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.
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.
Serotonin is an important hormone for human beings. In the right quantities, it balances our moods, aids our digestion, regulates our blood pressure and respiration, and a bunch of other things as well. But if we have too little of it–or too much–the results are nasty.
…it has all filled me with a terrible resolve.
Some NET cancer tumors produce serotonin. Jane’s did. I’ve seen the impact of a steady overdose of that hormone from the outside. What it feels like to be on the inside of that situation is beyond my ability to imagine. But for lots of NET cancer patients, they don’t have to imagine it because they live it every day.
Why NET isn’t ‘the good cancer’
And they can live with it for decades. That fact lets some people–including too many doctors–think NET cancer is a good cancer to get. The patient looks healthy. And in a culture obsessed with weight, some of the women may even be envied for their ability to stay slim. Too many people count the years and forget about everything else.
…the results are nasty.
No one thinks about the quality of life in those decades except for patients and their families. They live with what the disease does to the quality of a person’s life in ways no doctor, no insurance or drug company rep., no average person does. They see the reality of the disease and what it does.
The beginning of Jane’s journey
Jane and her family dealt with her cancer for five years before I met her. They didn’t know that cancer was the cause of Jane’s sudden weight loss in 1980–they just knew she stopped eating. Her mother thought her daughter might be dealing with anorexia. But Jane only knew that every time she ate more than a few bites, her stomach filled up with painful gas that made her look three months pregnant.
The patient looks healthy.
Then the diarrhea would arrive and she’d feel better for a few days. She discovered if she stopped eating after 5 p.m., she had fewer problems. Slowly, she figured out that some foods were less of a problem than others. She adapted her behavior to minimize the impact of the disease–at least where eating was concerned.
Hidden symptoms
She stopped losing weight. Over time, she gained back a few of the pounds she had lost–though nowhere near what she had lost. People around her thought whatever she had had vanished. But it hadn’t. It was still there. She’d just learned to cope with the food part of it.
Then the diarrhea would arrive…
The insomnia was a different story. No one really saw it. When she couldn’t sleep, she got up and made her family fancy pastries for breakfast, graded papers, or prepped lessons. No one connected her sleeplessness and her digestion issues.
And then there was me
And then she met me. I didn’t make those connections either. At first, she kept her dietary issues from me–until I took her out for pizza after a movie one night. When I called the next day, she told me she wasn’t feeling well. The next time we went out, she told me she couldn’t eat after 5 p.m.–that it did bad things to her digestion. She was embarrassed by it and hadn’t wanted to spoil our date. She’d spoiled the rest of her weekend, instead.
The insomnia was a different story.
I come from a family that doesn’t need much sleep. I chalked her hours of sleep up to the same genetics we have that wakes us up after 6-7 hours of sleep. If I get much more than that, I stay groggy for the rest of the day.
Day-to-day realities
It was only after we were married I realized the extent of her insomnia, which gradually worsened over the course of our life together. I’d wake up at 2 a.m. to find her using her earbuds to listen to the tiny radio she kept on her nightstand. I functioned on 6-7 hours of sleep. She worked on 3-4–and sometimes on none at all.
…she kept her dietary issues from me…
Diarrhea was her constant companion. At first, it was a couple times a month. It would be proceeded by a couple of days of boating and gas. She’d trace it back to something she’d eaten or the pressure we both faced in the classroom. A doctor had told her teaching was stressful and the most likely cause of what ailed her. The first symptoms had come on just after she’d started teaching. It seemed logical.
Getting through the day
The number and frequency of diarrhea episodes increased gradually over time. She was embarrassed by them and, for a long time, would not admit even to me that they were happening. Her last year teaching, every morning started with diarrhea followed by an Imodium tablet that would get her through the day.
Diarrhea was her constant companion.
I tried to get her to the doctor, but her response was always the same: “They’ll just tell me it’s IBS, again; that it’s all in my head.” She thought the job was the problem and, in another 18 months we’d retire, and that would solve everything.
Mood shifts
Jane’s moods were also mercurial. We could be laughing and joking or snuggling in each other’s arms and, out of nowhere, she’d be so angry she couldn’t speak. It could be a compliment or a well-meant tease in response to a tease of her own. She would suddenly go cold and silent. By morning, she was herself again, as though nothing had happened.
…every morning started with diarrhea…
Those sudden shifts in mood became increasingly frequent over time. Often, I could ascribe them to the pain in her bloated belly. Sometimes, I knew I’d said something or done something that set her off. But sometimes, they came out of nowhere. Knowing what I know now about serotonin levels and moods, it was one more signal of the cancer that I could not see.
Another masking agent
Menopause came early for Jane. Her menstrual cycle, always irregular at best, went completely haywire in her late 30s. She had the hot flashes and night sweats we associate with menopause start up at about that point as well. Her libido died before she was 45. We still snuggled and kissed each other good night; still woke up in each other’s arms and held hands everywhere we went. We still loved each other deeply. But the sexual piece of our time together was over.
But sometimes, they came out of nowhere.
And, of course, we both ascribed a chunk of her moodiness to the emotional struggles many women go through during the “time.” It made perfect sense. But in the background, those tiny little tumors were churning out their deadly little drops, poisoning everything–or trying to.
Other things we might have connected
Jane had chronic low blood pressure. Her resting heart rate was sometimes under 50. We ascribed both of those things to her excellent physical condition. She never smoked, rarely drank and exercised vigorously virtually every day.
Menopause came early for Jane.
But sometimes she would get dizzy if she stood ups too quickly. Sometimes she fainted getting up off the toilet. She confessed later, there were times she felt like the world was coming to her from far away–as though she were having some kind of out of body experience.
Damage we couldn’t see
Serotonin is a caustic substance. In the amounts we’re supposed to have in our intestines, it doesn’t do more damage than our bodies can repair. But in the quantities NET cancer tumors can produce, they can slowly induce a fibrosis that makes the intestines increasingly brittle. In that state, they have greater and greater difficulty absorbing the nutrients the serotonin is pushing through them at faster and faster rates.
Jane had chronic low blood pressure.
All of this conspired to increase the rate at which Jane was starving to death. She needed bathrooms more and more often. It made travel of any kind more and more difficult. There came a point where just going out for groceries meant a pit stop in every store. And then, even that was too little.
Into the liver
At some point, long before the events of that last paragraph, Jane’s tumors hit her liver and exploded. The serotonin the body produces is supposed to be metabolized in the liver. This prevents it from reaching the heart in all its destructive power. But when the hormone is manufactured in the liver, all that serotonin shoots up through the valves in the right side of the heart, doing to them what has already begun to happen in the intestines.
…Jane was starving to death.
Jane was a physically very active woman. She played tennis every day in the summer–singles with her sister in the morning, often followed by doubles in the afternoon with three men, all of whom were good players. At school, we paced the halls at speeds that left even teenagers trying to keep up with us breathless.
Destroying the heart
As the valves in her heart deteriorated, stairs became increasingly difficult to navigate. Her feet would swell up with the fluid leaking back into her body from those leaking valves. Then her legs filled with that fluid. Then her belly. Without surgery, she would have died from congestive heart failure–essentially drowning in her own fluids as they squeezed her heart to the point of shutdown.
Jane was a physically very active woman.
She gave up tennis that last summer. We tried to go for walks and hikes, but they became shorter and shorter. Sometimes, she would send me on to finish what we started while she sat and read the newspaper or stared out across the water to the farther shore.
Every story is different
Not every NET cancer patient whose tumors are producing serotonin goes through everything that Jane did. Some go through more–or a different mix of events and symptoms. Nor does every NET cancer tumor produce serotonin. Some produce other hormones and peptides that create very different symptoms and experiences. Some appear to produce no hormones or peptides.
She gave up tennis that last summer.
It is a truism among the doctors who have become experts on this form of cancer that, “When you’ve seen one case of NET cancer, you’ve seen one case.” Every NET cancer is different, seemingly, from every other NET cancer.
The impact crater on my soul
I can’t say what any of this felt like to Jane. I can’t imagine what it was like for her to watch her world closing in on her every day until all that was left was what she could see from her hospital bed or the chair in the room she had to be hoisted in and out of with a crane.
Every NET cancer is different…
I only know the damage it has done to my own mind–my own soul. And I find I can’t describe that in any way that makes people understand the depth of either her suffering or my own in having had to watch her go through it. But it has all filled me with a terrible resolve: NET cancer dies.
Part of what gets me to walk 26.2 miles every September is my memory of watching Jane fight her way through the serotonin overdose her body was delivering her on a daily basis.
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.
Jane and I forgave each other for the mistakes we had made over the previous 21 years, two months and 11 days on this date six years ago. We also forgave–or tried to–each other for the mistakes we knew we would make in the next few weeks as we prepared for her heart surgery, scheduled for November 15. We knew she would be in the hospital for at least three weeks. We both expected she would be home for Christmas. But we wanted nothing left unsaid, just in case. And we made each other promises.
…I have promises of my own to keep.
I brought her body home two weeks before Christmas and put it in the ground next to her mother–fulfilling one of those promises. Hard as this is for me to say–hard as this is for some of you to hear–my life has been empty ever since.
Promises to fill the void
I’ve tried to fill that emptiness by doing good in the world. I’ve worked on cancer funding–both generally and specifically for NET cancer. I’ve worked on NET cancer awareness by creating brochures, writing articles, making videos and talking to anyone who would listen–as well as those who didn’t want to. I’ve worked to raise money for research, helped patients try to find the resources they need to live better lives, tried to console and inspire others who have lost what I have lost.
Jane and I forgave each other…
Beyond that, I’ve written about the power of love, the power of forgiveness, and the need to embrace those things in our daily lives. I’ve tried to practice those beliefs every day in everything I do. Some days I’ve been better at it than others, but the desire is always there.
Broken promises
I envy those of you who find solace in prayer and simple faith. I equally envy those of you to whom those things have no meaning. Believers and unbelievers alike have certainties I do not share–and cannot share. I have seen too much to deny the existence of some higher power–or powers. But, equally, I have seen too much to believe in their benevolence–at least toward me and those I care about.
I’ve tried to fill that emptiness…
I have seen too much of death–too much of suffering. I’ve watched a man gouge grooves in the arms of a maple chair against the pain of end-stage lung cancer; watched a woman drown for three agonizing days as pulmonary fibrosis slowly choked her to death; watched my wife suffer for decades with the NET cancer that slowly destroyed her heart and shredded her bowels before it killed her. I have seen too much other hideousness to remain on speaking terms with divinity.
The empty sound of a shattered heart
Something snapped in me while I slept last night. I’ve felt it building in me for weeks–for months–for years, really. I’ve taken, as Peter, Paul and Mary sang, my “place on the Great Mandala, as it moves through your brief moment of time.” I have made my choices and live the outcomes of those choices every day–as well as the promises.
I have seen too much of death…
But I feel empty–empty in the way this house too often feels empty–even when it is full of people. I feel abandoned–the way I abandoned–and Jane abandoned– her cooling body after her death. And I’m tired–tired of the daily effort, the daily lifting and turning, and the slow, almost invisible progress that some days seems as much illusion as reality.
Dancing our promises
I danced with Jane to the end of her life. It was a dance filled with love. And since her death, I’ve tried to keep dancing that dance, even with my partner gone and the music fading like the sound of her voice at the end. We believed in love and forgiveness–and once you’ve heard that song, you can never dance to anything else–nor stop dancing.
Something snapped in me while I slept last night.
I made Jane promises before she died: I promised her a cure for NET cancer; I promised her I would not stop living; I promised her I would never stop working for the things we believed in. Those promises were not mistakes–but they are proving really hard–and often very painful–to keep.
Promise me this
Someone said to me this week that I am a person who goes where angels fear to tread. I said, “It’s easy to do when Heaven doesn’t want you and Hell is afraid of what you’ll do next.” I said it lightly, and the other person laughed. But it is how I feel–how I’ve felt for a long time.
I danced with Jane to the end of her life.
So don’t pray for me. Instead, love one another and forgive one another, even when you feel some people don’t deserve it. They’re probably struggling, just like you are, with something you can’t see. The hurt coming from their mouths and actions is evidence of that battle–a battle they sometimes can’t see or even acknowledge.
And I, I have promises of my own to keep .
For me, promises can have the power of a vow, depending on when and how they are made. The promises I made to Jane at the end of her life have that power.
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.
“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.
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.
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.
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.
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.
