Category Archives: NET Cancer Awareness Day/Month

Death, incidence, prevalence–a NET perspective

awareness, Death, NET Cancer Awareness Day/Month

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

 

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

Diagnoses and deaths

About 328,030 Americans were diagnosed with gastrointestinal cancers in 2018. There were 165,460 deaths. That’s 27 percent of all the cancer deaths in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…more research than we are doing now.

In contrast, 234,030 people were diagnosed with lung cancer and 154,000 died; 334,200 new breast cancers were diagnosed and 42,260 people died.

Death by the numbers

In terms of both diagnoses and deaths, colorectal cancer is the worst of the GI cancers. Last year, 145,600 Americans were diagnosed with it: 51,020 died. It is also among the worst cancers overall in terms of mortality–only lung cancer killed more Americans last year.

There were 165,460 deaths.

Traditional pancreatic cancer was diagnosed approximately 56,770 times last year; 45,750 died from it. It is the third most common form of cancer death in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

Where NET cancer sits

Liver/biliary cancer is the fifth most deadly form of cancer. With 35,740 deaths a year, it trails breast cancer by about 6500 deaths a year. But it is a far less common diagnosis at 54,400. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…only lung cancer killed more Americans last year.

As I wrote two days ago, we have no up-to-date numbers for NET cancer. The 12,000 cases a year cited in 2012 would put it behind both stomach cancer (27,510) and cancer of the esophagus (17,650) but ahead of all other GI cancers. Even assuming a five percent increase in diagnoses, which would take the number to 16,080, it would still trail those more frequently diagnosed cancers.

But no up-to-date numbers

We don’t have any recent statistics for how many people die from the various NET cancers each year in the US either.

…more frequently diagnosed cancers.

The one thing we do know is, in 2012, about 171,000 diagnosed patients were living with the disease in the US. We had two drugs approved for use in NET cancer patients at the time–and surgery for those whose disease was discovered early enough for that to be helpful.

Making a case for an increase

We’ve since added three FDA approved drugs, liver embolization procedures, and a radiation treatment called PRRT that had been used for some years in Europe. There are additional treatments in the pipeline.

We don’t have any recent statistics…

My guess is that 171,000 patients has increased over the last seven years, perhaps significantly.

Why second?

But even if it hasn’t, NET cancer would still be the second most prevalent form of GI cancer, trailing only colorectal cancer. The others kill too fast to build up that large a number of patients. Simply put, there are very few five-year survivors of pancreatic, liver, stomach or esophageal cancer.

There are additional treatments in the pipeline.

Colorectal cancer is also deadly, but so many patients are diagnosed with it that the net gain in living patients is about 100,000 a year.

Quality of life issues

Yes, NET cancer patients can–and often do–live for many years after diagnosis. I know many patients who have fought NET cancer since before Jane was diagnosed over nine years ago. But quality of life matters–and the quality of life for many NET patients is quite poor: constant diarrhea, insomnia, intestinal pain and bloating are just some of what those patients deal with constantly.

The others kill too fast…

Our treatments, other than surgery, are not curative. They offer symptom relief and slow the progress of the disease. Nor do they work for every patient.

And many suffer for many years before they get a diagnosis. It was 30 years between Jane’s first symptoms and her diagnosis. She was an outlier, but many go 5-7 years before being diagnosed.

Research and awareness matter

The problem is the tumors really can form just about anywhere–and the symptoms can vary based on where the tumor is located and what hormones it is producing. And sometimes, there are either no hormones to detect–or, perhaps, hormones we don’t yet know how to detect.

…many suffer for many years…

All of this underlines–again–the need for greater awareness among both medical professionals and the general public–and much more research than we are doing now.

Searching for the real NET number

awareness, NET Cancer Awareness Day/Month
An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.
An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.

#30NETfactsin30days: November 1

The number of new diagnoses of NET cancer in the US is rising faster than other cancers: an over 6-fold increase from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). 

What’s the right number?

Few things about this project have been more frustrating than trying to figure out how many new NET cancer patients are diagnosed each year. The last “official” figures come from a 2012 study that found 12,000 new patients and a total of 171,321 diagnosed patients living with the disease.

…we all need to be more aware…

That same study cited an expected growth in diagnoses of five percent a year. For cancer, that’s a fairly high growth rate in diagnoses. Lung cancer cases, for example, are in decline. Most other cancers seem only to grow as fast as the increase in population. The number of breast cancer diagnoses a year, for example doesn’t vary much from year to year.

Complicating the potential number

At five percent growth in diagnoses a year, 2019 should end with about 16,900 new patients. That, of course, also assumes that awareness and diagnostic techniques are no better than they were in 2012. Since that year, we’ve seen two new PET scanning technologies begin to come on line–the Octreoscan and the Gallium-68 scan.

The last “official” figures come from a 2012 study…

We’ve also seen the development of a new 5-HIAA blood test that is lest cumbersome than the 24-hour urine test doctors used in 2012. That test has only begun being used very recently, so it’s likely not had much impact yet–but may well do so in future.

Why numbers matter

The patient population has also likely grown during that period as new treatments have become available–but that’s an issue for another day.

…it’s likely not had much impact yet…

The lack of up-to-date data would be less of a problem with a disease where the diagnoses don’t vary much from year to year. But we’re still trying to define the scope of the problem we face. More patients creates greater urgency for finding treatments–which means a greater need for research funding, as well as a greater need for oncologists with knowledge of how to treat this peculiar disease.

More importantly, it means we need primary care practices to have greater awareness of the disease than many do.

Meanwhile, in Kentucky

Globally, there is evidence that the number of cases is growing outside the US. But there is one piece of evidence that NET cancer diagnoses are growing at a greater than five percent a year rate in the US.

More patients creates greater urgency…

In an article published in Oncotarget in April, 2018, researchers looked at more recent data on NET cancer diagnoses for the state of Kentucky through 2015. They found an increase from 3.6 per 100,000 in 1996 to 10.3 per 100,000 in 2015.

A word of warning

Now Kentucky has a higher cancer incidence rate than most of the rest of the country across the board. And its NET cancer incidence in 2012 was 8.4 as compared to 6.98 per 100,000 for the US as a whole. But that’s a greater growth than five percent a year in that locality.

…10.3 per 100,000 in 2015

How big an issue NET cancer will become in the years ahead is an open question. Right now, we all need to be more aware of it–and of its potential.

My last arrow? I hate this dragon

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month, Personal statement
I lost Jane nearly nine years ago. I'm still fighting her cancer--but I'm nearly out of arrows.
I lost Jane nearly nine years ago. I’m still fighting her cancer–but I’m down to my last arrow.

The arrow I have

I have to admit, I’m worried. In two days we launch a social media campaign on Facebook and Twitter aimed at PCPs, NPs, medical schools and the general public about NET cancer. It’s the last arrow I have in my quiver and I’m far from sure it’s enough to make this dragon even wince. But it’s the arrow I have, so…

I made a promise.

This campaign has to go viral in ways nothing I’ve ever posted–or written anywhere on anything–has done. It has to reach communities I’ve never figured out how to reach effectively. We’ve worked on it for months–and I’m still tinkering with it today–will likely still be doing so tomorrow.

Hoping for an avalanche

Earlier this year, I described what I’ve spent the last nearly nine years doing as standing on top of a mountain throwing pebbles, hoping to start an avalanche that would wake people up to the reality of neuroendocrine cancers.

It’s the last arrow…

I’ve watched in horror as the numbers of diagnoses and the number of patients has climbed year after year. We stand at the edge of NET cancer losing its rare disease status, yet it remains a disease neither medical professionals nor the public has any real awareness of.

Time’s arrow

It’s been a decade since Jane’s H1N1 flu battle opened the gate to her NET cancer’s closing act. It’s been nine years, two months, and 14 days since we knew what she had. We’re barely seven weeks from the ninth anniversary of her death.

…standing on top of a mountain throwing pebbles…

In that time, I’ve raised some money, inspired some people–thrown lots of pebbles–but NET cancer remains largely unknown and largely underfunded. And I’m down to that last arrow–that last pebble. And I’m afraid it isn’t going to be enough.

Death and failure

I’ve lost track of how many patients I’ve known have died this year. There have been too many. I know more will die before this year ends. Each one tears at my soul–each one reminds me we’ve failed–that I’ve failed to honor the promises I made myself when Jane died: to raise awareness so no one hears what we heard the day her doctor told us what she had–“I’ve never heard of this cancer before;” to create the money that would help to find a cure; to find the money that would make an early diagnosis common rather than an exception.

…down to that last arrow…

I thought all those things would be easy. How could anyone who heard Jane’s story not be moved to help? All I needed to do was write and speak and advocate. These were things I knew how to do–have done all my life.

Competing voices

And I failed. There are hundreds–maybe thousands of diseases our there with the same trouble. No one knows about them except the people who have them. No one cares about them except for those affected by them. A thousand things clamor for attention every day. No one has time for the things that don’t have a direct impact on their lives or the lives of their families.

There have been too many.

Starting Friday, we will try again. Over the course of 30 days, we’ll post our 30 facts and hope they get reposted and read and will do some good. I have a plan for a follow-up project in December and January if this even sort-of works.

And then?

And if it doesn’t…

If it doesn’t…I guess I’ll try to make a new arrow or look around for some loose pebbles somewhere.

…we will try again.

I made a promise.

–Harry Proudfoot,

President, Walking with Jane

Money remains a central NET cancer problem

awareness, Fundraising, Goals, NET Cancer Awareness Day/Month

We raised just over $5000 last month with a dinner fundraiser. That's not a lot of money compared to what we ultimately need--but with the slim funding we have, every dollar counts.
We raised just over $5000 last month with a dinner fundraiser. That’s not a lot of money compared to what we ultimately need–but with the slim funding we have, every dollar counts.

Money remains too scarce in 2017

Money was a problem in 2010. The amount researchers had to spend amounted to less than we spent on Jane’s treatment in the four months from her diagnosis to her death. Jane telling her doctors to study her the best they could, in some ways, doubled the research money for the year.

Grants run out and have to be replaced.

Money remains a central problem for NET cancer seven years later. Yes, we have 10 times as much research money now as we did then. Yes, we’ve seen significant increases in money for clinical trials from pharmaceutical companies and other sources. But we need to find more.

Funding for research

We still spend far less on NET cancer than we need to. The disease is complicated in ways no one saw coming. Just growing tumors in test tubes has proven insanely difficult. Mouse models have proven largely pointless. The tumors often grow so slowly the mouse dies before we can get useful information from it. The DNA shows no major attackable weaknesses.

Money remains a central problem…

Our efforts seemingly remain largely limited to finding ways to slow the disease and ease patient symptoms. Yes, we’ve found better scanning techniques. Yes, we have a trial of one variety of immunotherapy going on at this moment and another variety in the works. But much of the last seven years has remained devoid of curative ideas. This is not to belittle the substantial efforts to find ways to alleviate patients’ symptoms. Quality of life very much matters–especially in the absence of a cure. But we should not have to choose between one or the other.

Funding for awareness

The lack of money has also hampered our efforts to educate primary care physicians about the NET cancer. Our first priority has been finding ways to help patients who know they have the disease. But we have no real idea how many additional cases we are missing because of simple ignorance. As I’ve written before, not only can we not detect what we don’t suspect, but doctors can’t suspect what they have not heard about.

The disease is complicated…

And too many primary care doctors have not heard of NET cancer. NET cancer patients outnumber brain cancer patients in the US by a significant number. Every doctor in America knows what a brain cancer is. Too many don’t know what NET cancer is. And too many who do know so little about the disease that they say things like, “You have a good cancer too have.”

The next round

We can’t deny that NET cancer research is much better funded today than it was even seven years ago. But we still have less funding than what amounts to a rounding error on many other forms of cancer. We need sufficient funding to mount and maintain a more serious basic research effort than we have today. We need sufficient funds to continue to find and test new treatments and new diagnostic tools. And we need sufficient funds to ensure that every primary care doctor comes to know NET cancer for the menace it is.

…doctors can’t suspect what they have not heard about.

So for all the improvements in funding we have seen in recent years, we have to do more. Grants run out and have to be replaced. Much research that we need to do goes unfunded because we can’t afford to fund everything that needs funding. And awareness campaigns for both doctors and the general public need not just planning, but the resources to carry them forward. For all the problems we have solved in the NET cancer community, this one remains very much on my mind.

 

 

Birthday takes me back seven years

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

Today would have been Jane's 63rd birthday. Seven years ago, she was recovering from heart surgery.
Today would have been Jane’s 63rd birthday. Seven years ago, she was recovering from heart surgery.

Jane’s birthday present

“I got a new heart for my birthday.” Jane said that cheerfully seven years ago today. She had gotten out of bed, briefly, for a short walk down the hall. She’d begun doing other pieces of physical therapy. We were preparing to move her to the step-down unit as soon as they had a bed for her. They’d taken off the monitors as part of that preparation. It was truly a happy birthday for both of us.

…especially on her birthday.

Then the shift changed and the new nurse started doing her review of Jane’s condition. Jane’s blood-oxygen level had dropped into the upper 80s. Jane went back on oxygen, but the numbers refused to budge. Then they fell into the low 80s. They took Jane to another building for a scan in the wee hours of the next morning. I never got back to my hotel room that night.

Birthday night drama

None of us realized until weeks later this may have been the first of the carcinoid crises that would eventually kill her. We thought the problem came from a lung that hadn’t fully re-inflated after the surgery. Jane would spend many hours strapped into a CPAP mask over the next couple of days. She hated the mask. She was claustrophobic to begin with. Life in that mask was a hateful struggle.

I got a new heart for my birthday.

This was not the first complication in the replacement of the valves in the right side of Jane’s heart. Two days before a 4-6 hour operation had turned into 10 hours. First, they’d had difficulty placing the central line because Jane was so dehydrated her veins just didn’t take well to the needles. Then, in mid-operation, they’d discovered the damage to her heart was much more extensive than anyone had imagined. The surgeon had to build a new seat for one of the valves.

Two days before Jane’s birthday

I’d sat in the heart surgery waiting area as doctor after doctor came in to speak to other patients’ loved ones. At one point, I went for a walk down Tremont Street to Mission Hill Church. Senator Ted Kennedy had made a similar trek every day when his son was in the hospital fighting his cancer. Kennedy’s own funeral was held there years later–and Jane and I had watched it on television.

Life in that mask was a hateful struggle.

In college, I’d lived in that neighborhood. I’d watched the sun rise from a small park next two the church on many mornings. That afternoon, I sat in that same space for a time. Then I went inside and sat in a pew at the back of the church. Someone walked the Stations of the Cross as I sat there. I’m not Catholic–not even traditionally Christian. But the arches and the stained glass and the silence eased me marginally.

Into darkness

I walked back to the hospital, hoping for some news. There was none to speak of–just that the surgery continued. The people at the desk were supportive. They’d seen this all before–knew and understood my anxiety. Slowly, the room emptied out until I was the only person besides the person on the desk still there. At 8 p.m., they closed that area. I went to the lobby outside the ICU and let the nurses know I was there. Periodically, they gave me what bits of news they had.

In college, I’d lived in that neighborhood.

I tried to watch some television. It was just noise. Most of the time I stood at the window, looking out over the area I had once called home–and pacing back and forth, trying to burn off the nervous energy. I did that a lot in the weeks that followed when I couldn’t be with Jane for one reason or another.

Home by Christmas

Eventually, they told me Jane was in a recovery room and would be upstairs in a couple of hours. I called her father and sister to let them know, then settled in to wait for the surgeon. The surgeon came up about 11:30. He told me about the damage to her heart, the problems with her dehydration. But the surgery had gone well, despite that. He expected her recovery would go as planned–slow, but ultimately, she’d be home by Christmas.

I walked back to the hospital…

They let me see her about an hour later. They try to prepare you for what you will see. People sometimes pass out when they see someone like that. The paleness alone is difficult. There are lines and wires everywhere and you can’t touch the person you most love in all the world despite knowing how much you need to hug them–to let them know you are physically there and not just a disembodied voice in their dreams.

Back to the present

Wednesday, I had meetings with people at Dana-Farber, Jane’s oncologist, Jen Chan, among them. I had a meeting with people from the Jimmy Fund Walk in the morning. Then I went into Kenmore Square for lunch. I walked back to DFCI afterward for my meeting with the 3-in-3 committee. I was early, so I walked out to Mission Hill Church. They were in the middle of a service, so I didn’t go in.

…she’d be home by Christmas.

I walked back, going down the long main corridor at Brigham and Women’s Hospital, as I had during every day of Jane’s time there. It dawned on me only then I was retracing my steps on that day seven years before. My conscious mind was focused on meetings and the work in front of me. My subconscious was busy reliving the events that started me on this path.

Birthday memories

After the afternoon meeting, I walked back to the heart clinic building. I took the elevator to the sixth floor ICU. I stood, once again, in front of those windows. I looked out at the lights on Mission Hill. And I remembered the young man who once lived there. I remembered the older man waiting for news about his wife. I saw the face of the person I’ve become–and saw the work that remains for me to do.

…I walked out to Mission Hill Church.

Jane could have died that day seven years ago. She could have died from that first crisis the night of her birthday. I could have let her die when the second crisis took her down the following Monday. Sometimes, I think I should have. Sometimes, I think she would have liked any of those options better. The thought still haunts my sleep.

Contemplating different paths

I would be different today. I might be doing other things. Perhaps I would sleep better. Perhaps not. The events that followed shaped more than my life, though. They helped shape the lives of others as well–doctors, nurses, caregivers, patients. New knowledge emerged from those events–new alliances, new friendships, new ideas, new focuses, new procedures, as well.

The thought still haunts my sleep.

Jane’s death and the manner of it made a difference in the lives of others, just as her life had. But I miss her–and the loss still hurts–especially on her birthday.

 

 

 

 

 

Public awareness key to increased funding

awareness, Fundraising, NET Cancer Awareness Day/Month

Most people on our Jimmy Fund Walk teams rely on small donors to reach their minimum $300 goal. Finding those donors helps increase public awareness of the disease.
Most people on our Jimmy Fund Walk teams rely on small donors to reach their minimum $300 goal. Finding those donors helps increase public awareness of the disease.

Public awareness strategies key

I spent yesterday in Boston in a variety of meetings about NET cancer fundraising and awareness. My morning meeting involved discussions about a potential NET cancer awareness event in the city sometime this spring. We talked about both an awareness walk and doing a series of “table” events in various locations in various cities with an eye toward reaching out the general public about the disease.

We need to do a better job…

While we’ve made too little progress on educating primary care doctors about NET cancer, we’ve done an even poorer job of reaching the general public. Some would argue that awareness doesn’t matter very much. I have to disagree, for two reasons.

Not as rare as we thought

First, NET cancer is not the insanely rare disease we thought it was even ten years ago. It has not yet achieved the level of a public health crisis–and likely won’t. But we’ve seen explosive growth in diagnoses over the last six years–an increase of about 2000 cases very year from 2010 to 2016–the last year for which we have statistics.

…reaching out the general public about the disease.

In 2010, we diagnosed about 10,000 cases in the US. By 2016 that number had swollen to 21-22,000 cases a year. In 2010, we had about 105,000 people living with a NET cancer diagnosis in the US. Today, that number tops 171,000. The number of people with the disease who have not had a NET cancer diagnosis yet is a matter of debate. Some doctors, privately, talk about 250,000 additional cases. Others, again privately, put the number far higher than that.

Implications of larger numbers

What we do know is even the small improvements in PCP awareness combined with the arrival of the Gallium-68 scan have unveiled a substantial number of new cases. We are closing in on the kinds of numbers that will end NET cancer’s legal status as a rare disease–as a true zebra. Much NET cancer funding is tied to that status.

…not the insanely rare disease we thought…

If NET cancer is, as appears increasingly likely, a significantly more widespread form of cancer than previously believed, people in the general population need to be made more aware of that fact. To do otherwise would be immoral. People in general need to know the symptoms the way they know what to look for to catch breast cancer at an early stage. Early diagnosis is critically important with any cancer. Public knowledge and awareness increases the chance of early diagnosis.

Solving the funding riddle

The second reason we need greater public awareness has to do with funding. We are currently too reliant on major private donors–those who give over $20,000 a year. One-third of the funding for basic research over the last two years has come from a single grant. When that grant ends in 2018, my understanding is that money is gone. There is no renewal option beyond that. We’ll need to find a way to replace that money or watch research funding–and research–shrink.

People in general need to know the symptoms…

About 20 percent of the money raised by 3-in-3: The Campaign to Cure NET Cancer, the funding campaign I chair for the Dana-Farber Cancer Institute’s NET cancer program, comes from small donors. We know we can count on that money year-in-and-year-out. The other 80 percent comes from major donors. The loss of a single smaller donor is generally fairly easy to replace. The loss of a single major donor can mean an entire line of research dies for lack of funds. The addition of a major donor can open an entirely new line of research.

Every donor matters

We need to keep major donors in the mix–honestly, we need to keep adding them. But we need to do more to cultivate the small and medium size donors more than we currently do. People don’t–can’t–donate to causes and diseases they have never heard of. They don’t donate to things they don’t feel a connection to. Nor do they encourage government and institutional spending on those things.

We’ll need to find a way to replace that money…

We need to do a better job of reaching out to the public at large about NET cancer. We need to do so for the sake of their health. But we also need to do so for the research funding they can help supply.

 

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.