Category Archives: NET Cancer Awareness Day/Month

Challenge sometimes is just keeping up

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

What this challenge is teaching me

I think I need some help. This challenge has reminded me how difficult–and how undermanned–our fight against NET cancer remains. I write pretty quickly, but each of these posts represents at least three hours of writing time. Then I spend another hour putting in links, break-heads, and pull quotes before posting it to various pages and support groups. And often, before I write, there is research that needs to be done.By the time even one of the shorter pieces is ready for your eyes, it has 4-5 hours of work in it. I’ll spend another hour or two fielding comments and thanking people for sharing pieces every day.

If you’re interested, let me know.

I needed to update this website this month, as well. In reviewing what we have, I realized that most of the information on the other pages here is over a year old. I need to find the time to look at more up-to-date videos and check to see which links to other pages still have value–or still work. And lists of foundations and blogs and cancer centers all need updated as well. Gradually, I’m beginning to understand why most foundations and organizations have at least one person–and often more–doing nothing but social media and website stuff.

The fundraising challenge

But maintaining this website and keeping up a social media presence are not all I have on my plate. Walking with Jane tries to average one fundraiser every month. Most of those require a press release for local media outlets. Most also require I design and print posters and get them up in local businesses. Many events require tickets get designed and printed as well. Money gets counted and taken to the bank. The bookkeeping required even for an organization as small as Walking with Jane, makes me crazy.

I needed to update this website this month…

Then, we do three mailings major mailings a year and three smaller ones. Our holiday mailing works purely to bring people up to speed on what we’ve done over the course of the year. The other two major mailings prospect for individual donations to our Jimmy Fund Walk effort. The smaller ones recruit crafters and others for our annual yard and craft sale–and sponsors for events like our Jimmy Fund Walk t-shirts and our miniature golf tournament. I craft every letter and every envelope gets stuffed by hand. More bookkeeping follows.

Other WWJ challenges

Next, we go prospecting for grants to help fund the awareness piece. Next year, we hope to send out copies of two pamphlets to every primary care doctor in New England about NET cancer. If we can find the funding, I’d like to reach every primary care doctor in the US and Canada. I’d go beyond that if I could find the money and someone to do the translations.

…we do three mailings major mailings a year…

Throw in Form 990, an annual board meeting, several craft fairs, a summer gathering for volunteers, and you begin to see the scope of the challenge on just the Walking with Jane front. But I have other NET cancer irons in the fire.

The Dana-Farber challenge

I also chair 3-in-3:The Campaign to Cure NET Cancer for the Dana-Farber Cancer Institute’s  Program in Neuroendocrine and Carcinoid Tumors. I meet with doctors and staff there once a month to plan and execute the various parts of that effort. That has included designing a presentation aimed at businesses, civic and fraternal organizations. We are also creating brochures and public relations materials. A series of podcasts may happen next year. We also look for other ways to raise awareness of NET cancer and the latest research.

…we go prospecting for grants…

That work also involves serving as group leader for the #cureNETcancernow group and captaining our NETwalkers Alliance team for the Boston Marathon Jimmy Fund Walk. Next year, I will also take on at least part of the Pan-Mass. Challenge as we try to start a Program-focussed team for that biking event. Fortunately,  some overlap exists there since much of the fundraising we do goes to support Walkers on our teams.

The training challenge

Of course the Walking–I do 26.2 miles every year–and now the biking, require year-round training at my age. I do more in the spring and summer than I do in fall and winter, but I try to get some vigorous exercise every day. In the summer, I try to do at least one 20 mile hike a week, leading into the Marathon Walk at the end of September.

I also chair 3-in-3…

I also try to spend some time every week talking individually with NET cancer patients and monitoring the various support groups. I try to read a few NET cancer blogs each week as well. And, of course, I have the scientific papers to wade through.

The life challenge

Meanwhile, I somehow find time to have something that looks like a life. I work on the landscaping, spend time in my garden, read what Jane used to call “mind-candy,” and take some photographs. I like to cook and bake my own bread. And I write things other than NET cancer posts and try to keep up with what is going on in the outside world.

…I do 26.2 miles every year…

So it’s no wonder I always feel like I’m running behind. I’m clearly trying to do too much. And yet, I can’t see any way to drop any of this. It all needs doing and most of the people I know who could help have equally daunting schedules in front of them. We all do what we can.

Can we get a little help here?

Now if you’d like to get involved with any of this stuff, I need whatever help I can get. Some people have written pieces about their experiences with various therapies. Others have sent me their crafts to take on the road to the various craft shows I attend. All the money from those goes to NET cancer research. I have friends who come in to stuff envelopes a couple of times a year.

I’m clearly trying to do too much.

Interested? Let me know.  You can reach me at walkingwithjane@gmail.com. As one of our ministers used to say, “Many hands make light work.”

We try to average one fundraiser every month. That is just one of the challenges involved in ou fight to fund NET cancer research.
We try to average one fundraiser every month. That is just one challenge involved in ou fight to fund NET cancer research.

Caregivers have different set of problems

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

The weight of caregiving

We focus most of our energy–and rightly so–on the needs of patients. Their lives are at risk and we need to find ways to help them. We need treatments to ease their symptoms, slow the course of the disease and, ultimately, cure it. Many of us, when we hear the word caregivers, think of doctors and nurses and technicians–at least I always did until Jane got sick.

They are fighting for their lives.

But the bulk of the day-to-day care of someone with a chronic or lingering or debilitating illness falls on ordinary people. Lay caregivers get no specialized training. You simply wake up one morning and discover your entire world has changed. Suddenly, you need to learn the details of a disease you may have heard of but know nothing about. Sometimes, you draw a disease like NET cancer about which no one seems to know anything. You have to juggle a job while taking on all the chores a significant other either did or helped with–as well as your own.

The emotional and physical toll

In an instant, you become both the emotional and physical support of someone you care deeply about. Their pain becomes your pain. You bottle up your own pain and negative emotions because the last thing the person who is sick needs is to see what their illness is doing to those around them.

Lay caregivers get no specialized training.

People tell you to take care of yourself so you can keep helping the patient, but no one really tells you how to do that in a practical sense. And even when you figure out how, you feel guilty because the person you are caring for never gets a second off from their disease.  And sometimes you watch as every day the person you care for gets weaker and weaker–until you have to dress them and change their soiled underclothes and bathe them. It’s not that you mind the work, it’s how awful it is to watch someone you care for become an infant.

Personal impact

From the day of Jane’s diagnosis to the day of her death, I lost more than 20 pounds. Emotionally, I was–and still am–a mess. When I was with her, I was generally patient and gentle and kind. There were times, though, I failed. I carry the guilt of those times with me, even now, nearly six years after she died.

People tell you to take care of yourself…

When we were apart and I didn’t have to be perfect, I could fly off the handle at the slightest miscue. I was walking across the lawn one afternoon. I was buttoning up the outside of the house for the winter. My foot went into a hole. Every ounce of repressed anger came out in that instant. I couldn’t yell at Jane, couldn’t yell at her cancer–but I could pound my fist into the ground over and over again.

Outcomes

And if you get lucky, the person you love survives. They regain their strength and become someone similar to who they were before. They are not the same person–you don’t look death in the eye and return unchanged. But love abides because of what you’ve both been through. Neither of you is unchanged–and it makes you both stronger.

…I lost more than 20 pounds.

And if you are not lucky, you pick out a coffin and plan a funeral service. You choose a burial plot and a headstone. You put on a brave face and thank people for coming to the wake or the funeral service or the burial. And you cry yourself to sleep at night until you find a way to deal with the empty chair at the table that represents the void in your life.

Tears on the road to Boston

I’m still crying. The tears sneak up on me at the strangest moments. I drove to Boston late yesterday afternoon. I pulled into a rest area to check a phone call. I’ve stopped there before without incident–but suddenly I’m crying, remembering our last trip to Boston together the day before Jane’s surgery. We’d stopped there because Jane needed to go to the bathroom.

You put on a brave face…

I’ve done grief groups, had counseling, and I still get ambushed by grief like that. Nearly everyone I know has largely moved on from Jane’s death. For me, the numbness has just begun to wear off–and the real hurting has just begun. The pain is a good thing, though. It means the wound has healed enough to hurt.

The unanswered need

We have support groups for patients. We have support groups for grief. Caregivers lurk in both. Too often, they have nowhere else to turn for the solace and support they need. But a caregiver cannot really talk about what they experience in either place. We’re determined not to let patients know what we are feeling in our darker moments. They are fighting for their lives. And grief groups aren’t quite the right forum for that either. They are about the pain of loss, not the pain of having failed.

I’m still crying.

Support groups for caregivers do exist, but they are too few and too far between–and often focussed on a particular disease. NET cancer caregivers need such a group, but we are so scattered that getting together–other than online–is difficult. But we really do need such a group where we can let out hair down without inflicting our pain on the patients who are our loved ones.

On the surface, caregivers may appear serene when taking care of a loved one. that serenity comes at a price.
On the surface, caregivers may appear serene when taking care of a loved one. That serenity comes at a price.

 

Birthday NET cancer thoughts on Jane’s Day

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

Another missed birthday

Jane would be 62 today. She would have awakened to a birthday card, presents and breakfast in bed. That breakfast would have included tea and chocolate croissants. Later, flowers would have arrived and we would go to lunch at a favorite restaurant.

Happy Birthday, darling.

Instead, I’ll visit her grave. I will leave flowers, a card, and three small stones–one for her, one for me, and one for us. My life has a gaping hole in it I think sometimes no one sees but me. I work on NET cancer, I comfort the afflicted and afflict the powerful. I live the best life I can. But there is too little joy in it.

The birthday present I wish I had for her

What I really want to give Jane for her birthday next year is a cure for NET cancer. I want us both to smile at that reality. It hasn’t happened this year–but we’ve made some progress that gives me some small hope. Our understanding of the disease gets better every year, though it seems we will need to find some new approaches if what we are seeing be true.

Instead, I’ll visit her grave.

The money we have for research continues to grow with each passing year. The year Jane died, we spent less than $2 million on the basic research that creates cures. This year we have $15 million to spend in the US. A year ago, we were preparing the launch of 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute. Between now and early December, we should reach our first $1 million in our effort to boost funding for the Program in Neuroendocrine and Carcinoid Tumors at that institution.

Birthday presents in my heart

On November 1, thanks to that effort, Dana-Farber created a new lab for gastrointestinal cancer that will have NET cancer as its primary focus. Our Boston Marathon Jimmy Fund Walk teams raised over $156,000 as part of that campaign. Riders in the PMC Challenge raised nearly another $50,000. And next year, we will do better.

This year we have $15 million to spend in the US.

Private donors outside those two groups will have contributed another $800,000 when all is said and done. Some of those donations are big; some are small. Every one of them counts because every dollar brings us closer to the understandings we must have. Patients deserve to live full and normal lives without NET cancer hanging over their heads.

The next birthday

At Dana-Farber, we need to build on that success. By Jane’s next birthday, I hope we’re talking about a $1.5 million addition–or more–to what we raised in this first year. I’d be thrilled if the three-year goal were reached in two. But it won’t happen without help from lots of other people who are not yet involved.

…a new lab for gastrointestinal cancer…

And we need to replicate the success of 3-in-3 at other NET cancer centers, both in the US and abroad. We need to turn that $15 million we raised for NET cancer research nationally this year to $30 million next year. To do that, we need every support group and small foundation to do whatever it can. For some of us, that will be as simple as writing a check.  Support your local cancer center’s program or  larger umbrella groups like the Carcinoid Cancer Foundation or NET Research Foundation.

Creating the NET future

For others, it may be organizing a NET cancer Walk or piggybacking onto a larger and more publicized event with a team or group of teams that earmarks their money to NET cancer research. Still others may run craft fairs or dinners or other events aimed at raising money for NET cancer and raising awareness about the disease in their community. And still others may find other ways, like selling candy bars or going door-to-door to share their story with their neighbors.

…we need to build on that success.

We need both patients and caregivers to understand the importance of taking part in trials–not only for their health, but for the health of others. Jane said, “I want to beat this–I want to be the first person to beat this. But if I can’t, I want doctors and researchers to learn everything they can from me about this disease and how it works.” There are times I wish she had let herself go earlier. But I know what we learned because she kept fighting was worth the extra pain she went through to get it. She was–and is–my hero because of that.

In our hands and in our hearts

What we do and how much money we raise as individuals matters less than doing all we can to take control of our own disease. After five years of working in this vineyard, I know how much–and how little–we can expect from the federal government and the major cancer charities. We have to realize that we are MS, we are ALS, we are Cystic Fibrosis–and take our future in our own hands whenever–and wherever–we can.

She was–and is–my hero…

The future of NET cancer research, the future of NET cancer treatment, the future of a NET cancer cure rests in our hands. If we don’t lobby for increased government spending, no one else will. If we don’t do the spade work to raise private money for research, no one else will. If we don’t volunteer for trials, no one else will. We are all walking with Jane–and none of us walk alone.

Happy Birthday, darling.

One of the things we might have done on Jane's birthday is go watch the waves come in on the beach. But we need to build a different kind of wave to find a cure for NET cancer.
One of the things we might have done on Jane’s birthday is go watch the waves come in on the beach. But we need to build a different kind of wave to find a cure for NET cancer.

Crisis and calm in the cardiac ICU

awareness, Death, Jane, NET Cancer Awareness Day/Month, NET cancer experiences

Before the first crisis

I was sitting just to the left of Jane’s hospital bed six years ago today. She’d arrived in the cardiac ICU just about midnight and they’d let me in to see her, briefly, about 1 a.m. I’d talked to her doctor about the surgery. He’d seemed pleased, despite the complications they’d encountered, with how things went. There’d been no sense of crisis.

…she kept paying it forward.

They’d warned me what I would see when I entered the room for the first time. Sometimes the pasty complexion and all the tubes and wires cause people to faint when they first encounter it. I spent half an hour there, just holding her hand and whispering sweet nothings. Then they sent me back to my hotel.

Jane wakes up

I slept a few hours but arrived at her bedside a little before eight the next morning. The nurse stood behind his panel of dials and meters, monitoring every vital sign, every drug going in and every fluid going out. I liked him. There was a calm about him I wanted to emulate. I saw that same calm in all her nurses over the next few weeks, even when things collapsed into chaos and crisis. That happened four times before death claimed her.

They’d warned me what I would see…

Now, I held her hand and talked to her. The nurse told me she was unlikely to wake up before noon, but her eyes flickered open within an hour of my arrival. They didn’t stay open long, maybe five minutes, and she dozed off again. But within an hour she was fully awake and alert.

We had a plan

She couldn’t talk with the tube going down her throat to aid her breathing. She couldn’t write with all the tubes and wires she was wrapped in. But we could hold hands and I could tell her what the surgeon had told me. It very much looked like she’d be in the step-down unit by Thursday night–as planned–and I’d be back home and out of the nurses’ and doctors’ way as she began to rehab her heart.

There was a calm about him…

It didn’t happen that way, but we had 30 hours that certainly looked like clear sailing into a difficult but workable future. Yes, her liver was a mess. Yes, her intestines were likely lined with tumors. But we had a plan–and the first part of that plan was going well. Tomorrow, we’d celebrate her birthday as best we could when she couldn’t eat, confident there would be more in the future when she could.

When right turns wrong

By the following day, everything was ready for the move upstairs except locating a bed for her on that ward. No problem: we started taking out the lines and doing the physical therapy as though the move had already happened. And Jane was a more than enthusiastic participant. She kept doing the simple exercises long after the PT people left. They’d told her she could–that it would speed up the process. And Jane wanted to be home by Christmas.

…we had a plan…

And then it all went sideways. At the shift change the new nurse ran the checks every new nurse makes when taking over a patient’s care. They’d taken off the pulse-oxygen monitor in preparing to move Jane to the step-down unit. The exam showed Jane’s blood oxygen levels crashing. They put her back on oxygen but the levels stayed lower than was good. They ran tests, did scans–but could not figure out what was going on.

Carcinoid crisis

I spent that night sitting with her in her room in the ICU. I didn’t sleep–and neither did she. She was in the midst of her first carcinoid crisis, though we didn’t realize it at the time. It was minor, compared to the ones that came later. Those would put her in a coma–and the last one would kill her.

…Jane wanted to be home by Christmas.

Jane never got to the step-down unit. I didn’t sleep at home again until December 10, several hours after her death. I curled up in a fetal ball in my corner of the bed and cried myself to sleep. Then I put on a brave face and went to work planning her funeral.

What we learned

We learned a lot from Jane’s struggles over those four weeks. Doctors rewrote the protocols for heart surgery aftercare on patients with carcinoid syndrome from what Jane went through. People are alive today who might not be because of that. I’m glad about that–a small brightness in an otherwise dark firmament.

Jane never got to the step-down unit.

Jane wanted good things to come from her fight with NET cancer. She wanted her doctors to learn all that they could from her. And she wanted future patients to benefit from her battle with the demon. Even dying, she kept paying it forward.

Walking with Jane was born out of my personal crisis after Jane's death. She always wanted to keep paying things forward. I still do.
Walking with Jane was born out of my personal crisis after Jane’s death. She always wanted to keep paying things forward. I still do.

Awareness creates knowledge and change

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

The emotions of November

I’ve had a mind-shattering kind of weekend. I’ve cursed and shouted and cried, both publicly and privately. I’d like to say I feel much better today, but that would be a lie. I have a tough enough time in November, given all the memories it conjures up. Adding the angst of NET Cancer Awareness Month/Day into the mix only further complicates things.

I sell a piece of my soul for that…

But while moving NET Cancer Awareness to some other part of the calendar would be good for me–and getting it away from the elephant in the room that is October might be good for all of us–it’s not likely to happen. Truth be told, we lose more than 1000 patients to NET cancer every month in the US alone–and diagnose even more. No month or day is a good day when that happens.

Why we need awareness every day

As Ronny Allen argues, “Every Day is NET Cancer Day.” Every day, patients around the world hear some variation on the words, “I’ve never heard of this cancer before.” For new patients and their doctors, the first time they hear “NET cancer” they are launched on a quest for information that raises their awareness–and the awareness of the people around them.

I’ve had a mind-shattering kind of weekend.

But it’s not enough. In fact, I’d argue, that awareness comes too late. The doctors need awareness before they see that first patient. That way they would be more willing to consider the testing that will lead to that diagnosis sooner–or at all. As the people at the Carcinoid Cancer Foundation have said for years, “You can’t detect it if you don’t suspect it.” And you can’t suspect something you’ve never heard of.

Doctors need NET knowledge, too

We have patient conferences where both the newly diagnosed and the long-suffering can find out the latest about treatments and support systems. But we have nothing similar–no real in-service training–for experienced primary care doctors. They can go online, as Jane’s doctor did, and try to make sense of the disease that way. But by the time they have a new NET patient sitting in their office, it is too late.

‘Every Day is NET Cancer Day.’ 

Maybe what we need is a traveling road show/conference about rare diseases aimed at primary care physicians: Six diseases you’ve never heard of in six hours. NET cancer is not, after all, the only disease out there that makes a doctor go, “Hmmmm.”

Awareness in the general population

We need the general population to know about the disease before the first time they encounter someone who has it. They are where the money for research has to come from–whether through donations or government funding. Currently, virtually the only people donating to research are those who know someone who has NET or who has died from it.

Six diseases you’ve never heard of in six hours.

Getting awareness of NET cancer to happen among the general population is hard. It’s why I’ve never turned our Walking with Jane Facebook Page into a private group. I understand the need for a place patients can let their hair down. I’m part of several such groups. But my purpose is somewhat broader than providing emotional and intellectual support for patients. So Walking with Jane exists as a public forum to educate non-patients and non-caregivers so we can create a broader base of support.

Purpose of public pain

Of course, the vast majority of the people who read what I write on NET cancer are patients, caregivers and people who have lost someone close to them to the disease. I know some of what I write is as painful for them to read as it is for me to write. It is a reality none of us wants to think about. And it will remain a reality until we find a way to drive out the demon that is this disease.

…we can create a broader base of support outside our own ranks.

I hope, in showing my pain, I can ease the paths of many who are patients. Despite my depressive tone, I want everyone to know that I am making progress toward dealing with the most horrible loss a spouse can experience. I want both patients and caregivers to know there is hope, as well as sadness, on this path.

Engendering compassion

And I want those who have no experience with NET cancer–or any other rare or fatal disease–to gain some understanding of what it means to face a disease without a cure. I want people to understand what it is to be a widow, widower, or orphan who has had to walk someone to the end of life too young. I want people to understand the emotional cost of such a loss. I want them to know what it does to change your view of the world and the people in it.

It is a reality none of us wants to think about…

As my Grandfather used to say: “Intelligence is learning from your own experiences; wisdom is learning from the experiences of others.” I hope, in addition, my posts will encourage some compassion to take root in the hearts of those fortunate enough not to be where too many of us are. I sell a piece of my soul for that every time I write something.

People talk about the beauty of a blue sky. But awareness of what clouds do can change our perspective on everything.
People talk about the beauty of a blue sky. But awareness of what clouds do can change our perspective on everything.

 

Craft, artistry required in NET cure search

awareness, Jane, NET Cancer Awareness Day/Month

Craft fair prep, travel prep

The alarm woke me at 6 a.m. today. I had a craft fair to get to by 8 a.m. and I needed to shower, shave, eat and pack the car before I could leave. Fortunately, the site was only about 15 minutes away. I didn’t sleep well last night.

Jane and I were lucky.

I didn’t sleep well six years ago either. Jane and I came back from Dana-Farber late in the day. We’d had appointments with her oncologist and a nutritionist, as well as her regular labs and a Sandostatin injection. When we got home, for the first time, I had to carry her up the stairs.

Craft items

I got set at the craft fair pretty quickly. I’ve been at this long enough that I have a basic design for the table pretty well down. I’ve simplified some things, so I carry fewer boxes. I’ve started a new line this fall: I’m selling limited editions of photographs I’ve taken.

I didn’t sleep well six years ago…

I’ll add some zebra-themed hats, scarves and other items as soon as I get the time to get over to Rhode Island to pick them up from the group that is making them. I also have some nice hand-crafted earrings and knitting items.

Medical craft

But there was nothing routine about November 12, 2010. Jane and I slept in because I didn’t have to work. I had an in-service day at school, but my principal had strongly suggested she would not object if I spent the day with my wife instead. I hadn’t told her that was my plan in any event. Jane’s health was declining rapidly.

I got set at the craft fair pretty quickly.

We were sitting together in the living room when the phone rang. Her heart surgeon had talked with her oncologist and cardiologist. Apparently, he didn’t like what he heard. He wanted to schedule Jane’s surgery for Monday or Thursday.

Decision point

We wanted a few minutes to talk about that before deciding which day. We both felt sooner was better than later. She was worried about a cold she thought she was fighting off, but we both remembered me carrying her up the stairs the night before.

…he didn’t like what he heard.

We called back and told them Monday. They told us to arrive on Sunday afternoon.

Photographer’s craft

There are three kinds of photographer. The most common is the person simply trying to capture an event so they can remember it later. The second is concerned with sculpting an image made of captured light. The best photographers do both simultaneously. I’m not that good.

We wanted a few minutes…

On a good day, I’m capable of being the second, but I have to think about what I’m doing. I don’t do well with moving targets even then. If I get one good image out of every 200, I’ve done well. I have just six photographs I am pleased enough with to hang in my house or sell to others.

Our last trip together

I knew Jane was in pretty serious trouble the day before the operation when we drove to the hospital in Boston. I’d had to help her off the toilet that morning before we left the house. I had to go into the Women’s Room at a rest stop on the way up to help her again.

I’m not that good.

I helped her out of the car when we arrived and when I came back from putting the car in the parking garage, she was in a wheelchair, almost weeping. She apologized for me having to carry her bag and push her to the ward she would stay on that night. She just couldn’t walk that far.

The craft of craft fairs

It’s 10:15 a.m. and the craft fair isn’t going very well. I’ve talked with one person about NET cancer. Three or four more have drifted past. Mostly, it’s been crafters talking to crafters. There are three people here I know from other shows. We’ve checked in with each other and will talk as the day goes on. We’re all hoping things will pick up.

She just couldn’t walk that far.

Sometimes they do. Sometimes they don’t. You hope the people running the show know what they are doing—that they’ve done the advertising and the public relations stuff. Even if they have, you are at the mercy of the weather and who else has fairs where that weekend. Walking with Jane has run one in June for five years. Traffic is different every year.

The surgeon’s craft

Even an average heart surgeon needs to be better at their job than I am as a photographer or an event organizer. Jane’s surgeon was brilliant. Jane’s heart was so damaged he had to sculpt the muscle to craft a new seat for the valves he installed. Despite his skill, Jane would need a pacemaker to keep her heart beating for the time she had left.

Sometimes they do.

Jane’s surgery was supposed to take 3-4 hours. It took 12. I paced the waiting room. I walked up the hill to a church not far from a place I lived as a student. I tried to distract myself with television shows we liked to watch. I stared out the windows at the lights of the city. Nothing eased the waiting.

The craft of waiting

This morning, I deal with another kind of waiting. Nothing is at risk beyond my ego. And it’s not taking any serious damage. Someone asked, again, if my photographs are watercolors. I take that as a compliment. It’s part of what happens for me when I am seeing light and capturing it the way I want to. A few others have whispered, “Beautiful.”

Nothing eased the waiting.

Of course, there’s always the person who thinks the camera is more responsible for the quality of the picture than the photographer. There’s this much truth to that: the quality of the lens and the quality of the sensors do make it possible to more accurately capture the light we see. You can take a good picture if you have the skill with a point-and-shoot camera. I’m not sure you can take a great picture with one—though some of what I’m seeing from the latest phones is pretty impressive.

The surgeon’s tools

A surgeon has to have the right tools to do the fine work that heart or brain surgery requires. Hand them a Swiss Army Knife or an Exacto knife and they can certainly do more with it than the average person can. Serous work demands serious tools. But it also requires more knowledge and practice than most of us can imagine.

I take that as a compliment.

Hand me the best scalpel in the world and you still don’t want me doing surgery on you. I can paint with words, I can paint—sort of—with light. But I am more craftsman than artist. Jane’s surgeon was an artist—and Jane’s condition required he create the medical equivalent of the Mona Lisa. You don’t pay a person like that based on the tools they use.

The art and craft of medicine

Jane and I were lucky. At every step we encountered people who knew what they were doing at the very highest levels of their art. When we encountered people who were not, they were smart enough, and wise enough, to pass us on to those who were.

Jane’s surgeon was an artist…

That doesn’t always happen. If the nearest NET cancer specialist works a day or two away—as is too often the case—the patient is stuck. We need more NET cancer doctors, more NET cancer centers, more NET cancer research. Otherwise, it’s like a craft show with no crafters for people looking for something that works.

Photography is both a craft and an art--and I am more craftsman than artist. Surgery is also both art and craft. Jane's surgeon was both. Without that combination, Jane would have died on the operating table.
Photography is both a craft and an art–and I am more craftsman than artist. Surgery is also both art and craft. Jane’s surgeon was both. Without that combination, Jane would have died on the operating table.

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.

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.