the primary researchers–Jen Chan and Matt Kulke–whose work the money supports. I’m holding off on that while I wait to hear from the other teams.
Time to start thinking and training
As far as I know, the distances and starting points will be the same as last year. If you want to walk in with me from Hopkinton, you may want to start training soon. I know I will start as soon as I kick this bug I have been fighting since I got back from Seattle.
We will have a team again this year to raise money…
If you have ideas for fundraisers you want to set up, let me know and I will do my best to be there to help out. If you have thoughts on goals for this year–whether in terms of number of walkers or total raised, let me know. My plan is to set up the team page the day the site goes live.
Runs and walks between now and then
Between now and then, I also plan to do a number of other walks as training exercises. These will include the Fairhaven, MA MS Walk (three miles) in early April, The Walk for Hunger in Boston (20 miles), and the Tripp Scholarship 5K run or walk, in May, the Fall River Relay for Life in June, the Run, Walk or Crawl 5K in July or August, as well as some other players to be named later. If you’d like to join us for any of those, we’d be glad to see you. I will set up team pages for the MS Walk and the Walk for Hunger shortly if people are interested in being a team for either of those events.
Ripple and spread
It’s time to start talking to people who told us they wanted to walk last year but couldn’t. Help this ripple and spread by sharing it far and wide.
I am in the process of closing the books on the 2013 Marathon Walk season. I sent off the last check this morning.
I want to thank each of you for your individual efforts this year.
First, the good news. When the dust finally settles we will have three Pacesetters on our team. I made the list for the third straight year–and my second at
Four Stars. Elizabeth MacNeil is a Two Star Pacesetter for the second year in a row. And Beth Manchester-Howell will squeak onto the One Star list in her first year.
Walk standings positive
It looks like I will personally finish in the top 25.
Top 25 next year, anyone?
As a team, it looks like we will finish around 61st overall–which is not bad at all considering we only had eight of us on the team–and only five of us actually were able to make it onto the course for the event. Beth and I walked in from Hopkinton, Elizabeth and Justin started at the 13.1 mile mark, and Ron Hollander walked in from Brookline at least twice.
Walk totals
Our team total of $21,869–with the check I mailed this morning–is up about $3,192 from last year.
We will do better next year.
That we did not reach our goals–either in terms of members or money–largely had to do with circumstances beyond the control of any of us. Between the economy, deaths, and serious illnesses–not to mention my ongoing emotional state (who knew year three would prove nearly as difficult as year two?)–we had a deck that was badly stacked against us. We will do better next year.
The Walk ahead
Indeed, we have already recruited 2-3 new people for next year who have already started raising money. And I have had conversations with a number of other people who say they will be joining us next year.
…we will finish around 61st overall…
Top 25 next year, anyone?
A word of thanks
But most of all, I want to thank each of you for your individual efforts this year. Every one of you made a positive difference in the fight against NET cancer. We have not won the war, but we have begun to win some battles. From my perspective, things look considerably better than they did on that cold December night in 2010.
PS–Fundraising officially ends October 31, so there is still time to collect–or make–donations.
The NET Cancer Walker is working on a social media-thon for November 10. You can help make it real–and it won’t cost you a dime–just some time. Contact us at walkingwithjane@gmail.com for details. Walk on.
I have spent the last ten days running from the reality of today.
…none of us would have to pray for miracle cures.
Thirty-four months ago today I was sitting next to my unconscious wife. I was holding her hand, reading to her, talking to her, and trying to bring us both to terms with the reality she had but hours left to live. I cannot say whether she came to terms with it. She died just before 8 p.m. without regaining consciousness.
The reality of loss
I do know I am still trying to come to terms with it.
…they have done their bit for cancer for the year.
It was a quiet death. There was a last hitch in her breathing, a last exhalation as I held her one last time and kissed her softly on the lips–and it was over. But the months-long struggle that led to that moment had been neither quiet nor easy. The reality of death is never as quiet or as pretty as it is made out to be in books.
The reality of NET cancer
NET cancer is a particularly nasty and drawn out way to die. So are most forms of cancer, truth be told. I’ve seen too many cancer deaths–seen too many deaths, period.
…my heart aches more today than it did a month ago.
But Jane’s was the hardest for me. If you have not lost a spouse to death I have no words capable of explaining it to you. And if you have, you do not need me to explain it. You know what it is. The closest I can come is to say it is watching yourself die and then having to go on living without half your soul. But that misses the reality by so many miles that it is not even in the same galaxy.
The reality of dreams
Some days I want to walk away from everything: I want to sell this house and everything in it; I want to leave this city and this region; I want to turn my back on this foundation, on NET cancer, on cancer–on all of it. I want to find a quiet spot on the side of a mountain somewhere and spend my days crying and my nights howling like a soulless creature until consciousness flees and I can forget this hollow darkness I live in.
Some days I want to walk away from everything…
That is a dream–and a tempting one. Reality makes demands that erase that dream. Jane’s battle with NET cancer and the things I have done since her death are helping to make a difference in the lives of others. There are more resources to work with than we had when she was diagnosed; we know more about the disease; we have new ideas about how to treat people who have it–how to make their lives longer and more comfortable, even if we do not yet have an inkling of an actual cure.
The reality of pink
But my heart aches more today than it did a month ago. The hoopla of Breast Cancer Awareness Month with its tsunamis of pink and its attitude that there is just one kind of cancer and that if we could just get every woman in the world to check her breasts regularly we’d have cancer eliminated by the end of the month wears thin very quickly when you know every part of that is a lie–and even more quickly when you have lost someone to some other form of cancer.
NET cancer is a particularly nasty and drawn out way to die.
It makes me angry. And it makes me inconsolably sad. Especially this year as I watch a friend of my youth wrestle with metastatic triple-E negative breast cancer. Five percent of the money the NFL raises this month through its pink-washing deal will go to breast cancer research. In fact, only a tiny fraction of all the money raised this month will find its way to that research.
The reality of NET cancer
But everyone will go home happy believing they have done their bit for cancer for the year.
…I am still trying to come to terms with it.
November 10, the 35 month anniversary of Jane’s death, is NET Cancer Awareness Day. It’s a Sunday. But not one NFL team will wear zebra patterned shoes or helmets that day. Outside the NET cancer community, few will notice it even took place. Some races and walks will happen. I’ll try to do my social mediathon thing. We’ll raise, worldwide, that day less money than 10 good size Relays for Life. For the entire year, we’ll raise less than what amounts to a rounding error of what the breast cancer charities will raise this month.
Reality sucks
The difference is nearly every nickel we raise will go to NET cancer research.
I have spent the last ten days running from the reality of today.
I wish every cancer group could say the same. Maybe then none of us would have to pray for miracle cures.
Some days, reality sucks.
Our dream is a cure for NET cancer–and an end to the disease. Our reality is an ongoing struggle.
I looked at myself in the mirror the other day—I mean really looked—not like I do when I shave or brush my teeth. I did not recognize the person staring back at me in the glass. Jane’s death 25 months ago from NET cancer has changed me as much physically as mentally and emotionally.
…there is no price nor barter for the brush of a vanished soul.
I don’t know what caused me to look. Maybe it was a passing glance that turned to fascination. But had I seen me in the street I would not have known me. Even the eyes have changed. There is sternness there instead of the twinkle I had grown used to over our 21 years three months and eight days of marriage. And my smile has died.
The price of Jane’s NET cancer
I should not be surprised. Our lives were two intertwined vines, locked together from root to crown. No gardener could have pulled out one without damaging the other. When the NET cancer ripped her away, half my roots and stems and branches went with her—and the bits of her that remain tangled in me have hardened to such stiffness that removing them would kill what is left of me.
And now, there is nothing.
Over time I will grow around those parts of her that remain in me—encase them within the bark of my being. But for now, they are all sharp and brittle. They scrape against me and wear down the edges of me, leaving dark scars and avenues for invasion of the soft tissue beneath.
NET cancer’s survivor
Eventually, perhaps, those sores will callous over. I am in no position to know. My vegetable existence is caught up in the moment. I explore the pain of it like a tongue caressing the place in the mouth the teeth have just errantly bit. The taste of it is salty and bitter and tinged with the regret of a self-inflicted wound.
Eventually, perhaps, those sores will callous over.
I’ve been reading a book—From We to Me. At one point the authors talk about something they call “skin hunger.” We are addicted to our lover’s touch—and when it vanishes we become so starved for it that the hunger leaves us open to a thousand poor relationship choices.
The first hunger
I know precisely what they are talking about. There was not a day we did not touch in those 21 years. At the end we held hands at every opportunity—and would have held each other more closely if we could have. Before they sealed her casket, I stood alone in the chapel and kissed her forehead, nose, and lips as I had every night before we slept. And before they lowered the coffin into the ground, I gave it one last kiss, wishing it were her.
Our lives were two intertwined vines…
And now, there is nothing. I go days—sometimes weeks—with no physical contact with another human being of any kind. I crave even a handshake—and a hug…a hug is a pleasure almost beyond imagining. But neither of those comes close to the feel of her next to me in the bed at night—an hours’ long snuggle that stands in memory like a myth of the gods.
The greater hunger
But there is a thing even worse than that physical absence. I had no name for it until two days ago. I call it “soul hunger.” And it is a privation that makes “skin hunger” the merest wisp of desire by comparison. If friends are, as Plato would have it, a single soul in two bodies, what, then, are lovers, whose unity grows out of true friendship?
Jane’s death 25 months ago from NET cancer has changed me…
I miss Jane’s touch; I miss touching her; but it is the absence of her soul that grieves me most and throws my mind into chaos. A hug can be had for the price of a hug—but there is no price nor barter for the brush of a vanished soul.
I am inching closer tonight to setting up our own team for the Marathon Walk this year. I wish I could say for certain whether my logic is merely justifying my own ego or whether this is something that really does make sense to do at this stage. Part of me thinks waiting another year to go out on our own is the smart thing to do. But part of me thinks marching under our own banner will open more opportunities to raise money for NET research than marching with someone else will.
For example, creating our own T-shirts would create the possibility of selling space on them to both local and national companies. Caring for Carcinoid has sold the space on their shirts to a number of major national corporations. Honestly, I am not sure they have the space or the inclination to sell space to Greater Fall River businesses. If we had our own shirts then we could, perhaps, create a new stream of revenue to help fund research and education about NET. And one of my goals from the start was to find ways to bring new money into the fight–not simply redistribute the money that was already coming through the door.
Walking with Jane has begun to develop a reputation locally that could take us into places neither Dana-Farber nor Caring for Carcinoid could reach. In addition, when we do our first mailing, people will be more likely to donate to the local charity than one they may not have heard of. While eventually, we want to be national in the scope of our efforts, right now our roots are here, and in both the short- and long-term, we will need to draw our sustenance from this area. We can do that in ways the other two groups doing the Walk for this disease cannot.
My other major concern was whether or not we could field a team that was bigger than a single person. Last night I posted an event on Facebook to see if there were anyone else out there who would be willing to participate. As I write this, seven people have volunteered. Another two expressed interest earlier. Whether all of them will follow through on that offer remains to be seen, but the initial returns are satisfying and encouraging.
The question then becomes how much do we sell space on the T-shirts for. Is a logo worth $250? $500? $1000? Is a name in 24 point type worth $50? 100? $200? And how do we pitch this to the businesses?
And do we offer the shirts as an inducement not only to walk but to donate to the cause? How big a donation earns someone a Walking with Jane Marathon Walk Team T-shirt–remembering that the more T-shirts we distribute, the more valuable that real estate on the back of the shirt becomes?
If you have thoughts on any of this, please make a comment or drop us a line at walkingwithjane@gmail.com.
