The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.
Planning for success
I am, by nature and by training, a goal-setter and planner. As one of my early mentors said, “Those who fail to plan, plan to fail.” The result is that I am constantly aware of not only what I want to accomplish, but how I intend to reach those goals. I do this in both my personal and professional lives—though sometimes I have difficulty telling those two things apart.
Together, we will make a difference.
In January of each year, I spend several days reviewing where things stand in my life and sketching out what I want to do in the coming year to move closer to my long-term goals. Those plans rarely survive contact with reality. Life has a way of screwing up even the best conceived notions of what to do and how to get there. Jane’s death pretty much annihilated everything I originally had in mind for the last ten years.
Setting goals
I rarely share my personal goals outside of a very small circle of friends. Jane was that circle 10 years ago. No one has seen more than the edges of those since she died. That’s unlikely to change very much in the immediate future. I am, where that is concerned, a very private person.
Those who fail to plan, plan to fail.
I have no such reservations, however, about sharing what I want Walking with Jane to do. This is a cooperative enterprise—or at least it is supposed to be. I may bear the bulk of the load, but others play a significant role in shaping where and how things happen here. Sometimes, they do so without knowing they are doing so. Other times, they play a more aware role. All of you need to know what I am thinking and where I’m going and why.
Looking at what is
Last year was emotionally difficult. We lost too many patients whose stories and struggles I knew too well. I have no words that will comfort grieving families or grieving spouses in any real way. The loss of a child, a husband, a wife, a parent at too young an age is an inconsolable thing. It underlines how badly we need better awareness among medical professionals and among the general public. It underlines how badly we need better diagnostics, better treatments—and how badly we need to find a cure.
This is a cooperative enterprise…
When we started Walking with Jane, there were too few support groups, too few reliable sources of information for patients written for patients. Today, those things are far easier to find. We had nothing to do with any of that—other people figured out what to do to make those things happen and work. I could see the need, but I couldn’t figure out how to get there. Today, I honestly don’t worry about those things beyond helping people find them.
Goals for raising awareness
But awareness outside of patient groups remains a substantial problem. Despite a myriad of efforts by a wide variety of groups, few primary care doctors or nurse practitioners have any knowledge of NET cancer. If we are to begin catching this disease early enough to make a real difference in the lives of patients, we need to change that. Today, we still only catch the disease in its early stages by accident.
Last year was emotionally difficult.
Nor, despite the fact NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer in the number of patients currently diagnosed with the disease—does the general public have any awareness of NET cancer. If we are to raise the money to do the basic research that will lead to a cure for this disease, we need to change that.
Legislative goals
To those two ends, Walking with Jane will focus on developing three initiatives in the coming year. Greta Stifel, a NET cancer patient in CT, spent two years successfully crafting and lobbying for a law in her home state that now requires all primary care physicians and nurse practitioners do course work in rare diseases as part of their recertification process. I have promised her we will work with legislators in the rest of New England to pass Greta’s Law throughout the region. We will encourage those in other regions to do likewise, intending to push for federal legislation within the next five years. My thought is we need to learn how the legislative process works at the state level before we take on the federal government.
Today, we still only catch the disease in its early stages by accident.
I know of few patients who have exhibited more devotion to the cause of NET cancer than Greta. She deserves the honor of legislation named on her behalf. Let’s all work to make this happen.
Expanding on past goals
This action will, we hope, be one step in raising awareness among medical professionals. But we need to do more than that. In November, as part of NET Cancer Awareness Month, Walking with Jane launched the #30NETfactsin30days campaign. We reached out to over 500 medical and news organizations with a single fact each day about NET cancer.
Let’s all work to make this happen.
Some student nursing groups picked up the campaign, as did a small group of medical schools. We will attempt to build on that campaign in the coming months with similar campaigns focused on pancreatic NET, lung NET, pheochromocytoma and paraganglioma, intestinal NET, and High Grade neuroendocrine carcinoma.
More awareness
These two efforts may help to raise awareness among people in the medical community, but we need to find other means of doing so, as well. We remain open to anyone who has materials they would like to share with all levels of medical practitioners. I can think of at least two recently constructed books I’d love to get directly into physician and NP hands.
Walking with Jane launched the #30NETfactsin30days campaign.
The third initiative is aimed at raising awareness among the general public. I’ve honestly no idea how to accomplish this. But I will spend considerable time talking to friends in marketing about how we create our own “ice-bucket-challenge” moment—and how we build on that moment.
Money goals
Money matters. It’s how we pay for the research we need that will lead to better diagnostic techniques and a cure in the long-term—and to a better quality of life for patients in the short-term. Walking with Jane will continue to work on a range of local fundraisers, including craft fair appearances, dinners, miniature and real golf tournaments, sponsorships, and letter-writing campaigns.
… we need to find other means of doing so…
We will continue to have and support teams for events like the Boston Marathon Jimmy Fund Walk and the Pan Mass Challenge. We will continue to advise any team for those or similar events elsewhere.
Expanding funding base
But we will also begin to publish here and elsewhere a series of articles on how to raise money through specific techniques. We already have in hand a piece on how to run a golf tournament, written by someone who has run one of the most successful charity tournaments for the Marathon Walk.
Money matters.
Other articles will include how to draft a fundraising letter, generate a mailing list, run a craft fair, put on a dinner, and put on a miniature golf tournament. Each will be written by someone who has successfully run that kind of event.
Shifting focus
These first five goals evidence a clear shift in Walking with Jane’s focus away from providing medical information and other patient support to raising awareness in the medical community and the general public while continuing grassroots support for helping to raise money for medical research. That shift will also be reflected in the thorough redesign of this website.
…articles on how to raise money through specific techniques.
We will continue to provide links to the best available information and support for patients and their families. However, we will rely on other sites run by other entities to carry the bulk of that load. We will provide links to those sites rather than trying to duplicate their efforts.
Building networks
Once upon a time it seemed there was a need for us to be all things to all people. If that time was something other than a figment of my imagination—and it likely was—that time has now most certainly passed. Increasingly, I see Walking with Jane as part of a network of organizations working on particular parts of the NET cancer problem.
…a clear shift in Walking with Jane’s focus…
One of my goals for this year—and into the future—is to help that network develop in every way that I can so that no one ever confronts the situation Jane and I did in the summer of 2010.
Finishing goals
With one exception, our other goals for 2020 are pretty simple. First, as many of you know, I spent a part of last year building an office for Walking with Jane in the basement of my house. The organization had largely taken over my study—where it started—my guest room, my dining room, and my living room—and had begun to creep into my bedroom. While the construction is finally completed, I’m still unpacking the preceding seven years of paperwork.
…to help that network develop in every way…
Finishing that and getting the various pieces of paperwork done for the state and federal governments are my next priorities.
Looking beyond
Which brings me, at last, to my final goal for 2020: In 2021, for reasons I’ve detailed elsewhere, I’m taking a year off from most of what I do with Walking with Jane. To do that, I need to recruit some people to take on some of the work I do here. If you’d like to do some of that, I’m willing to train you. Just drop me a line at hp@walkingwithjane.org.
I’m still unpacking the preceding seven years of paperwork.
As always, we face lots of challenges in the year ahead. Together, we will make a difference. We will make life better for every NET cancer patient and their families and loved ones. We will keep working to find better diagnostics, better treatments and—ultimately—a cure. Together, we can do this.
I’ll keep walking through the morning dark and into evening as we try to find answers to NET cancer, but in 2021 I’ll take a step back for a year. I’ll still walk, I’ll still ride, but I need a year for myself to heal the wounds of the last decade.
Dear friends,
As many of you know, December of this year will mark the tenth anniversary of Jane’s death. This August will mark the tenth anniversary of her NET cancer diagnosis. This winter marks ten years since we were both filled with worries about her rapidly declining health.
But this year also marks 40 years since her first symptoms appeared—and 35 years since I first encountered the edges of those symptoms and the effects on her life. Those effects almost immediately began to affect my own life.
Since Jane’s diagnosis, NET cancer has become my constant companion. Since her death, I have devoted seemingly every waking minute to trying to broaden awareness of the disease and to create funding for research to bring about its demise. I don’t want anyone to go through the 30 years that Jane did between her first symptoms and her death. I don’t want any spouse to encounter the things I did because of her illness—and because of her death.
In real terms, that meant drafting my first pamphlet on the plane to Seattle less than a week after we buried Jane, working on that while I was there, and drafting my first five-year plan for what became Walking with Jane on the flight home. Since then, I’ve written hundreds of letters and articles and proposals, given speeches, organized events and teams, walked and cycled hundreds of miles, inspired a few hundred people, and raised a small pile of seed money others have invested in research I hope will lead, eventually, to a cure.
Despite all of that, I’m frustrated—and still, it seems, deeply in mourning.
And I’m mentally and emotionally exhausted.
I took the last month off. I tried not to think about NET cancer, tried not to think about the patients we’ve lost in the last 10 years, tried not to think about the patients still dealing with the disease, tried not to think about research or funding or awareness.
It helped.
But it also underlined how badly I damaged I am and how much I need a much longer time away where I can focus on healing the injuries in my soul I’ve avoided dealing with since Jane’s death. I’ve never fully come to terms with that loss—and I need to.
That said, I’ve decided to declare 2021 a sabbatical year for me. I won’t abandon NET cancer—but for that year, I’ll place it firmly on a back burner. I’ll still do the Marathon Walk, still do the PMC, still engage in fundraising for those things—but NET cancer will cease to be an 8-12-hour day, six to seven day a week commitment for that year. I want to spend a year as a team member, not as a captain—or in any other substantial leadership role.Â
My plan is to return to everything fully in 2022, barring my death or incapacitation.
Some will suggest I should not put this off for a year—that I should take this year. I thought about that—and the idea is supremely tempting. But I’ve made some promises that need keeping—and I need to recruit some people to fill in for me to keep the #cureNETcancernow group and the webpage and a couple other things going in my absence. Momentum matters—and I don’t want to risk even a small disturbance after a decade of all of us working very hard to really get things rolling on NET cancer.
Others may argue I should just keep plowing forward. Part of me agrees with that sentiment. I want NET cancer dead in the worst way imaginable. But the research I’ve seen over the last ten years convinces me we face a much longer fight than I imagined at the start—than I suspect many of us imagined at the start. My thinking is that I will be much more effective if I take the break my body and soul call for in 2021—both now and in the future. It will create a sense of urgency that will carry me through the coming year—and a renewed strength for the years thereafter.
Let me repeat: I have no intention of walking away from this fight permanently. I simply need to sit down for a bit before I fall down.
What I will need is for people to take on some of the tasks I’ve taken on for a short time so I can come back to the fight refreshed.
I hope all of you had wonderful holidays. I look forward to seeing all of you in the year ahead.
In 1992, Jane had already been fighting her cancer for a dozen years. We lived in the darkness of ignorance–only experiencing endless symptoms no one could figure out. We would only know its name four months before she died.
Darkness arrives in words
I read two things today that crushed my heart. They both had to do with NET cancer patients. One was about a death. The other was about a teenager with all the symptoms but no diagnosis—at least not yet.
When Jane was diagnosed, we were told this was a cancer largely of people over 50—and Jane was 55. Of course, she’d been living with the symptoms—the bloating, the stomach pain, the diarrhea—since her late 20s. But her doctors had never heard of NET—never heard of carcinoid, as it was called in those days. Ignorance killed her as much as the cancer.Â
…none of that mattered to the disease.
Nearly nine years later, too little has changed on that front. Doctors and nurse practitioners are largely just as ignorant of Jane’s cancer today as they were when she should first have been diagnosed in 1980. I’ve spent nearly nine years trying to find ways to change that. I can’t say I’ve had much success there. Neither has anyone else.
Bright spots in darkness
Fortunately, there have been successes in other areas. We know more about the disease than we knew then. We have more and better ways to address the symptoms and slow the progress of the disease. We have a slightly better idea about what to do when a carcinoid crisis hits—the thing that really killed Jane at the end.
Ignorance killed her…
But there remains no cure for advanced stages of the disease—and no screening test we can use to diagnose the thing before it gets to an advanced stage. Accidents happen. People go in for an appendectomy and, “Oh look, there’s a neuroendocrine neoplasm. Let’s get that out of there.” Otherwise…
What she wanted
Increasingly, I wonder why I’m doing this. It isn’t at all what Jane wanted. The day before I took her to the hospital for the heart surgery to repair the valves in the right side of her heart, she told me in no uncertain terms how I was deal with her death, if it came.
Accidents happen.
“I don’t intend to die during or after this operation,” she said. “But if I do, I don’t want you to mourn for long. Give yourself six months to a year. Then fall in love again, remarry, have a good life.”
What I did
I told her she must think I didn’t love her very much—that her timeframe was not possible. She nodded at that but told me to do it anyway. She also told me I had to put up the tree every year—including that one—and that is something I have done.
I wonder why I’m doing this.
Nine years later, here I am. I’ve poured out my soul on the parched earth of NET cancer. I’ve written essays and posts, encouraged doctors, encouraged researchers, encouraged patients, encouraged caregivers. I’ve designed posters and pamphlets and awareness campaigns and planned and executed fundraisers.
Darkness of grief
And, privately, I’ve mourned an insurmountable loss. Grief groups? I’ve been to them. Counseling? I’ve done that, too. Bawled my eyes out until I have no tears left? Yes. Spent time at her grave? Yes. Spent time away from her grave? Yes. Moved my bedroom, replaced the furniture, purged my living areas of anything that might remind me of her? Yes. Redone the house and yard? Yes, though the yard remains a work in process. I’ve done everything but drugs—and with my family history of addiction, those are not really an option.
Nine years later, here I am.
Along the way, I’ve discovered that what we believe about grief and loss is largely a fairy tale. We learn to cope—we learn to put on a happy face for the world. We also learn that most people want to continue to live in whatever illusions comfort them. They don’t want to know about cancer or death or the suffering of others any sooner than they have to. And I find I can’t blame them for that. Those of us who have lost a spouse call widowhood a club no one wants to belong to.
Human nature amazes me
But I’ve also discovered many good and caring people along the way. Human beings are amazing creatures sometimes. They’ll fund the treatment of complete strangers, take care of kids, pay this month’s mortgage…
I’ve mourned an insurmountable loss.
But periodically, someone tells me cancer research is a hoax—that after all we’ve spent on research there has to be a cure big pharma is hiding from us. There are two fundamental flaws in that argument.
Light in darkness
The first is that cancer is not a single disease. There are multiple forms of breast cancer, multiple forms of lung cancer, multiple forms of prostate cancer, multiple forms of pancreatic cancer. What works on one form of breast cancer doesn’t often work on the others—let alone on a cancer that starts in the lung. Even the immunotherapies we have that everyone has become so excited about, work only on some cancers and not others.
Human beings are amazing creatures sometimes.
In real terms though, the reality of cancer has changed remarkably over the course of my lifetime. In 1952, nearly all cancers were almost invariably fatal. If a child had leukemia, all anyone could really do was make funeral arrangements. Today, the vast majority of children diagnosed with cancer survive to have largely normal lives. I have female friends who are 10, 20, 30-year breast cancer survivors, my younger sister and sister-in-law among them. We’ve made substantial progress.
Stopping conspiracy theories
The second flaw is the doctors and researchers I’ve met over the last nine years. They see cancer every day. They see what it does to patients and their families. They are compassionate and caring folks—and every death hurts them personally. I know because I’ve seen what happens when they lose a patient.
We’ve made substantial progress.
If someone came up with a cure and tried to hide it, those doctors and researchers I know would shut down such a conspiracy with every device and method at their command. Their patients become members of their family. Imagine for one moment what you would do if someone withheld a lifesaving treatment from your spouse or your child. Doctors would do no less. Researchers would do no less.
Bringing light to darkness
The face of cancer is different than it was when I was born. The face of NET cancer has changed in the nine years since I became aware of it. I don’t kid myself that I’ve played a large role in that change. I’ve done the things an English major and former teacher with limited money can do.
They see cancer every day.
I’ve donated money—likely more than I could afford—to help fund some basic research and encouraged others of greater means to do the same.  I’ve captained a Boston Marathon Jimmy Fund Walk team, helped advise a Pan Mass Challenge team captain whose efforts have far exceeded anything I could have done myself, chaired a successful fundraising campaign for Dana-Farber’s NET cancer efforts, inspired some other people to undertake patient education and awareness efforts…
Dawning darkness
But I’m tired and feeling badly beaten. Part of that comes from the date: November and December mark memories of the worst days of my life—and what I still view as my greatest failures. Today, Jane entered her last coma. Nothing remained to try. Nothing remained her doctors could learn from her. Only the process of letting her go remained.
I’ve donated money—likely more than I could afford…
Tomorrow, I would read to her and hold her hand. I would say the prayers of our peculiar faith for the dying for her. And I would tell the story of her life. Then her breathing would stop, her heart fall still and her brain shut down. I would close her eyes and come home to a house that was empty in a way it had never been before. Eight days later, we would bury her body and send her soul home to the garden we both emerged from.
The darkness of an empty well
But those memories are not all that troubles me. I have seen too much of death, too much of suffering from too many places and too many things. Every life I touch touches me. Every death carries with it memories of Jane—and memories of all the deaths that followed. Each haunts me.
But I’m tired and feeling badly beaten.
I know I have done all I can do. Each word I write carries a piece of my soul. Each word I speak carries a piece of my soul. Every poster I design, every video I make, every photograph I take, carries a piece of my soul. Somehow, all those pieces of my soul are not enough—and the bucket I throw down into that well now comes back up filled with damp sand.
A break from darkness
In ten days, I take my annual month-long hiatus from all things cancer. This year, I’m taking a vacation from everything else, as well: no politics, no climate change, no economics, no religion—nothing dealing with anything more urgent than plant starts, housekeeping, yoga, meditation, and the healing of mind, body, and soul. Â
Every life I touch touches me.
And then, we’ll see. There is yet work to be done in this vineyard—and in others. But there is a well to fix, first. And Jane had other plans for me…
It’s snowing on Giving Tuesday in New England. Warm some hearts by making some meaningful donations to organizations that need your help. I hope at least one of them will deal with NET cancer.
Things to think about on Giving Tuesday
I’ve spent a lot of time thinking about what to do with Giving Tuesday. Part of me just wanted to suggest people give to the big NET cancer foundations like NET Research Foundation and Carcinoid Cancer Foundation. I’m sending checks to both of them today.
…do what you can where you can.
But I made a promise to a patient before she died that I would find a way to raise awareness and educate primary care doctors and nurse practitioners about NET cancer, while also trying to raise awareness among the general public. It’s taken me some time to work out how to do that. The #30NETfactsin30days campaign was the first salvo in that effort. It–and the next step–are relatively inexpensive to do, but not likely to have a huge impact.
Raising PCP and NP awareness
Things that could have a bigger impact are expensive. We need a Continuing Medical Education video/course that will teach doctors the basics of NET cancer–and we need to market that program in the places medical folks will see it. We need PSAs for television and radio for the general public. Just the production costs for any of those projects are expensive, never mind what it costs to actually get something on the air.
I made a promise…
I’d really like folks to make donations today to the NET cancer cause. Make a decision to do what you can where you can. No matter what you do, I’ll be grateful. If you want to donate to Walking with Jane’s Laura Hoke Fund for Physician Education and Awareness you can find a link on our Facebook page. All donations made there go to that fund. Or, if you want to donate by check, you can send checks to Walking with Jane, P. O. Box 9721, Fall River, MA 02720. Put Hoke Fund in the memo line.
This day in November I remember the moment I decided to keep Jane alive when I could just as easily let her die. Doing so would have saved her 18 days of suffering. I know that decision made a positive difference in the lives of others. But i still wonder if I made the right call for her.
A moment
“Breathe with me,” I chanted as I held her hand in both of mine..
Her chest rose and fell, rose and fell, rose and fell.
And then it stopped.
I could have done nothing–perhaps should have done nothing. I could have just held her hand and let her slip away. The nurse was in the hall listening to rounds on the patient in the next room. The doctors were all focussed on that.
A decision
We’d talked about this moment–the moment she stopped breathing. But I wasn’t sure. I wasn’t ready.
I opened my mouth and called for the doctors and nurses. “Something’s not right here,” I said in a voice I knew would carry but not convey panic.
They came into the room. They put an oxygen mask on her face and put me behind a screen while they bought a few minutes to figure out what was going on and if her life was over.
Another moment
The hospitalist came onto my side of the curtain. “We think we know what is going on. We think we know how to fix this–how to give her a fighting chance. But we’ll have to intubate her. What do you want to do?”
And there it was–the thing we hadn’t planned for, hadn’t known to talk about–the vast area of gray where we had expected black and white–a simple decision that was no longer simple. But it was a decision I had to make quickly–one way or the other.
And so I chose to let her fight–to put off letting her die for another time–and hopefully another place somewhere in the distant future.
Consequences
Nine years later, I still don’t know if what I did was the right thing or the wrong thing in that moment. I only know I made the choice.
I know the good that came out of that choice. I know there are people who have had that same heart surgery who lived unexpected years because I made that choice. I know we became a beacon that had nothing to do with cancer for some other lives. I know Walking with Jane does not exist without that decision.
I suspect there’s a lot of money beyond what I’ve contributed directly that found its way into NET cancer research that might not have otherwise. I suspect some of the bright lights in the NET cancer community aren’t doing what they are doing if I make a different decision in that moment. I suspect there are dozens of positive outcomes for others because of what the following 18 days created.
Things are different
But I also know those 18 days are 18 days of suffering that Jane did not have to endure. I know how Orpheus felt at the top of those stairs one step away from joy–how it feels to have that joy thrown into endless night by a single turn–by a single moment.
I don’t know how one balances the one against the other–the human costs against the human outcomes. I can’t see how my life is different if I make a different call. I only know it is. I can’t say how the lives of others are different–for better or for worse–if I make a different call. I only know there are lives that are different.
A moment…
“Breathe with me,” I chanted as I held her hand in both of mine.
Her chest rose and fell, rose and fell, rose and fell.
And then it stopped…
And what followed changed things. That’s all I know
Jane went into her first coma on this date in 2010. The coma was caused by what doctors call a carcinoid crisis, which is when the NET cancer tumors suddenly begin producing hormones in even larger quantities than normal. In Jane’s case, the excess serotonin they produced crashed her respiration and blood pressure. Her doctors addressed this with fairly massive doses of octreotide. She would remain in a coma for about 35 hours. She would endure two more such attacks and comas–the last one resulting in her death on December 10.
People complain that Franklin and Jobs didn’t do enough to educate people while they were alive. If what they were going through looked anything like what Jane went through, I understand their reluctance completely.
Editor’s Note: If you are a NET cancer patient, you should not read what follows. It is filled with triggers that will not be good for you. If you are a lay-caregiver of a NET cancer patient, you should not read this for the same reason. If you are a widow or widower who has experienced the death of your other half as a result of NET cancer, you need not read this. You have already had the experience the piece describes and it will upset you, at best. It will have triggers in it you don’t need to deal with. I’m writing this piece for doctors and the general public, not for patients, lay-caregivers, or the bereaved.
I have seen Death in my life
I have seen death and suffering in my life. I spent part of my life as a police and fire reporter. I have arrived at fatal accident scenes moments behind–and once minutes ahead–of police and EMTs. I’ve walked into a burned out trailer with a fire marshal just after a fire was put out to find a charred body feet from the door. Those events were the stuff of my nightmares for years.
…much greater than anyone can imagine.
Then I sat the deathwatch with my wife and her sister as we watched my mother-in-law drown in the final throes of pulmonary fibrosis for three days and nights. That death was so ghastly her priest called it a martyr’s death. It drove the nightmares of my days as a journalist out and replaced them with new ones.
Nightmare diarrhea
Those nightmares lasted four years before being replaced with the images of my wife’s last days. Those images will never leave me. She did not drown, as her mother did. But what happened to her–and to me–was, somehow, far worse.
I have seen death and suffering in my life.
Aretha Franklin and Steve Jobs died from pancreatic NET. In some respects, it is a very different form of NET than the GI NET Jane dealt with. Their tumors were likely producing pancreatic hormones. Jane’s GI tumors were producing serotonin. The thing large quantities of some of them causes is food to be moved through the intestines very quickly, resulting in ongoing and massive diarrhea. I can’t be sure what happened in the case of Franklin and Jobs. I know what happened to Jane in too much detail.
What diarrhea does to dignity
Not having complete control over your bowels is worse than embarrassing in most human cultures. It reduces one, at times, to an infantile state. When that lack of control results not simply in a stinking stool in your underwear, but in diarrhea streaming down your legs and onto the floor, you feel worse than anyone can imagine. People can tell you it’s all right–that it’s your disease doing it–but that is the kind of thing that destroys your image of yourself.
…ongoing and massive diarrhea.
Many of us in the NET cancer community wish that Steve Jobs or Aretha Franklin had said something while they were alive about their disease. They could have done much to raise public awareness of the disease and how awful it is. They might have inspired more money for research that might have moved us closer to a cure. But they were proud people, living in a culture in a time and a place where we can only joke about what happens in a bathroom. It’s difficult to discuss, even with a doctor, being constipated. And diarrhea makes constipation look easy to talk about.
Simple human dignity
Jane was a proud woman. The night she went into the hospital for heart surgery to replace the valves her cancer had destroyed, they told her she had to go to the seventh floor of the building across the street. “I’m sorry,” she said to me, nearly in tears. “I can’t go that far. You’ll have to push me in a wheelchair.” She was visibly upset by that seemingly simple thing.
…they were proud people…
Jane hated the very idea of a wheelchair. We’d argued, sometimes loudly, about using one to get from one point to another in the hospital on earlier visits. It was an argument I’d decided I could not win. But I’d had to help her off the toilet at home that morning. I’d had to help her off the toilet in the Women’s Room at a rest stop on the way to the hospital. Her self-image and sense of dignity was in trouble long before the operation the next day set the stage for its absolute annihilation.
Diapers and dignity
Over the next four weeks, my wife became an infant. It destroyed us both. I replay those scenes over and over again in my mind. I look for things I might have done differently that might have made it better–might have left me with some small piece of a soul. There’s nothing there.
Jane hated the very idea of a wheelchair.
I diapered my first baby when I was six. I was the oldest of what would turn out to be six children. I put diapers on three of them–and helped by handing my mother diapers and powder on a fourth. I likely diapered the last one more often than my father did. Cleaning up an infant is often a stinky, messy job.
Changing Jane
Jane was my first adult. I knew she was having trouble. I came back from dinner one night to be told I should stay in the waiting area–that she’d had a bowel movement and her bedding and bedclothes needed to be changed. It took half-an-hour before they came to get me.
…my wife became an infant.
I don’t recall the exact details of what happened leading up to me helping change her. I just knew it was a two-person job and I wasn’t letting her lie in that mess one second longer than necessary. I told the nurse if he told me what to do, I’d help. He took me at my word.
A clinical description
I put on the gloves. I rolled her onto her side and held her there. The nurse did what he needed to do and I watched closely so I’d be able to do it myself if I needed to. I don’t remember the exact order of the process. He used the same kind of disposable cloth they use on babies to clean the diarrhea off her buttocks and legs. He rolled the sheets up close to her back. Then I lowered her back onto the bed. I walked to the other side of the bed, rolled her onto her other side. The sheets came off and he finished cleaning her up. Eventually, I lowered her back down on clean sheets in clean nightclothes.
Jane was my first adult.
I don’t know how many times I helped change her. She told me she was more comfortable when I was there to help. The nurses told me I got good at it–that they’d hire me. I like to think they weren’t just being nice. Even when they had someone immediately available, they let me stay in the room while they did it. It made Jane happy.
Breaking minds, destroying dignity
But it also broke her in ways that are hard to describe. She became emotionally more fragile and increasingly more child than wife. She became, for a time, completely paranoid–convinced the doctors and nurses were plotting something. She asked me to eat in the room rather than in the cafeteria so I could keep an eye on them. Periodically, I would drive back to Fall River to pick up clean clothes, cash a check, and pay the bills. She would be angry at me when I came back, even if I’d arranged for visits from friends and family for her while I was gone. Even if she were asleep much of the time. I’d left her alone for too long.
I put on the gloves.
And it broke me in ways that are hard to describe. You can’t help clean the shit from your other half’s body without it changing you. It deepens the relationship in unexpected ways at the same time it frays your soul. It felt like we were both creating these cool exteriors to hide the raw emotions that were coursing through us both. Even now, as I look at the description of changing her soiled sheets and gown, I see it so clinically–say it so clinically–knowing that to do otherwise would be to start crying and never be able to stop.
I live with it
It’s not that I don’t cry. I do–great hacking sobs that leave me drained emotionally and physically. In the midst of those episodes, I really do feel like the tears will never stop. And then they do–and I feel better for a time. Sometimes that time lasts for months–to the point I start to think maybe, at last, things will stay better.
She would be angry at me…
Then I come around a corner, catch something in my peripheral vision, wake up from a dream–sometimes a dream that has nothing to do with Jane or hospitals or mortuaries or cemeteries–sometimes for no reason at all–and it all rushes back in and I’m standing or sitting by that bed or rolling her on her side or looking out that hospital window…
Why we don’t talk about it
I understand why neither Aretha nor Steve talked about their NET cancer while they were alive. I watched what it did to Jane, year-by-year, month-by-month, week-by-week, day-by-day, hour-by-hour, minute-by-minute, second-by-second. They were all proud people who spent their lives in control–and who saw that control vanishing in the most embarrassing ways imaginable.
It’s not that I don’t cry.
And I understand why their families don’t want to talk about it now they are gone. To talk, even in vague terms, about what happened to the person they loved–and about what happened to them as they watched that person sliding into the abyss of diapers and a second childhood–comes at a heavy cost. It’s taken me nine years to put even this much down on paper and release it for public view.
Real courage, real dignity
Each of you reading this would do anything to protect those you love. Each of you would want to protect their image, even in death. We want the world to believe they died a brave, clean death filled with honor and strength and courage–and a kind of calm beauty.
I watched what it did to Jane…
Somehow, a bed soaked in diarrhea doesn’t create that image, for all that that reality makes what they endured so much greater than anyone can imagine. There may be little dignity in such a death, but it rehires far more courage more courage, far more patience.. And it is why NET patients and caregivers need more than sympathy or dignity–they need a cure.
When things get dark, I go for a walk in the woods. It clears my head, but rarely delivers answers.
The frustrations of teaching
I went for a walk in the woods two weeks ago with a good friend. We’d both had a tough week and needed some time in nature to try to put our heads back on straight. She teaches high school kids. A good part of what I do now is teach adults–or try to.
I still don’t know how to do what needs doing.
I find teaching adults far more frustrating than I ever found teaching high school students. Listening to my friend, it became clear that job has become far more difficult–largely because adults with no idea of what goes on in the classroom have increasingly forced their way into day-to-day practice. The paperwork now required would make it impossible for either Jane or I to do what we did.
What we think we know
Adolescents think they know everything. Adults know they know everything. Both groups are wrong. Sometimes teenagers can be reasoned with. Their brains are more fluid–more open to persuasion. They have limited experience and often have discovered how wrong they can be.
I went for a walk in the woods…
Adults… Adults believe their experiences have taught them everything already. They can’t perceive how the very different experiences of others have led them to very different conclusions. Worse, new facts or new evidence don’t seem to change their perspective very much. They believe what they’ve always believed because that’s the way they learned it over the course of their lives.
The problem with adults
Ultimately, both our problems stem from adults and what they’ve done or refused to do–or what they are doing and what they refuse to do. I admit, kids are crazy. But more often than not, adults made them that way. But kids can change fairly quickly and relatively easily with the right help at the right time–except when the adults refuse to let them.
Adults know they know everything.
My problem is I deal almost exclusively with adults. Their beliefs about everything were forged sometimes 40 years ago. Sometimes their beliefs are based on knowledge of that same age–knowledge that no longer is valid. We’ve discovered a lot of things over the course of my lifetime–things that have stood the world on its head.
What we believed vs. what was true
For example, about the time I was born, a computer scientist supposedly said he could not imagine why we would ever need more than about four computers on the entire planet. Others said flying to the moon was impossible–and even if it were, it would not happen in my lifetime. And cancer? We had no answers and never would.
We’ve discovered a lot of things…
Of course all those statements and ideas proved entirely untrue. I have a computer in my phone that is far more powerful than the best computer we had in 1952–and seemingly everyone has one. Cars all have computers in them. Every writer I know uses one nearly every day. Every teacher, too. No scientist could get through the day without one.
Moonshots
We’ve been to the moon and sent two probes beyond the edge of our solar system into interstellar space. We’ve discovered worlds spinning around distant suns and begun to perceive the structure of the universe.
…four computers on the entire planet.
And then there’s cancer. I hear several times a month from people that cancer research is the biggest boondoggle in history. “We’ve spent all this money and we still have no cure? The drug companies and the researchers are covering up the cure so they can make more money.”
Before there were cures
In 1952, childhood cancer was nearly an absolute death sentence. Childhood leukemia absolutely was. Breast cancer? Lung cancer? Get your affairs in order. And many people still think this is the case.
And then there’s cancer.
Sidney Farber wasn’t an oncologist. He was a pathologist at Children’s Hospital in Boston. He had the corpses of all these children arriving on his slab on a seemingly daily basis. It drove him to act. He’d go to parents of terminally ill children and get them to let him try chemicals that killed cancer cells in a test tube. Most did no good. But he kept trying.
The changes we don’t see
Today, 90 percent of children diagnosed with leukemia live, many into adulthood. We have a treatment in trials that seems to work for many childhood glioblastoma cases. I know a large group of women, including my younger sister, who are 20-year or more breast cancer survivors. We have cures for lots of forms of cancer–just not all of them yet. Those cures don’t work on every kind of cancer–don’t work on every cancer they are designed to take down.
Sydney Farber wasn’t an oncologist.
Once or twice a year I get to spend time with physicians and researchers working at the cutting edge of cancer. Sometimes, the news is almost too good to be believed–what’s happening with some cancers and immunotherapy leaves me speechless. Sometimes, the news is worse than I can begin to imagine. Every study, every experiment, every trial, adds a new piece to the puzzle, brings a new piece of evidence to the case. Sometimes those things open new lines of investigation. Sometimes they end up being dead ends.
Learning from failure
But we don’t know where something will lead until we try it. Early rockets blew up on take-off more often than people think who were not there to see it. But every failure led somewhere–taught us something we needed to know. People forget that some of our early Mars missions ended in complete failure. Today, we have rovers traveling that planet finding all kinds of interesting things.
Those cures don’t work on every kind of cancer…
Cancer research works the same way. Farber didn’t give up when his first patients died. He didn’t give up when the second group of patients died–or the third or the fourth… Success grows from failure more often than from immediate success.
What we now know
I keep telling myself that. It’s not helping very much this month. Nine years ago, my wife was dying from a cancer her doctor had never heard of, that few oncologists ever expected to see in their entire careers.
…every failure led somewhere…
Today, we know NET cancer stands second only to colon cancer in terms of patients in treatment for GI cancers. We know it stands as the most common of the rare cancers that make up about 30 percent of all human cancers. We know it stands on the verge of crossing out of the legal definition of a rare disease.
Nothing changed when much changed
But medical schools still don’t talk about it much. It appears on no national medical exam. Virtually no primary care physician or nurse practitioner knows it exists if they haven’t encountered a patient with it–a patient who likely heard the same words Jane did when she was diagnosed: “I’ve never heard of this kind of cancer before.”
I keep telling myself that.
I’ve worked at changing that for close to nine years now. Some things have certainly changed during that time. We have online support groups for patients; twoorganizations have put out books on the subject to help patients become more knowledgeable about the disease and better advocates for themselves; nationally, we’re raising–and spending– more than 10 times as much money for research as we were in 2010. I don’t pretend I’ve had a lot to do with any of that–much of it I’ve had absolutely no involvement in.
The other awareness
But awareness outside the NET cancer community has not changed at all. Many of us have shouted from the rooftops. Primary care physicians have not heard us. Nurse practitioners have not heard us. Medical curriculum groups have not heard us. The general public has not heard us.
But medical schools still don’t talk about it much…
Until that changes people will continue to be diagnosed with advanced disease we have no way of curing. We’ll only be able to ease their suffering some of the time when the drugs and treatments we have work. We may buy them some time with a better quality of life than they might otherwise have.
Changing ignorance
And there will continue to be patients who are never diagnosed; who will die without even the treatments we have that might help them with their symptoms, might get them to a graduation or a wedding or the birth of a grandchild.
Many of us have shouted from the rooftops.
We need to get those medical schools and nursing schools and medical curriculum designers to listen. They need to know the universe of neuroendocrine cancer exists–that what they think they know about the size of the problem is badly out-of-date–and dangerously wrong.
The walk in the woods calmed my mind but brought me no answers. I still don’t know how to do what needs doing. But I’ll keep trying. I hope you will, too.
By the time of Jane’s heart surgery, her cancer had consumed much of her liver. The next step in her treatment would have been to address that issue. Today, doctors might go after the primary tumor instead.
The birthday that might have been
Jane would have turned 65 today. We would have done something special. I’d have written her a poem, given her presents and flowers and a couple of cards. We’d have gone to dinner someplace we both liked. Given the milestone 65 represents, perhaps we’d have spent the weekend on the lake or flown somewhere exotic.
…the moment Jane stopped breathing.
Instead, I took flowers to her grave. The weather is raw and blustery. I didn’t stay long. I could hear her in my mind telling me to get somewhere warm. I woke up in the dark this morning. I immediately missed her. That happens most mornings–but this morning was harder than usual. I lay there with tears in my eyes.
Jane’s last birthday
Her last living birthday we spent in the hospital together. She was two days out of surgery and improving rapidly. They wanted to move her to the step-down unit, but there was no bed available. Instead, they began the process where she was. They took her off oxygen and removed the remote monitors. They began weening her off the other drugs she was on.
Instead, I took flowers to her grave
We had talked about what I would do once she moved out of the ICU. I’d check out of my hotel room the next day and head home. I’d visit on the weekend and maybe once during the week. Jane didn’t want me driving back and forth to Boston every day after work. She needed to focus on healing–not worrying about me driving home. Her doctors agreed: I’d just be in the way. Jane joked she’d gotten a new heart for her birthday.
Harbingers of death
Everything shattered a bit after 7 p.m. The night nurse came on and started running vital signs. That’s standard procedure in the ICU–or anywhere else in a hospital. What she found, she didn’t like. And things went rapidly downhill from there.
She needed to focus on healing.
Jane’s pulse-oxygen level had dropped into the upper 80s. It’s supposed to be well into the 90s–anything below 90 marks a problem somewhere. We were up all night. They did scans and blood tests and could find nothing to explain what was going on.
Carcinoid birthday greetings
What was going on was the first of four carcinoid crises likely triggered by the physical therapy and the weening her off the octreotide drip that helped fight off carcinoid crises in operative post-operative NET cancer patients. No one realized it at the time. It was one of the things Jane taught her doctors. Unfortunately, they didn’t figure that out until she was in her final coma.
Everything shattered a bit after 4 p.m.
Jane never lost consciousness that night. I suspect that was another piece of the carcinoid crisis as insomnia is a symptom of high levels of serotonin. But I chalked up her wakefulness to what was going on around us.
When your best isn’t enough
I wonder now how much brain damage she sustained that night. She was still recovering from the anesthetics from the surgery and was a little loopy to begin with. I never saw her pulse-ox levels dip below 80. But she was never quite right after that night. Still, Jane was always hyper-sensitive to anesthesia, so I just don’t know.
Jane never lost consciousness that night.
I just don’t know too many things from that time period. I second-guess everything I did and said during that final month of her life. I console myself with the knowledge I did the best I could with what I knew and believed at the time. But there was too much suffering there for the final outcome.
The cost of knowledge
I was at a funeral this week. One of the readings was the story of Jesus raising Lazarus from the dead. I know that act made his family and friends happy. But we never hear from Lazarus. I wonder where he was and what that miracle took him away from.
I second-guess everything
And I wonder what additional suffering I inflicted on Jane by calling her back from the edge of death on two later occasions before we let her go home. Those things haunt me. I know the good that came of those decisions. I know what the doctors learned, know how the nurses felt about what they saw. I know how those extra days have shaped my life since–for both good and bad.
Happy birthday or sad birthday?
But I just don’t know if I did the right thing–don’t know how to balance any of it. I doubt I ever will. I’m struggling with a lot of things–trying to figure out what I’m doing, whether I’m making enough of a difference for the energy I’m putting into things, whether it’s time to do something else.
Those things haunt me.
Today is hard. It is always hard. I remember how happy we were for so much of the day–and how rapidly things fell apart as day turned to night. I feel enormous bitterness and enormous sadness. And then I tell myself how little of the good that has happened since exists without that day and the ones that followed.
That thought does not console me. People tell me it should. But they have no idea what I lost–and no idea what the world lost–the moment Jane stopped breathing.
NET cancer was once considered a zebra among zebras. That meant it was well down the list of diseases doctors thought about when presented with a set of symptoms that today screams neuroendocrine cancer at me. Increasingly, I wonder just how much of a zebra this cancer really is. Sometimes, I think of it as a horse disguised in stripes.
Symptoms don’t always help
The focus of this week’s #30NETfactsin30days posts is largely on the symptoms of the disease. There are problems with that focus. The first is that many patients never exhibit any symptoms at all until the day they are faced with an intestinal blockage or some other life-threatening situation. Not every neuroendocrine cancer appears to secrete a hormone, so finding one based on looking for hormone issues does not always work.
We need your help, too.
And even those that do secrete hormones can go for years without producing more than vague, irritating symptoms that people learn to cope with. That vagueness also complicates things for doctors trying to decipher what is going on. Lots of things can cause intermittent bouts of diarrhea, lots of things can cause flushing, lots of things can cause wheezing…
The specialist problem
To further confuse things, patients may see one specialist for one set of symptoms and remain mum about those same symptoms with another specialist in another field. My wife Jane, for example, talked with a gastroenterologist about her stomach issues and her gynecologist about her hot flashes. The one told her she had irritable bowel syndrome, likely brought on by the stress of teaching high school students, since it seemed to subside over vacations. The other blamed that flushing on early menopause.
…many patients never exhibit any symptoms at all…
That Jane also suffered from regular bouts of insomnia she largely kept to herself–blaming her love of coffee and tea for it–compounded the problem. All those things taken together scream NET cancer to me today. Hindsight is a wonderful thing. But none of her doctors had the ability to put all those symptoms together because they were only seeing parts of the story.
Zebra symptoms
Even had they seen all of her symptoms, though, they still were unlikely to come to the conclusion she had neuroendocrine cancer. As Jane’s heart surgeon said to me the night before Jane died, the first thing we teach young doctors is, when you hear hoofbeats think horses not zebras. That means look at the most common diagnosis for a set of symptoms and treat that first. Only if that treatment does not work should you think about other causes–and the next disease on the list is unlikely to be a zebra.
… they were only seeing parts of the story.
“Unfortunately, a zebra killed your wife,” he finished.
A zebra among zebras
And neuroendocrine cancer was a zebra even among zebras for Jane’s doctors. It was considered thought so rare that Congress eliminated funding for research into it in 1968. They didn’t come back to it until 2008, when they funded a conference of doctors with an interest in the subject to talk about what they would do if there was federal money to fund something.
…the first thing we teach young doctors…
Congress funded actual research for the first time since 1968 in 2010.
If you don’t suspect it…
It was thought so rare that apparently medical schools didn’t it mention it much, if at all. Even today, I regularly hear from both doctors and nurse practitioners the same kind of thing Jane’s doctor told us the day she was diagnosed: “I’ve never heard of this form of cancer.”
…a zebra even among zebras…
The Carcinoid Cancer Foundation has a wonderful aphorism about NET cancer that applies to almost any relatively rare disease: “If you don’t suspect it, you can’t detect it.” It’s the absolute truth. No medical practice orders tests for a disease unless they have strong reason to suspect that disease is present. But it is impossible to suspect a disease you’ve never heard of.
Raising awareness of symptoms
Part of what the #30NETfactsin30days campaign is about is raising consciousness among the doctors and nurse practitioners who are most likely to encounter neuroendocrine cancer at an early stage when swift intervention could make a real long-term impact on the lives of patients.
“I’ve never heard of this form of cancer.”
But part of it is also about reaching out to potential patients. Jane had symptoms for 30 years before diagnosis. She was in superb physical shape. She played singles tennis every morning of every summer up until the summer of 2009. She often played another couple of hours of doubles with men in the afternoon. We walked 2-5 miles every day from spring to late autumn. We frequently went on 20-30 mile bike rides on ancient steel-framed bikes. She had the same body fat as an elite female athlete.
Looking too good to be sick
Despite all that, she had regular bouts of diarrhea, painful stomach bloating if she ate later than 5 p.m., frequent insomnia, blood pressure low enough that she sometimes passed out getting up from the toilet, hot flashes from her late 30s to the end of her life that never went away, a persistent rash on her face she covered with make-up and never gave a second thought to…
Jane had symptoms for 30 years…
She looked too healthy to be sick, felt too healthy to be sick. She didn’t look or feel like cancer was eating her alive. But it was. And it wasn’t all in her head.
The price of ignorance
We need better ways for doctors to communicate what they are seeing to other doctors; better ways to coordinate diagnoses; better ways to bring the supposed zebras to the attention of the frontline doctors and nurses who see patients earliest and most regularly.
She looked too healthy to be sick…
The consequences of our ignorance are enormous for both patients and their loved ones. Jane died less than four months after being diagnosed. By the end, she’d been stripped of every ounce of human dignity she possessed. The person I was died with her that night. The future we dreamed of died that night.
We need to do all we can to prevent that from happening to anyone else. I work at it as hard as a broken soul can. I’m not enough. We need your help, too.
