Category Archives: NET Cancer Awareness Day/Month

Chemistry between patient and doctor matters

awareness, Caregiving, Jane, NET Cancer Awareness Day/Month
Jane taught chemistry, physics and biology at the end off her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.
Jane taught chemistry, physics and biology at the end of her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.

Matters of taste

My friend John and I had very different taste in doctors. Two years before I met my dermatologist, John had an appointment with him. After the appointment, John called him a cold fish with no personality. He knew his stuff, he said, but there was no chemistry between them.

It took Jane three tries…

My primary care doctor sent me to see the same dermatologist for a spot on my face. I went to that appointment with an open mind–knowing John and I were different people. The doctor and I hit it off immediately. We’d both been serious runners in our youth and still ran recreationally. Our appointments always end with us catching up a little.

Individual judgements

Jane went into the hospital for a blood clot that may have been related to her cancer the same day we learned about her NET cancer. An oncologist met with us while she was there. When he left, Jane’s reaction was, “Not him.” The man was as knowledgeable about NET as most oncologists were at the time–which is to say he didn’t know very much beyond what he’d read. But Jane found his tone offensive and his manner abrasive. I’ve since known other patients who liked him just fine.

The doctor and I hit it off immediately.

A week later, we met with another oncologist from the same office. She, too, had very little knowledge of NET cancer beyond what she’d read. But she and Jane hit it off well. She referred us to Dana-Farber for a consult that turned into Jane being treated there. But if that hadn’t happened, Jane really liked that second local doctor a great deal. The chemistry worked.

Powerful chemistry

Matt Kulke, the head of the NET cancer program at DFCI, was out of the country at the time. We went to see Jen Chan instead. I watched two long-lost sisters meeting for the first time when Jen walked through the door. That encounter was a confluence of chemistry, biology, and physics in a single second.

The chemistry worked.

I’ve heard wonderful things about Matt as a doctor and a person from his patients over the years. I’ve worked with him on committees, gone on walks with him, had dinner with him. I’d take him as my doctor in a heartbeat–as I would Jen. But given the instantaneous chemistry between them, for Jane, Jen was the better choice.

Why the relationship matters

Especially with a disease like NET cancer, having a knowledgeable doctor is not really enough. The personal relationship matters. Patients need a doctor they are comfortable talking with about diarrhea episodes and other uncomfortably intimate matters. Sometimes, the only way a doctor can know what is really going on with a patient comes out of those kinds of conversations. It informs treatment just as much as knowledge of the treatments does.

…a confluence of chemistry, biology, and physics in a single second.

But the chemistry that exists between any particular doctor and any particular patient does not provide an indicator  of the chemistry between that doctor and any other patient. Nor does it help describe the chemistry between that patient and some other doctor. Each case is different. The doctor I like, you may hate; and the doctor I can’t stand, you may love.

Each relationship is different

I’ve met a significant number of NET cancer specialists over the last seven years. Some, I’ve immediately hit it off with. Others, not so much. But they’ve all had two things in common. First, they all were really knowledgeable about NET cancer, though all have more expertise in some forms of the disease than they do in others.  Second, they all have patients who love and respect them who say they have the best doctor they could ask for.

The personal relationship matters.

And they do. Knowledge matters. So does being comfortable with your doctor. But just because a particular doctor is right for you, doesn’t mean that doctor is perfect for everyone. And just because you don’t get along well with a particular doctor, doesn’t mean they are wrong for everyone else.

Are you comfortable?

It took me four tries to find the right cardiologist for me. I like him so much, I made him my primary care doctor, as well. Those other doctors were just as knowledgeable, but I never felt quite comfortable talking to them. I have friends who like them fine. It took Jane three tries to find the perfect oncologist for her. The others were fine doctors, just not the right people for Jane.

…they have the best doctor they could ask for.

Like the elements in the Periodic Table, we are all different–and we all react to each other in very different ways. We all need to keep that in mind while we search for the right doctor for us–as well as after we’ve found them.

Specialist shortage issue for NET patients

awareness, Goals, NET Cancer Awareness Day/Month
Becoming a NET cancer specialist who meets the Carcinoid Cancer Foundation's criteria is tough. Kim Perez works with NET cancer patients at DFCI. She isn't listed at CCF, yet. But she will be.
Becoming a NET cancer specialist who meets the Carcinoid Cancer Foundation’s criteria is tough. Kim Perez works with NET cancer patients at DFCI. She isn’t listed at CCF, yet. We need more young doctors like her to choose NET.

See a specialist

Veteran NET cancer patients and advocates in support groups constantly tell new NET cancer patients they need to see a NET cancer specialist. We also frequently tell them going to an NCI cancer center with a formal NET cancer program that offers a team approach should be a priority as well. Advanced NET cancer treatments can involve not only an oncologist, but a surgeon, a liver specialist, and a radiologist, as well as other doctors in a variety of specialties.

…there is a very real elephant in the room…

Finding a NET cancer specialist requires one click on the computer. The Carcinoid Cancer Foundation (CCF)  maintains a list of recognized specialists on its site. That list also includes non-specialists with a strong interest in NET cancer who work well with specialists, as well as cancer centers that meet their very strong criteria.

We have few specialists

That’s the good news. The bad news: the list of doctors, including the non-specialists in the US, has only about 100 names on it. Fifty-eight of those people meet the criteria CCF sets for specialists. They list only six NCI cancer centers with a NET cancer specialty.

…see a NET cancer specialist.

The criteria for being listed as a specialist are pretty stiff: 10-20+ years treating NET cancer patients; 10 NET cancer papers, authored or co-authored; a minimum of 100 patients treated. Some very good NET cancer doctors may not have the years or the papers or the patients yet to make the list of specialists. Some may even be among the 40+ other US doctors on the list with some NET cancer interest or experience. The list also includes overseas doctors by country.

What the numbers mean

But even if we include everyone on the US list as a specialist, those doctors would have to handle a caseload of more than 1700 patients a year. Cut the number back to the list of CCF recognized specialists and that number jumps to over 2900 patients for each doctor.

That’s the good news.

Simple truth: We don’t have anywhere near enough NET cancer doctors for the number of patients we have. In the best, insane, semi-workable scenario I could come up with–worst case, for doctors–a NET cancer doctor could handle a caseload of about 600. This assumes seeing patients five days a week, and an average of one visit per patient per month. It includes no time for research or detailed review of patient records. Nor does it include time to review research done by others or visits to patients in hospitals. I didn’t give them vacation time either. Even so two-thirds of patients would not get to see a NET specialist regularly–or at all.

Research reality

Reality is significantly different. Recommendations based on actual research argue for a patient load for oncologists of 250-350 patients per doctor per year. Given the nature of NET cancer, I’d argue the 250 is likely more reasonable than 350.

…over 2900 patients for each doctor.

Frankly then, we need at least six times as many NET cancer specialists as we currently have just to service current patient levels. Given the rapid growth of NET cancer cases since 2010, that situation will only likely get worse. I don’t know where to begin to look for the doctors we need to fill the current gap. I have even less idea how we fill the potential gap if doctors are right about the possibility of 250,000 undiagnosed cases currently in the US. I don’t want to think about my own private worst case scenario.

NET cancer centers?

The situation for NET cancer centers may be even worse. If every NET cancer patient went to one of those six listed NCI cancer centers to seek treatment, they’d face a sea of more than 28,000 individual patients. Each center would require 100 or more NET cancer specialists or specialists-in-training, depending on what we decide is a reasonable caseload. And never mind the number of other specialists we’d need to support a team approach.

…we need at least six times as many NET cancer specialists…

The number of specialists required to staff a NET cancer department for one of those six centers would require nearly four times the total number of doctors in the Dana-Farber Cancer Institute’s entire gastrointestinal cancer department. I know there are other NCI centers with NET cancer programs that are not included on the CCF list. But even doubling their list–or tripling it–still makes for an unmanageable situation.

Problems for patients

Nor do I want to think about the travel hardships many patients would–and do–face to get there. Commutes of 800 miles or more are not uncommon among patients seeking cancer centers now. When urgent diarrhea comes in the middle of such a trip… Jane and I only traveled the 60 miles to Boston and back and frequently had this issue.

…a sea of more than 28,000 individual patients.

Patients need less distance to travel. We need to create many more NET cancer programs at NCI cancer centers within convenient driving distance for patients. But we don’t have the specialists to do that any more than we have the numbers to fully staff the number we have.

What do we do with this elephant?

Many of us are rightly focused on doing the basic scientific research and finding and testing treatments. Others, also rightly, concentrate their efforts on educating doctors, patients and caregivers. Still others work diligently to find the money to fund those things, also a real necessity.

Patients need less distance to travel.

But there is a very real elephant in the room we need to consider as well. Knowledgeable NET cancer doctors, nurses and medical centers are in critically short supply. Given the rapid growth in the patient population, it is a problem we must address–and quickly.

 

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.

Challenge ends–but the work continues

awareness, Goals, NET Cancer Awareness Day/Month

Where we stand

This post finishes the 30 Day Walking with Jane NET Cancer Awareness Month Challenge. I hope you’ve found things in it of use. I’ve tried to deal with subjects that matter to both patients and caregivers. I’ve tried to create hope in what is too often a bleak landscape. But I’ve tried to be realistic, as well.

It was easier when I was numb…

The truth remains, nearly six years after Jane’s death, that we still have no cure for NET cancer. We’ve made progress at improving patients’ quality of life. We’ve given them longer and better lives. We’ve begun to understand some of the underlying mysteries that make the disease so difficult to diagnose and so difficult to treat. And we have some newer and better ideas about how to proceed.

Knowledge challenge

We need more researchers and more research. That means we need more resources–a lot more. But things have improved on that front. We have nearly eight times as much money to work with as we had six years ago. That still doesn’t amount to a rounding error on what we spend on other cancers. But it is a bigger rounding error.

…I’ve tried to be realistic…

Six years ago, Jane’s 26 days in the hospital doubled our knowledge of the disease. And what we spent on her care over the last three months of her life nearly equalled the total we spent on research in the US–from all sources–that year. The post surgery treatment plan we talked about then included things no NET cancer patient had ever tried. Today, liver embolization is often something NET patients are offered–as are many of the other things we talked about as possibilities.

Diagnosis and treatment challenge

Patients in the US had octreotide–and little else, six years ago. Afinitor (Everolimus) had just been approved, but only for patients with pancreatic NET. Patients who could find the money could fly to Europe for PRRT. Patients who couldn’t went without–and sometimes died as a result. Today, there is Lanreotide, as well as Afinitor. The results of the PRRT trial sit on a desk at the FDA awaiting approval, as do the results of the Telotristat trial.

We need more researchers and more research.

Six years ago, NET cancer was all but invisible on every scanning device we had. Then researchers developed the Octreoscan, which lit the tumors up like a Christmas tree. Now, we have begun to see implementation of the even better Gallium-68 scan that shows the tumors in much higher definition. But we still lack a simple, affordable, and widely available blood test as a diagnostic tool. Doctor don’t like ordering expensive tests for a disease too many have still never heard of.

Awareness challenge

Awareness, however, remains a problem. Medical schools do a better job of raising NET cancer as a possibility than they did ten years ago. But we do too little in-service trying and consciousness raising with general practitioners. And too many doctors who have heard of it brush off testing for it because they believe it is too rare to consider.

Patients who couldn’t went without…

Awareness among the general public is even worse. If I say I am doing the MS or Cystic Fibrosis Walks, most people know what I am talking about. I’m still waiting for the moment a stranger tells me they’ve heard of NET cancer when I tell them what I do. Yet the number of cases of CF and MS diagnosed each yer combined is less than the number of cases of NET cancer diagnosed.

The challenge of patient knowledge and support

Patients have far more access to information than they did six years ago. We have more patient conferences. We have more support groups–including groups that exist online and on Facebook. And we have books and articles written specifically for patients. People used to say that anyone who’d been a NET cancer patient or caregiver for three months had the equivalent of a Ph.d in the subject.

Awareness, however, remains a problem.

I suspect that level of knowledge takes a bit longer to get than it once did. We know more now than we did then. But this often means patients still know more than their primary care doctors do about NET. Sometimes, especially if they are not seeing a NET cancer specialist, they know more than the oncologist they initially see who ends up running their treatment. Too many patients and caregivers still have to be strong advocates for themselves if they want to get the best treatment.

Caregiver challenge

And then, there’s the challenge we too often forget about or brush over. Caregivers are in a tough spot, regardless of the illness their other half faces. Their difficulties multiply when they face a disease as debilitating as NET cancer. At times, I felt trapped and overmatched by the enormity of Jane’s last days. Some days, I still do. Over the last several days of this challenge, I’ve written a series of posts on how to be a better caregiver.

Patients have far more access to information…

This morning, I got a note from another caregiver: “How does the caregiver overcome self-recrimination?” he began. (You can read the rest of his note here, at the end of yesterday’s post.) I intend to write a post on dealing with the aftermath of losing a loved one you’ve been the caregiver for later in December. But his plaintive response underlines what a poor job we do of helping lay caregivers deal with what they encounter. We desperately need more dedicated resources for people in that role, no matter what disease they face. Letting us lurk in patient support groups is not enough.

Personal challenge

For a bit more than six years, I’ve knowingly dealt with NET cancer virtually every day. I’ve done that while trying to deal with all the other aspects of my wife’s death. It was easier when I was numb most of the time–which was the case for much of the first five years after her death. Sometime in late 2015 or early 2016, I started to hurt. It’s been awful. I have days when getting out of bed is a struggle. I make plans and lists but have entire days that vanish in aimless wandering. So I’m taking a break–intentionally this time. I can’t say how long, because I don’t know. A good chunk of December, I suspect, at a minimum.

Caregivers are in a tough spot…

I’m going to sit and cry for a while. And I’m going to think about the other promises I made Jane beyond killing NET cancer and putting up the tree. Those, I’ve worked at keeping. But I also promised her I wouldn’t stop living; that I’d let love come into my life again–and give that opportunities to happen. I promised her I wouldn’t spend the rest of my life as a hermit in a cave. I haven’t done very well at any of that. It’s time I did better at honoring those promises.

 

Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon--a promise I made Jane about how i would continue to honor the holidays we both loved.
Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon–a promise I made Jane about how i would continue to honor the holidays we both loved.

Advice from one caregiver to another–Part 1

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

(Editor’s Note: This is the first of a series of posts on practical advice for caregivers. It specifically applies to spouses dealing with NET cancer, but should be broadly applicable to anyone facing a longterm illness or injury. Keep in mind, however, that I am not a doctor, psychologist, or therapist of any kind. I’m talking here from my personal experience, nothing more. Don’t take this as gospel as your situation and what you experience may prove very different. I make no guaranties about the soundness of what I say here in your circumstances.) 

Some background

I come from a long line of caregivers. My grandmother often was not home when we came to visit. If an elderly neighbor needed longterm help, she took on the task, often moving in with them for weeks at a time. I never got to watch her with those people–I just knew that she did. But I often turn to that memory when I need advice.

People don’t know what we need…

And I am the oldest of six children. I’ve changed the diapers on all but two of them and taken responsibility for the actions of all of them at one time or another. So when Jane got sick, I thought I knew what to do. All of that helped, but it wasn’t enough.

Theory vs. practice

People have written books on caregiving. But frequently, those books focus on caring for aging parents, not a loved one as close as a spouse or a child. In addition, the writers sometimes work from theory rather than experience. They do the best they can with the knowledge they have, but sometimes the advice is too abstract to be useful.

…I thought I knew what to do.

And people dealing with critical illnesses, like NET cancer, often don’t have time to read and digest an entire book. The immediate needs of the patient constantly come first–leaving little time for much else. My purpose in this short series of articles is to give practical advice from my personal experience with my wife’s NET cancer.

Advice for the beginning

“He says it’s probably cancer,” my wife said as she got out of the car that warming July morning. I’d wanted to go to her doctor’s appointment with her, but she’d firmly rejected that notion. I think she feared my reaction when she got the news. He’d told her alone, then sent one of his staff in who had dealt with cancer to talk with her and hold her hand.

…those books focus on caring for aging parents…

Letting her go to that appointment by herself has haunted me ever since. I tell myself I should have insisted. But I also know she didn’t want to have to think about me and my reaction when she got that piece of news. She wanted space to digest that news by herself before dealing with anyone else–including me. But it was the last time I let her face a doctor alone.

Balancing act

Being a caregiver, for me, was a constant balancing act on multiple levels. Jane had times, especially at the beginning, when she needed time to process what she heard and experienced. She needed me to be quiet and let her think. Sometimes she needed to be alone to do that. She also needed times she could simply talk to me about things other than cancer. Sometimes she needed me to pretend nothing was wrong. And there were times she needed to be held. I tried to honor those needs, as well as the cancer.

‘He says it’s probably cancer.’

But reading Jane’s moods–even after 21 years of marriage–wasn’t always easy. The cancer made it even more difficult. Occasionally, she retreated into herself so completely that all facial expression and body language vanished. It bewildered me at times.

Seek professional advice on communicating

In talking with other caregivers since Jane’s death, I’ve come to realize all of this is pretty common. Not that that helps much. We rely on all kinds of cues when we communicate with those we love. We don’t react well when those cues suddenly vanish–and that creates tension in an already difficult situation.

It bewildered me…

Part of me thinks spouses facing a serious disease or injury should immediately be placed in counseling with a qualified therapist. Jane would never have agreed, even had I, or a doctor, suggested it. We were both very private and independent individuals. Bringing another person in would have invaded that in ways we both would have had trouble with.

Sharing facts and feelings

That doesn’t mean it wouldn’t have helped. In retrospect, had we looked for and found the right person, it might have made some things easier. Instead, we did what we so often did: relied on our mutual willingness to talk without boundaries between us. We were always good about talking about what really bothered us. Neither of us let the other hide behind false issues.

Jane would never have agreed…

I think the willingness to share feelings is a real key to being both a good caregiver and a good patient. If you can talk to each other without a third-party, fine. But very few people seem able–or eager–to do so. Key piece of advice #1: ask for help when you need it.

Best advice: ask for help

And you are going to need help. Lots of it. And that help will become increasingly more difficult to come by as the weeks turn to months and the months–particularly with NET cancer or any longterm illness–turn to years. People will be there in droves at the beginning. They will thin as time passes. At the end, only your real friends will still stand with you. Some of those still there may surprise you–as well as who is not.

…ask for help when you need it.

Regardless, people won’t know what you need until you ask. Jane had a real battle in the hospital the night before Thanksgiving. She’d come out of a coma the day before and lost her mind for a while. She was so bad, the doctors sent me to another place in the hospital for the night while they worked on her crashing blood pressure and hypoxia. I have no idea what happened that night. They never told me.

You don’t know until you ask

But when I came through the door the next morning, there was love in her eyes–and a determination to live for as long as she could. She was afraid, though. There is a tradition in her family you wake up for a short time before you die to say your final good-byes. She wanted to see her father and sister. They couldn’t drive to Boston. It was Thanksgiving Day.

…you are going to need help.

I called a friend who said he’d skip dinner with his family to bring them up. Another friend cancelled her dinner plans to come with them. I’d been uncomfortable asking. But they didn’t hesitate. They’d been waiting for that kind of call–but they needed me to say what we needed first.

What we think we know vs. reality

People don’t know what we need unless we tell them. That was one of the hardest things for me to understand. If we are married long enough, we often know what the other needs without asking. We get in the habit of thinking people know what we need. The truth is, we don’t always know, under these circumstances, even what our other half really needs at any given moment. And neither do they.

 I’d been uncomfortable asking.

Your friends will have even less clue how to help. You have to swallow your pride and ask. More often than not, they will surprise you in a positive way. But not always. Then you ask someone else. You don’t have time or energy for anything else.

Advice: Caregiving is not about doing something for someone else, it's about walking the path they are on with them.
Advice: Caregiving is not about doing something for someone else, it’s about walking the path they are on with them.

 

Quiet? Quiet? I wasn’t built for quiet

awareness, Grief, NET Cancer Awareness Day/Month

My day without NET

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

…it didn’t matter what cancer took Jane.

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

Time without memories

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

 I watched families coming and going.

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

Quiet distractions

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

I drank my coffee and watched and listened. 

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

A quiet awakening

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

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

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

Grow where you’re planted

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

…I remembered who I am…

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

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