All posts by walking with jane

Landscape has not changed enough

awareness, Goals, NET Cancer Awareness Day/Month
Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. Wow need to reach them.
Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. We need to reach them.

Brighter landscape in many areas

The NET cancer landscape has changed dramatically since 2010, as I wrote earlier this month. Patients who came to this disease before that year no doubt have seen even larger changes. But newer patients may well look back seven years from now and see today as just as bleak as we saw the date of our own or our loved ones diagnosis.

That still needs to change…

To a large extent, even the name of the disease has undergone significant change in recent years. When Jane was diagnosed, everyone seemed to talk about it as carcinoid cancer. Carcinoid meant “cancer-like” and many doctors took that literally. They called it a good cancer too have. They did not mean that cruelly. They’d never really seen it. They didn’t understand it.

PCP landscape still dark

Too many primary care doctors still see it that way. Too few doctors remember it from medical school. Many did not hear of it even in passing then. And even those who have heard of it too often think of it as a form of cancer so rare there is no point to testing for it. Worse, the idea of it as a “good” form of cancer to have persists.

They did not mean that cruelly.

People say basal cell skin cancer is a good cancer to get. I used to think so, too. My dermatologist freezes some off my face every six months. A decade ago, I had Mohs Surgery to remove a more troublesome spot. I went back to work the next day. Basal cell skin cancer isn’t generally life-threatening. It’s easy to cure. But in early August I had another round of Mohs Surgery. It’s mid-November and I’m still recovering.

A patient’s daily landscape

There is no “good” form of cancer. Not all cancers end in death, but every cancer changes life as we know it. My skin cancer forced me to face a variety of issues–gave me a small taste of a future I don’t like. For weeks, everything I did was a struggle. The fog of mourning deepened in enforced inactivity. I’ll be months regaining the endurance and strength I’ve lost.

Too many primary care doctors still see it that way.

And this is a picnic compared to what Jane went through–to what every NET cancer patient goes through. Diarrhea, insomnia, flushing, sudden mood shifts form the daily routine of NET cancer patients. The constant diarrhea alone strips patients of protein, vitamins, minerals–every nutrient the body needs–and leaves them in an endless state of at least marginal–and often serious–dehydration. It annihilates quality of life on its journey to destroying life.

Not that rare in the total landscape

Nor is this the rare disease many doctors think. We diagnose 5-7 times more NET cancer patients a year than we do MS or Cystic Fibrosis, two of the better-known “rare” diseases. More patients diagnosed with NET cancer live in the US than those diagnosed with all forms of malignant brain cancer combined. Among all the forms of gastrointestinal cancer, NET cancer patients outnumber every other individual form but colon cancer.

There is no ‘good’ form of cancer.

Brain cancer, pancreatic cancer and those other gastrointestinal cancer kill more quickly than the average NET cancer. The comparative longevity of NET cancer patients builds up the number of those living with NET cancer beyond those of the cancers that kill more quickly. But mere longevity means nothing without good quality of life. When even a trip to grocery store requires knowing exactly where the bathroom in every store is, there is nothing good to be said for the quality of that life.

Changing the landscape

We have significantly more research funding than we did seven years ago. The support system for patients has changed with the creation of more than 20 online support groups. Those groups cover everything from what to eat to surgery, from emotional to informational support. There are even groups that support specific types of NET cancer. We have new drugs, new treatments, new diagnostic tools, and more new ideas in the pipeline than at any point in the history of the disease.

…mere longevity means nothing…

But the general medical awareness and understanding  piece of the NET cancer landscape has not changed enough over the last seven years. No patient should ever hear any variation of the words, “You have a good form of cancer.” They should never hear, “You don’t really have cancer.” And they should never hear, “I’ve never heard of this type of cancer before.” That still needs to change if we are going to change the NET cancer reality.

Seven years’ mourning drawing to an end

Caregiving, Death, Grief, NET Cancer Awareness Day/Month
Seven years marks the formal period for mourning the death of a spouse. I know my grief will not end when that time has elapsed. But it will free a part of my soul.
Seven years marks the formal period for mourning the death of a spouse. I know my grief will not end when that time has elapsed. But it will free a part of my soul.

The mystery of seven

I don’t measure time in decades. I measure it in sevens–in combinations of threes and fours. In number symbolism, three is the archetypal number of the eternal female, four the archetypal number of the eternal male. Their simplest combination yields seven, the archetypal number of creation. My world fills itself with three and fours, but most especially, sevens.

I can’t say when I heard the body replaces every cell in it over a seven-year period. I know the idea made sense to me–and in a symbolic sense, still does. The truth is more complicated than that–as it is with most things. Some cells live a few days. Others can live a decade or more. But symbols are powerful things. They can rule our hearts even when science speaks otherwise.

Memories and dates

I’m living the seventh year since Jane’s death. In a few days, I’ll face her seventh birthday since her death. She would have been 63. Next week marks my seventh Thanksgiving without her. In less than a month, the seventh anniversary of her last coma–and her death–will haunt my thoughts and feelings.

The cells of my lips that caught her final kiss vanished years ago–as have the cells in my lungs that held that final breath. But I can still feel that final brush, that final breath. I can’t hear her voice, but those tactile moments remain.  I can see her walking down the aisle on our wedding day, feel her hand in mine. But equally burned in my memory are that last birthday, that final Thanksgiving, and that hopeless Friday morning and evening of the day she died.

Time of formal grief

The ancients set the formal period of mourning for a spouse at seven years. That hour draws close and I am anxious for it to arrive. I wait anxiously for the time to end, anxious for some small taste of an end to the emotional turmoil of these seven years.

And I am fearful. Grief has defined so much of me the last seven years. What defines me when the formal time of grief ends? Who–or what–have I become inside this chrysalis? A butterfly? A moth? Something else? Or are the seven years of mourning another illusion, like the Year of Firsts? I’m not sure how I deal with that.

Breaking the chrysalis

I know the end of seven years will free a part of my soul–a part of my mind. I know this because I have felt that freedom building inside me all year-long. The waves of grief come less often, the torrents hit less often and with less force–though this weekend was difficult in ways I have not experienced in a while. In September, the last renewal of our vows–an every seven-year event–expired.

But I am not sure this is a freedom I want. It means seeking a new definition of who I am–a definition that includes Jane’s death and the grief that followed and all I’ve learned in that journey–but goes beyond that. What present can I build? What future? Can I still create the visions I hold in my mind?

Dreaming dreams

Like Ulysses before his last voyage, I am not what I once was–or who I once was. My body has grown old–too old, perhaps–to carry forward the things that I conceive. I want an end to NET cancer. But I also want a world where life has meaning and possibility beyond a cure for one disease.

Jane and I dreamed dreams of things we knew we would not see except, perhaps, from a mountaintop across an ocean to a far-distant shore. Those dreams evolved from love–and we knew they could yet be. But no dream comes true from the dreaming and so we set our shoulders to the boulders in the path before us. Many told us we were crazy–that we gave too much and that we expected too much.

Moving boulders

Jane did not quit. Even in her dying she tried to teach–me as well as her students–and every person she encountered. She died a death that changed the lives of doctors, nurses, nurses aids, and technicians. She changed the lives of patients who never met her and never heard her name. Even I was changed by the way she lived her death.

My Penelope is gone. But love remains. Ideals and dreams and goals remain. And the work of those myriad connected dreams remains unfinished. They may die with me, but I will keep shifting those boulders aside, nonetheless. And, perhaps, when I am gone, some other souls will take up the stones Jane and I leave behind unfinished. Perhaps not. But the boulders we moved will be moved.

Walk idea needs volunteers to work

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NET Cancer Awareness Day/Month

 

Raising awareness--or money--requires effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.
Raising awareness–or money–requires an effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.

A simple idea

Gordy Klatt had a simple idea in 1985. He was a doctor who’d seen one too many cancer deaths to sit on the sidelines. So he went to a track in Tacoma, Washington and started to run. He ran and walked for 24 hours. Friends and family supported him from the sidelines as he garnered pledges to the tune of $27,000.

…it is a puzzle we need to put together.

Somewhere in that 24 hours, the germ of the idea for Relay for Life was born: teams walking a track and raising money and awareness for the cancer cause. The American Cancer Society built a fundraising powerhouse from that idea–and arguably spawned hundreds, if not thousands, of team-based fundraising walks.

The walks we take

My friends and I participate in many walks over the course of the year. We do the local Relay, the Greater Boston Walk for Hunger, local walks for MS, Cystic Fibrosis, and scholarships, and, of course, the Boston Marathon Jimmy Fund Walk, the capstone of our year. This year, we tried to add the Pan Mass Challenge biking event–with limited success.

Gordy Klatt had a simple idea…

For most of those walks, we walk as Walking with Jane. But we do the Jimmy Fund Walk as the NETwalkers Alliance. That team is part of the second most successful Jimmy Fund Walk Group, #cureNETcancernow. Our bike team this year called itself the NETriders Alliance. Whether that name stays remains to be seen.

The walk we don’t have

What we don’t have is a NET cancer specific walk. Such walks–and even runs–do exist, but they are hardly as ubiquitous as walks for MS or Cystic Fibrosis, let alone Relay for Life. The closest such walk I know of is in New York. That’s a bit longer drive than I want to undertake for a 5k walk.

My friends and I participate in many walks…

The idea for a NET cancer awareness walk in Boston has kicked around the inside of my brain for a couple of years. Wednesday morning, if all goes as planned, I’ll pitch that idea to some of the people who run the Jimmy Fund Walk. I’ll seek their guidance and support for the project.

We need help

I know one of the first things they’ll ask is how many local volunteers we can get for the project. We’ll need people to help plan the route, figure out where to put support stations, and deal with local government to get permits and police. We’ll need day-of volunteers as well as people to work on the steering committee.

I know some day this spring or summer, I’m going for a walk in Boston to raise NET cancer awareness. I don’t want to plan that walk alone. And I don’t want to walk it alone. If you are in the Boston area, we need your help. Consider your markers called in.

Raising the stakes

This represents just one of many steps in putting NET cancer in the national consciousness. We need the average person to know NET cancer exists at the same level they know that brain cancer or ovarian cancer or cervical cancer exists. We need people to know it exists the same way they know MS or ALS exists.

There are many pieces to that puzzle–and this is just one of those pieces. But it is a puzzle we need to put together. Recent advances show this cancer affects many more people than we imagined just seven years ago. Without broader awareness in the general population we will never have the resources to help change the lives even of current patients.

 

I hate one day in every month

awareness, Caregiving, Goals, Grief, Jane, NET Cancer Awareness Day/Month
I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.
I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.

Days that hurt

I hate the tenth day of the month–any month. But I especially hate November 10 and December 10. I hate the fact November 10 is Worldwide NET Cancer Awareness Day. I don’t want to, but it falls on the tenth of the month and that day has a double sacredness to me in November.

…I love the possibility NET Cancer Day helps create.

Today is the monthly anniversary of Jane’ death. It also marks the seventh anniversary of the last even remotely normal day of my life. Worse, this year, it stands one month away from the seven-year anniversary of Jane’s death for a man whose life runs in sevens, not decades.

The last sane day

Seven years ago today, Jane and I went to bed early. The next morning, we faced the difficult rush-hour drive into Boston to Dana-Farber. We’d see Jen Chan, Jane’s oncologist, get another round of blood tests, wait for the monthly Sandostatin shot to thaw out, get that injection done, see a dietician. It was supposed to be a routine day. It wasn’t.

…that day has a double sacredness to me…

There was trouble with the blood draw because they couldn’t find a vein that would work. Jen was concerned about the build-up of fluids in the abdomen. The meeting with the dietician went well, but then we discovered Jane was leaking a clear fluid from the injection site. When we got home, for the first time, I had to carry Jane up the stairs. That had never happened before.

The beginning of the end

The next morning, Jane’s heart surgeon called. He wanted to move the surgery to replace the valves in the right side of her heart to Monday. They’d been damaged by the cancer. We’d planned to do that surgery after the holidays. Now…

It was supposed to be a routine day.

Saturday, we had that long conversation everyone needs to have. We did it once a year in January. This was an extra one–a more difficult one–the real one no one really wants to have. But we both stayed optimistic. This was a precaution–not a good-bye.

Sudden decline

Sunday, I had to help her off the toilet. That had never happened before. We arrived at Brigham and Women’s Hospital that afternoon. She didn’t have it in her to walk to admitting. I pushed her wheelchair to the desk on her floor and to her room. I can’t describe how that felt–how it feels, even now. She had always refused a wheelchair before.

But we both stayed optimistic.

Monday, they took her into surgery about noon. Part of me wishes she’d died on the table. She could have. The heart was more damaged than they expected. The brilliance of her surgeon saved her. But six hours of surgery became 11. I got to see her after midnight–unconscious and with tubes and wires flowing everywhere.

Aftermath

I loved her and I fought for her. And then I let her die. I planned the funeral she refused to believe she’d need. I buried her and settled her affairs. I stayed strong for her family and our students. Two months later, I started to cry. I haven’t really stopped since.

Sunday, I had to help her off the toilet.

But everyone else had moved on. They thought I had, too. No one saw the tears. No one saw me walk into the grocery store and start shaking. No one saw me walk out the door. I worked as I always had–though not as efficiently. I wandered the house aimlessly. I didn’t sleep. But slowly, I learned to cope, if not to heal.

Seven years in solitary

I understand solitary confinement. Every widow and widower does. You go from constant human contact to almost none in an instant. You join support groups, have coffee and meals with friends and children. But at the end of the day, you come home to an empty house filled with silence and memory. For all that you fill your life with other people and other things, a part of you no longer exists.

No one saw the tears.

Something has changed in you and you can never go back. You can only live with it and keep moving forward. So you change grocery stores, go to different restaurants. You paint rooms and redecorate. Sometimes, you move. You find work that has meaning for you. You cope–but sometimes–even years later–you just cry for no better reason than it hurts too much not to.

A day of hate–a day of love

November 10 marks the last sane day of my life. It marks, too, the last day I could–if even for a minute–pretend  NET cancer wouldn’t prove the end of our life together. I wish NET Cancer Day fell on any other day of the year–and I’m glad that it doesn’t. In a very real sense, for me, it falls on the perfect day–a day of remembrance that lets me fight back.

…a part of you no longer exists.

I hate that other people face what Jane faced. I hate that we don’t have a cure. And I hate the idea that too many other spouses face the same solitary life I live if nothing changes. But I love the possibility NET Cancer Day helps create. It helps me deal with the second worst day in my year.

 

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.

Buried truths about NET cancer, 2010

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Buried emotions

We buried Jane on Saturday, December 18, 2010. I went back to work Monday morning. People told me I shouldn’t have–and they may have been right. But I knew our children–our students–had lost their surrogate mother and barely seen their surrogate father in more than a month. I needed to be there for them–and they needed to be there for me.

When we reached cruising altitude, I began to write.

I arrived early that morning–as we always had. The halls were dark and empty as my soul. I opened the door to my classroom. My students stood quietly in the dark beneath a sign that read, “Welcome Home.” That fanned a tiny flame I barely knew existed. In that moment, I knew I was not completely alone–that I would find a way to survive this.

Buried past

For many NET cancer patients in 2010, survival was the central issue. As I said in yesterday’s post, they had few options–none of which did more than slow the course of the disease and/or alleviate some of the symptoms. Those symptoms–frequent diarrhea and flushing, for example–were inconvenient and embarrassing at best. At worst, they became deadly.

…I knew I was not completely alone…

Jane’s NET cancer had gone undiagnosed for decades. She had tumors in her liver the size of her fist–and smaller tumors scattered everywhere in that organ. Students told me later there were times they thought she was about to pass out in front of them. She had daily bouts of diarrhea she told no one about. She was dying–likely knew she was dying–but she worried about her students and the AP and Achievement exams they faced in the spring more than she worried about her own health.

Buried conditions

Carcinoid heart disease remains a fairly rare event for most NET cancer patients. It happens when the tumors in the liver create serotonin in significant quantities. The body produces serotonin for a variety of purposes, including controlling the speed of digestion, respiration, sleep, and mood, among other things. Normally, the liver cleans out the serotonin in the blood stream  before it reaches the heart.

She was dying…

But when the serotonin is manufactured in the liver, that serotonin doesn’t get metabolized. Instead, it flows into the valves on the right side of the heart. It is a chemical that is highly caustic–caustic enough to destroy those valves, causing the blood to leak out around the valves and gather in the legs and lower abdomen. This causes swelling, first in the feet, then in the legs, and finally in the belly as the damage increases and more and more fluid leaks out.

Buried truth

That swelling finally got Jane to the doctor. By then, it was likely really too late to do anything. But we tried anyway–both trying to put an optimistic face on for the other. And we had a plan–an unrealistic one, in hindsight, but a plan none the less.

It is a chemical that is highly caustic…

Job One: lower the serotonin levels with Octreotide and  Sandostatin. Job Two: fix the valves in her heart. Job Three: reduce the tumor load in her liver using liver embolization, followed–or preceded–by liver resection. Job Four would go after the original tumors in her lower bowel.

Unburied truth

We never got the serotonin levels under control before her heart got so bad the operation couldn’t wait any longer. Then, the operation discovered the damage to her heart was greater than anticipated. The surgeon solved that damage, but a carcinoid crisis happened every time she started physical therapy to get her back on her feet. Every time she ate, she got hit with massive diarrhea–which left her increasingly dehydrated and weak.

That swelling finally got Jane to the doctor.

Finally, there was nothing left to try–and no reserves left to try with. Early diagnosis–even just earlier diagnosis by a few years–would likely have made an enormous difference. I know a correct diagnosis in 1980, when Jane had her first symptoms, would mean she would still be here today. I’m fairly certain an accurate diagnosis even as late as 2005 might have made a significant difference. Trials existed and maybe she would have gotten lucky. Instead, she died.

Beginning the next battle

My students got me through that week before Christmas. They didn’t expect much from me beyond my presence–and the assurance I would not disappear on them. They–and some of my colleagues–helped me begin to process everything that had happened in the preceding year. I began to see what needed doing and began to think how best to do those things.

Finally, there was nothing left to try…

As I boarded the plane to Seattle that Thursday night to spend Christmas with my family, I began sketching out a plan that started with a single pamphlet. Doctors told Jane for years her symptoms were caused by Irritable Bowel Syndrome. I now knew NET cancer had a too similar set of symptoms. When we reached cruising altitude, I began to write. 

Jen Chan was Jane's oncologist. Seven years after we buried Jane, Jen works exclusively on NET cancer.
Jen Chan, Jane’s oncologist, helped me write my first pamphlet on the NET cancer. Seven years after we buried Jane, Jen will chair a Phase 3 trial of a new drug for the disease next spring.