Category Archives: awareness

Changing face of NET cancer reality

awareness, NET Cancer Awareness Day/Month
We need to change the way in which doctors become aware of NET cancer and how to treat it. We should not rely on patients educating their doctors, as happens in too many cases.
We need to change the way in which doctors become aware of NET cancer and how to treat it. We should not rely on patients educating their doctors, as happens in too many cases.

Demonstrating the changing face

Much has changed in NET cancer since Jane’s death nearly seven years ago. The evidence from last weekend’s New England Carcinoid Connection Patient Conference at the Dana-Farber Cancer Institute provided solid evidence of the changing face of NET cancer treatment options. But that conference demonstrated only a fraction of everything that has changed.

…people need to hear the stories…

The NET cancer landscape in 2010 did hold glimmers of hope for the future. But the reality of the moment was pretty bleak. To begin with, research was hobbled by a lack of cash. Support groups were hard to find and patients and caregivers both too often found themselves isolated. Treatment options beyond surgery, Octreotide, Sandostatin, or flying to Europe for PRRT did not exist outside of a handful of trials. And only surgery on very early stages of the disease offered any chance of a cure. The rest slowed tumor growth and eased symptoms in some patients, but not all.

Early obstacles to changing reality

Diagnostic tools were pathetic–and difficult to convince doctors to order. When doctors ordered the tests, they often ignored or explained away the results. The myth of the NET cancer zebra dominated every effort. That belief still hamstrings too many things, even today.

Research was hobbled by a lack of cash.

The fact “carcinoid” meant “cancer-like” caused both doctors and patients to take the disease less seriously than they should have. Even doctors who understood it really was cancer told patients they had, “a good cancer too have”–that it wasn’t serious.

Changing bodies despite ‘good cancer’

Patients suffered, often in silence. They dealt with flushing, insomnia, blood clots, diarrhea–and did so with few complaints. They had the “good cancer.” They died of heart disease, dehydration and starvation–not cancer–not most of the time.

Diagnostic tools were pathetic…

That the cancer caused the valves in the right side of their heart to fail did not change what appeared on the death certificate. That the cancer caused the diarrhea that left them too weak to fight off the flu did not change what appeared on the death certificate. That the cancer caused the painful bloating that kept them from eating…

Changing the horse of a different color

Patients died. Families suffered. The zebra kept dealing out physical and emotional pain and death. Major cancer organizations did little or nothing–acting like the disease didn’t exist. Doctors explained to grieving husbands and wives how a zebra had killed their spouse. The explanation offered no real consolation–only explained why the doctors had missed it until it was too late to do more than fight holding actions against death.

Patients suffered, often in silence.

And the horse disguised as a zebra rode on, spreading death and suffering beneath a cloak of ignorance and not-so-benign neglect. More than seven years after Jane’s diagnosis, I am still angry about it–still angry because too many people don’t see the zebra for the horse that it is.

Changing numbers

In 2010, we diagnosed 10,000 new cases of NET cancer in the US. In 2012, we diagnosed 12,000 new cases. Last year, we diagnosed 21-22,000 new cases. In six years, the number of new cases diagnosed more than doubled. Doctors think most of that increase resulted from better awareness and better diagnostic tools. If they are right, 12,000 potential cases were missed in 2010; 10,000 more in 2012. One can only guess how many deaths resulted–or will result–from those missed diagnoses.

…the horse disguised as a zebra rode on…

In 2010, we knew of 105,000 people in the US who knowingly were living with the disease. By 2016, that number had swelled to 171,000. Doctors say part of that number comes from more and better treatment options. They say part of it is the increase in diagnosed patients. Both seem likely.

Changing awareness

But our diagnostic techniques are still pretty cumbersome. There’s no mammogram or colonoscopy or blood test that reliably will detect NET cancer–no reliable, routine way to screen for it. And awareness continues as a major issue. Even locally, where people have worked diligently to raise awareness, most doctors and nurses I meet have never heard of NET cancer or believe it so rare it isn’t worth testing for.

In 2016, that number had swelled to 171,000.

Barring accidental discovery, the vast majority of NET patients still do not have their disease diagnosed before it reaches the advanced stage. At that point, while we have more treatment options than we did in 2010, we still have no cure. We can sometimes slow the disease down, ease its symptoms for some patients, but we can’t yet stop it.

Changing funding

NET cancer research funding has grown enormously since 2010 when we raised and spent less than $2 million. In 2016, the US government, private foundations, and cancer centers ponied up about $15 million for the fundamental research required to create treatments and cures. Based on the number of trials going on, pharmaceutical companies are likely pumping in an equal amount to test new drugs and treatments.

…our diagnostic techniques are still pretty cumbersome.

The steady increase in NET cancer funding over the last seven years has led to substantial and significant research. In 2017 alone, more than 60 papers will have been published or accepted for publication on NET cancer. New drugs and treatments have been approved or stand on the brink of approval. New ideas for future treatment options seem to emerge every month. And researchers have concrete new ideas for diagnostic techniques not even hinted at in 2010.

Don’t declare victory

But while things are much better and more promising than they were in 2010, we are still a long way from home. The battle against NET cancer is far from won. One-third of that $15 million raised for basic research comes from a $5 million a year grant that ends in 2018.

NET cancer research funding has grown enormously…

That creates a substantial hole in funding someone–or a lot of someones– will have to fill. And even basic research and pharmaceutical funding combined does not amount to pocket change against what we spend in the US on breast cancer, prostate cancer, or lung cancer.

The awareness problem

Awareness, too, remains a problem, both among doctors and the general public. NET cancer afflicts more diagnosed people in the US than ovarian cancer, than brain cancer, than cervical cancer. Everyone has heard of those three cancers. Bring them up with a doctor or a nurse or even an ordinary layperson. It will be rare to hear them say what we hear when we say NET cancer or carcinoid cancer: “What’s that? I’ve never heard of it.” That needs to change.

The battle against NET cancer is far from won.

Go to the American Cancer Society website. Search for those four cancers. You’ll find pages on three of them. The one left out is NET cancer. That needs to change.

Changing the future

The simple truth is we don’t know how many people have NET cancer in the US and don’t know it. We don’t know how many people in Europe have NET cancer and don’t know it. We don’t know how many people have NET cancer and don’t know it. Some doctors are willing to commit to the possibility of another 250,000 undiagnosed cases in the US. But it could be more–perhaps lots more.

That needs to change.

Worldwide NET Cancer Awareness Day is Friday, the 83-month anniversary of Jane’s death. Friday, I’ll again recount the story of Jane’s life with NET cancer. It will hurt me in my soul to relive her last days. But people need to hear the stories of NET cancer patients. They need to hear the stories of their surviving caregivers. We need to help people see this disease in all its ugliness. And we need to ask for their help so that, someday soon, no one has to suffer what Jane did ever again.

(Editor’s note: We’re seeing an increasing number of posts this month on Facebook this month where people are going public with their NET cancer stories. We’ll share as many of those as we can on our Facebook page over the rest of the month. If you’re willing to share your story on walkinwithjane.org as well, we’d be delighted to spread the word that way as well. Just send your NET cancer story to walkingwithjane@gmail and we’ll share it. We will do light editing for mechanics–and we won’t publish anything that violates libel or slander laws–or the standards of good taste.)

 

Failure and success: Walking with Jane in 2011

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

Planning against failure

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

…I was not feeling very successful.

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

Unexpected sources of failure

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

…failure was not an option.

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

Failure to understand

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

At first, you feel nothing at all.

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

Accepting failure in times of grief

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

…the pain descends like a fire curtain…

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

External failure

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

I was not the teacher I wanted to be…

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

Failure on line

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

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

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

Learning from failure

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

…I made daily posts to the website.

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

Success from failure

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

I knew the internet would matter…

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

Rising from the ashes

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

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

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

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
I hobbled across the finish line at my first Jimmy Fund Marathon Walk. Failure was not an option that day. I’d vowed to finish the course if I had to crawl most of it. It was a nearer-run thing than anyone at the time knew.

Work for change requires planning

awareness, NET Cancer Awareness Day/Month

Family work

I don’t understand how families work. That may seem strange coming from the eldest of six children, but it is true, none the less. We all grew up in the same house, had the same mother and father, but we don’t talk much–or even communicate much. For the most part, we exchange cards and letters at Christmas and little else.

The goals, then, were fairly simple…

My youngest brother and I are about as close as we get. We talk on the phone a few times a year. Before Jane’s death, he would visit every few years for a few days. I was not surprised when he said he’d come East for her funeral. He liked Jane. He liked me. When another brother announced he’d come out for the funeral–stunned doesn’t begin to describe it. We’d talked maybe three times in 25 years.

Relationship work

Between them, they convinced me spending time with my family in Seattle after Jane’s death made sense. My father would spend the holidays without my mother for the first time, just as I faced them without Jane. We’d be good company for each other. And facing a week in an empty house would do neither of us any good.

I don’t understand how families work.

My father was in poor health. He was one of those people dialysis doesn’t work on. They’d done a novel procedure a few years before to jump-start one of his kidneys. That had kept him alive. He slept a lot. But we buried a lot of old hatchets as we shared our grief.

Initial NET work

His need to sleep meant I had a lot of time to think over those eight days–a lot of time to do research and write and plan. By the time I landed in Providence on New Year’s Day I’d finished the third draft of “Is it IBS? Or is it NET Cancer,” though it had a different title than it does now. I’d also immersed myself in all the research I could find on the Internet on the disease that had carried Jane off in such ugly fashion. On the plane home, I’d finished devising a plan for going after NET cancer with everything I had.

…we buried a lot of old hatchets…

I based that plan on the realities I perceived. I saw two foundations actively working on the disease. One seemed focussed on patient education, though it also had an interest in funding research. The other seemed focussed on funding research, with a side interest in patient education. Neither seemed to raise much money. Neither was reaching out very well to educate the general population. Neither had sufficient staff to do much more than it was doing. Some of that has changed in the years since. Some hasn’t. Both continue to do good work with limited resources.

Change work

Two other things struck me. The first was the absence of NET cancer–we called it carcinoid cancer then–on the American Cancer Society website. Creating awareness, research or funding would prove difficult if the biggest cancer-fighting organization on the planet did not seem to know this particular cancer existed. They still make no mention of it on their pages, despite years of personal lobbying.

…a plan for going after NET cancer with everything I had.

The second was how little we actually knew or understood at the level of basic science about NET cancer and how it worked. The day before Jane’s death, Jennifer Chan, her oncologist, had told me what they had learned from Jane had doubled knowledge of the disease. I’d found that hard to believe given how little I knew they’d learned. Now I knew Jen’s statement was probably true because we knew virtually nothing to begin with.

Previous work

None of this is intended to belittle the efforts of either of the two NET cancer foundations nor the work of the people working on the disease. Given the slender resources they had to work with, they’d done amazing things. The federal government had spent nothing on NET cancer research from 1968 to 2008. The American Cancer Society had done a little better than that, but not much better. What little money there was came largely from private sources–and there was precious little of that.

Two other things struck me.

To improve funding we had to improve public awareness of the disease first. The “Is it IBS?” pamphlet became the first volley in that effort. Millions of people learn they have IBS every year. But IBS isn’t a real diagnosis, as my own doctor once told me. It is what doctors call any gastrointestinal problem they can’t figure out the real cause of. Giving a thing a name, even if that name is meaningless, makes everyone feel better.

Diagnostic work

Unfortunately, making people feel better isn’t anything like a cure. Sometimes, it causes a patient to stop looking for the real cause of the problem. Sometimes–as it had with Jane–the consequences are deadly. I designed the pamphlet with two purposes in mind. The first was to alert IBS patients to the potential danger of ignoring their symptoms and accepting the inaccurate diagnosis. The second was to raise awareness among both doctors and the general public about the disease.

…they’d done amazing things.

I also had a sneaking suspicion the disease was being badly under-diagnosed. The first oncologist we’d seen locally told us Jane’s case was the first she’d ever seen. Within a week, she had three more cases–and I later learned of at least one more another oncologist in her clinic discovered that week. Either there was something in the local environment causing a pocket of such cases, or the disease was more common than we thought.

Donor work

My reading led me to conclude the latter was more likely the case. Anecdotally, at least, it seemed that whenever doctors saw a case of NET, they found several more cases almost immediately. Those reports covered a broad geographic area, which argued the environmental factors were fairly common or the disease was being missed until something–a patient with the disease–caused the doctors think to order the right testing.

…the consequences are deadly.

Broader awareness, I thought, would likely lead to greater funding, as well. From what I could see, most of the private funding came from large donors. Those donors generally had a stake in the research they were funding: they either had the disease or had someone close to them who did. The loss of a single large donor, given how little we were raising, would prove a significant blow to any research program–or any foundation. If breast cancer research loses a single $100,000 donor, it’s not a big deal given the total we spend on breast cancer research. If NET cancer research loses a single $100,000 donor, it can be a huge blow that potentially eliminates an entire line of research.

Goal work

Creating a large group of smaller donors might create a more reliable stream of revenue for both research and awareness once such group was constructed. I could see that when I looked at where the money was coming from for other better known rare diseases. For example, we diagnosed about a 3300 new cases of cystic fibrosis in 2010, compared to about 10,000 new cases of NET in the same year. Yet the Cystic Fibrosis Foundation raised far more money in small donations that year than was raised in total for NET cancer.

Broader awareness…would likely lead to greater funding

The goals, then, were fairly simple: raise awareness among the general public about NET cancer and raise more money for research. It seemed fairly simple at 40,000 feet on the way home from Seattle. The reality on the ground would prove much more difficult.

The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor's office.
The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor’s office.

2010: NET cancer’s watershed moment

awareness, Jane, NET Cancer Awareness Day/Month

Standing on the watershed

Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and past president of NANETS, calls 2010 a watershed year in the treatment of NET cancer. He cites FDA approval of the first new drugs to treat pancreatic NETs in more than a decade and a handful of papers on the basic science.

…2010 was an improvement over what had gone before…

It was a watershed for my wife and me in a very different way: we learned in August that she had NET cancer. We learned her primary care physician had never heard of it before. We also learned her first oncologist had never seen a case of it before. We met Jennifer Chan, who would become my wife’s NET cancer specialist and become a good friend to both of us.

Our shared watershed

Jane decreed she would become the first person to beat advanced NET cancer. She told her doctors to learn all they could from her. She brought a science teacher’s mind and observational powers to the NET cancer research table. And on December 10, 2010, 23 days after her 56th birthday, she would beat her advanced NET cancer the only way anyone ever had–by dying and taking it with her.

It was a watershed for my wife and me…

She also left a series of images indelibly printed on my mind: Jane sitting in the bathroom injecting herself in the belly twice–and then three times–a day with octreotide; Jane struggling up the stairs at night after a long day on the road and a long day at Dana-Farber; Jane unconscious in a hospital bed; Jane letting a final breath escape her lips–a breath I caught on my own.

My personal watershed

That night, I went home to an empty house and an empty bed. The dread quality of the silence I cannot describe–only that I knew instantly I needed to find a way for others never to hear that particular silence. Had I not already made promises to Jane, made promises to her doctors, that silence would have put me on my current course all by itself.

Jane sitting in the bathroom injecting herself…

I knew Jane had died because of ignorance. Her local doctors did not know NET cancer existed–and so had no way to test for it. We had no reliable imaging system that could see the tumors, no fully reliable blood or urine tests. Her doctors at Dana-Farber–NET cancer doctors everywhere–did not know enough about how the disease worked to have a cure–or even a treatment that worked for the majority of patients to alleviate symptoms.

Sources of ignorance

I knew that ignorance stemmed from two sources. I knew the disease was considered rare–and largely ignored except as a curiosity in medical schools and in-service training. There was little awareness of NET cancer in the general medical community–and even less awareness among the general public. It was thought so rare that in 1968 the US Congress had removed all funding for research into it and no one at the federal level had given it another thought until 40 years later.

I knew Jane had died because of ignorance.

That lack of awareness meant 40 years of virtually no research into the disease because of lack of money. People don’t donate money to diseases they’ve never heard of. Governments don’t dedicate money to diseases no one cares about beyond a relative handful of patients and their families. Neither does the cancer research establishment. No money means no research. No research means no treatments. No treatments means people die at the end of long periods of largely silent suffering.

Spend nothing, get nothing

We spent less than $2 million on Jane’s treatment and hospitalization in the last four months of her life. We spent even less on basic research that year. We spent less than a rounding error of a rounding error on what we spent on breast cancer on NET cancer research that year.

…40 years of virtually no research into the disease…

In 2010, we diagnosed about 10,000 cases of NET cancer in the US. About 105,000 were living with diagnosed disease. In the US, we had octreotide and it’s longer lasting form, Sandostatin for use in most forms of NET cancer. We had sunitinib and everolimus for pancreatic NETs.

Staring into darkness

None of those drugs offered a cure for the disease, just a hope for eased symptoms and slower tumor growth. If you were wealthy, or could otherwise scrape together sufficient money, you could fly to Europe for a radiation treatment called PRRT. It wasn’t a cure, either, but it could buy you some time and a better quality of life. If the drugs didn’t work for you, you could hope it would make a difference.

In 2010, we diagnosed about 10,000 cases…

For those who had been fighting NET cancer for a long time, 2010 was an improvement over what had gone before–but it was still a very dark time. For those of us just beginning to deal with the disease, darkness did not begin to describe what we were looking at.

Every personal watershed moment carries a personal cost. Jane's death changed the direction of my life. Some people say it changed theirs as well.
Every personal watershed moment carries a personal cost. Jane’s death changed the direction of my life. Some people say it changed theirs as well.

Awareness Month for NET: 30 posts in 30 days

awareness, Jane, NET Cancer Awareness Day/Month

Awareness: cost of being human in a world of cancer

My normal post rate is three times a week. That schedule has not happened for more than a year. When one of your best friends is dying, that happens. When you are recovering from surgery, that happens. When both happen at the same time, everything goes sideways. Awareness takes a back seat to those other needs.

If there are specific things you’d like to know about…

As I wrote in my last post, that’s pretty much the story off my life for the last 18 months. One of my closest friends learned in April of 2016 he had glioblastoma. He died July 1 of this year. In June, I learned I needed Mohs surgery for skin cancer on my face. I had that surgery in early August and it proved more extensive than any of us expected.

Recovery from loss, recovery from surgery

I am still recovering from that surgery, still recovering from the loss of my friend, still trying to make sense out of too many things, and still trying to aid the fight against NET cancer wherever and whenever I can. I’ve done craft fairs every weekend for the last month, helped organize a presentation the first night of Dana-Farber’s Visiting Committee meetings, and worked on a dinner that raised over $5000 for NET cancer research.

…everything goes sideways.

But neither my mind nor my body has fully recovered from the blows of the last several months. Losing my friend John brought back memories of Jane’s last days so starkly and brutally I’ve had to seek professional help. Recovering from the surgery requires nine–and sometimes 10–hours of sleep every night–sleep haunted by dreams of things that might have been.

The cruelest months

November and December are the two most difficult months of my year. Last night, Halloween, was one of our two favorite holidays. November 17 is Jane’s birthday. November 15 was the date of her heart surgery, November 13 the night we last shared a bed. November 14 I had to help her off the toilet for the first time. The night of November 17 Jane had her first carcinoid crisis–the day she was supposed to go to the step-down unit. She had two more of those–both of which put her in a coma–before the end of the month.

I am still recovering…

December started with bright hopes that disintegrated the morning of December 9. The next night, at 7:59, Jane died. Her wake was December 16, her funeral two days later. Truth be told, I haven’t been right since–I just cope with the tears better–put on a better face to the world. I’ve done grief groups and had some one-on-one therapy, to little real effect.

Awareness: This is Hell

People ask why, seven years later, I am still active in the fight against NET cancer, why I still visit with patients, follow the research, chair committees, raise money and bike and run and walk and do all the things I can think of to support research and raise awareness. The answer is simple: I know what loss feels like. It is a thing I would not wish on the darkest of the dark. It is Hell–and I am never out of it.

…I haven’t been right since…

Officially, NET Cancer Awareness Day is November 10. For me–and for the Commonwealth of Massachusetts, thanks to the efforts of a now deceased NET cancer friend–the entire month of November is NET Cancer Awareness Month. There is too much to say in a single post–too much people need to know about this disease, to know about the strides being made, to know about the resources that are out there, to know about what may lie ahead.

Awareness: A month of daily posts

So from now to the end of November, my plan is to create a new post every day. Tomorrow, we’ll start with a little history of the last seven years and how much has changed in that time. In the days ahead, we’ll look at resources for patients, caregivers, and for those in grief; we’ll look at what the latest research says about treatments in the pipeline, trials that are going on now–and trials coming in the future.

It is Hell–and I am never out of it.

If there are specific things you’d like to know about, you can respond here or drop me a line at walkingwithjane@gmail.com. I’ll try to honor any requests that come in as quickly as I can. But remember, I’m not a doctor and can’t give anything that looks like medical advice. For that, you need to talk to your doctor–a person who needs to be a NET specialist if you are going to get the best advice you can get. We’ll talk about that in the coming days as well.

The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following. Awareness of anything other than self is difficult under those circumstances.
The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following. Awareness of anything other than self is difficult under those circumstances.

Remember the day where the pain resides

awareness, Caregiving, Death, Grief, Jane

I remember to forget forgetting

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

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

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

Remember to forgive

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

I avoid going to bed.

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

I remember confusion

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

…I did all I could have done.

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

I remember why

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

I couldn’t get my mind to focus…

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

Cold memory

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

The cemetery was empty…

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

Remember the others

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

The clouds scudded across the sky.

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

The days that hurt

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

She died in his arms…

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

Remember the now

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

You learn to cope.

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

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

Mission remains: cure NET cancer now

awareness, Fundraising, Goals

Original mission

I had a very specific mission and role in mind for the Walking with Jane when we started. No one, beyond those afflicted with the disease, seemed to know the disease existed. Basic research lagged for lack of money. Too many patients were stuck with doctors supervising their care who knew less than the patients about the cancer they faced.

Lives depend on it.

My plans to quickly create a national organization on the scale of the Cystic Fibrosis Foundation or MS Foundation were overly ambitious. I quickly discovered that fundraising, raising awareness, writing pamphlets, keeping up with the latest research and maintaining a comprehensive website each required my full-time attention. I could recruit people to do pieces of those jobs periodically, but the brunt of the effort fell on me.

Evolving the mission

And I was mired in my own grief and the effort required to maintain the place I lived. I learn slowly, but I eventually realized my initial vision could not be reached in the timeframe I imagined. Instead, I envisioned  a loose coalition of regional foundations each aimed at developing a relationship with specific NET cancer centers in order to support both research and awareness.

Too many patients were stuck…

I don’t know if that idea is any more workable than my original thought. Increasingly, however, I’ve come to see Walking with Jane as a pilot project to demonstrate how such a partnership with a regional cancer center might work. Over the last 15 months, I’ve begun to see the first fruits of that vision. I detailed the major successes of that partnership in yesterday’s post.

Mission goals for 2017

The purpose of today’s post is to lay out our goals for Walking with Jane and that partnership in the year ahead, and sketch out a rough plan for what we will do to make those goals a reality. Those goals lie in three specific areas: fundraising, awareness, and evangelism.

…I’ve begun to see the first fruits of that vision.

Evangelism, for lack of a better word, is the toughest unaddressed nut we, as a community, face. We’ve made significant strides since 2010 in making medical professionals more aware of NET cancer. New patients have a range of real and online support services available that were hard to find even where they existed six years ago. We do a decent job of helping patients find those resources that exist. And fundraising in the US has improved markedly.

The unspoken mission

But outside of medical schools and NET cancer patients and their caregivers, NET cancer remains largely unknown. This fall, I did five craft fairs, all in the same local area. Despite almost annual local newspaper coverage, I encountered no one who had heard about NET cancer from anyone other than me. As compelling as people tell me Jane’s story is, even locally, we haven’t gained much traction in the world outside the NET cancer community.

…fundraising, awareness, and evangelism.

Honestly, I’m not sure how to raise general awareness of NET cancer in the mainstream community. I’ve written scripts for PSAs–even produced two or three over the last few years–to no visible effect. I’ll write some scripts for radio and try to get them aired on college radio stations in the University of Massachusetts system this year, hoping they get picked up elsewhere as a result. It’s slender reed to hang much hope on, but it’s the reed we’ve got.

Finding other reeds

As part of the 3-in-3 Campaign, we’ve also put together a speaking program aimed at the general public that we originally designed for potential corporate sponsors. I plan to put out a letter this month to civic groups around New England to prospect for groups willing to listen to that message. I think it would travel well, if you know of a group that might be interested.

…I’m not sure how to raise general awareness…

I’m also working on grant applications to get the latest editions of two pamphlets I’ve written with our friends at the Dana-Farber Cancer Institute into the offices and hands of every doctor in New England, for a start. If I can find the funding, we’ll reach out beyond that. If we could get those pamphlets into a position where even non-NET patients could see them, we might increase name-recognition, which would help with the evangelism piece, as well.

The awareness mission

Equally important is the need to continue to raise awareness about NET cancer and the latest treatments and research among doctors and patients. The distribution of those pamphlets really has as its central purpose that kind of awareness. But there are other things we can do to improve that side of things, as well.

I’m also working on grant applications…

One of my real failures the last couple of years has been maintaining the non-blog portions of this website. Too much of what is on the other pages is dated. Over the next three months, I’m going to go through the site and do some extensive renovations to the information and links that are here. That will include linking some of the most useful blog posts here and elsewhere that underline patients’ real experiences with the increasing number of treatments and trials underway.

Repair and revision mission

Some of the most referenced blog posts are not things I wrote. Virtually every day, for example, someone accesses the piece written by a patient about their personal experience with chemo-embolization for liver mets. It is among the first things people see when they google that procedure.

But there are other things we can do…

Frankly, we need more posts like that. Patients and caregivers both are thirsty for that kind of information. So here’s my invitation: if you have an experience with a specific treatment or trial, write it up and send it to me at walkingwithjane@gmail.com. I’ll work with you to make it the best it can be. Then we’ll post it here on this blog and create a link for it from a page on treatments people have experienced.

Changing reality

If you have already written such a post somewhere else, send me a link and I’ll look at it with an eye to including it. I’m particularly interested in experiences with PRRT in the US and telotristat globally. Pieces on Afinitor would also be useful, as would experiences with various types of surgery. I also plan to expand the links we already provide to other blogs

Patients and caregivers both are thirsty…

And we all need to tell our stories to the broader community whenever we get the opportunity. That can take the form of talking to your local newspaper or TV station, talking to church and civic groups, or just sharing our stories with the people in the neighborhood. Nothing will change without each of us being the squeaky wheel.

The funding mission

Both evangelism and raising awareness will help with the third piece of the NET cancer cure puzzle: fundraising. People don’t give money to causes they’ve never heard of. And research costs oodles of money. One small lab costs close to $3 million a year to run. Drug companies will pay for drug trials, once they are convinced the drug will work. Governments will pay for research when they are sure of the outcome. But basic research funding comes from individuals–and virtually no one else.

…we all need to tell our stories…

Over the last few years, Dana-Farber has worked on unraveling the NET cancer genome. They collected over 1000 specimens from NET cancer patients and analyzed the DNA of each. Neither government nor pharma put up the money for that effort. That came from people like me and you. Our Jimmy Fund Walk teams raised a piece of that money, $100, $50, $25, even $10 and $5 at a time.

Raising the stakes

Last year, the 3-in-3 Campaign raised about $1 million for NET cancer research. Next year, we need to raise another $1.5 million to help fund the new lab that $1 million inspired. Getting there won’t be easy–but nothing worth doing ever is.

And research costs oodles of money.

The 2017 Jimmy Fund Walk registration begins January 4. I’ll spend that January 4 setting up the NETwalkers Alliance team page and the #cureNETcancernow group’s page, as well as my personal page. I’ll set my personal goal for the Walk at $15,000 this year. Our team goal we’ll set at $100,000. Our group goal will be $250,000. I’m hoping to double the $160,000 we raised last year, but will wait on moving that number up until I have a clearer picture about where things are.

Extending my personal mission

My personal Walk goal is a bit lower than it usually is. That’s because I’ll create a NETriders Alliance team for the PMC Challenge this year. My hope is to gather together people who ride bikes rather than walk, to raise money that way for NET cancer research. I’ve never been one to lead from the sidelines, so… And just like in the Walk, every penny I raise will go to NET cancer research. Last year, people riding for NET cancer to support the research done by the Program in Neuroendocrine and Carcinoid Tumors raised about $50,000 total. My hope is we will double that amount this year.

Getting there won’t be easy…

In addition to my annual pledge, the Walking with Jane Fund for Neuroendocrine Cancer raised another $1700 last year. I’ll work to publicize that fund more widely over the next year, in hopes of doubling that amount in 2017.

Expanding the mission

And I’ll continue to work with groups of patients and caregivers who are also actively raising money for NET cancer research. I’ll expand the number of craft fairs I present at and expand the range of hand-crafted items we offer, with every penny of every purchase going to NET cancer research. I’ll write fundraising letters and share them with anyone who wants to use them. I’ll help organize and/or attend and/or speak at events to raise money and awareness for NET cancer research anywhere within driving distance–and for the right return on investment I’ll go further.

My hope is we will double that amount this year.

In 2010, we raised under $2 million to support NET cancer research in the entire US. In 2017, we need to raise that much in New England alone. We need to see that kind of continued improvement in every region in the country–and at the national level as well.

Slaying the dragon

I’ll do everything I can in the year ahead to make all these things happen. For six years, my mission has been the defeat of this disease. But I am only one person. We need every person who has ever suffered the loss I have, to make it their mission. We need every patient with a story to tell to do likewise. We need every caregiver to do likewise. We need to inspire every doctor, nurse and researcher to do likewise.

…I’ll go further.

Together, we can slay this dragon. Lives depend on it.

We could not do any part of our core mission without the volunteers who run our fundraisers, stuff envelopes and manufacture hope. We gather that core group together every summer to celebrate our successes.
We could not do any part of our core mission without the volunteers who run our fundraisers, stuff envelopes and manufacture hope. We gather that core group together every summer to celebrate our successes.

End of year report for 2016 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

A year of ups and downs

2016 was a busy year, both for Walking with Jane and for me personally. As an organization, we made significant progress on a number of fronts, but lagged behind where I would like us to be in other areas. As an individual, I continued to struggle with my personal demons. Again, there were moments of significant progress—and moments of stagnation and regression. Grief continues to hammer at my heart, but the blows are softer and less frequent.

…a future with less hurt and more hope in it

As many of you know, Dana-Farber asked me to get involved with a fundraising campaign aimed at NET cancer in late August of 2015. We launched that campaign December 9 of last year with a presentation in Boston. I now officially chair that campaign–3-in-3: The Campaign to Cure NET Cancer. Our goal is to raise $3 million over three years for NET cancer research. As this year drew to a close, we were closing in on our first $1 million. That work has taken me to Boston on a regular basis to meet with doctors and researchers and professional fundraisers to help plan and execute that effort. It’s been a positive learning experience.

NETwalkers and #cureNETcancernow

Part of that effort involved, as always, our NETwalkers Alliance Jimmy Fund Walk team. For the first time since I took over as captain, I was not the top fundraiser on the team. That honor falls this year to Jenaleigh Landers, who has been there from the start. Her golf tournament in memory of her father has always put her in the second spot in recent years. The tournament was even more successful this year. Total, our relatively small team raised just over $39,200.

…closing in on our first $1 million.

In addition, we helped launch the first disease-specific Walk group, #cureNETcancernow. The group had four teams and raised just short of $160,000 for NET cancer research. We had nearly 200 NET cancer walkers join in that effort. Only the Dana-Farber employees group had more team members or raised more money—and most of the other groups were run by major companies like State Street Bank.

Ups and downs of a start-up effort

The result of those efforts—and those of a number of people riding for NET cancer research in the Pan-Mass Challenge–is Dana-Farber adding a new gastrointestinal research lab whose primary focus is NET cancer. We were also listed among the funders for a paper on NET cancer co-authored by Dr. Jennifer Chan, who was Jane’s oncologist at Dana-Farber.

…we helped launch the first disease-specific Walk group…

But tasks connected to the 3-in-3 Campaign forced me to cut back on some of the other things Walking with Jane has done over the last five years. Normally, I do two mailings a year for that, neither of which happened. I went three months without posting anything new on our website. Other things slid as well. Start-ups always take more energy than I anticipate, but I hope to get back to a more regular schedule on these other things soon.

Personal successes and losses

Not all of that had to do with the Dana-Farber campaign, though. On the good side, I spent six weeks again this summer teaching journalism fundamentals to high school students in a summer program at BU. The commute is a killer, but working with young people reminds me there is more to life than cancer.

Start-ups always take more energy than I anticipate…

And I needed that reminder especially this year. Two good friends were diagnosed with cancer this spring. Both are in treatment and doing well, by all accounts. But I also lost two NET cancer patients over the summer I had become close to. Their deaths underlined again for me why what I am doing matters—and why I need to keep doing it.

Keeping myself sane

I continued my ongoing landscaping and other house projects. The yard still looks like it’s under construction–because it is–but I finished the patio project, the back half of Jane’s memorial garden and the garden, back, front, and side pathways. I also got a good start on installing a small orchard and another pair of garden beds, while repairing the sinkholes that developed just after Jane died. I’m doing it all by hand, one shovelful at a time, which keeps me in shape and gives me a break from all the mental exercise my other projects force on me.

…why I need to keep doing it.

Indoors, I redid the dining room and bedroom and have a clear vision of what the finished study will look like. I took Jane’s chair in last week to be re-upholstered for that room. Two-thirds of the basement is cleared out and, in the next month or so, I hope to have the electrician in to do some wiring down there.

A year of rediscovery

I’ve also done a ton of reading, some of it related to cancer, but much more of it just for fun. I’ve rediscovered photography, done some writing, done some walking, lost 30 pounds, put 15 back on—bloody post-Marathon issues continue—and tried to build a life that makes sense again. Life feels both more and less empty.

…one shovelful at a time…

The sixth anniversary of Jane’s death was December 10—and it was awful. But I put up the tree for the seventh time without her and I felt good afterward. Somehow something lifted off of me and I felt like a human being again. Maybe Year 7 will finally see me healed enough to think about a future with less hurt and more hope in it.

I hope this finds you and yours in good health and spirits and that the year ahead will prosper you in ways great and small—and in ways you don’t see coming. Go have an adventure. I hope to have several.

Pax et lux,

Harry

Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.
Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.

Nurture heart, nurture patients, nurture science

awareness, Goals, Grief

A bit of ivy

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

Our job is to nurture…

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

A bit of heart

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

It grew with painful slowness…

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

A bit of healing

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

I wish I could say I were as fully healed.

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

Critical mass

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

… I may survive what has happened.

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

Nurturing the future

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

…we know much more than we did…

The day will come. May it come soon.

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

Day to reflect on more than death

awareness, Caregiving, Death, Grief

A lost day

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

…how we can make a greater difference…

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

Roads to recovery

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

…when only one partner remains.

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

Enter Scrooge

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

I know what a cure would mean.

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

Actions matter

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

… I am haunted by Scrooge’s ghosts…

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

Thinking about futures

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

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

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

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