NET cancer and the long walk

NET cancer is never far from my mind under any circumstances. But given the nature of what I was doing yesterday–the dress rehearsal for my Marathon Walk effort started at 6:40 a.m. and continued, with a break for lunch, until nearly 5 p.m.–I spent a good deal of time thinking about it and about what we are trying to do through Walking with Jane.

Our Marathon Walk t-shirts are printed.

And what I thought was both mind-bendingly depressing and exhilarating.

Those of us dealing with NET cancer tend to be an insular group. That is not surprising. Not only is NET cancer considered a rare cancer but it is also a cancer that acts very differently than almost any other form of cancer. A garden-variety cancer is usually pretty aggressive–and that aggressiveness can be used against it in a variety of ways. Both chemo and radiation therapies are aimed at cells that are growing more rapidly than those around them. That aggressiveness also makes many cancers easier to detect in their early stages when they are most curable.

The isolation of NET cancer

But while NET cancer may make other cancers more aggressive–as I have suggested elsewhere–it is, itself, rather indolent. It grows at about the same rate as the cells around it, making traditional cytotoxic therapies ineffective at best–and harmful at worst. Its symptoms are easily confused with those of other, somewhat more common, illnesses. More than 100 years after the disease was first described we still have no simple, reliable way to detect it.

I find that thought truly exhilarating.

The 5-HIAA urine test works pretty well, if the patient’s tumors are producing seratonin, but collecting urine for 24 hours is no picnic for the patient–and the test doesn’t do much good if the tumor is producing some other hormone–or none at all. The chromagranin A test is better, but the test is expensive and–some claim with no evidence I have seen–prone to false-postives. Getting a primary care doctor to order the test is difficult.

NET cancer as backwater

NET cancer patients have their support groups and their advocates, but I sometimes feel we are a backwater well outside the concerns of the major cancer research organizations. There are literally tens of thousands of people working on lung cancer and breast cancer. We spend hundreds of millions of dollars on them. By contrast, I would guess there are fewer than 200 people working full-time on NET cancer on the planet. And the amount we spend on it is pathetic. No wonder the main weapons in our arsenal were originally designed to do something else. Octreotide, for example, was originally designed to ease the suffering of chemo-therapy patients.

Getting a primary care doctor to order the test is difficult.

And money is going to continue to be tough to come by. The federal budget is a shambles–and regardless who gets elected in November NET will remain a homeless orphan where the US government is concerned. The major cancer organizations will continue to focus their attention and money on the “bigger” cancers.

Fundraiser’s limitations

In the last 18 months I have begun to realize the limits of my own fundraising prowess. My personal goal was to raise $76,000 in 2012. My current projection is about $54,000 despite working on this a minimum of eight hours a day seven days a week. That would still be a $16,000 improvement over last year–and to my friends and I $50,000 is no small amount of money to have raised. But in the face of the millions needed, it is clear I made the wrong choice of profession in the 1970s–and the wrong choice about where to practice it in the 1980s and beyond.

The 99 percent and the NET cancer battle

My friends are school teachers, book-keepers, shopkeepers, small business people, farmers, lawyers, policemen , firemen and mechanics. They pay mortgages and raise their children. They don’t have summer houses or more cars than family members. They are common, everyday people who wonder how they will afford to retire and what they will do if someone in the family gets really sick.

My students were not, by-and-large, destined for great wealth. They, too, do the work of the world, scrimp to save up the down payment on a house, and figure out how to pay the bills that come in every month.

I sometimes feel we are a backwater…

I love my friends and my former students. Every day they work to do something meaningful with their lives. And when I ask for their help with a fundraiser or ask them for a donation, they give whatever they can. I got a $10 donation from someone this summer that reminded me of the poor woman in the Bible who secretly gave what little she had and understood what Christ said on the subject in a way I never had before. Such generosity makes me weep.

Doing what we can

Our donations come from the 99 percent people talk about and too often laugh up their sleeve about. But if we are going to find a way to fund the research that must be done to cure NET cancer I know I can count on each of them to do what they can. More importantly, I know that they will live good and honorable lives and will fight the battles they have to confront with the same passion I bring to this fight.

And I find that

thought truly exhilarating.

Marathon Walk Update

Our Marathon Walk t-shirts are printed and waiting to be picked up this afternoon. I can’t wait to see them. Every person on the Caring for Carcinoid Walking with Jane Jimmy Fund Marathon Walk team will get one, as will those who donate $100 or more to the cause. I will post a picture of the shirt later today on Facebook as wells here, once I figure out how to do that.

Yesterday was dress rehearsal for me for the Walk. I put in 28 miles in just under nine hours. .

The Carcinoid Cancer Foundation plugged our Walk on their Facebook page and sparked a huge one-day jump in views of this website. A special thanks to them for doing that.

Saturday at midnight will determine whether I keep my hair for the Walk or not. Donations will continue to be accepted after that, they just won’t result in me shaving my head. The challenge is on.

Together, we will beat NET cancer.

NET cancer  and the Wars

My Marathon Walk story is the story of NET cancer. It is a story that begins long before I met Jane. It is a story that begins even before I graduated from high school.

It begins for me with the War in Vietnam and climaxes, though it does not really end, in a hospital bed at Brigham & Women’s Hospital in Boston, Massachusetts.

I know what NET cancer is. I know what it does.

The war in Vietnam was escalating in 1968. We would soon have over 500,000 young men there. They needed guns and ammunition and armor and food to eat and fuel to burn. The government was trying to fight a second war at the time, as well: The War on Poverty. Lyndon Johnson wanted both guns and butter, but he didn’t want to raise taxes in an election year either. So the Democratic Congress and the Democratic White House went looking for things they could cut so they could fund the two wars they had in hand.

NET cancer and cost-benefit analysis

There was a third war going on at the same time: the War on Cancer. It was getting substantial amounts of government money but cancer organizations like the American Cancer Society were supplying money for that fight as well. John Wayne, a major movie star, had survived lung cancer by having a lung removed, but for most people cancer was a death sentence. And researchers were beginning to realize that the War on Cancer was a war on many diseases, not just one. With limited money they were forced to focus on what looked like the “major” cancers: lung cancer, breast cancer, leukemia and colon cancer. Each was easy to detect so they had lots of cases to work on.

The harder ones to detect were usually terminal by the time they figured out they were there. And because they were harder to detect, there appeared to be fewer cases of them anyway.

…death claimed her body and killed her cancer in the same stroke.

And then there were those that were really hard to detect, like NET cancer. Often it had metastasized to the liver before anyone knew it was there. And often liver cancer or heart failure or something else seemed to be the cause of death.

What orphan status means

So when the government needed to trim the budget to fight its other wars, the cancer community offered up those “rare” cancers as the place they would cut their budget. What no one realized was that the end of federal spending would also signal the end of most private spending as well. If the National Cancer Institute was not going to spend money on “rare” cancers, no one else was going to either.

And just like that, NET cancer was an orphan. One small foundation rose up to try to keep funding going from private sources, but it was never enough. The die was cast and lots of people would die as a result.

And just like that, NET cancer was an orphan.

For 40 years no one in the federal bureaucracy thought to give the decision a second look. And when they finally did, in 2008, they came up with the money to fund a conference to ask the leaders in the field what their priorities would be if they actually had money. And that was it.

NET cancer and Jane

My guess is that Jane developed her first tumor within a decade of that 1968 decision. When her disease became symptomatic in 1980, her mother though she was anorexic. Her doctors ran tests and told her she had irritable bowel syndrome because they could not really figure out what was wrong. Ultimately, they told her it was all in her head.

By the time I met her in 1985, her weight had stabilized. She had found ways to cope with the illness. She tried not to eat too much at any one time and never after 5 p.m. Most of the time, that worked. But sometimes it didn’t.

…for most people cancer was a death sentence.

I’ve told the rest of Jane’s story here before: the painful gas, the frequent diarrhea, the insomnia, the night sweats, what we thought was the early onset of menopause. I’ve written, too, about her final months, weeks and days. And I have written about my own struggles in the days since death claimed her body and killed her cancer in the same stroke.

NET cancer and me

In two weeks I will make my second Marathon Walk. I will make it to honor her memory by raising awareness about NET cancer and what it is and what it does. I will raise money to help fund the research that will inch us toward the day we will be able to control this beast.

My Marathon Walk story is the story of NET cancer.

I know what NET cancer is. I know what it does. I have met others who have the disease and those who care for them. I see in their eyes the same look I saw in Jane’s and the same one I see in the mirror in the morning. I want to change that look from one of despair and loss to one of hope–and to one of joy when we find a cure.

Please help us find the resources to end NET cancer.

We really have no idea

Sometime in the last week or so we likely surpassed in views of this website the number of people diagnosed with NET cancer in the last 12 months. If we have not, then we will do so shortly.

But that number is likely misleading. The truth is we have no idea how many cases of NET there are out there. Even the experts resist putting a number on it. We can establish a minimum number based on diagnoses made. But NET cancer is so hard to detect, so easy to confuse with something else, that we have no real idea the size of the thing we are looking at.

Just because a thing is rarely diagnosed does not make it rare.

In June, I was at a patient conference on NET cancer. One of the speakers made a reference to a speech he had heard given by one of the big names in NET cancer research. He was talking about how rare NET cancer is. Rare diseases are called zebras in the medical profession. The researcher had called NET cancer a pink zebra because he considered it among the rarest of the rare.

And people laughed.

NET cancer and the zebra label

Patients with NET cancer and their caregivers wear that zebra label with a sense of pride. It helps us live with the slender resources dedicated to the disease and enjoins us to be patient. Breast cancer patients have it worse than we do, we console ourselves–and there are so many more of them than there are of us.

…a pink zebra because he considered it among the rarest of the rare.

NET cancer patients are told the disease is “indolent”–that, unlike other cancers, it is slow to kill its human hosts. We believe we have years before death comes for us or our loved ones–and surely in that time “they” will find a cure–or at least some way to prolong our lives.

And yes, my wife likely lived for 30 years with the disease before it overwhelmed her. Of course the fact she never drank and exercised like a fiend played a role in that. Had she been less a straight-arrow than she was…

Quality of life issues

The fact is, however, the quality of her life was often very poor throughout those 30 years. She had frequent diarrhea, gas that was so painful I could not touch her belly, endless, frequent insomnia that often left her in front of her classes on an hour’s sleep or less. She could not really eat after 6 p.m. without paying an awful price–and anything after 4 p.m. was dicey.

And the mental price was equally cruel: she was told she had irritable bowel syndrome–that it was probably caused by nervousness, anxiety, that it was all in her head–and that if she took this drug or saw that psychotherapist there was a chance it would all go away. What she heard was: “They think I’m nuts.”

…surely in that time “they” will find a cure…

The longer it went on the more short-tempered and frustrated she became. Her immune system began to decay. Then her feet and legs blew up like balloons. Then her arms. On our way back from her last appointment at Dana-Farber she was leaking fluids from the injection site all the way home.

For three of the last four months of her life she had to give herself three injections in the belly every day. I have talked to NET cancer patients who have done that for ten years or more.

Stop being patient patients

We suffer in silence. We are just a zebra–and a rare zebra.

To which I say, in the words of MASH Colonel Sherman Potter, “HORSE HOCKEY!” We need to make some noise.

Today, I read a paper about NET cancer in children. Children are not supposed to have NET cancer–and certainly not NET cancer that has spread. But there it was, a paper reviewing 237 cases of childhood and adolescent NET cancer patients–some of them with metastases–whose disease was discovered entirely accidentally in the course of other surgery. What wonderful lives those kids have to look forward to.

They think I’m nuts.

Add in the papers I have already talked about that tie NETs to aggressive prostate cancers, to aggressive forms of breast cancer and lung cancer, and the researcher I talked to who quietly explained to me that many cancers are actually colonies of different types of cancer cells–and that three million potential undiagnosed cases out there hypothesized by that 2009 autopsy study suddenly looks far more realistic than I want to think about.

Catch phrases

“If you don’t suspect it, you can’t detect it” has become one of the catch phrases of NET cancer research.

Let me add another thought to that equation: “Just because a thing is rarely diagnosed does not make it rare.”

…she was leaking fluids from the injection site all the way home.

Radioactivity was all around us for years before we discovered how to detect it. That did not make it rare, only invisible to the means we had to find it.

Neuroendocrine cancer, like many other supposed zebras, may yet prove not rare it all. It may, in fact, prove all too common.

Marathon Walk Update

I have squeaked into the top 30 based on my numbers today that official put me at $6014.80. My unofficial numbers place me at $6614.80, which would still put me just outside the top 25 at this point.

Second on our team is Elizabeth MacNeil at $2508.80, which earns her two star status. Jenaleigh Landers holds onto third with $550.

My current official goal is just under $900 away. We are about halfway to our team goal of $25,000. The walk is two weeks from Sunday.

Needless to say, we are still seeking donations and team members.

Help us make some noise about NET cancer.

NET cancer creates doubts

There are days I have doubts about what I am doing on NET cancer. There are still, 20 months and 13 days after Jane’s death, days I wonder what it was all about. Certainly her illness changed the lives of many people in positive ways, but there are moments I see that relative handful of lives as not worth the pain she went through, physically, mentally, and emotionally.

Among the billions, what is the impact of a single life?

I have said multiple times, here and elsewhere, that I want her struggle against this disease to have been the turn of the tide–that I want to stand at her grave and tell her that her death really lit the fire that ended NET cancer once and for all. I know that is an egotistical statement–and that people likely laugh at me behind my back when I say it. But I have dealt with people laughing at me for most of my life. In the end, that laughter only fuels my determination.

Even so, I have doubts some days. Among

the billions, what is the impact of a single life?

Radio-telethon’s response

Yesterday I had to drive to Brockton to deliver the check for our Marathon Walk t-shirts. WEEI was in the final day of its annual Jimmy Fund Radio-Telethon and I was listening to it–as Jane and I did every year. The stories of the patients, the doctors, the researchers and support staff are joyous and horrible and beautiful all at the same time.

The stories…are joyous…horrible and beautiful…

They interviewed one young girl yesterday who faced cancer twice before her twelfth birthday and is preparing to go to start her senior year in high school. There was a young man whose chemo-therapy so damaged his heart that he had to have a heart transplant in his early 20s. Now, in his 30s, he has become a cancer researcher at the Dana-Farber Cancer Institute.

And then there was Toby. Toby was not there to tell his story. He died some years back. He was in his late teens.

Toby’s story

During Toby’s treatment, Dana-Farber was trying to create support programs for teens undergoing treatment for cancer. I know how difficult being different can be for any adolescent. But cancer extorts an especially terrible social–as well as physical–toll on teens in particular. The support staff organized trips to museums and ball games and all kinds of different activities–and everything seemed to the staff to be going fine.

His words changed the program.

Then Toby took the young woman who was running the program aside one day. He told her what they were doing was great for getting the kids’ minds off their illnesses, but that teenagers are social creatures–and what they really needed was social time together–time to be normal teenagers, even if they had no hair and were perpetually nauseous.

His words changed the program. Now DFCI arranges trips around the idea that social time, away from the needles and the radiation, matters–that a trip to the beach or Disney World can be more important for kids than an escape to the Museum of Science or the Cape Canaveral Space Center.

Cancer kills bodies, not ideas

Toby’s cancer killed his body but it could not kill his idea. Toby lives in every one of those kids who goes off on a Jimmy Fund trip. His battle goes on in every softball tournament his parents organize.

Toby lives in every one of those kids…

Too often, we see in obituaries the phrase, “lost his/her battle with cancer.” But the truth is something different. One of Jane’s doctors reminded me the day before she died–when we knew there was nothing more we could do–that Jane had said she wanted to beat NET cancer–and that now the only way for her to do that was to die and take it with her–that it would die when she did. It was cold comfort then–and not much better now.

Jane’s NET cancer battle continues

But Jane’s battle against NET cancer goes on just as Toby’s does against his. Neither has lost the battle against their cancer unless those of us left behind give up our battle. Every dollar we raise makes a difference. Every bit of research makes a difference. Every bit of hard-won knowledge makes a difference.

Every death makes a difference–but so does every life.

Marathon Walk Update

I am officially a three-star pacesetter. Unofficially, I have raised just over $6000 for this year’s Jimmy Fund Marathon Walk. The final level is just under $4000 away. If we reach that by September 1, I will shave my head for the event. If the team reaches $50,000 by September 1, I will shave my head for the event even if I personally do not reach $10,000.

If both happen, my head stays shaved until Christmas.

All monies we raise will go to NET cancer research and education through the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at the Dana-Farber Cancer Institute.

Great NET cancer info site

It is not often I discover a NET cancer site that I tout in one of these posts but cancer.net has created such a site. Their section on NET cancer is superb–and clearly aimed at a lay audience. If you are new to NET cancer, whether patient, caregiver, or primary care physician, I strongly suggest you make their site your next stop. It is beautifully organized, well-written, and creates easy access to the basics of the disease. It is the site I wish existed at the time of Jane’s initial diagnosis.

…the site I wish existed at the time of Jane’s initial diagnosis

Part of the set-up is the most comprehensive list of symptoms addressing several different forms of NET cancer I have seen.  Again, the language used is easy to understand. I cannot say enough nice things about what they have done here.

Latest WWJ NET cancer shirt designed

I completed the design on the front of our Marathon Walk T-shirt earlier today. These shirts will not be offered for sale but will go to members of our Caring for Carcinoid Walking with Jane Jimmy Fund Marathon Walk team and those who have made a $100 donation to the team as a whole or an equal donation to support an individual team member’s Walk.

The design is pretty striking

All funds our team raises will go to the Walking with Jane Dybowski Fund for Neuroendocrine at the Dana-Farber Cancer Institute to support research and education on NET Cancer.

The design is pretty striking, if I do say so myself. It will be printed on our traditional ash grey t-shirt.

Site revision underway

Work has begun on the latest major update of this website. The largest part of that revision will be the addition of an easily accessible archive of these posts, something a number of people have asked for the last few months. Initially, the archive will only be by date, but I hope to add categories and tags to the mix fairly soon as well. Carissa Broadbent will be handling the major lifting on that project.

People facing NET cancer already have enough physical stress symptoms in their lives

She also has a variety of lesser tweaks in mind we hope will make people’s time here a better one. People facing NET cancer already have enough stress in their lives without having to fight with websites they have turned to for information. We have tried to keep things simple here. If you have ideas that might help with that, feel free to let us know.

I’ve also made some changes to the visual design of these posts in recent days. I will continue to try new things to make things more visually appealing.

NET cancer plan needs ad agency help

We are also looking for an ad agency to help us come up with a name and marketing materials for a fundraiser we are trying to put together for NET Cancer Awareness Day on a pro bono basis. While the short-term plan is to start in South Coastal Massachusetts, the  long-term goal is to create something with national reach. If we are ever going to find the amount of money we need to really take out NET cancer we have to get beyond my friends, neighbors and acquaintances.

…we have to get beyond my friends, neighbors and acquaintances

If you know anyone with this background who could help, let us know at walkingwithjane@gmail.com.

Marathon Walk Update

My unofficial total so far is $5587.40. I reset my goal numbers this morning to $7500 on the Jimmy Fund site. With the walk date–September 9–now under three weeks away, we really need your help. My eventual goal is $10,000. Last year, I raised an even $4500 on the Walk.

We also need more team members

The Caring for Carcinoid Walking with Jane team–with what I mailed this morning and the $200 that arrived in today’s mail–sits at just under $10,000. That puts us just over the total Walking with Jane raised for the Greater Fall River Relay for Life this year, but well off the $35,000 Caring for Carcinoid raised last year for this event. Without a major push over the next couple of weeks we will be unlikely to reach even the $25,000 goal we set for this year.

We also need more team members. If you can walk five miles or more and raise $300, we want you to join us. In addition to our shirt described above, you will also receive an official Jimmy Fund Marathon Walk t-shirt–and done something very useful to others with a Sunday morning and afternoon. Please join us.

The fear

NET cancer haunts my life.

I realized that over the last two days. I spent last week visiting friends. When I was younger I called their home “The House of Healing.” I met them when I was broken, mentally and emotionally. Eventually, I was broken physically as well. My early 20s were not kind to me. My late 50s were even more unkind. Jane’s slow decline chewed a hole in my soul.

So I spent last week healing. My friends let me talk. They reminded me I was human and helped me begin to come to terms with what happened two years ago. By the end of the visit I felt like I could breathe again–that though the work before me is heavy, it is work I can handle.

The return

Putting the yoke back on my shoulders, though, is difficult. I spent a week not writing and not constantly thinking about the needs of others. I put NET cancer on the shelf for a time. I focussed on my self. It was a good thing–the right thing–to do for those few days. I realized just how close I was to breaking down–how much pressure I had put on myself–how much I had hurt myself. I worry that getting back in the traces will put me right back where I was.

…(we do) a better job preparing women to become widows

than men to become widowers.

Part of the problem grew out of guilt. In the back of my mind has been the constant feeling that I let Jane down–that her death was because I had failed as a caregiver and a husband–that even at the end I made too many poor decisions that only extended her suffering. The logical part of my mind knows better, but the emotional mind is not controlled by rational thought.

The expectations issue

One friend reminded me that our culture does a better job preparing women to become widows than men to become widowers. In general, women outlive the men in their lives. They expect to find themselves alone. That was our expectation, too. My family’s history of heart disease and my own ongoing wrestling match with cholesterol underlined that multiple times. I was the one taking serious medications, not Jane. We expected our roles to be the opposite of what they turned out to be.

The story of her life–and of its end–fuels me.

But NET cancer is insidious. It is hard to diagnose. It gets little funding. The research is years behind that of other cancers. For 30 years it gnawed on her innards undetected. And when it was finally discovered there was little anyone could do but ease her way to death.

Not that we didn’t try to fight it. We did. We threw everything the medical establishment could dream up at it–and some things they had not thought to try until Jane arrived. But it was not enough.

A pleasant dream

I dreamed of Jane last week and again this morning. We walked through a birch forest together. We did not say much. We did not need to. Just being together was enough. There was a deep peacefulness to it . For the first time in a long time there was no terror in it–or longing. We were content.

Putting the yoke back on my shoulders, though, is difficult.

In this world, I am not content. NET cancer is a nasty foe. Jane and I said we would beat this thing–if not for her, then for others. We both believed that the good of the many outweighs the good of the few–or the one. The story of her life–and of its end–fuels me.

Together, we battled NET cancer. In the end, together, we will defeat NET cancer.

Marathon Walk Update

My hat, bib and t-shirt for the Marathon Walk arrived in today’s mail. I am #146. I have no idea how numbers are assigned.

Some time last week my two Pacesetter Stars arrived. I have earned a third star, unofficially, and hope that by September 9 I will have qualified for the fourth one. That, however, will require that I earn as much between now and then as I have raised to this point. My goal for this week is to get past the $6000 mark, which means getting at least another $900 between now and Friday.

If you have not yet made a donation, now would be a good time. With your help we can make NET cancer history. All funds I raise go to fight NET cancer.

Where I’ve been

Sometimes the endless war against NET cancer gets to be more than I can bear. This week I have taken some much-needed time off to try to deal with the emotional toll all of this exacts from me every day. I’ve spent some time talking with friends and evaluating what I am doing and how I have been doing it.

This is an ultra-marathon,

not a sprint.

I’ve come to a number of conclusions about a number of different issues this past week, not least of which is I need to take more frequent short breaks where  I think about things other than cancer in general and NET cancer in particular.

What this means

None of which means there will be any huge changes in terms of Walking with Jane or this website. I am just as determined as I was a week ago to help find a cure for this disease and help current patients with the burdens they are carrying. That means continuing to read the research, continuing to update and build this site, continuing to raise money and write pamphlets and ask annoying questions.

But when mental, physical, and emotional fatigue set in I am going to try to be a little more proactive in dealing with them. I have to be reminded periodically that finding the answers to NET cancer’s multiple issues is not going to be something we accomplish quickly. To use the cliché, this is an ultra-marathon, not a sprint.

Rest provides perspective

One of the other  things I’ve allowed myself the luxury of the last few days is to really look at our accomplishments in the 20 months since Jane died. I forget sometimes that Jane was diagnosed with NET cancer just two years ago this week and that it was not until four months after her death that I began working seriously on Walking with Jane.

We are still two weeks shy of the first anniversary of this website. In that time we have had over 11,500 visits and undertaken two major revisions of the set-up. Barely a year ago I sat down with our lawyer for the first time to talk about setting up Walking with Jane as a non-profit. Just over a year ago I sat down with people from two other NET cancer foundations to talk about how a Walking with Jane foundation would fit into the overall picture of the battle against this disease.

The Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber is six months old this week. We are still five days short of Walking with Jane, Inc.’s three month anniversary.

Some financial success

In the last 15 months we have raised close to $53,000–and if  I add in a matching grant and what the rest of the Caring for Carcinoid Walking with Jane team has raised so far for the September 9 Jimmy Fund Marathon Walk, we are closing in 0n $70,000. That is more than I made my last year of teaching. And while that amount is a drop in the bucket compared to what it costs to fund even a  single drug trial, it is a substantial amount to have raised from a standing start in just a year and a quarter.

Being taken seriously

At some point this week I began to understand why the people at the Dana-Farber Cancer Institute and the Caring for Carinoid Foundation are so impressed and lavish with their praise for our little start-up. For all that I may feel lost and confused and unsure about what we are doing, we are not acting like we plan to remain a minor player in this campaign against NET cancer. We have a long way to go before we reach the vision I have for Walking with Jane, but we have taken some serious steps in that direction.

The price of progress

But I have worn myself out doing it. With just a month left before the Marathon Walk my mind and body both declared it was time to go walkabout for a bit. I wrote a very poor post earlier this week, posted a new link about the success of a new drug trial in the Resources section, but until this morning have otherwise tried to put my mind in neutral on NET cancer. I’ve spent the week working through some grief issues I have tried unsuccessfully to ignore for too long, thinking about my personal future, and talking with some old friends I have not spent time with in too long.

The war against NET cancer

is not close to being over.

I likely won’t write too much this weekend. I still have some issues to work through before I am fully fit to return to duty. But three weeks from Sunday is the Marathon Walk and I have a great deal still to do before then. I’d like to get close to the $10,000 level for that event personally, and have some ideas for how to get there.

The war against NET cancer is not close to being over. This soldier’s leave, however, is about up–and he is ready to get back to the fight.

Marathon Walk Update

As of the latest official numbers, our Caring for Carcinoid Walking with Jane team has raised $8573.80. That is good for 33rd place overall.

My personal online fundraising has stalled this week during my break from all things Walking with Jane, though I did add a few dollars to the bottom line. My official personal total is $4140.20 which, according to this morning’s updated numbers, is good for 36th place, overall and first on our Caring for Carcinoid Walking with Jane team.

Elizabeth had a very good week and crossed the $2500 this morning for second spot on the team roster. She is 73rd overall.

Jenaleigh holds third on the team at $525.

Our team goals for both walkers and money remain well away from what we want. We still have but twelve walkers against our hoped for 25. We have raised about a third of our $25,000 goal.

We  have three weeks from Sunday between us and the walk. It is never too late to donate. Nor is it too late to join our merry little band of NET cancer warriors.

NET root of my mood

I have taken the last few days to try to get a handle on the latest grief tsunami. I am increasingly disturbed by my inability to move forward emotionally. The truth is that with each passing day I seem to have more and more difficulty with my emotional state.

Part of the problem is what I am doing here. Every post reminds me That Jane is no longer here. Every piece of research underlines how little we could do to help her then–and how little we could do to help her even today. Every failure to reach a specific goal in the fight against NET feels like I have failed her. Intellectually, I know that is not the case. Logically, I know that is not the case. But my emotions refuse to listen to my logic or my intellect. They consistently reject the evidence that says clearly that what we are doing–even when what we are doing falls short–is making a real difference in our progress against the disease.

NET progress is real

And that progress has been significant. We are successfully growing cell lines in vitro, we are in the process of proving an animal model, we have new drugs and therapies moving toward approval. In the last month we have potentially reached 60,000 people with information about NET. This fall we will begin the DNA analysis that will finally begin to show us the causes of NET and give us a clearer idea of how to target the mutations that cause the cancer. A cure may still be decades away but the evolving research base has begun to build the base that will take us there.

Political realities

That is all good news–but it is news that underlines the difficulties we still face. The political realities in Washington make it unlikely we will see much in the way of federal money in the near future. Mobile/Exxon will continue to receive tax cuts and federal reimbursements totalling billions of dollars, but NET cancer patients will continue to die because a 1968 cost-benefit analysis

failed to see a significant enough gain for the money that would need to be spent.

Drug trials cost money. Basic research of the kind we need to do to crack NET costs money. But corporate profits matter more than human lives or human suffering. Sustaining a military with a budget larger than the next 58 countries combined matters more than funding research into cancer in general and NET in particular.

Not just rights, but responsibilities

I believe in America. I believe in democracy. I believe in the Constitution. I believe we are a compassionate nation. I believe that the people of this country know that our country is about shared responsibility every bit as much as it is about individual freedom. Without shared responsibility there is no such thing as freedom.

Americans care about each other. They want to see cures for disease just as much as they want to see victory in war.

NET success requires change

But for the last 40 years our government has been more concerned with feeding corporate greed and warfare than in the welfare of its citizens. That needs to change.

Otherwise, our public health issues will continue to grow. Research into cancer in general will continue to slow–and research into NET will continue to depend on the kindness of strangers.

For 20 months the tenth of the month has been more difficult than any other day. I felt the familiar emotions building days ago. Sometimes the anticipation turns out to be worse than the day itself. Other months the anticipation is dwarfed by the power of the day.

This month I tried something new. I tried to treat today like any other day–beyond my visit to Jane’s grave. I got up this morning, vacuumed the house, picked some tomatoes, went to the bank, and the post office. I took myself out for breakfast, watered the garden, put out some letters and some thank you notes. I listened to the radio and watched some TV.

I wish I could say staying busy helped a lot. It didn’t.

Grief is not what you think

This thing we call grief is a strange creature.

At first you believe that eventually you will get over it. It is what you have read and what you have been told and come to believe. Gradually you begin to understand that things will never go back to what they were. You have to adapt to this “new normal,” and there is nothing normal about it.

Someone tried to tell me once that grief is like a bad break-up or a divorce. Nothing could be further from the truth.

Grief is Hell

Night has come on and I feel as alone as I ever am. Her absence is as palpable as it was the night she died.. The house is as quiet as when I came home from the hospital that night. But the numbness has long since worn off and the raw pain of it is like the Puritan description of hell. If you have ever burned yourself you know the initial searing pain of it. Now imagine he numbness that follows never happens. Instead, you discover that initial pain was numbness by comparison.

That is Hell–and that is grief.

Except it can’t be Hell. The denizens of Hell perfect their evil in their pain. They almost revel in it for all its pain. And given the opportunity they are more than willing to inflict even more pain on their fellow sufferers.

Yet grief-stricken are not demons

Yet those battling grief are among the most kind and supportive people I have met in my life. Weep, and they will set down whatever they are doing and lend you whatever shoulder, shirt or ear they have. Laugh, and they will rejoice that you have found the strength to laugh again. Love, and they will praise the strength that allows you to risk again the towering sorrow that comes with death.

I cannot explain the paradoxes of this new life I live. I can only observe and report on what I see and what I learn.

And I would really prefer that no one have to experience this new normal, this indescribable pain, this endless empty plain.

Grief strikes us all

I know half the population is stuck with this eventual fate. I would like to delay your experience of it as long as I can. It is why I walk against this disease and that disease–why I do what I can to feed the hungry and heal the physical and mental wounds that war inflicts.

Grief comes to us in many ways and in many packages. All are painful.

Marathon Walk Update

NET Cancer is not the only kind of cancer. I know that, though reading the vast majority of what I write one could come a way with the impression that I don’t. In the last few weeks I have had two former students who have, since they graduated, become good friends, lose people close to them to cancer.

There are no simple, clean, painless deaths from cancer. Each has its pattern of slow annihilation. And each leaves the loved ones who go on with emotional scarring that changes everything.

The Question

Tonight I went to a wake for the second student’s father-in-law. The newly widowed woman asked me a question I never know quite how to answer: “Does it get better?”  Three days short of the 20 month anniversary of Jane’s death I was in an even worse position than usual to answer that question. The familiar build-up to the tsunami that lands on me once a month has already begun.

I gave her the best answer I could: “It gets different–and in that sense it does get better–but at 20 months in, the ache is still there. It is a long process.” I offered the best solace I know how and told her daughter-in-law to have her call me if she needs to talk. But I find it hard to lie about grief, even a little.

The Real Answer

My next-door neighbor lost her husband more than a dozen years ago. After Jane died she took the time to talk to me. She did not sugarcoat any of it.

“People tell me I have gotten over it,” she said. “I nod my head. I smile. I tell them what they want to hear. But the truth is, it still hurts as badly as it ever did. I still cry. But no one sees it. The hurt is different. But it is still there, still awful.”

I’d like to tell you she is the exception. The truth is otherwise in most cases. Oh, there are some who seem to get over it and move on. But for the majority it seems the appearance of normalcy is an act. Among ourselves we can share the reality the world does not want to hear: The pain changes form; the pain changes in intensity now and again; you learn, slowly, to live with it and bury it in public so you can do what needs doing–but it is a constant companion that does not seem to truly diminish.

Consolation

When someone dies a particularly painful death we try to console their mates with phrases like, “She is out of pain now” and “He is in a better place.” And that is so. What we do not understand is that for the spouse left behind the pain is really only beginning–even though they have been through the awesome pain of watching their other half fight through the illness that finally claimed them.

Though I am not Christian in the dogmatic sense, the Bible says it well in describing a married couple as one flesh. The death of one half rends the other crippled and in great and seemingly unending pain. It is as though someone had sliced you in half and you had survived the operation. And the tighter the bond between the couple, the greater the pain of that separation is.

I have lost my grandparents–all of them when I was old enough to understand their deaths. I have lost my mother and my mother-in-law–who was like a second mother to me. I have lost friends. None of those losses measures even a tiny fraction of the loss of my wife.

Personal Reality

I am writing this tonight on our back porch. There is a gentle breeze dissolving the heat of the day. The hummingbirds have flitted in and out, sucking nectar from the flowers that line the deck and sugar-water from the feeder. They have serenaded me and hovered so close that I could have reached out and touched them. It is amazingly beautiful and peaceful–and sadder than I can say.

It is the kind of thing that Jane and I looked forward to every summer–the kind of thing we were looking forward to even more when we were retired–the idea of time and space together unencumbered by any kind of future responsibility. I want to reach out and hold her hand, pull her close to me and feel her head resting against mine and mine against hers.

Her cancer took that from us. It took it from the widow I met tonight and the widower I met two weeks ago.

It takes it from someone every day.

Marathon Walk Update

We have had two solid days of fundraising for The Jimmy Fund Marathon Walk so far this week and are closing in on the week’s goal of $1100. I am hoping we will hit $10,000 before the September 9 walk. All money raised by our team will go to research and education about NET Cancer.

Twitter

You can now follow Walking with Jane on Twitter as well as Facebook. The latest news often gets posted there before I can write it for here.