Conversation matters

Death, Jane

An important conversation

Jane and I were not obsessed with death. If anything, we were too busy living to spend much time on the subject. But once every year we took a portion of a day to talk about life-threatening medical issues and what we wanted done if we were incapacitated for some reason in a way that left us unable to make end-of-life decisions for ourselves.

Have the conversation.

That discussion became considerably more intense in the days leading up to the surgery to replace the valves in her heart the NET cancer had destroyed. At the best of times, those conversations had been difficult. But we saw them as necessary long before we heard the word carcinoid–and they became even more necessary as her disease progressed.

We all live with death

Neither of us feared death. Nor did we see it as an immediate threat when we first began having those conversations in the months before we got married. Death, for us, was a piece of life–but a piece of life in the distant future. That didn’t mean we did not prepare for it as best we could. Neither of us wanted the other to have any questions about where the lines were, though, if it came on sooner than expected.

Jane and I were not obsessed with death.

As I wrote recently, death is one of the elephants in the room for NET cancer patients. But it is an elephant in the room for most Americans. It is a thing very few of us are comfortable discussing. It is as though we think that by not talking about it, we can avoid it.

Knowledge matters

After Jane’s surgery, she spent four weeks in a cardiac intensive care unit. On three separate occasions, I had to make decisions about her care because she was not in a position to make those decisions. Someone who is comatose can’t answer questions about her care. I was very glad we had discussed, as precisely as inexperienced people can, what it was she wanted done under those circumstances.

Neither of us feared death.

I discovered that the land at the edge of death is far more murky than either of us could have imagined. We had seen it as a place with clear black and white boundaries. We could not have conceived the number of shades of gray that inhabit that place until we had seen them. If intubation will buy the time it takes to solve the riddle of potentially life-ending falling blood pressure and respiration, is it really an “heroic measure?” And when the only thing keeping the body alive is a pacemaker, is there a point to letting it continue to circulate the blood?

Decision-making about care

Despite all the conversations we had about what to do, none of the decisions I confronted in those final 28 days was easy to make. But I cannot imagine having to make them without those conversations we had about where Jane saw lines–about how and when she wanted her life to end. I tried to honor what she wanted–which was not necessarily what I wanted.

…the land at the edge of death is far more murky…

Yet I also know that the vast majority of the patients on that floor had never had a conversation with anyone about what they wanted the end of their lives to look like. Nurses and doctors told us over and over how lucky we were to have discussed those issues–that two-thirds to three-quarters of the patients in that cardiac unit had never had a conversation with anyone about what they wanted if they were in a coma with no hope of recovery.

Knowing where the lines are

And I saw the results of those failures to communicate on this vital subject. The husbands’, wives’, sons’ and daughters’ plaintive tears and cries are etched on my brain forever. They didn’t know what to do–and there was no one who could legally–or morally–tell them.

I tried to honor what she wanted…

Jane and I drew our lines in different places than others might–than, likely, you who are reading this will. That doesn’t matter so long as you–as caregiver or medical proxy–know where the lines are for your loved one–and you are willing to carry out their wishes. The only way to know those things is to have that awkward and difficult conversation about end-of-life issues–and I’m not talking about funerals and burial plots.

The conversation matters

If you have advanced NET cancer you owe it to the people you love to have a frank discussion about when it is time to let you go. If you are the caregiver for a patient, there are things about what that person wants that you need to know before they are unconscious and unable to communicate their desires. You can only get that information by talking with them about those realities–no matter how uncomfortable that discussion makes you both.

I’m not talking about funerals and burial plots.

When Jane was in her first coma, someone told me she would awaken from it–but that at some point I would have to make a decision about letting her go based on the quality of life she would have if we continued. When Jane descended into her last coma, one of her doctors reminded me of what we had both said to all of them over the preceding weeks–that when a fighting chance became no chance, that it was time to make her comfortable and let her go.

The value of knowledge

So I did. And I let her go with a clear conscience, knowing she was going to Death on her own terms.

You can only get that information by talking…

The days since have not been easy. I miss her every day. But I know things would have been far more difficult if I had not known what she wanted.

Have the conversation.

Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions--even though the conversations were uncomfortable.
Few people are ever as alive as Jane was, even when she was dying. But that did not mean we did not talk about death and end-of-life decisions–even though the conversations were uncomfortable.

We need you–all of you

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Faces of NET cancer

I follow about a dozen online NET cancer support groups. I check in with each of them for at least a few minutes every day. The stories I read in them, and the questions people ask, tear at my soul. Sometimes, they take me back to Jane’s experiences. Sometimes they open new possibilities of hope. Sometimes they tell me that someone I have come to know through their posts will no longer be posting because their battle has ended the same way Jane’s did.

…I’m not asking you for money.

I don’t comment very often. On medical issues, the doctors know much better than I do what a set of symptoms means. I try to be supportive when someone goes in for surgery or some other procedure–knowing how much those few words of support are to someone with NETs. I share these posts on those sites when what I’ve written seems appropriate.

The need to listen

Mostly, though, I listen. Walking with Jane‘s goal has always been to help patients–and the only way to do that is to listen to people talk until you understand what it is they need. Some of the most important pieces I’ve written in the last year emerged from patient concerns I first learned about by listening to what people in the groups were worried about.

…the questions people ask tear at my soul.

But there are some underlying themes in those posts that never really get addressed. They are the elephants in the living room of NET cancer that sometimes we desperately need to talk about–but are terrified to raise outside the edges of a conversation. In theater, we talk about the subtext of a script because people in real life never talk about the real issues they confront–and neither do actors on a stage.

The elephants in the room

The two biggest elephants in the room are interconnected. The first of these is we have no cure for advanced NET cancer–and very few NET cancers are discovered before they have become advanced. The treatments we have can slow tumor growth down for a time for some patients, can alleviate the symptoms for some patients. For a lucky few, those treatments can even shrink the tumors they have for a while.

…people in real life never talk about the real issues they confront…

And we have new drugs and procedures in the pipeline that may help more patients survive with a better quality of life for a longer period of time. But we don’t have a cure. We have ideas that may eventually turn into cures, but those ideas are only now getting into trials and are likely years from being proven and adopted or disproven and shelved.

Some things, you never forget

But the lack of a cure leads directly to the second elephant in the room: People die from NET cancer every day. I have seen what that death looks like. It is something I can never forget.

…we have no cure…

And it is something we each need to work to change every day–no matter how difficult that work may seem.

Walking the talk

For the last four years, I’ve walked the Dana-Farber Cancer Institute’s Boston Marathon Jimmy Fund Walk to raise money for NET cancer research. I’ve been joined by former students and by friends and families of those who have lost loved ones to NET cancer. Over the four years the groups I’ve walked with have raised over $130,000 to help fund research we hope will lead to a cure.

It is something I can never forget.

But last year was special. In April, I got a note from a young woman with advanced NET cancer. She wanted to walk with our team. She didn’t walk the entire 26.2 miles–she wasn’t sure she could. But she took on the 13.1 mile course. And she raised $7000 doing it.

Being brave because we need to be brave

By Walk Day, we had three more patients determined to walk at least part of the distance. One felt even the three-mile course would be a stretch for her–so she recruited three friends, in case she needed them, and pushed her wheel chair from the Jimmy Fund building to Copley Square. And I know of two other patients who made the journey over part of the course for the same purpose.

But last year was special.

The thing that strikes me about NET cancer patients is their bravery in the face of long–seemingly impossible–odds. They need to be brave because they know what will happen if nothing changes. Their caregivers need to be brave for the same reason.

The unkindness of strangers

For 40 years both the federal government and the cancer establishment largely ignored NET cancer because they did not see their support of it as cost-effective. That meant NET cancer patients became orphans totally at the mercy of the kindness of strangers–and there were very few kind strangers. The result of that less-than-benign neglect was likely hundreds of thousands of deaths.

They need to be brave…

And even since the “rediscovery” of NET cancer by those with resources seven years ago, the amount of funding NET cancer researchers have found still does not amount to table scraps left behind by the family dog. Last year, the total spent on NET cancer research in the US from all sources was no more than $10 million at best–and realistically likely less than $8 million.

We need everyone–starting with you

I know what NET cancer looks like. I know how crippling the diarrhea, the flushing, the panic attacks–all of it, is. But we need every patient’s help if we are going to change the landscape of NET cancer. I know the commitment of time and energy being a lay caregiver for a NET cancer patient takes. I’ve lived it. But we need the help of very caregiver if we are going to save the people we love from this vile disease.

…table scraps left behind by the family dog…

On September 20, I will take on the Boston Marathon course from Hopkinton to Boston–26.2 miles. Between now and then, I’ll write letters and do every fundraiser I can manage. I’ll talk to women’s clubs and business groups and high school assemblies.

Come walk with us

But I’m not asking you for money. I’m asking you for something more. I’m asking you to come walk with us, either on the Jimmy Fund Walk if you are here in New England, or on some other fundraising walk for your regional NET cancer program if you are not. Every NET cancer research program is dying for your help and support.

…change the landscape of NET cancer.

To quote another of my heroes, George Washington Carver: “Put down your buckets where you are.” If we are going to change the future, we all have to do more than we think we can to make it happen.

We need every caregiver and every NET cancer patient's support if we are going to find the money to cure NET cancer. Come walk with us.
We need every caregiver and every NET cancer patient’s support if we are going to find the money to cure NET cancer. Come walk with us.

 

Impossible? At 51 months, nothing is

Goals, Grief, Jane, Marketing NETs, Uncategorized

Fever dreams

I had a 101.2F fever ten days ago, on the 51 month anniversary of Jane’s death. For the first time, I was not physically at her grave on the tenth of the month. The flu saw to ending that streak in a way no amount of rain or snow or heat or cold had succeeded in doing.

…we need to work more effectively together.

There is a line in The Who’s Tommy about sickness taking “the mind where minds don’t usually go.” My mind took that journey as fevered day turned into fevered night and fevered day for the better part of a week. I’m not sure what I learned from that reminder of mortality, only that something feels different.

The empty grave

I went to the cemetery Saturday, the first day my fever went below normal for a good portion of the day. It was rainy and raw and I gave myself a small relapse that night as a result, for all that I only stayed long enough to walk from the car to Jane’s stone, leave three kisses there, and walk back to the car. For the first time, the gesture seemed empty and almost silly.

…something feels different.

I had no sense of her presence there for the first time since she died. It felt as though her soul had moved on. Maybe it has. Maybe it is time I started thinking about my life without Jane as something beyond this endless war against NET cancer. Not for the first time did I remember that this is not the life she wanted for me. But it was the first time I thought, “maybe she’s right.”

Mourning and killing

For 51 months I have focussed on just two things: mourning Jane and killing NET cancer. Oh, I’ve redone some rooms and worked on expanding some garden beds; I’ve sorted through Jane’s clothes and possessions and sent them on to others where they could do some good; I’ve travelled to Seattle to visit family; but each of those things has been about mourning and dealing with loss.

…the gesture seemed empty and almost silly.

I’ve done some social things as well. But all of those have either been centered on NET cancer or served as a reminder that Jane is not here and that I am truly alone without her, no matter how many people are around me–and no matter how much they are focussed on me and trying to get me to feel better–to forget, even for a little while, the treasure I have lost.

The first burden

A grief counselor suggested recently that I take too much responsibility on myself–that somehow I make myself responsible for all the ills in the world–and for solving those ills. She’s right. Every time someone dies of NET cancer, I feel responsible for that death. “If only you’d worked a little harder, they wouldn’t be dead–we’d have a cure,” the little voice that imitates Jiminy Cricket mutters in my ear.

…I am truly alone without her…

The rational me knows better, of course. I know precisely how that sense of responsibility was born back when I was a child. It is the burden every eldest child carries–especially those from large families. When a younger sibling did something wrong, even if we were not physically present, it was somehow our fault. We were supposed to set the example–and when they failed it was because the example we set was not good enough.

The second burden

My parents added another layer of responsibility to that. Periodically, my brothers and I would be set some task–cleaning the cellar, mowing the lawn, something long and involved. I would do what seemed my fair share of the job–whatever it was–more quickly than whomever I was working with. But if I stopped there to let them do their share, I was told, in no uncertain terms, that I was to work until the job was finished–even if it meant doing more than the others.

…the little voice that imitates Jiminy Cricket mutters in my ear.

I grew up with the idea, then, that I was responsible for everything–no matter when I started and no matter how much of the job I actually did. I grew up with the idea that I was responsible for everything that happened both in my life and in the lives of everyone around me.

The responsible and the impossible

The result is, I set impossible standards for myself and ridiculous goals for anything I put my hand to. There is no such thing as “good enough.” Anything less than the highest standard I can reach is unacceptable.

…I was to work until the job was finished…

That I have rarely failed to reach whatever goals I have set–no matter how insane they appeared to people in the outside world–has reinforced the idea that nothing is impossible if I can put my mind to it and recruit enough of the right people to make it happen. Arguably, Jane’s death was the first time I had not found a way to outfox what any sane person would see as a no-win scenario. In some respects, the work I have done since on NET cancer could be seen as an effort to correct that failure.

Facing the impossible reality

But I have set myself a seemingly impossible task, especially in the way I have approached it. Just keeping up with the research on NET cancer is a significant time and energy commitment. Translating that new information into laymen’s terms requires another not insignificant amount of time and energy. Getting that information out to people who need it through this website, social media and podcasting, brings just that piece of this work to a 40 hour a week job.

…I was to work until the job was finished…

Fundraising and awareness raising consume similar amounts of time and energy. Record keeping, social media, public relations, team building, grant reviews… There is a reason the American Cancer Society employs the number of people it does–a reason that the household names in cancer funding employ the staffs they do.

Impossible isolation

There are at least a dozen small foundations working on NET cancer. Most are one-or two-person operations established and run by individuals whose lives have been touched–or destroyed–by NET cancer. We are, each of us, determined to bring this beast down. But too much of the time, we are working alone. We are isolated–and that isolation weakens the effect of our efforts.

…I have set myself a seemingly impossible task…

And even the bigger foundations–the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–are hamstrung in their efforts by the tiny size of their staffs. I know what it takes to organize a conference, do a major mailing, maintain a website… What they do–what all of us do–is nothing short of miraculous.

Creating a new road

But there is an awful lot of weight on a very small number of shoulders. And sometimes it seems like we are all trying to carry the full load by ourselves. We cross-post some things on Facebook, Pinterest and elsewhere. But we don’t seem to talk to each other very much beyond the needs of the moment.

…isolation weakens the effect of our efforts.

I’m probably the worst of us when it comes to that. It was the mistake I made at the beginning–and it is a mistake I have continued to make since. It has left me physically and emotionally exhausted–and when I look at what I wanted Walking with Jane to be and what it has become I know that I cannot continue as I am.

Recruiting stories

Back in January, I wrote a series of pieces on goals for the year ahead. Among those goals was the need to develop closer ties among all the groups engaged in the fight against NET cancer so that we could all do a better job. It is still an item on the to-do list.

…we don’t seem to talk to each other very much…

But we need to do more than simply unite the groups working on this in the US and elsewhere. We need to get patients and caregivers far more involved than they are now in the public relations, fundraising, and awareness sides of this. I tell Jane’s story constantly–and it is a powerful one that rarely fails to grab whatever audience I tell it to and move them to some action.

Coming together

But each patient, each caregiver has a similar story to tell–and they are stories we need to tell–and tell to the broadest audience we can reach.

I tell Jane’s story constantly…

There is a stone on my desk with a quote from Helen Keller etched into its surface: “Alone, we can do so little; together, we can do so much.” We need to stop working in isolation; we need to work more effectively together.

Together, we can do anything--nothing is impossible.
Together, we can do anything–nothing is impossible.

Preparing for a long walk

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

Hat in hand

Dear friends,

Jane and I usually liked snowstorms. They often meant an unexpected day off from work and an extra hour or two snuggling under the covers. We would have a leisurely breakfast, then go out to shovel together. I would clear a path to the drift from the snowplow at the end of the driveway and work my way through that mountain while Jane attacked the path to the front door before starting on the snow in the driveway.

We are making a difference…

We made a game of it, her working from one end and me from the other. When we finally met somewhere in the middle we would hug and kiss as though we had been separated for days rather than an hour–and that the obstacle between us was greater than a few feet of snow.

Missing my other half

Clearing the snow from the driveway and walks is not the same since Jane died of NET cancer in December of 2010. Now it is just a chore I try not to think about as I do it. Every snowstorm is laced with too many memories. The hot chocolate doesn’t taste the same when there is no one to share it with.

We made a game of it…

Doctors and researchers learned a lot from Jane’s final struggle with NET cancer—and they have learned a great deal more since. The use of liver embolization has become relatively common in assaulting NET cancer tumors that have metastasized to the liver. We have promising new drugs in trials that may better slow the progress of the disease and its debilitating symptoms.

On the near horizon

Later this year, a Phase 2 trial on an immunotherapy treatment that seems to offer a chance of a cure for some patients will begin. A new scanning technique using Gallium-68 is being tested and is detecting NETs we were not able to see before—as well as giving greater clarity to those we can see using the relatively new Octreoscan developed since Jane’s death.

We have promising new drugs in trials…

Those new scanning methods, combined with greater awareness in the medical community, have increased the number of NET cancer cases being diagnosed every day. Four years ago, we were finding 34 new cases a day. Now, 40 new people will hear they have NET cancer in the US today. Another 40 will get that news tomorrow and another 40 the day after that.

Cost of a cure

And while we can offer them more hope than we could offer Jane 55 months ago, we can still not offer them a cure. It is only a matter of time before the number of deaths attributed to NET cancer every day begins to increase to match the number of diagnoses if we don’t keep moving the research forward.

Now, 40 new people will hear they have NET cancer in the US today.

But research costs money—lots of it. And while drug companies and government have increased their support a little bit in recent years, we are still spending barely $8 million a year on a form of cancer that is so nasty even patients are sometimes reluctant to talk about it and its symptoms.

Walk the walk

That’s where you and I come in. I’m not wealthy—and neither are the vast majority of you who will receive this letter. But fighting a cancer whose research has been so poorly funded for so many years, every dollar counts.

…research costs money—lots of it.

And every dollar you donate through this letter will go straight into carcinoid/NETs research at the Dana-Farber Cancer Institute through my Boston Marathon Jimmy Fund Walk. Again this year, I will take on the 26.2 mile course in Jane’s memory–and in support of NET cancer patients everywhere. Please, give what you can.

Change the future

We are making a difference with every dollar every day. And some day, I really will stand at Jane’s grave and tell her we’ve killed her cancer once and for all—that no one is going to die of it ever again.

Please help us make that day happen sooner with your donation today.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Team Captain, NETwalkers Alliance

p.s. An anonymous donor has again offered to match the first $5000 I raise between now and June 30. That means when you donate to my Boston Marathon Jimmy Fund Walk now, your donation is effectively doubled. Please take advantage of this generous opportunity.

p.p.s If you cannot make a donation, please share this letter with people you know and encourage them to get involved. Or, if you’d rather make a donation for NET cancer elsewhere–please do so. I want this thing dead.

p.p.s Of course if you’d like to walk with us, either for real or virtually, you can sign up for that here.

The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic--the research is real.
The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic–the research is real.

Garden lessons for NET cancer

Goals, Marketing NETs, Uncategorized

Creating seedlings for the summer garden

It’s snowing again in southern New England. We’ve picked up another eight inches today so far. We could end up with as much as a foot by the time this storm drifts away sometime tonight. I cleared six inches from the driveway and walk about two hours ago. I’ll have to go out again in a little while to clear them again.

…even the answers we have are not very good ones.

Ten days ago, I planted some perennial seeds for this year’s garden projects. Earlier this week, I set up my plant lights as the first seedlings emerged from the soil a full week ahead of schedule. This weekend, I’ll start more seedlings and likely begin transplanting some of the things that are already up into bigger quarters.

The farmer’s garden

Both my grandfathers were farmers and my father grew up on his father’s farm. He worked not only on his father’s land but on the neighboring spreads as well. He turned the soil, hoed out the weeds, bailed the hay, milked the cows and tended the chickens. But we didn’t have a garden until I was ten–and then, I think, only because my mother wanted one.

It’s snowing again in southern New England.

My mother’s first garden was a small thing–a 12 foot circle of dirt just outside the kitchen door between the house and the driveway. She grew tomatoes there, and very little else with much success. Radishes, I think, and gnarled carrots that were stunted and twisted by the clay and rock of New England soil. It was a good place to dig for worms.

Lessons from the garden

Farming is in my blood but I didn’t have my own first garden until the year after I graduated from college. I was living with friends in a house that had a small yard with some raised beds and some leggy, unkempt roses nestled against the foundation. It wasn’t much, but it gave me some pleasure. I like to see things grow–and I don’t mind getting dirty in the process.

My mother’s first garden was a small thing…

I’ve learned a lot in my gardens–sometimes even about plants. I was impatient and short-tempered in my youth, but hiking up long trails with a heavy pack taught me that I needed to learn patience and my gardens were the place I learned to be that. You can’t rush the growth of a plant, nor can you slow it down once it decides to start growing.

Garden realities

And you can’t count on plants any more than you can count on people sometimes. You can do everything right with a pepper plant, but that doesn’t mean you’ll get a bumper crop of peppers. Nor does it mean the Habanero peppers you grow this year will have the same heat as the ones you grew last year. In the garden, as in life, nothing is entirely predictable. You can only do the best you know how and adapt when you have to.

You can’t rush the growth of a plant…

People laugh when I tell them it takes three years or more to get a garden truly doing it’s best. It takes two years just to get most of the rocks out of the soil here in New England. It takes three years to build the soil into something better than dirt. It takes manure and compost and careful attention to soil composition and acidity to really get things cooking.

The impatient gardener

But people want things right away. They throw chemical fertilizers and herbicides and pesticides at their plants without paying attention to anything but their own need for a quick fix and a quick success. In the process they often make the longterm results worse. Kill off the bees and the earthworms with pesticides and herbicides and destroy the tilth of the soil by relying too much on chemical fertilizers at the expense of organic matter and your yields will decline markedly over time.

…nothing is entirely predictable.

The lessons I learn in the garden I try to apply to every aspect of my life. As a teacher, I quickly learned that every student was as different as every tomato plant. Each one had to be treated as an individual. I learned I had to be just as patient with people as I did with the plants in the garden.

Moving quickly, moving smartly

I’m learning those lessons all over again as I work on Walking with Jane and NET cancer. My initial goals were shaped by my anger and frustration and impatience. NET cancer is a disease and my gardening instinct is to move quickly when I see a plant–or a person–in trouble. In terms of finding a cure, we need to do that quickly.

But people want things right away.

But organizations are made up of people–and while it is all right to be impatient about finding a cure, being impatient with people does about as much good as tugging on a plant to try to get it to grow faster: about all you accomplish by doing that is to pull a useful plant out of the ground. Everyone is doing the best they can with the tools they have to work with. You can’t cultivate people by throwing fertilizer at them; nor can you ask someone who is an apple tree to grow a turnip.

The patient gardener

And the same thing applies to me. Four years ago this month the idea of Walking with Jane began to coalesce out of conversations with a number of friends and colleagues. It would be another 14 months before we were ready to create Walking with Jane as a non-profit with a clear vision of where we wanted to go and what we wanted to do. And that vision has continued to evolve.

You can’t cultivate people by throwing fertilizer at them…

I used to tell young teachers–and still tell young gardeners–that it takes three to five years to become good at something you do. It takes five to seven years to really master a new skill or fully develop a new idea. By that measure, I am only mid-way to really knowing what it is I am doing.

The master gardener

People like to say that if you’ve been dealing with NET cancer for six months you have the equivalent of a Ph.d in the subject. But that is more a measure of how little we really know about the disease than it is a real understanding of the disease and how it works. The idea may make us feel good–make us feel like experts, but we aren’t. We only become experts when we recognize we have more questions than answers–and that even the answers we have are not very good ones.

…the same thing applies to me.

In the garden or the classroom, I may be an expert at that level. But in the worlds of NET cancer and non-profits, I’m not even sure I’m qualified to scatter a few seeds on the ground in the hope something useful comes up.

It's snowing again in southern New England but my thoughts have turned to my garden rather than winter. I've started my first plants for this year's projects.
It’s snowing again in southern New England but my thoughts have turned to my garden rather than winter. I’ve started my first plants for this year’s projects.

Best and worst of times

Uncategorized

Worst times for Walking with Jane

I was seriously thinking about shutting this website down one year ago this week. It was sucking up time and energy I thought might better be used elsewhere. Thirty months after its launch, the site had averaged less than 15 views a day for the preceding three months, and barely 18 a day over the previous year.

…someday–soon–NET cancer will die.

The reason I’d started the site was I saw very little information on carcinoid/NETs that was written in a language regular people could understand. I remembered my own frustration when Jane was first diagnosed. I wanted to help other people who suddenly found themselves in that same boat. I lamented the lack of support groups for both patients and caregivers. There were no online groups I could find and face-to-face groups meant a drive of two hours or more even in New England.

Bad times on walkingwithjane.org

Among the first things we launched was an online forum that had immediately become a spam magnet. In the three months it was up it attracted over 3000 posts–none of them from patients. Only two were not ads for something with no connection to NET cancer–and one of those was from me. Since then, a number of support groups have come to my attention on Facebook, all hidden behind strong privacy walls and patrolled constantly by administrators to keep them that way.

I was seriously thinking about shutting this website down…

But initially the main site seemed to do pretty well. Our first five months attracted over 6000 views. But the fall from grace thereafter was steady and implacable. It didn’t seem to matter what I wrote about or what links we provided or how much I shaped each piece to SEO standards. I read everything I could about what made a website popular. None of it made much difference.

Worst times on walkingwithjane.org

By last February, I was ready to hang it up. I decide to give it one last push. If the March numbers did not show significant improvement, I would shutter walkingwithjane.org and rethink what I was trying to do.

…initially, the main site seemed to do pretty well.

I spent some time looking at what pieces had done better than the rest. There weren’t very many. I haunted support groups and listened to the questions people were asking in them–and not getting good answers to. I started trying to answer those questions.

Better times on walkingwithjane.org

A year later, everything is different. Last year, February generated just 475 views for the entire month. This year, February generated two shy of 1700. July was the last month with less than 1000 views and despite the slow start in January and February of 2014, we had nearly 17,000 views for the year.

…I was ready to hang it up.

The website was not the only thing that took off last year. In 2013, our Jimmy Fund Walk team had seven walkers signed up, five of whom walked all or part of the course. We raised $21,870 in that effort. The year before, we’d had a slightly larger team, but only raised about $17,000.

Better times for walking

In 2014, we merged our team with another team that was also raising money for NET cancer research. that combined effort created a team of 48, including five virtual walkers. We had seven Pacesetters–people who raised more than$1500 each. As a team, we raised nearly $68,000.

A year later, everything is different.

Our Relay for Life team raised over $9000 last year for the American Cancer Society, though the size of the team continued to shrink despite our best efforts. That was the lone problem on the fundraising front.

Better times spreading the word

We appeared with Drs. Jen Chan and Matt Kulke on Doctor Radio twice in 2014 to talk about NET cancer. There were stories printed in local newspapers about our efforts that helped educate people about NET cancer. We were officially recognized by the IRS as a 501 (c)(3) charitable organization. I was reappointed to the Dana-Farber Cancer Institute’s Visiting Committee for Gastrointestinal Cancers.

As a team, we raised nearly $68,000.

It was a great year for Walking with Jane.

Bad times for me

But it was a hideous year for me personally. While I contemplated shutting the website down, I was also mourning the loss of one of my oldest and dearest friends–a woman I had gone to high school with and who had changed my life during a truly troubled time. In the six months before her death from triple negative breast cancer, we had talked almost every day–both of us very aware that she was, barring a miracle, facing the end of her life.

It was a great year for Walking with Jane.

In June, another of my oldest friends learned his wife has breast cancer. This fall, three of my favorite students lost their father to colon cancer. Another friend lost her mother to Parkinson’s. My father-in-law was diagnosed with a serious case of prostate cancer.

Worse times for me

But August delivered the worst blows. I lost one of my two nieces after a long illness. She left three children. Two days later, my phone rang at 5:30 a.m. My brother was calling from Seattle. My father had had a stroke a few hours earlier. It wasn’t good. How soon could I get there?

But it was a hideous year for me…

I caught the first flight out of Boston I could get to, but he was dead before I landed. I spent a week with my brothers and sisters making calls to his friends and cleaning out his house.

Times that have passed

My father and I were estranged for many years. Jane once had to physically separate us during one of his visits. But things changed in 2010. He had lost my mother after a long battle with Alzheimer’s in February. When I called him the night Jane died to tell him she was gone, he gave me the only consolation that made any sense. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.”

…August delivered the worst blows.

I flew out to Seattle every Christmas after Jane died. We spent Christmas Eve and Christmas night together and talked about what we had lost and what we were trying to do deal with that loss. We finally had something in common. I miss him.

Times of nightmare

About once a month since Jane died, I have a dream. We are out somewhere and we get separated. I call her name. She does not answer. I look everywhere for her. I cannot find her. I become increasingly frustrated and upset as I race around trying to find her. Then I wake up. In that moment of realization I am unbelievably sad and upset. Sometimes I wake up with the tears already streaming down my face.

But things changed in 2010.

I’ve had that dream every night for the last two weeks. Maybe I have had it every night for the last four years, two months and 19 days but don’t remember having it most nights. I only know that most nights I avoid going to sleep for as long as possible.

Times of reflection

In December, I took a week off when my brother came out to visit. I’ve found it very hard to get back to work since he left. Part of me would like nothing more than to stop doing all this work on Walking with Jane. I’d like to lie in bed and stare at the ceiling. I’d like to curl up in front of the TV and pump DVD after DVD into the player. I’d like to sit and watch the snow pile up higher and higher, blocking the doors and the windows and relieving me of any responsibility for anything.

About once a month since Jane died, I have a dream.

I’ve spent the last two weeks thinking about the goals I can’t seem to reach and the seeming futility of what I am trying to do. February has been a cruel month. I’ve lost track of how many people in the NET cancer support groups have died in the last 28 days. Every day brings word of another death or two or three–of another person who has been told there is nothing more the doctors can do–of another person going home to die.

Times of hope

But for each of those stories I hear about someone getting into a promising trial or undergoing a liver embolization that alleviates their symptoms and slows the disease; I read about others finally getting a definitive diagnosis thanks to an Octreoscan or Gallium scan; and I hear about the new immunotherapies on the horizon that may finally offer hope for a real cure.

February has been a cruel month.

Maybe that’s why I go searching for Jane more often in my dreams: to tell her there is real progress being made and that someday–soon–NET cancer will die. Or, more likely, I just miss her.

Our Jimmy Fund Walk team was huge last year with 48 participants. This is the group that started at the 13.1 mile point.
Our Jimmy Fund Walk team was huge last year with 48 participants. This is the group that started at the 13.1 mile point.

David Carr’s NET cancer connection

Carcinoid/NET News, Marketing NETs, NET Cancer Awareness Day/Month

David Carr’s death

New York Times media columnist David Carr, who died suddenly February 13, was a lungnoid according to the NYC medical examiner–and complications from his NET cancer caused his death. The medical examiner also cited heart disease as a contributing factor. The report calls the NET cancer metastatic, which means he could have had tumors in his liver or elsewhere.

Carr was clearly an interesting and complicated man.

Depending on whether or not his tumors were producing serotonin and were in his liver as well as his lungs, that could have had an influence on his heart disease.

Carr’s NET cancer connection

Reports have not said, however, whether or not that heart disease was carcinoid heart disease or not. That Carr earlier used cocaine and other drugs may have contributed to his heart disease–or been entirely responsible for it. Without more detail than is in the published reports, we can’t be entirely sure.

…complications from his NET cancer caused his death.

To its credit, the New York Times article quotes the medical examiner’s report in the third paragraph of its coverage, as do some other media reports. However, the vast majority report only that lung cancer was the cause of death, complicated by heart disease.

Media coverage of Carr’s death

Most reports immediately jump into a discussion of Carr’s smoking habit either stating directly or implying that his lung cancer was caused by that. Not even the Times‘ report discusses neuroendocrine lung cancer, beyond the quote from the medical examiner.

…we can’t be entirely sure.

Carr had beaten Hodgkins’ lymphoma, an experience he talked about in his 2008 memoire, The Night of the Gun. Most reports included his lymphoma, properly named.

Simplifying cancer

One of the problems all cancer advocates face is the public perception that cancer is a single disease. Even among people who understand there is a difference beyond location between breast cancer and lung cancer or lung cancer and prostate cancer, few understand that there are multiple forms of each–all of which have distinct courses, prognoses, and treatments. In fact, even among NET cancer patients there is not always an understanding of how many different forms carcinoid/NETs can take.

Most reports included his lymphoma, properly named.

The media today are in the business of simplifying the complex to a level most people will understand. This has always been the case to a certain extent–and with cancer in particular, it arguably always has been.

Another missed opportunity

Still, Carr’s death represents, as did Steve Jobs’, a missed opportunity for the media to educate the public about NET cancer. As a reporter, I like to think I would have seen “small cell neuroendocrine lung cancer” and asked how that was different from other lung cancers. It was certainly an idea I tried to instill in the young reporters I trained over the years.

The media today are in the business of simplifying…

Carr was clearly an interesting and complicated man. We will miss him as a media critic and as a keen observer of the world around him. I wonder what he would have written about the reporting on his death. That the media missed a major part of the story by failing to confront the unanswered question–what is neuroendocrine lung cancer?–would surely have irked him.

(Thanks to Ellen DeSilva Thompson for pointing David Carr’s story out to me. My focus has been elsewhere the last few weeks.)

A shadow can only tell us so much about the person who cast it. Reporters have to look beyond the obvious sometimes to get the full story.
A shadow can only tell us so much about the person who cast it. Reporters have to look beyond the obvious sometimes to get the full story.

For Jane, Valentine’s Day, 2015

Jane, Poems, Uncategorized, Valentine's Day

For Jane, Valentine’s Day 2015

I weep. The snow encases grief in silent white
Cement that crumbles. Cold ignites the frozen tears
That dry the rotting purpose of silent noisome light.
 
My words are paper matches flung against the starless night
And sunless days of deepest space when all is gone
To less than nothing. Nothing moves and nothing sings.
 
My soul aches silence none can hear or feel or see;
That none can taste or smell or sense. The maggots chew
The sounding strings and chew the echoed body’s boards.
 
Five times this day has come. Five times this day has passed.
For fifty months this salt has seared my days and nights
And tried to cleanse my heart and tried to scald my mind.
 
The snow may fall, the wind may rise, the cold may pierce
And shriek the void; still, dawn will come and I will rise
And sing the song and dance the dance ’til time and space both end. 
 
All my love, always and all ways,
Hubby
I wrote a poem for Jane every year on Valentine's Day and on our anniversary.
I wrote a poem for Jane every year on Valentine’s Day and on our anniversary. I still do.

A snow covered grave at 50 months

Death, Grief, Jane

Plodding through the snow

I went to visit Jane’s grave today. To get there, I had to climb over a three-foot high drift the plow left behind when it cleared the narrow road through the cemetery. Then I trudged through the 10-12 inches of powder yesterday’s storm dropped, tramping it down so that others can get to the headstones of their loved ones more easily.  I should have brought a shovel.

…that feels like moving forward.

The snow has reached Jane’s name on her family’s stone.  The snow is actually deeper than that but the wind has hollowed out a space around each grave in that section of the cemetery. It looks strange. The cemetery is at the top of a hill and the wind blows through there at a pretty good clip in the winter. I put some Valentine’s Day decorations on her grave but I didn’t stay too long. It’s been colder there on other days, but on the best of winter days my body won’t stay there long. I can hear both Jane and her mother chiding me for standing out in the cold.

Changing spaces

As these monthly anniversaries go, today was not bad. Last month, I had trouble getting out of bed; every minute of the day was a struggle. I spent yesterday shampooing the rug in the dining room and hall. This morning, I moved the plants and furniture back in place and decided I still don’t have the living room set up in a way that works.

 I should have brought a shovel.

Truth be told, the way Jane and I had it set up originally was just about perfect. Unfortunately, I discovered very early on that I couldn’t live with it set up that way after Jane died. In fact, I’ve redone every room in the house in terms of how the furniture is arranged–and in some cases have changed the purpose of the room as well. What was our study is now my bedroom. The room Jane used for her crafts is now a combination library and home office. The bedroom has become a TV room that doubles as a guest room and a place to keep Walking with Jane items we use for various events.

Mixing pasts, presents and futures

And I’ve been gradually repainting all the rooms in the house, changing the colors from the careful neutrals Jane and I chose when we built the house to warmer, darker tones. It’s not that I am trying to expunge her presence–I have photographs of Jane scattered throughout the house, as well as her cross-stitch and other craft projects.

…I’ve redone every room in the house…

The houseplants we both loved still dominate the living room and dining room as they always have, though I have rearranged them as they’ve grown. And though I’ve replaced the mattress in the bedroom, all the furniture we bought when we first married is still part of my bedroom–and I still sleep in our bed every night, though never on her side of the bed.

Different people, different responses

I know people whose houses have not changed in any way since their spouse died. I know others who sleep on a couch or in a chair at night because they cannot face sleeping in the bed they once shared with their husband or wife. I know others who gave away every stick of furniture they had purchased together because living with those constant reminders was more than they could handle.

…I still sleep in our bed every night…

I know people who sold their house for much the same reason–and others who were forced to sell because with a single income they could not afford to live there no matter how much they wanted to hold onto those memories. There is no magic formula to dealing with grief–no right answer. There is only the answer that works for you—-and that answer is different for every person who grieves.

Moving  thoughts

There are times I think about moving. This house and its yard are too big for me to handle by myself sometimes. And it has too many stairs for me to deal with when I get old. But we spread the soil on this land, planted the grass and the shrubs and the trees. We installed the suspended ceiling in the basement and hung the sheet rock on its walls. We spent hours looking at chandeliers and light fixtures and deciding on countertops and cabinets. I am not ready to abandon those memories–and I am not sure I ever will be.

…that answer is different for every person who grieves.

But I can’t live in some kind of unchanging shrine either–a place where everything is precisely as Jane left it. I want my memories but I don’t want to be overwhelmed by them every day. For fifty months now I’ve tried to reestablish a sense of balance in all areas of my life. Part of me thinks I haven’t been very successful at that. But then I realize that Jane and I spent 23 years together, growing closer and closer every day until, at the end, we truly were Aristotle’s single soul in two bodies.

Questions of balance

And then she was gone–and everything was different. Fifty months is no time at all compared to the years we spent together as a singular entity. We made every decision together, did every chore together–lived our lives as together as two people can be. When Jane died, I suddenly did not know who I was anymore. I’m still trying to figure that out.

I am not ready to abandon those memories…

But change is the nature of life. The carpet and linoleum are beginning to show their age. I replaced the faucets in the bathroom and the kitchen over the last year. I’ve expanded the vegetable garden and enlarged a flower bed. I reworked the sitting area under our deck, digging out the sod and replacing it with stone. I’m thinking about setting up a bee hive, planting some fruit trees and creating a large bed of wild flowers.

Moving forward vs. moving on

People talk about moving on after someone dies. The truth is, often we don’t move on. The further I get from Jane’s death, the more I am convinced I will not “get over it” in the way that most people mean that phrase. But we can move forward–which is very different from “moving on” or “getting over it.” In fact, we have very little choice about moving forward. Life forces us to do that by its very nature.

Fifty months is no time at all…

Faucets do wear out. Lawns do have to be mowed. Driveways do have to be resealed. Our bodies do have to be fed and cared for. We have to cook and clean and do the routine little things that in the depth of grief we do not want to do–but that we do anyway.

Moving through the snows of grief

My muscles ache tonight. I’ve moved over four feet of snow in the last two weeks. I’ve moved every plant and piece of furniture in the living room and dining room at least twice in the last two days. I’ve run the rug machine until my arms hurt and my hands have blistered. There is more snow in the forecast for Thursday and again for Sunday.

The truth is, often we don’t move on.

But for now, the snow is shoveled and half the living room looks and feels right to me. For 50 months after Jane died, that feels like moving forward.

Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane's death today.
Snow shoveling and rearranging furniture may have helped me get through the 50 month anniversary of Jane’s death today.

 

 

Hell in a cold winter

Boston Marathon Jimmy Fund Walk, Grief, Uncategorized

Why, this is Hell

I learned something important over the last two weeks. While I am not constantly aware of the pain Jane’s death has caused me, I am in no way fully recovered from that event despite nearly 50 months having gone by. I can pretend, sometimes for weeks at a time, that I am back to a state of normalcy. But that is an illusion–or worse, a lie I convince myself of.

 It’s the only thing that keeps me sane.

Two weeks ago, I had the latest in an ongoing round of oral surgeries. I followed the surgeon’s post-operative directions flawlessly. I iced the site of the latest wound the way one is supposed to, avoided the nuts and crispy foods, outlawed juice, tomato sauce and all the other acidic foods I like, gave up the heavy lifting of my constant training. I spent four days largely confined to the house we built, reading novels to take myself out of the world.

Staving off Hell

It wasn’t enough. No matter how effectively the books populated my mind with other people, when I came out to eat or sleep, I was still alone–am still alone. I posted to my online grief group, trying to stay positive. But words on a screen are useless when what I really need is Jane’s physical presence–her voice–even the sound of her breathing.

I spent four days largely confined to the house…

Then it began to snow. Neither of us liked to shovel snow, but we made a game of it. Jane would start at the garage end; I would go down to the street where the plow had left a drift. We would set to work. Sometimes we pretended we were working on the tunnel between England and France. Other times, it was the transcontinental railway. When we came together somewhere in the middle, we would hug and kiss as though we had been separated for days in celebration of the breakthrough. When we were done, we would come upstairs for hot cocoa, then sit on the couch–her feet buried under my legs to warm them up.

The Ice Hell

Now, I wheel out the snow blower I bought after Jane’s death. There is no romance or fantasy involved in the task. To be truthful, I try to avoid thinking of anything beyond guiding the machine down the driveway. I fail at doing so, miserably. There are too many memories and they flood into me like the Red Sea on the Egyptians.

Then it began to snow.

The days have been cold–far colder than normal–the last two weeks. That, too, isolates me. A group of us has a monthly lunch date. But many of the retired teachers in that group are elderly. They don’t do well with the cold. This month’s gathering was cancelled as a result. I didn’t realize how much I was looking forward to the event until I got the call it was not going to happen.

Presentation Hell

And then there was Friday. A group of student councils from area high schools was having a conference. I’d been asked to set up a table and do a series of short presentations for Walking with Jane in hopes of getting some of the schools interested in doing fundraisers for the Marathon Walk. I told Jane’s story seven times over the course of about three-and-a-half hours.

…they flood into me like the Red Sea on the Egyptians.

I taught high school for 34 years. Every class was a high wire act. As Jane said one time, even if you were teaching the same thing five times over the course of the day, the last group deserved as much energy and focus as the first one got. You had to do every show as though it were the first time you’d said it. Great stage actors, great stand-up comics have to have that same attitude.

Hell on stage

So that’s what I did Friday night with the most wrenching material any teacher, actor or comic ever presented. There’s no way to insulate oneself from that much raw emotion–that much reliving of the horror of watching the person you love most die before your eyes. It comes at a steep cost–but I pay it. NET cancer doesn’t die if people don’t tell their stories–and I want it to die more than I want to live most days.

And then there was Friday.

I understand why people don’t do what I do. I understand why people bury the dead not just physically, but also mentally and emotionally as well. I know why many men remarry within a couple of years of losing their spouse–and why many women, given the chance, do so as well. We want to find some way to mask the pain–to bury it any way that we can. Grief is Hell.

Edwards’ Hell

I used to teach Jonathan Edwards’ “Sinners in the Hands of an Angry God.” I tried to explain his vision of Hell this way: Have you ever scalded yourself with really hot–literally boiling–water? That pain you feel, right at the outset, before your brain intervenes or the nerves die–that is the beginning of Hell. Now, imagine that initial pain never lessens, never eases in any way–but goes on and on forever at that same intensity–and you never, in any way, get used to that scalding initial pain. That is the Hell of Jonathan Edwards.

Grief is Hell.

Sometimes, I think that is what real grief is like. It never truly ends. But, unlike Edwards’ Hell, it ebbs and flows. And somehow, that makes it worse. We get the illusion that we are getting better. We begin to hope that, finally, we are going to stop hurting–that our lives are going to be more than coping with the pain and that we will be able to truly live again.

Hell in the grocery store

And then we are walking through a store and see a can of a particular soup on the shelf–maybe so briefly we do not even know we have seen it–and the pain comes roaring back in, overthrowing every coping strategy and barrier we think we have in place.

And somehow, that makes it worse.

My problem is that because of what I am trying to do–put an end to this foul cancer–I purposely set off those triggers constantly. Every article I read, every piece I write, every talk I give puts me in contact with the raw emotions I felt the day Jane was diagnosed–and every day thereafter until we buried her.

Marley’s Hell

That makes me a stupid fool who insists on putting his hand in the flames every day because maybe the evidence of the last 100 times is wrong–maybe today it won’t hurt. And maybe today I will tell that story to the right person who will have the right skill set to eventually kill NET cancer. But probably not.

…and the pain comes roaring back in…

We can’t stop NET cancer from killing those 34 people who will die of it today. We can’t stop NET cancer from killing the 34 people it will kill tomorrow or the next day or the day after. Nothing we can do will bring Jane back to me–or bring anyone else’s loved ones back to them. Those are all truths, and we have to live with them.

Ending Hell

But our actions today can make a difference for others on down the line. There are thousands–maybe millions–of people out there who have NET cancer and don’t know they have it. They have husbands, wives, fathers, mothers, children, loved ones who will feel this pain someday if we do nothing.

…maybe today it won’t hurt.

So I made a choice. If increasing my pain means that somewhere someone in the future doesn’t have to feel what I feel now, then that is a trade I am willing to make–even if it means I lose a week periodically to recover. It’s the only thing that keeps me sane.

I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.
I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.