Buried emotions

We buried Jane on Saturday, December 18, 2010. I went back to work Monday morning. People told me I shouldn’t have–and they may have been right. But I knew our children–our students–had lost their surrogate mother and barely seen their surrogate father in more than a month. I needed to be there for them–and they needed to be there for me.

When we reached cruising altitude, I began to write.

I arrived early that morning–as we always had. The halls were dark and empty as my soul. I opened the door to my classroom. My students stood quietly in the dark beneath a sign that read, “Welcome Home.” That fanned a tiny flame I barely knew existed. In that moment, I knew I was not completely alone–that I would find a way to survive this.

Buried past

For many NET cancer patients in 2010, survival was the central issue. As I said in yesterday’s post, they had few options–none of which did more than slow the course of the disease and/or alleviate some of the symptoms. Those symptoms–frequent diarrhea and flushing, for example–were inconvenient and embarrassing at best. At worst, they became deadly.

…I knew I was not completely alone…

Jane’s NET cancer had gone undiagnosed for decades. She had tumors in her liver the size of her fist–and smaller tumors scattered everywhere in that organ. Students told me later there were times they thought she was about to pass out in front of them. She had daily bouts of diarrhea she told no one about. She was dying–likely knew she was dying–but she worried about her students and the AP and Achievement exams they faced in the spring more than she worried about her own health.

Buried conditions

Carcinoid heart disease remains a fairly rare event for most NET cancer patients. It happens when the tumors in the liver create serotonin in significant quantities. The body produces serotonin for a variety of purposes, including controlling the speed of digestion, respiration, sleep, and mood, among other things. Normally, the liver cleans out the serotonin in the blood stream  before it reaches the heart.

She was dying…

But when the serotonin is manufactured in the liver, that serotonin doesn’t get metabolized. Instead, it flows into the valves on the right side of the heart. It is a chemical that is highly caustic–caustic enough to destroy those valves, causing the blood to leak out around the valves and gather in the legs and lower abdomen. This causes swelling, first in the feet, then in the legs, and finally in the belly as the damage increases and more and more fluid leaks out.

Buried truth

That swelling finally got Jane to the doctor. By then, it was likely really too late to do anything. But we tried anyway–both trying to put an optimistic face on for the other. And we had a plan–an unrealistic one, in hindsight, but a plan none the less.

It is a chemical that is highly caustic…

Job One: lower the serotonin levels with Octreotide and  Sandostatin. Job Two: fix the valves in her heart. Job Three: reduce the tumor load in her liver using liver embolization, followed–or preceded–by liver resection. Job Four would go after the original tumors in her lower bowel.

Unburied truth

We never got the serotonin levels under control before her heart got so bad the operation couldn’t wait any longer. Then, the operation discovered the damage to her heart was greater than anticipated. The surgeon solved that damage, but a carcinoid crisis happened every time she started physical therapy to get her back on her feet. Every time she ate, she got hit with massive diarrhea–which left her increasingly dehydrated and weak.

That swelling finally got Jane to the doctor.

Finally, there was nothing left to try–and no reserves left to try with. Early diagnosis–even just earlier diagnosis by a few years–would likely have made an enormous difference. I know a correct diagnosis in 1980, when Jane had her first symptoms, would mean she would still be here today. I’m fairly certain an accurate diagnosis even as late as 2005 might have made a significant difference. Trials existed and maybe she would have gotten lucky. Instead, she died.

Beginning the next battle

My students got me through that week before Christmas. They didn’t expect much from me beyond my presence–and the assurance I would not disappear on them. They–and some of my colleagues–helped me begin to process everything that had happened in the preceding year. I began to see what needed doing and began to think how best to do those things.

Finally, there was nothing left to try…

As I boarded the plane to Seattle that Thursday night to spend Christmas with my family, I began sketching out a plan that started with a single pamphlet. Doctors told Jane for years her symptoms were caused by Irritable Bowel Syndrome. I now knew NET cancer had a too similar set of symptoms. When we reached cruising altitude, I began to write. 

Absent realities

Dear friends,

First and foremost, my apologies to all of you. I’ve been absent most of this year, for reasons I’ll share in a minute. I hope

the rest of this year will be better. The rebuild promised in my last post has not happened, nor have I managed a single update since January. The rebuild is on indefinite hold. The rest…we’ll see.

This has been a difficult 18 months for me…

An absent recovery

He died July 1.

Absent from training

…the wound required over 100 stitches to close. 

Absent, but moving

…even that has begun to look like a stretch.

Absent friends

Over the next few days, you may experience some difficulties with this website as we begin doing some reorganizing. The News/Blog connections should be fine, as nothing will change there.

However, using other sections of the website may get a bit choppy at times as some things may move to other sections, other links vanish, and some entire sections may go as well.

I haven’t done any serious housekeeping on some of these pages for more than a year. Information that is out of date will vanish. New information will be added–and everything that remains will get reorganized, hopefully in ways that will make things more accessible.

I hope to have the entire refurbishing done by the end of next week. Thank you for your patience in the meantime.

Support NET research on Giving Tuesday

I’m taking a break today from the heavy emotional work of the caregiving series. Instead, I want to talk about something equally important. I want to see the day when series like that no longer have meaning. Tomorrow, Giving Tuesday, is our opportunity to help things in that direction.

…every dollar counts.

Words and prayers won’t bring us a NET cancer cure. Only knowledge will do that. And knowledge comes at a price. It takes years to become a doctor. It takes years to acquire the skills and habits of mind a researcher must have. Those people have bills to pay and children to feed just like anyone else. They can’t work for free.

Research isn’t cheap

They can’t find the new knowledge that will lead to a cure without lab space and equipment to do it with. That space and equipment needs heating and cooling and maintaining and cleaning. All of it costs money–money we don’t have–and won’t have–without your support.

They can’t work for free.

Neither government nor pharmaceutical companies pay for basic research. That’s reality. Drug companies only become interested when they smell nearly immediate profits. Governments don’t like spending money on experiments that may fail. Every fundamental breakthrough comes directly from charitable donations.

The starving orphan

NET cancer is an orphan no one wants to adopt. We live on the table scraps left after the dog finishes with them. We have no celebrity spokesperson, no cute poster-child, no regular presence on media of any kind that people pay attention to. And we share a zebra mascot with hundreds of other destitute, abandoned children.

All of it costs money…

Tomorrow, on Giving Tuesday, I’ll write checks to support literal orphans. I’ll write checks to support literal homeless people, literal hungry people. But I’ll also write additional–and substantial–checks to groups doing NET cancer research. I hope you will do likewise by making a donation–online or by mail–either to your local NET cancer center or to one of the organizations and funds below.

Places to donate

The Walking with Jane Dybowski Fund for NET Cancer at the Dana-Farber Cancer Institute is part of 3-in-3: The Campaign to Cure NET Cancer. I will personally match the first $1000 in donations to either page today (11/28) and tomorrow (11/29). This money supports research on NET cancer at Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors.

The NET Research Foundation funds research into NET cancer not only in the US, but also around the world. They also support patient conferences that help raise awareness and supply patients with the latest information. In addition, they fund conferences that bring researchers together to talk about what they are discovering.

NET cancer is an orphan no one wants to adopt.

The Carcinoid Cancer Foundation is the oldest foundation working on NET cancer. Their website is the best place for new patients to find the full range of information they need on their NET cancer journey. They also do patient conferences similar to the NET RF, but in different regions.

The Healing NET Foundation provides a range of online resources for patients, including a book on NET cancer and support groups. They host a monthly conversation with one of the leading doctors in the field on their Facebook page, Dr. Liu’s Zebras.

Overseas and local

Internationally, you can’t do better than support the NET Patient Foundation. They have a full array of support groups and information. They also support research.

There are many other regional and international groups also worthy of your support this Giving Tuesday. It doesn’t matter to me where you make your donation. It only matters that you do. In NET cancer research, every dollar counts.

Breaking tradition

It’s Thanksgiving in America tonight. It’s a time for counting ones blessings, thinking positive thoughts, and being thankful. In recent years, I’ve forgotten that. I’ve focussed instead, some would say become obsessed, on Jane’s last Thanksgiving and what happened that day.

…I am thankful for every crumb.

But a friend pointed out to me this week I spend too much time in the past. Another pointed out I spend too much time alone. And a third expressed concern for my sanity. So, tonight, I break with recent tradition and try to look at what I have rather than what I’ve lost.

Thankful for what we did have

Jane and I didn’t have enough time together. But I am thankful for the nearly quarter century we did have. Yes, we only had 21 years, three months and eight days of marriage. But we lived in each other’s souls for the nearly four years between the day we met and the day we married–and every day thereafter. We got to the “‘Til death do us part” moment most never get to see.

It’s Thanksgiving in America tonight.

And I am thankful for our friends who held both our hands through those last days–and have not let mine drop since. Gail, John, Morgan, Arlyn, Scott and Wendy and their kids, sheltered my soul from the blizzards and ice storms of despair. And as those storms have eased, they’ve helped me rebuild a semblance of a life.

The larger community

I’m thankful for the doctors and staff at Dana-Farber who’ve let me become a part of their family. I’m especially thankful for Jen, not only for walking away from her own Thanksgiving four years ago to spend an hour with us in the hospital, but also for the friendship she has gifted me with since.

…we lived in each other’s souls…

I give thanks for the larger NET cancer community that has taken me into its heart. You’ve listened to my pain and honored it. You’ve listened to my thoughts and plans, and not laughed me out of the building.

Progress on many fronts

I know the progress we have made has not been enough. But I also know where things stood six years ago as we struggled to find the answer to Jane’s carcinoid attacks. I stand thankful for what we know now that we did not know then. And I am deeply moved by every sacrifice made by every patient, caregiver, doctor, nurse, and researcher to purchase that knowledge.

You’ve listened to my pain…

I am equally thankful for the support groups–both physical and online–born in the days since Jane’s death. I would have killed for such a thing in 2010. The ones that existed, I could not find in those days–and even had I done so, there was no time that didn’t have Jane’s name on it.

Needs and wants

Personally, I owe a great debt to our many students who have reached out over these six years and made sure I had places to go and things to do. The simple gift of an hour’s conversation over coffee has proven more valuable than you will ever know. Your calls and invitations have so often come at the darkest moments in this struggle. I am deeply thankful for those things.

…I am deeply moved by every sacrifice…

I have a roof over my head, food to eat, clothing on my back, good work to do, and–most importantly–friends who care for me and look out for me. No man has need of greater gifts than these–for all that he might want more. Much has been taken–but much remains, and I am thankful for every crumb.

Before telotristat

Octreotide and Lanreotide have been the go-to drugs for patients with NET cancer’s carcinoid syndrome for the last several years. They work by blocking the receptors on the tumors that cause them to secrete serotonin. Serotonin causes the symptoms carcinoid syndrome patients face: flushing, insomnia, diarrhea, bloating, and light-headedness, among others.

…I am not a doctor…

In some respects, the most immediately concerning of the most common symptoms are those involved with the digestive tract. The bloating leads to a loss of appetite; if you feel full, you don’t eat. If you don’t eat, you lose weight. When you do eat, the syndrome pushes the food through so fast there is no time to absorb the calories, let alone the trace elements, the body needs to function.

Syndrome creates social and physical issues

Frequent diarrhea–think several episodes a day, every day–also does bad things to the patient’s social life, as well as mental health. A life governed by how closeness of the nearest bathroom eventually leads patients to just stay home.

They work by blocking the receptors…

In the longer term, the excess serotonin causes a fibrosis of the intestines, destroying them the same way it destroys the valves in the right side of the heart. That fibrosis compounds the digestive problems by making it even harder for the intestines to absorb the nutrients the body needs to survive.

Somatostatin analog issues

Octreotide LAR and Lanreotide are long-acting somatostatin analogs. They were a big step forward over daily injections of the initial form of Octreotide. That form now gets used largely as a rescue drug for when symptoms return between the monthly injections of the longer acting drugs.

Frequent diarrhea–think several episodes a day, every day….

Unfortunately, for reasons that are not well understood, none of the somastatin analogs works for everyone. And they may eventually stop working even in those patients who have a positive response.

Telotristat: a different approach

Enter telotristat ethyl, a drug that comes in pill form that inhibits the production of tryptophan hydroxylase (TPH). Tryptophan–the infamous stuff in turkey meat that supposedly is the cause of Thanksgiving naps–is one of the things you must have in order to make serotonin. Slow–or stop–the creation of tryptophan and you slow the creation of serotonin.

…none of the somastatin analogs works for everyone.

A  of telotristat involving 135 patients showed that, “Among patients with carcinoid syndrome not adequately controlled by somatostatin analogs, treatment with telotristat ethyl  was generally safe and well tolerated and resulted in significant reductions in BM (bowel movement) frequency and urinary 5-hydroxyindole acetic acid (5-HIAA urine test).” (Items in parentheses added for clarity.) Doctors use the 5-HIAA urine test as a means to measure the amount of serotonin the body produces by looking at a by-product of it being metabolised in the liver.

Finding the right tool

We’ve known since 1967 that inhibiting TPH could improve symptoms for carcinoid patients. But previous drugs that would do that crossed the blood-brain barrier and resulted in patients becoming depressed. Too little serotonin in the brain is just as bad as too much elsewhere, it turns out.

…the infamous stuff in turkey meat…

Telotristat, for a variety of reasons, doesn’t cross the blood-brain barrier. Some patients did experience depression while using telotristat, but it was not clear, based on the results of this study, that the incidence was any greater than that of the patients in the placebo arm. It ?????????????????????????????????????????????????????????????????did not cause them to drop out of the study.

Telotristat impact

At the start of the study, the mean number of bowel movements per day ranged from 5.2-6.1. For the average patient, that number decreased by nearly three BMs per day–essentially cutting the number of BMs in half for many patients.  5-HIAA urine levels also showed a dramatic decrease: 78 percent of patients saw 5-HIAA levels decrease by more than 30 percent.

…doesn’t cross the blood-brain barrier.

The study did not look at fibrosis in either the intestines or heart but suggested, given the dramatic lowering of 5-HIAA levels, that a future study look at that.

Telotristat side effects

With any drug, there are potential unwelcome side-effects. We’ve already mentioned depression. Some patients experienced some increases in liver enzymes, while others experienced nausea. Neither was at a level that caused patients to drop out of the study, but longterm follow-up of these side effects is planned.

…essentially cutting the number of BMs in half…

Based on the results of this trial, the drug went the FDA for approval in the US and for approval in Europe.

A step forward

Having watched Jane inject herself with octreotide twice a day after her diagnosis–seemingly to little effect–I’m all in favor of oral medications whenever possible. Octreotide certainly did not control her symptoms. This absolutely looks like a significant step forward to me.

We’ve already mentioned depression.

But there are some other things to keep in mind: I am not a doctor and none of the above constitutes medical advice. I’ve read the paper and have run this by my friends at Dana-Farber to make sure I haven’t badly messed up in putting this in layman’s terms, but you really need to talk to your doctor about this, or any other treatment.

(Editor’s notes: The text of the original paper as it appeared in the Journal of Clinical Oncology can be found here. My thanks to Matt Kulke at the Dana-Farber Cancer Institute, lead author of the paper, for his help in making sure I’ve got it all right, medically speaking.  

(The last two posts in the ongoing 30 Day Challenge were not posted to many sites as they did not address anything patients or lay caregivers generally need to be concerned with. If you want to see them, they can be linked to from our Facebook page or on the NET Cancer News menu, where they appear in the order they were written.)

(This post is going up a day later than planned because of a commitment I had to take a friend to Boston. That ended up a 14-hour day and I was just too beat to want to do more than stare at a TV screen for a bit when I got home.)

(The post scheduled for today will go up sometime tonight.)

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

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

…she would never be the same.

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

The things that gnaw at a relationship

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

Some days, she hated me…

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

Two sides to relationship blues

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

Frustration and impotence are terrible things.

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

Relationship to forgiveness

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

Jane and I both knew we would make mistakes…

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

Relationship and mistakes

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

But I can let none of it go.

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

Relationship to today

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

We made so many mistakes.

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

The beginning of the end

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

She would awaken on November 16.

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

Bad zebras

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

It’s the disease that is the zebra…

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

‘Think horses not zebras’

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

Jane was in a coma.

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

Remembering the end

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

‘A zebra killed your wife.’

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

Zebras and lies

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

I remember holding her hand… 

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

Zebras and neglect

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

A zebra didn’t kill my wife…

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

Zebras create illusions

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

Jane died of ‘benign neglect.’

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

Zebras steal our humanity

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

…I was not consoled…

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

Stealing from other zebras

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

Patients are not a herd of animals.

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

My zebra guilt

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

…we’ve appropriated a term…

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

People are not their diseases

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

I get it.

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

Lives of the dead

Jane was recovering from the H1N1 flu seven years ago. We had never heard of NET cancer or carcinoid syndrome. That she would be dead in little more than a year was not something we even considered. We had lives to live.

…my challenge is to write something here every day about NET cancer…

Today is All Hallows. It is the day we remember our dead and honor our saints. Some believe the souls of the dead visit us today. If they are visiting me, they have been largely quiet so far. I had no haunting dreams last night. But the light in the entry was on this morning–and I could swear I turned it off last night.

Lives of the living

In my darker moments, I wish the H1N1 had carried Jane off in 2009. It might have been kinder. I wouldn’t know about NET cancer, wouldn’t know about carcinoid syndrome or carcinoid heart disease; I wouldn’t be reading scientific papers and trying to make sense of a disease that bewilders even our best scientists.

We had lives to live.

And this website would not exist–though many would argue it has vanished over the last several months. It has.

Saving lives through work

There are a number of reasons for that. In August of last year, I began working closely with a group at the Dana-Farber Cancer Institute to create 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign is to raise $3 million for NET cancer research over the next three years. As I write this, we are closing in on our first million dollars.

I wouldn’t know about NET cancer…

Part of that effort was the creation of the #cureNETcancernow Boston Marathon Jimmy Fund Walk group, the cancer specific group in the more than 25 year history of the Walk. The group raised over $155,000. Next year, we’ll work to expand that group and create something similar for the Pan Mass Challenge, a biking fundraiser for cancer that traverses the entire Commonwealth of Massachusetts over two days.

Lives change

We’ve also put together a NET cancer speaking program for business and civic groups that we will try to find audiences for in the coming months. I’ve prepared a prospecting letter for that which I hope will go out sometime this month. There are a number of other projects in the works as well.

…we are closing in on our first million dollars.

But the larger part of my absence here stems from two other, larger issues. The first was the gradual realization that I was no longer accomplishing much here that others were not doing better elsewhere. What I was writing about Jane’s experiences was from the dark ages of NET cancer care.

Life with NET

When Jane was diagnosed, we had two treatments for non-pancreatic NET cancer patients in the US: octreotide and it’s long-acting, slow release form that offered some patients relief from the daily injections. If you could get to Europe, PRRT was another potential option. But that was about it–and nothing seemed to help Jane very much.

…from the dark ages of NET cancer care.

The world of NET cancer is a very different place today–and I’m not sure how relevant Jane’s story is beyond putting things today in a historical context.

Life with grief

And how many times can people read about the ongoing grief of another before that becomes a pointless exercise? I’ve written a book’s worth of pieces on Jane’s death and my efforts to deal with what has followed. Those pieces, I know, have made a difference in helping me deal with that loss; and they have helped others similar straits–or so people tell me.

…nothing seemed to help Jane very much.

But I don’t know if those posts, too, lose their impact over time. The emotions I feel haven’t changed much in six years. I’m clearly in the throes of what the psychologists call “prolonged grief.” I know it is more common than most think because I know so many people who have lost spouses and not recovered beyond being able to get through the day despite the passage of several years.

Reclaiming past–and future–lives

So I’ve taken some time for me to see if I could find my way to better place in my head. I worked on some landscaping and interior decorating projects that would make the place I live more about me and who I am becoming than about us and who we were. I went back to some places we liked to go that had been mine before Jane and I met and I shared them with her. I tried to find some new spaces where I could discover who I am without her.

I’m clearly in the throes of what the psychologists call “extended grief.”

Each of these things has carried an emotional price–just as every piece I write carries an emotional price. I can’t take a photograph, write an article–even take a walk–without investing a part of my soul in it. Neither Jane nor I entered into our marriage on a whim. We both knew the cost of letting another soul that deeply into our lives. We were completely invested in each other.

Building new lives–here and elsewhere

I can’t describe the last several months. I’ve laughed, cried, cursed and struggled. I’m still not sure who I am or who I will be a year from now. But, for a variety of reasons, I’ve begun to feel something besides grief and anger, periodically. It is a bewildering experience.

Each of these things has carried an emotional price…

But I also know there is work to be done–here and elsewhere. Over the course of the next month–NET Cancer Awareness Month here in Massachusetts–my challenge is to write something here every day about NET cancer and the ongoing fight to find the cure that has so far eluded us.

Revising this site

I’ll also spend some time rethinking and reworking this website so it does a better job of doing what I wanted it to do from the beginning: provide help for NET  cancer patients and their caregivers–both in terms of information and in terms of emotional support.

…there is work to be done…

If you have thoughts on how to do those things, feel free to let me know.