Home: a place to live and not to die

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

What I heard

“I want to go home,” Jane said in the quiet whisper that was all the voice she had after the tracheotomy they’d done so they wouldn’t have to ventilate her again. “I want to go home.”

And then we need a cure.

I told her we couldn’t do that yet. I told her she had to be patient. I said we hoped she’d be in rehab by Christmas–and home by mid-January. I promised her we would go back to the Lake over February vacation. “I want to go home,” she repeated.

What she meant

I believed all those things were true. But she got angry with me that night. “I want to go home,” turned into the cold silence she gave me whenever I did something wrong or she was convinced she knew better than I did. I should have listened to her better.

‘I want to go home.’

Twelve hours later, she would go into the coma that would end in her death. It was only later that I figured out what she meant by, “I want to go home.” She knew she was dying–and she didn’t want to die in a hospital bed. She wanted to die in her own.

Living failure

I failed Jane that night. I failed her just as I had failed her by not getting her to go to the doctor earlier in our marriage. Had I done so, maybe we could have bought her a few more years of tennis and long walks along the beach. Maybe, now, I would hurt less than I do, even had she died.

She knew she was dying…

I don’t know that getting her to the doctor in February of 2010 when she nearly passed out in front of her students with a piece of chalk in her hand would have made any real difference. I know I tried. I know she refused to go. I know I should have tried harder–but moving Jane, once she made up her mind was nearly impossible. Three years of dating and 20 years of marriage had demonstrated that.

Home for the holidays

Sometimes I think about the consultation with her heart surgeon in mid-October. He wanted to put the surgery off until after Christmas so Jane could enjoy the holidays with her family. That would also give her oncologist more time to lower the cancer load through the use of the few tools we had then. That would improve her chances.

I failed Jane that night.

In hindsight, I should have suggested doing the surgery sooner. Maybe the damage to her heart would have been less. Maybe the carcinoid crises would not have been so severe. But how much time would that have bought her? What would the quality of that time have been? And maybe she would have died that much sooner.

Nothing to be done

Intellectually, I know nothing I could have done differently would have made any real difference. None of the doctors she might have seen would have known about NET cancer, wouldn’t have ordered the one test we had even if they’d heard of NET because, “It’s so rare, it couldn’t be that.”

I should have suggested doing the surgery sooner.

They’d have poked her and prodded her and done nothing but make her miserable. Jane didn’t like being touched. She didn’t like going to the doctor–at least not for herself. Strangely, she made certain I got my physical done and peculiar symptoms checked out. She made sure her parents did, too.

Nothing to be done

It took me three days to get her to the doctor when her arm went numb and began to swell. She went only because the biopsy report on her cancer was coming in the same day. There was a blood clot in her shoulder. Her hospital stay for that was the first night we slept apart in 15 years.

Jane didn’t like being touched.

Even today, we have nothing that really would have helped Jane by the time she was diagnosed–and certainly nothing that would have cured her.

What she did

She injected herself in the belly with a blood thinner every morning for the blood clots. She injected herself twice a day in the belly with octreotide. She waited patiently every four weeks for her Sandostatin to warm up so they could inject it into her buttocks.

…nothing that would have cured her.

None of it did much for her. She couldn’t eat more than a few bites at any meal. She had daily diarrhea. She had nightly insomnia. Her belly was full of fluid from the leaking valves in her heart. Her world was shrinking every day. She just wanted to go home.

Things to be done

The only thing that would have helped was the early diagnosis we still, today, don’t have. We need a simple, inexpensive blood test we can make as routine as the one we have for prostate cancer.

None of it did much for her.

And then we need a cure–a cure that is so effective that NET cancer dies and the patient goes home to their family to live a normal life until old age takes them.

What did home mean to us? It meant sitting on the deck at night and watching the hummingbirds; it meant walks along the boardwalk or the beach; it meant mornings in the garden and quiet afternoons reading together under the oak trees. But most of all, it meant time in each others presence--bathing in the love we had for each other.
What did home mean to us? It meant sitting on the deck at night and watching the hummingbirds; it meant walks along the boardwalk or the beach; it meant mornings in the garden and quiet afternoons reading together under the oak trees. But most of all, it meant time in each others presence–bathing in the love we had for each other.

Relationship blues: truths about how it feels

Uncategorized

Death killed us, but it didn’t kill our relationship

Jane died 71 months ago today. That I still observe that event on a monthly basis should tell you a lot about our relationship. It does not tell you everything.

…she would never be the same.

People have the illusion that our relationship was perfect. It wasn’t. People sometimes get the impression I was a paragon during Jane’s last days. Some days, she hated me–and some days, she had cause. People only think otherwise because I tell the story, not her.

The things that gnaw at a relationship

But I don’t understand how spouses walk away the day they discover their partner has cancer. And yet a part of me does understand. I know a part of me was glad when the nurses would tell me to go out for a day. I know going to work some days was all that kept me from doing or saying something I would regret.

Some days, she hated me…

And there were days things came out of my mouth that hurt her–even in the last week of her life. Frustration and impotence are terrible things. They gnaw at the spirit and at the will. They break the most patient human being and suck out the marrow of the soul.

Two sides to relationship blues

It happens to patients and it happens to caregivers. The pain of the cancer–the pain of impending death–speaks through both sets of lips. Nothing hurts more or angers more than that.

Frustration and impotence are terrible things.

Jane and I both knew we would make mistakes–would say things we didn’t mean–would hurt each other without intending to. The day before she went into the hospital, we tried to short-circuit the guilt we knew we would both feel at times in the weeks ahead: We forgave each other for the mistakes in our past and forgave each other for the mistakes we knew we would make in the future.

Relationship to forgiveness

What I have failed to do is find a way to forgive myself for those things I did. Forgiving her was easy. Between the frustration of trying to think through drugs and the frustration of what the cancer was doing to her, I could explain away her actions and her words. And between my own frustrations and the exhaustion, I had cause enough to act out.

Jane and I both knew we would make mistakes…

But I can let none of it go. I carry it with me like a remembered walk in the New Hampshire woods or the feel of her hand in mine. A life together is made up of both the good and the bad moments. I don’t get to keep the joy without equally embracing the hurt.

Relationship and mistakes

We made so many mistakes. And yet I doubt repairing those errors would have changed much for either of us. Doing the operation in October instead of November might have bought us a few more weeks–or cost us the weeks we did get. Discovering her cancer in February might have bought us a couple of months–or not. And what quality of life would those months have had?

But I can let none of it go.

Sometimes, ignorance really is better than knowledge when all knowledge grows is greater grief and greater frustration because there is nothing to be done. Those things fester into anger and hate that helps no one, given time. Seeing anger and hate in the garden of our love would have killed us both even more than Jane’s death has.

Relationship to today

But today…today is Worldwide NET Cancer Awareness Day. It falls, as it does every year, on the monthly anniversary of my wife’s death. It falls, as it does every year, on the day before the trip to Dana-Farber that always marks, for me, the beginning of the end.

We made so many mistakes.

On November 13, we would sleep together for the last time. On November 14, I would take her to the hospital. On November 15, she would have the valves on the right side of her heart–destroyed by her cancer–replaced. She would awaken on November 16. Part of me wishes she hadn’t.

The beginning of the end

On November 17, we would celebrate her 56th–and last–birthday. She would tell the nurses and doctors she got a new heart for her birthday.

She would awaken on November 16.

That night, she would suffer her first carcinoid crisis, though we would not realize it at the time. I would stay awake with her for 38 hours. She would recover, but she would never be the same. Twenty-two days later, she would die with me holding her hand and stealing one last kiss.

It took me over five years to get to the point I could begin constructing Jane's Memorial Garden. Our relationship is still so alive in my mind that a part of me refuses to admit she is really gone.
It took me over five years to get to the point I could begin constructing Jane’s Memorial Garden. Our relationship is still so alive in my mind that a part of me refuses to admit she is really gone.

Getting noticed: Marketing NET cancer

awareness, Goals, Marketing NETs

Have you noticed?

We diagnose roughly four times as many cases of NET cancer as we do cystic fibrosis in the US each year. But cystic fibrosis gets noticed. We diagnose roughly four times as many cases of NET cancer as we do MS. But seemingly every county has an MS Walk. We diagnose roughly two-thirds as many cases of ALS as we do of NET cancer each year, but ALS inspired the ice bucket challenge.

…we haven’t had a breakout moment, yet.

All four of these diseases are considered rare, but ask the average person about them and chances are they’ll have heard of three of those diseases. The odd man out is NET cancer–even though it affects more people than any of the other three.

Getting noticed harder than it looks

I’m frustrated by that fact. I’ve written on NET cancer for five years. I’ve gotten reporters and patients and caregivers to write about it. I’ve made videos and PSAs and talked on the radio about it. And when someone is diagnosed with the disease, Walking with Jane is a place new patients often find themselves. But none of those efforts–here or elsewhere–has created more than a tiny ripple outside the NET cancer community.

The odd man out is NET cancer…

I can only imagine the frustration of the people at the NET Research Foundation, who’ve been at this for more than a decade. Nor can I even begin to imagine the frustration of the people at the Carcinoid Cancer Foundation who’ve worked for nearly 50 years to raise awareness of NET cancer.

Who gets noticed?

What does it take to get noticed? A child with a cute story helps–at least it did with cystic fibrosis. The kid heard the name of the disease and turned it into 65 roses. That’s probably not going to help us, sincere have very few patients diagnosed before their 20s.

A celebrity who publicly acknowledges having the disease also seems like a winning strategy. ALS had Lou Gehrig–though the Pride of the Yankees is long dead. Steve Jobs could have filled that role for NET cancer. It didn’t happen–and likely won’t.

Marketing who we are

But MS has gotten there with neither a celebrity nor a cute kid. They’ve built their identity one piece at a time. It would seem that’s what we will need to do.

Our 3-in-3 group gathered today for our monthly meeting. A volunteer with a background in marketing at a large firm joined us. We brought her up to speed on what we’ve done so far. She’s thinking about the marketing problem NET cancer presents.

Why we need to be noticed

We have made progress in recent years. We have online support groups no one imagined 10 years ago. We’ve gotten local TV, radio, and newspaper attention in a number of markets. Students hear about it frequently in med schools. We have several cancer centers with growing NET cancer programs.

But we haven’t had a breakout moment, yet. We need one. We need one so more doctors are aware of NET cancer and think to order the tests we have earlier in the process so we can catch the disease in an earlier, more treatable, phase. We need one that will create a sustained source of income for our researchers. But most of all, we need one for our patients so they can get the treatment and the therapies they need–and deserve.

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let's ride this horse to support the research we need to have to find a cure.
Getting noticed: Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.

Tears won’t always come when you need them

Death, Grief

Tears in my soul

I want to curl up in a ball and cry until I’m out of tears. This morning I woke up alone again  in an empty house. There is a hole in my life that refuses to be filled, no matter what I do.

 It informs all that you do–and all that you are.

I wish I didn’t care. I’d like to sit in my chair and pretend everything is fine. I’ve spent much of the last month on the road. I go to craft fairs and dinners and meetings. Cancer follows me everywhere.

Tears of loneliness

I went to a luncheon last week at my alma mater. I sat, as I nearly always do, with people I didn’t know. Small-talk always begins with the “What do you do?” question. My answer moves us quickly from light banter to seriousness–or ends conversation all together.

I wish I didn’t care.

No one knows what to say to a widow or widower. No one really wants to talk about cancer. No one really wants to talk about death and what it’s like to hold your wife in your arms as she takes her last breath–or what happens after that.

Tears for the dying

Unless, of course, that is what you, yourself, are facing. The person sitting next to me last week was unaccompanied. His wife has pancreatic cancer. Nearly two years ago, they told her she had six months. I gave him my phone number.

‘What do you do?’

Literally and figuratively, we all hold the hands of the dying in our lives. But no one holds the spouse’s hand; no one holds the children’s hands. It’s the loneliest thing in the world. And then the hand you’ve held is gone between one breath and the next.

Tears of the numb

Sometimes, you cry. Sometimes you are too numb for tears–and you feel guilty about that because you think you should feel something–anything. But you can’t feel the worst wounds. It’s your body’s way of protecting you. Sometimes grief is so great, your mind does the same thing.

…we all hold the hands of the dying…

I’m still numb. Nearly six years later, I’m still trying to cope with Jane’s death. It’s awkward. I lost two people this summer I hardly knew compared to Jane. We worked together on NET cancer things. I cried when they died.

The tears that won’t come

Sometimes, when I stand at Jane’s grave or look at her picture, I feel tears in the corners of my eyes. Only rarely do they come down. My soul is afraid to let them come–terrified that the full force of my grief will take me to a place I can’t return from.

I’m still numb.

Two or three times the grief has overwhelmed me and I’ve cried uncontrollably for a few minutes. Then the terror inside me clicks and reels me back in. I want to be done with this. I want it all to go away. It is the classic, uninvited, guest who never leaves.

Fearing the tears

But if it left, what then? Is the house less empty? Does the loneliness vanish as though it never was? Or does life drag on like the steppes of Russia with everything tasting like mashed potatoes?

It is the classic, uninvited, guest who never leaves.

This week, seven years ago, Jane went back to work after a month of fighting the H1N1 flu and pneumonia. This week, six years ago, we were enjoying the last few days of relative sanity before the decision to move up Jane’s heart surgery put us in separate beds and on separate paths. This week, five years ago, I was preparing to relive those days alone for the first time.

Tears for another

Yesterday, my high school alumni magazine arrived. I have few fond memories of high school–and only two of the people I knew then have in any way stayed a part of my life. I read the magazine anyway–especially the class notes. I’m intrigued by the lives of others fired on similar trajectories from a similar place.

Is the house less empty?

A woman I knew vaguely then, lost her husband to cancer recently. That notice contained the usual words people use in reporting such deaths at the beginning. But the writer went further to describe how the widow was handling things: “They made a great team. His love continues in her heart.”

Tears remind us, don’t define us

I cried then, not for him, but for her. I know, too well, what it means to lose half of who you are; what it means to have that partner’s love continue in your heart. It informs all that you do–and all that you are.

They made a great team.

Tomorrow, I have a meeting with the 3-in-3 group at Dana-Farber. This weekend, I have a craft fair in Tiverton, RI. Next week, I have a scholarship night to attend, a friend to take to the doctor, and a Jimmy Fund event. We fight cancer, one day at a time–one person at a time. It’s what I do.

Tears are not the only way we mourn our lost loved ones. I thought I was ready for the weight of creating Jane's Memorial Garden near the side of the house. Some days, I wonder if I was.
Tears are not the only way we mourn our lost loved ones. I thought I was ready for the weight of creating Jane’s Memorial Garden near the side of the house. Some days, I wonder if I was.

 

 

Zebras are not people with NET cancer

Uncategorized

Bad zebras

The day I learned about zebras for the first time I’d already had a bad day. Jane was in a coma. Her doctors had told me there was nothing we could do but let her go. She’d woken up, briefly, about 6 p.m. I’d told her we would take her off life support in the morning.

It’s the disease that is the zebra…

I hadn’t eaten all day and the nurses knew I probably would not eat the next day. They’d sent me to the cafeteria for dinner. I ran into her heart surgeon on my way back to her room.

‘Think horses not zebras’

“We teach young doctors a saying,” he told me after we went through the ritual greetings between doctor and spouse when both know nothing remains but waiting for death: “‘When you hear hoofbeats, think horses, not zebras.’ It reminds them to look for the most likely cause of a symptom rather than something rare.

Jane was in a coma.

“But sometimes,” he continued, “It really is a zebra. A zebra killed your wife.” We talked for a few minutes more. He tried to console me, knowing no words will ease such a loss, but knowing he had to try anyway. He was a good person.

Remembering the end

I don’t remember much of the rest of that night. I remember every minute of the next day in exquisite detail. I remember reading to Jane, singing to her, talking to her, holding her hand and catching her last breath in a final kiss. I remember the phone calls. I remember how numb I felt–and how numb I stayed for months–maybe years–afterward.

‘A zebra killed your wife.’

Someone asked online this weekend how people in the NET cancer community felt about being called zebras. I didn’t respond to that post because I didn’t want to hijack the conversation. I dislike the term–and have from the start. But my reasons are complicated and not easily reduced to a few sentences without context.

Zebras and lies

In one sense, a zebra didn’t kill my wife. Rather, it tortured her. It kicked her slowly to death over a period of decades. She was sick the day we met, sick on our first date, sick on our wedding day, sick on our honeymoon, sick on every vacation–sick every day of our lives together.

I remember holding her hand… 

A zebra didn’t kill my wife, ignorance did. None of her doctors knew enough to diagnose her until she was all but in the grave. They remembered the adage they’d been taught. They forgot zebras have hooves that make a distinctive sound.

Zebras and neglect

Jane died of “benign neglect.” She died because we, as a nation, decided making war was more important than curing diseases that only afflict a hundred-thousand people at a time.

A zebra didn’t kill my wife…

And that’s not a zebra–that’s criminal negligence none of us can do anything about because we can’t sue politicians–and won’t replace them with people who actually care.

Zebras create illusions

I hate the medical use of the word “zebra” because it lets us hide behind the cute image of a largely harmless creature that only becomes vicious when we get too close to it. And if we don’t get too close to it we never see what it really is and how much suffering it really causes.

Jane died of ‘benign neglect.’

Telling me a zebra killed my wife may have consoled her doctor. It did help me understand what had happened and why no one had caught it. But I was not consoled by those words. They did not make watching Jane die any easier.

Zebras steal our humanity

Our community’s use of the term also rankles me because it dehumanizes patients and what they go through. Patients are not a herd of animals.

…I was not consoled…

They are individual human beings suffering through a disease that cripples them socially and emotionally, as well as physically. They have families who stay up with them through the insomnia, search for public bathrooms with them in the face of impending diarrhea, and hold their hands while they are dying.

Stealing from other zebras

And we’ve appropriated a term for our use that belongs not only to NET cancer, but to literally dozens of other cancers and hundreds of other diseases. A zebra killed my wife, but different zebras crippled a very dear friend and the daughter of another, while two others struggle with the impact of a fourth and three other zebras have killed people I cared about.

Patients are not a herd of animals.

Sometimes–and understandably–our zeal to destroy NET cancer causes us to forget those other, equally devastating, zebras around us.

My zebra guilt

Of course, I’m as guilty as anyone of misusing and exploiting the term. The zebra has all kinds of marketing potential and I’ve used it shamelessly, despite my misgivings. We walk with our zebra banners and sell our zebra-themed merchandise at craft fairs and other events.

…we’ve appropriated a term…

People like our Walking with Jane logo but they don’t line up to buy items emblazoned with it. It works on this website and on our letterhead, but no one is going to hang it on their Christmas tree. I get it. Cute animals sell.

People are not their diseases

But it’s the disease that is the zebra–not the people who have it. Anything that lets anyone forget the human faces of those who have the disease gets in the way. NET cancer patients are not cute animals with stripes. Nor are the other patients dealing with zebra diseases.

I get it.

We need to put human faces on NET cancer so the outside world never forgets the human suffering involved. We need to do that with every disease doctors label a zebra.

From a marketing standpoint, zebras sell better than cancer cells or a list of symptoms. But we must not mistake the marketing tool for the disease.
From a marketing standpoint, zebras sell better than cancer cells or a list of symptoms. But we must not mistake the marketing tool for the disease.

Hours of joy, hours of heartbreak

awareness, Death, Grief

Good hours

The daylight hours of Saturday went pretty well. I set up a table at a local craft fair and, while sales were not particularly good, I talked to lots of people about NET cancer who had never heard of it before.

Someday, perhaps, I will love again…

Where I come from we call that a minister’s delight. It means you can use an old sermon and no one knows but you. A new audience reacts differently and the talk feels new even to the speaker.

Better hours

I also read Matt Kulke et al’s –and that certainly boosted my spirits. We still have a lot to learn about this new drug that stands before the FDA for approval between now and spring. But it clearly will improve life for many patients.

…we call that a minister’s delight.

It’s not a cure, but, at first reading, it seems to have cut the number of daily bowel movements in half for many patients. It also cut 5-HIAA levels significantly. I’m planning to write a more detailed piece on the study later–I want to review it more closely–but it brightened the day considerably.

Dark hours

I came home, finally took the Halloween decorations down, and made myself a light dinner. I ate at the small kitchen table. A week’s worth of mail buries the dining room table–and I only eat there when I have company anyway.

It’s not a cure…

Then the sun set and the loneliness settled in as it does most Saturday nights. Jane and I didn’t usually do anything special on Saturday night. We’d sit in the living room and read or watch what we’d taped over the week. She’d put her feet in my lap and I’d rub the soreness out of them.

Consequential hours

I miss that. It seems inconsequential when I look at it logically–but it is somehow the most painful reminder of what is gone. I’m alone on Saturday night in ways I simply am not the rest of the week–even when no one is here.

…I’d rub the soreness out of them.

I would not wish these nights on Satan himself–even as bad as the Bible makes him appear. Even Judas deserves better. But every widow and widower lives in this bit of Hell.

Loving hours

People ask me, periodically, how I do what I do. I shake my head because I don’t feel I do enough. I haven’t figured out how to keep people out of this Hell I live in. To me, that means I’ve failed: failed to keep others healthy and alive, failed to keep someone from losing the one they love.

Even Judas deserves better.

Love defines my life. The search for love shaped who I became and how I became who I became. To live without that defining love–the love Jane and I shared every day–tears at me every second.

Loving hours

I envy those of you who have that love in your lives. I will not take it from you. Instead, I will do all I can to keep your love alive in the way mine cannot be. That means finding answers to this disease–and all the others.

Love defines my life.

Someday, perhaps, I will love again as I loved Jane. That does not feel likely on a Saturday night in November. The expression, “Once burned, twice shy,” comes to mind. Love requires leaving yourself open to a repeat of this kind of pain. But I would not give up what we had even to avoid this searing emptiness.

 

The hours of our lives can cast shadows on even the most beautiful of memories. Lost love does that, especially.
The hours of our lives can cast shadows on even the most beautiful of memories. Lost love does that, especially.

Buy a NET cancer cure for everyone

awareness, Fundraising, Marketing NETs, NET Cancer Awareness Day/Month

What would you buy with PowerBall win?

I buy the occasional MegaMillions and PowerBall ticket. I know the odds of my being struck twice by lightning are better than my chance of winning. But it’s not like I’d keep the money for myself–at least not very much of it. I might buy a tiny condo in the city so I wouldn’t have to drive quite so far quite so often.

…what we really need is a March of Dollars.

But I’d really like to buy a cure for several diseases–first and foremost, NET cancer–and that’s where the money would really go. It’s where every spare dime goes now. I’d just like to have a lot more spare dimes.

Leveraging what I have

I’m not wealthy. I live frugally and try to spend wisely when I buy something. I’d rather pay for a good chair and never have to replace it than a cheap one I have to replace every five years. I push my own lawn mower, bake my own bread, raise some of my own food. It all creates money I can spend on the things that matter.

…I’d really like to buy a cure…

And where I can, I increase those donations by leveraging them to create more money. I’m a decent photographer, so I make limited editions of my best work. I frame them and sell them at craft fairs. I take items other zebras and their friends make and take those items with me as well. Every penny that comes in goes to fund NET cancer research.

Other methods I try to use

My friends and I put on dinners and golf tournaments and other events, each of which doubles or triples the initial investment. I write letters and send them to people I’ve never met, hoping they will be moved to make donations to the cause. I give speeches I hope will move people to open their wallets.

I’m not wealthy.

I’m trying to write a book about grief. It isn’t going very well. Last year it left me in such a funk I had to walk away from everything for a while. Reliving the end of Jane’s life and coming to terms with her death is still too painful to deal with in large doses. But when it is done and finds a publisher, half of what it makes goes to NET cancer research. The other half helps a grief group keep going that has helped me get through the roughest parts.

Turning thousands to millions

I put solar panels on my roof last winter. The company that did the work offers me $1000 for each person I get to sign on with them. I think solar is a good idea whether people believe in climate change or not. Burning coal isn’t good for my lungs–or anyone’s. Any bounty I get from them is already pledged to NET cancer research. No one has taken the bait yet…

I write letters and send them to people I’ve never met…

Fourteen months ago, the NET cancer program at the Dana-Farber Cancer Institute asked me to volunteer to chair a major fundraising campaign for NET cancer research there. The goal is to raise $3 million over the course of three years. From the perspective of someone whose annual income never reached $70,000, $3 million feels like a lot of money.

Buy big by buying small

From the perspective, however, of someone who has seen what research costs, it’s a mere starting point–and nowhere near what we really need to raise. There aren’t a lot of people with deep pockets out there interested in NET cancer, so I know an awful lot of it has to be raised a few dollars at a time.

…$3 million feels like a lot of money.

When my grandmother came to Massachusetts for the first time, she insisted we take her to see the USS Constitution, which lives in Boston Harbor. She told us that, as a small girl, she had donated her milk money to restoring the ship. She wanted to see what her investment had bought.

One person at a time

In the late 1950s, I went door-to-door in my neighborhood, collecting dimes from our neighbors for the March of Dimes, FDRs plan for defeating polio. Today, no one would allow an eight-year-old to do such a thing, but it was how we defeated polio.

…a few dollars at a time.

I think of those two events frequently as I write my letters or sit behind a table at a craft fair. Two weeks ago, I spent eight hours raising $75. I had two conversations about NET cancer that raised awareness in four people who had never heard of it before. I handed out another five pamphlets on the disease.

A March of Dollars

It wasn’t much for an eight-hour investment. But it was $75 more than we started with and at least another nine people who heard about NET cancer. Even counting in inflation, it was a lot more than I raised in my eight hours of knocking on doors in 1960.

…it was how we defeated polio.

But what we really need is a March of Dollars. If we could get just $1 from every person in the US, we’d have more than $325 million for NET cancer research. We solved the riddle of polio for less than that a year. Maybe we could buy a NET cancer cure for that.

Mailings are labor intensive but can NET as much as $6000 for a $600 investment. I don't buy what my friends and I can do ourselves.
Mailings are labor intensive but can net as much as $6000 for a $600 investment. I don’t buy what my friends and I can do ourselves.

 

Money funds research–and we don’t have enough

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

Research costs money

Everyone wants a cure for cancer. But virtually every cancer requires a different cure. What works on one form of breast cancer doesn’t always work on another form of breast cancer, let alone a melanoma, lung cancer or pancreatic cancer. While people are part of the answer to cancer, so is money.

Research is blindingly expensive. Last year, the US government alone spent $699 million on breast cancer research–and has spent nearly $4.5 billion since 2012. That does not include the billions raised and spent by foundations dedicated to that form of cancer. We have some breast cancers we can cure, assuming we catch them early enough, but we can’t cure all of them.

Money is the root of it all

Compare that to the roughly $15 million total from both government and private sources for NET cancer this year and you’ll begin to understand part of why we are not swimming in NET cancer therapies. Add to that the reality that NET cancers are unlike almost any other form of cancer we’ve encountered and you have an iron-clad reason for the frustration both patients and researchers feel.

In addition, that $15 million number is a huge jump from the roughly $7-8 million raised and spent from all sources in 2015. Numbers from prior years are actually far worse. In fact, there was no federal money for NET cancer research from 1968 to 2008–and very little private money, either.

Weighing the voices

That reality both terrifies and angers me. We spend more per diagnosed patient on prostate cancer, on lung cancer, on breast cancer–than we do on NET cancer–and it isn’t by a few dollars. What we spend on NET cancer does not amount to a rounding error on what we spend on any one of those forms of cancer.

But the logical part of my mind does get it. When we can see tens of thousands of cases of those diseases–compared to roughly 16,000 new diagnoses of NET cancer every year–the shouts of those patients and their families drowns out other voices in the ears of funders.

The myth of the secret cure

This summer, I was out putting up posters for our annual miniature golf tournament. I went into one shop to ask if they could put one up for me. Now sometimes chains have policies against advertising local events. Sometimes stores have nowhere to put up a poster. Sometimes they limit things to local religious groups or veterans’  groups–and I get that.

But this man’s answer stunned me: He told me he believed, given all the money we’ve spent on cancer research, that we already have a cure for cancer–that the drug companies are holding out on delivering it because they are making so much money on the drugs we have that delivering a cheap cure is not in their best interests.

In the weeds

I’ve spent a lot of the last six years learning about cancer and how complex a thing it is. I spend a lot of time with oncologists and researchers. I see how the loss of each patient tears them up. And I know if a cure existed and drug companies were withholding it, those doctors and researchers would not let that stand.

So where does all that money go? Let’s start with what it takes to run just one small lab. I got to spend one whole day last spring in a research lab at the Dana-Farber Cancer Institute in Boston. I was there to observe and take pictures for a project we were working for 3-in-3: The Campaign to Cure NET Cancer–a fundraising project I serve as volunteer chairperson for.

The cost or running one lab

Eight people worked in that lab on a variety of research projects. That day, most were working on NET cancer research of one kind or another. They weren’t testing drugs–they were doing the kind of basic scientific research that unravels how NET cancer works. Their work may uncover a way to cure NET cancer eventually–or, more likely, another way to slow the disease down so that patients can live a longer time with a better quality of life.

They weren’t working full-time on NET cancer. DFCI’s NET cancer program doesn’t yet have the money for that. Running a single eight-person lab costs between $2.8 and $3.8 million, depending on what kinds of supplies and equipment the work they are doing requires. About half that amount goes to salaries and benefits.

What $15 million can buy

What that means, in funding terms is that if we took all the money available for NET cancer research in the US–that $15 million we take about above–we could fund about four full-time labs.

But we don’t get to spend all of that money on basic research. Drug companies won’t pay for a drug trial until they are fairly certain that trial will be successful. Phase 1 trials–and many Phase 2 trials–have to be funded from that $15 million as well. Even a small trial can run to $3 million.

Increase the cash, increase research

Needless to say, we can run a lot of trials and fund a lot of research labs with $1 billion a year. But all that money has not 100 percent cured breast cancer or lung cancer or prostate cancer–nor even come close to doing so.

If we want to really move out of the Dark Ages of NET cancer care, we need to find a lot more money for research than we are currently coming up with. Regardless who wins the election next week, we can’t count on much from the federal government. We need to figure out how to raise far more private money than we currently do.

Live slicing of NET cancer tissue provides a new window into the disease. Both the equipment and people to do that kind of research costs significant money.
Live slicing of NET cancer tissue provides a new window into the disease. Both the equipment and people to do that kind of research costs significant amounts of money.

One trial could be NET cancer key

awareness, Goals, Jane, Marketing NETs, NET Cancer Awareness Day/Month, NET cancer experiences

The polio vaccine trial

I lived in Pittsburgh, PA in the 1950s. I remember a summer when we were not allowed to leave the yard. I remember standing in line for the first mass inoculation with the Salk the polio vaccine. My parents knew my brother, sister, and I might get polio from it. They took that risk.

…our most important resource…

Today, polio is a nearly dead disease in this country–and in much of the world. It is dead because people were willing to spend the money to find a solution to it–and others were willing to put their lives–and their children’s lives–on the line to prove that solution worked.

One man’s trial

That drive started because one man decided to do something about it. He wasn’t a scientist. But he knew first-hand about polio because he’d survived it and it’s aftermath. He could not stand without braces. He spent most of his remaining life confined to a wheel chair.

They took that risk.

He started a little charity he called The March of Dimes because all he wanted was one dime from every American for polio treatments and research. He did a lot of other things in his life. He guided the United States through the worst years of the Great Depression and World War II.

A personal trial

Laying the groundwork for the end of polio is something we forget about Franklin Delano Roosevelt. He died years before Jonas Salk developed his vaccine. He died years before I stood in a line waiting to be injected with an experimental fluid designed to protect me from the disease.

He wasn’t a scientist…

What I remember most vividly was how big the needle looked–and how scared I was of it. I didn’t know what polio was. I had never known anyone who had it. But I knew my parents had kept us all in the yard for weeks one summer because some people in town had caught it.

The first time my universe changed

Years later, I met a man who had  polio in his youth in the days before the vaccine. He walked with the aid of a cane and a crutch. His one good leg dragged the other up the stairs and down the hall to his classroom every day.

I didn’t know what polio was…

The universe changed for me and many others because of a single trial of a single drug in a time I can barely remember. That trial meant I would never get polio–and that no friend of mine would ever get it. It’s why I never hesitate when someone asks me to get involved with a scientific trial–even when it puts my life or health at some kind of risk.

Jane’s personal trial

Jane shared that attitude for reasons of her own. She knew she was in serious trouble when she heard the diagnosis. She quickly learned she had cancer so advanced she was not likely to live long. There were no trials she qualified for.

That trial meant I would never get polio…

So she told her doctors to learn everything they could from her in every way that they could. She made sure I understood precisely what she meant by that. She wanted to beat NET cancer–but if she couldn’t do that and live, she wanted to make sure her death would help others with the disease–and help researchers find a way to beat NET cancer once and for all.

Our most valuable resources

There are lots of things we need to beat NET cancer: We need more doctors, researchers and lab techs; we need more labs doing both basic research and the translational research that turns that basic research into new drugs and new treatments; we need greater awareness among both doctors and the general public; and we need the cold hard cash that pays for those things.

She wanted to beat NET cancer…

But we need more than scientists and donors. We need patients and caregivers who are active participants in both treatment and awareness building; we need people willing to tell their stories beyond patient forums and support groups; we need blood and tissue samples; and we need people willing to take the same risks my parents took with the lives of their children–and their own.

The power of one trial

My wife killed her NET cancer the only way anyone with an advanced form of the disease ever has: she died and took it with her. But the way she died created new knowledge that has extended and improved the lives of other NET cancer patients. Some of you reading this are the unknowing beneficiaries of that knowledge.

…we need more than scientists and donors.

If we are going to kill NET cancer, none of us can sit on the sidelines, whether we are patients or caregivers. Awareness won’t happen by itself. Cures won’t happen without people willing to take part in trials. In the fight against NET cancer, our most important resource–fair or not–is each other.

There was no trial Jane could take part in, so she found her own way to move the science forward.
There was no trial Jane could take part in, so she found her own way to move the science forward.

Patients too young to let dreams die

awareness, Carcinoid/NET News, Goals, NET Cancer Awareness Day/Month, Treatments

Dreams of a future die

Jane was too young to die.  Jane was 56. I was 58. We were preparing to leave teaching to spend time with each other. We planned to write some books. We had dreams.

Things are better than they were in 2010…

We were not done living or learning or teaching or dreaming. Neither are most of the NET cancer patients I meet. They have careers that matter, children that matter, dreams that matter. Instead, most face a years-long struggle against an incurable disease that slowly strips them of their dignity, as well as their energy and purpose.

Dreams still nightmares

We are still in the dark ages when it comes to NET cancer, as Jill Watson so ably points out in her comment on yesterday’s post. We have made progress, but not enough to make a big enough difference,

We have no cure. We have few ways to slow the progress of the disease. We have few ways to improve patients’ quality of life. We still lack any reliable means of detecting the disease early enough to make a curative difference.

Dreams of greater awareness

Most primary care doctors still have never heard of NET cancer. Too many of those who have, think of it as, “a good cancer to get.” They see it as slow-moving and tout the idea you can live for years with it. They don’t experience what those years can be like.

Too many oncologists know too little about the disease as well. The things they know are what they heard in medical school. They’ve rarely actually seen a case and are equally rarely up on the latest research or new standards of care.

Changing reality

But 2010 really was a turning point in the treatment of NET cancer. In June of that year, the FDA approved two new drugs–everolimus and sunitinib–for pancreatic NET. Those were the first new drugs approved for NET cancer in nearly 20 years. Those drugs have since shown an impact on other forms of NET as well.

Sandostatin–the month-long form of octreotide–would soon be joined by lanreotide, reducing octreotide to a mid-month rescue shot for many patients. One of the worst parts of my day was watching Jane inject herself in the belly with octreotide. For many–though not all–patients, those  days were drawing to a close.

Moving from dreams to reality

Based on a Phase 3 trial, telotristat etiprate should receive approval in the next few months. It also addresses NET cancer symptoms and seems to slow the progress of the disease for many patients.

While for patients in Europe–or those with the means to get there–PRRT had been an option for many years, trials of that radiation treatment had not yet begun in the US when Jane died. The successful completion of those trials in recent months should bring FDA approval shortly for an even better form of that therapy. Again, it doesn’t work for everyone–and is in no way a cure–but its impact on quality of life for many is significant.

Delaying tactics, not cures

Patients with other forms of cancer had tried liver embolization in 2010, but no NET patients had. Today, for those with liver mets, bland, chemo, and radiation embolization therapy have become fairly common–and fairly successful. But, again, not for everyone.

To patients and their families, none of those things is enough. Each improves quality of life. Each increases longterm survival. None of them represents a cure. Nor do the early returns on other therapies in the works.

Diagnostic dreams could fuel a cure

We do have one therapy that offers a chance of a cure: early surgery. But it is rare the tumors are found early enough for surgery to do anything more than what the other therapies do: extend life and improve the quality of that life. In 2010, we had no decent means of detecting the presence of the cancer before it reached an advanced stage.

Today, we are a little better. Jane’s tumors were invisible to every scan her doctors did before the tumors exploded into her liver. Within two years of her death, the PET octreoscan–using octreotide as a contrast agent–made many tumors more visible. Recently completed trials of the Gallium-68 scan are even better.

Dreams of a simple test

But for those tests to reveal the tumors, a primary care physician has to know enough about NET cancer to know to order those tests. What we really need is an inexpensive drug test that could become as routine as the test we use to check for prostate cancer. That kind of test would be a game-changer.

None of this offers any real solace to those fighting the disease at this moment. As Jill points out, the slow pace of getting an idea from the lab to every patient’s bedside is agonizing. But things are getting better. There is far more in the pipeline than there was in 2010. And every slowing of disease progression buys time for patients to get to that next treatment.

Tomorrow is coming

But there needs to be more. That can’t happen without more doctors, more researchers, more lab space, and more NET cancer centers–all of which requires more resources than we have now.

Tomorrow, we’ll look at what resources we had compared to what we have now. Things are better than they were in 2010–but not as good as they need to be.

One of my dreams is that some day no one will place a stone like this in their garden in memory of someone who died of NET cancer.
One of my dreams is that some day no one will place a stone like this in their garden in memory of someone who died of NET cancer.