Death and my morning walk–Part 1

I am too closely acquainted with death. I realized this today during my morning training for this year’s Boston Marathon Jimmy Fund Walk. I had barely started the five-mile trek when I came across a dead chipmunk in the middle of the road. A car had crushed it with the same lack of concern that cancer attacks the human body.

They are dying–and I am too closely acquainted with death.

The body was desiccated–almost mummified–and flattened. Most people would not have noticed it–nor given it a second thought if they had. But for me that sudden confrontation brought a sudden memory of Jane in her last days, lying in that hospital bed. Tears welled behind the dams of my eyes: I am too closely acquainted with death.

Deadly reality of carcinoid/NETs

I am too closely acquainted with death. I know at least a half-dozen people who are lying in hospital beds as I write this. Each of them suffers from the same carcinoid/NET cancer that killed Jane. Some will get out of those hospital beds and return home to spouses and children and friends. Some may leave those beds the way Jane did: on a gurney to the hospital morgue–and then to a hearse.

Most people would not have noticed it… 

I know with near certainty that virtually every person I know who has this disease will die of it or as the result of something it causes. They will fight it with everything they can lay a hand on–the same way Jane did. But barring a sudden, near miraculous scientific discovery, their spouses and children and family members will watch the same slow spiral into death that I did. I am too closely acquainted with death.

Death and my morning walk–Part 2

I am too closely acquainted with death. About halfway through my five miles this morning I came across a dead sparrow in the middle of the sidewalk. There was no mark on it, but there it was, lying on its side, legs hanging stiffly in space, its tiny mouth open in a final exhalation: dead. It had no business being dead. Other than its position and lack of movement, it looked fine.

 Some may leave those beds the way Jane did…

But if God notices the fall of every sparrow, only God and I had noticed this death. And while I know I cared about that death–the tears came again as they had with the chipmunk–I can’t testify to God’s reaction. I seem to take John Donne’s quote on death–that every man diminished him because he was involved with mankind–a step further. Every death touches me for I am involved with all living things. And I am too closely acquainted with death.

What does one say to the dying?

I am too closely acquainted with death–and yet I have no idea how to console the sick or the dying in any way that feels useful. I sit with them–figuratively and literally–but I have no words to ease their passing. No amount of handholding, hugs, or kisses–no gestures truly ward them from what they confront.

There was no mark on it…

I remember my last awkward words and actions when Jane came back to consciousness one final time. I told her what I knew was happening as gently as I could. I knew she wanted to be told the truth. It was who she was. But it hurt her more than it consoled her. I could see that. Her brief tears and her eyes sliding away from mine–I woke up for this?–haunt me to this day. I am too closely acquainted with death.

What does God say to a sparrow?

I am too closely acquainted with death. What does one say to someone lying in a bed with all their hopes and dreams lying in smoking ruins around them? I have been in too many rooms like that–held too many limp hands–listened to too many last breaths–and I still have no idea what to say or what to do to make that passing easier.

…I have no idea how to console the sick or the dying…

What does God say to a sparrow in the mouth of a cat? What does God say to a chipmunk facing an oncoming car? Whatever God there is has powers and wisdom that dwarfs my own–but I doubt that entity has any better bedside manner in the hour of death than I do. I am too closely acquainted with death.

What does one say to the grieving?

I am too closely acquainted with death. Yet I still don’t know what to say to a grieving husband, wife, or child. I know only that the platitudes one hears at wakes and funerals are meaningless–useless bits of twaddle that may make the speaker feel they have done something–but do nothing to ease the grieving heart of the widow or widower. My father got it right the night Jane died. He’d lost my mother ten months before. “Now you know,” he said, “That nothing anyone says can ever make this feel better.”

I have been in too many rooms like that…

I’ve tried a different tack since Jane’s death. I come armed to every wake with information about local and online grief groups. I give my phone number to those who do not have it. I don’t kid myself that this does any good. My phone does not ring. I never see these people at the groups I refer them to or find them online in the grief group I recommend there. There really is nothing anyone says that can make this any better. I am too closely acquainted with death.

Death and my morning walk–Part 3

I am too closely acquainted with death. As I came into the last half mile of my walk an ambulance screamed past me, headed in the opposite direction. I knew that inside that box someone was fighting for air and for life. I’m sure it wasn’t anyone I knew. But I have carried them in my heart and in my thoughts all day, just as I have that sparrow and that chipmunk–just as I carry every dying carcinoid patient, whether I know them or not.

…nothing anyone says can ever make this feel better.

One week from today I will be orbiting the track and the Relay for Life of Greater Fall River. At 6 p.m. we will celebrate the cancer survivors in our midst. In some respects, it is the hardest part of the night for me. I am jealous and envious of those longterm survivors–the people for whom we had a cure when they needed it. There is no cure for the cancer that killed my wife. I can remember. I can fight back. But I can’t begin to celebrate while we have no cure for my friends lying tonight in hospital beds with carcinoid/NETs. They are dying–and I am too closely acquainted with death.

Questions answered

A new video on the NETest I talked about here back in April answers some of the questions I raised about it then–to my satisfaction at least. I still have concerns about the process of  certifying lab tests and medical procedures. But hose concerns are with the lack of regulation of seemingly all tests and procedures in the medical field. I can’t honestly hold this test to higher standard than we have for cholesterol testing.

The NETest satisfies the standards in place…

Wren Labs is not talking about using the test–at least for now–as a diagnostic instrument. They are offering it only to patients who are symptomatic, have been diagnosed with the disease, and need some reliable way of measuring the progress of the disease and whether or not current therapies are working for them. They also can use the test to determine whether or not a surgery has actually achieved a cure at a microbiological level.

Europe vs. US, as usual

The test is finding, according to the video, considerable acceptance in Europe and with at least one set of doctors in the US. But most American doctors seem reluctant to embrace it the way the Europeans have. I’m a bit confused by that and don’t buy the video’s explanation for it. Six hundred test subjects does seem still, to me, a bit thin statistically. But at the rate they claim to be getting samples from Europe, an examination of the data should prove conclusive soon enough–at least for the uses they are currently suggesting.

Wren Labs is not talking about using the test…as a diagnostic instrument.

It will require a different set of tests to determine how well it can diagnose carcinoid/NETs, but I don’t perceive a reason it should not work as one in the longer term if I understand the process it uses to determine tumor activity correctly. But I am neither a doctor nor a researcher. I hope, however, the necessary testing to determine its value as a diagnostic tool is done as quickly as makes sense. We desperately need such a test.

Progress on insurance front

The video also says they have received a billing number for insurance purposes from the AMA. It remains to negotiate reimbursement amounts from insurance companies–and that will take some time. In the meantime, they are still offering patients three tests for free.  It would seem, to me at least, that carcinoid/NETs patients have little to lose and, perhaps, a great deal to gain, given this offer. Additional tests beyond that are $750 each–which they say covers their costs and nothing more.

American doctors seem reluctant to embrace it… 

But I am not a doctor and am not giving medical advice here. You should talk to your doctor about the test if you have carcinoid/NETs and talk about how it would/could be used in your particular situation.

Another use for test

Nancy Teixeira, the nurse who makes the presentation, indirectly suggests that patients can use the test in another way: To discover whether their doctor is really up-to-date on carcinoid/NETs and really an expert on the subject. Between publications and a presentation at NANETS last fall, anyone who knows and follows the literature about this disease should be familiar with the test.

…they have received a billing number for insurance purposes…

If your doctor says he/she has never heard of the test, perhaps that person is not as expert as he/she claims. Certainly every doctor in the field I’ve talked to about the test has heard of it and is familiar with the research–even if they are not yet ordering it generally for their patients.

Another story for another day

For me, however, what I have learned about medical testing in the last few months while following this story–and about medical procedures as well–and the lack of real regulation or oversight of those things raises concerns no video can fully allay. The NETest research satisfies the standards in place  for medical tests just as well as any other test in the medical arsenal.

…patients can use the test in another way…

Unfortunately, that’s not saying much. That is not a criticism of the NETest or those who developed it. They have followed the procedures in place. It is, rather, an indictment of the entire system we use to certify labs and testing procedures generally. There is no FDA-equivalent for diagnostic tests–no trials to run, no double-blind testing, no independent certification of any kind. I find that worrying–not just for carcinoid/NETs patients, but for everyone.

So little time

Relay for Life of Greater Fall River is just two weeks away–and our team is a long way from reaching its goals for this year’s event. My personal goals are also a long way from being reached as well. We need your help to get us over the hump between now and then. To do that, I am announcing three fundraisers you can get involved with.

Hairless vs. Hairy at Relay for Life

The first of these is simple: vote in the Hairless versus Hairy Harry Challenge. Here, you get to help decide whether I go bald for Relay or not. If you  want me to go hairless–at least at the top of my head–go to my personal Relay Fundraising page and make a donation in an odd dollar amount–$11 or $25, for example. Those donations will count as votes for a bald Harry.

I need to raise another $710…

If you want me to keep my hair,  go to my personal Relay Fundraising page and make an even dollar donation–$10 or $26 or $30, for example. Those donations will count as votes to keep the hair on my head.  The minimum donation is $10. I post the current score whenever it changes on our Walking with Jane Facebook page.

Yard Sale Appearance for Relay

If you don’t want to give online and are going to be in Westport on Sunday, June 22 between noon and 5 p.m., I’ll be at the Westport Social Club Craft and Yard Sale on Main Rd. in Westport selling Walking with Jane merchandise and taking donations and votes. Come by and browse. All our table’s proceeds will go to support our Relay for Life team.

Art for Sale for Relay

Morgan Bozarth has donated one of her paintings to the cause. It is the subject of a silent auction on our Facebook page. The last day to bid online on it is June 26, but we will take bids at Relay until midnight June 27. It is an impressive piece of work that will look good in your home–and is a good investment as well. The current bid is listed on our Walking with Jane Facebook page. You’ll also be able to bid at the Yard Sale.

Relay by the numbers

My personal goal for Relay is $2,000 this year. As I write this, I need to raise another $710 to get there in the next two weeks. Our team goal is $15,000–and we are about $8,000 short of that. We need at least $1700 to match our total from last year. To get a fundraising level above the Platinum we hit last year, we need $3,000.

Two weeks? With your help, we can get there.

Living with death

I’ve been alive 22,709 days. I’ve been married to Jane for 9,047 of them. But she’s been dead for the last 1,278. Where once I thought about our future life together, now I have trouble getting beyond her death.

 I do it because it needs doing, even when it makes me cry.

In less than three months I face what would have been our 25th wedding anniversary. We had plans for that day. Now it is shrouded in pain and death. I thought about having the party we talked about at one point, turning it into a fundraiser to pay for more research into the carcinoid/NETs that killed her. But it seems a crass way to spend the day that should have been so joyous–and been ours.

Does Death permit messages?

I want to tell people I am better now than I was on that cold December night 42 months ago today when I kissed her one last time and closed the eyes she could no longer close. But I can’t because it would not be true. I have some days that are better than others, but they all begin and end the same way: The other half of the bed is empty, not because she has gotten up to take a shower or use the bathroom, not because she has stayed up to work on her cross-stitch, but because her body now resides in a grave beneath a head stone in a cemetery at the top of a hill–and her soul…

…I have trouble getting beyond her death.

I like to think she sends me messages sometimes–though they are increasingly rare. This week I left the drapes open in the living room one night. In the morning I came out from the bedroom to find the sunlight bouncing off and through a glass table filled with our houseplants. It painted a rainbow on the floor with one strand. The second struck a photo college that hangs on the opposite wall on precisely the picture we used to create the Walking with Jane logo.

A fine and private person

People who didn’t know the Jane I knew tell me she is proud of all I have done to kill this disease–and happy about it. But Jane was a very private person. She did not like being out in front and leading. She hated the thought of being a public figure. She did those things when she had to–and she was good at it. But she hated it.

I want to tell people I am better now…

She might see and understand the necessity of what I have done with her pictures and the story of her life and death–but I have never thought for an instant that she liked it. Then my physics teacher wife splashed some photons on the floor and on the wall–and suddenly I am not so sure.

Death and paralysis for the living

These last few months have been particularly hard for me. Over the last week, there is not one day I have not found myself weeping. I sing songs in the house every morning as a vocal exercise. There are lines that suddenly leap out at me and the tears well up and fall. But I keep singing, my voice broken by the suddenly empty sobs.

…my physics teacher wife splashed some photons on the floor and on the wall…

There are times I think I should make a CD that begins with “Where have all the flowers gone?” travels through “Sugar Mountain” and “Amazing Grace” and ends with the “Hallelujah Chorus” and “Ode to Joy.”  I’d call it “Songs for the Dead” or “Songs of the Dead for the Living.” Then there is the book I’d like to write–a memoir of these years called The Widower’s Tale. I work on it in bits and starts. Some of these essays will form its backbone.

The distilled emotions of death

But I can’t bring myself to face either task yet. Three-and-a-half years after Jane’s death it is still too fresh. I still wake up too many nights in inconsolable grief. I still have too many lost weekends where I sit in a chair and stare off into space remembering and trying to run away from those memories; drunk, not on alcohol but from the pure distilled emotions of that final year.

These last few months have been particularly hard for me.

A friend recently diagnosed with this foul disease asked me recently if I couldn’t take six months or a year off from this daily confrontation with pain to focus solely on my own grief and healing. Part of me would like nothing more. But the doing of that has a price I can’t pay: the knowledge that others have come to the same place I reside when I could have done something to try to prevent that.

Death is hard, especially on the living

So I keep walking, I keep talking, I keep writing, I keep studying, I keep working with patients and doctors and researchers, I keep throwing myself into close proximity with this disease that I hate. I don’t do it to make Jane happy with me or proud of me. I don’t do it because it will ever ease my grief. I do not do it because it is easy. I do it because it is hard–and I do it because it needs doing, even when it makes me cry.

( A brief post script: I finished this piece at just about the moment of her death. Getting some odds and ends right took a bit longer.)

The stigma of living with carcinoid/NETs

Living with carcinoid/NETs is not like living with most other forms of cancer. No one hides the fact they have breast cancer since Betty Ford brought it out of the closet and into the public domain 40 years ago. And while there can be a stigma attached to lung cancer–you smoked so you have no right to complain, some think–people are usually pretty up front about it as well.

…that requires a special kind of courage…

But carcinoid/NETs patients are the homosexuals of the cancer world. They remain closeted even from their spouses and doctors because the symptoms can be so embarrassing. Few want to talk about the painful bloating and gas–and no one wants to admit to daily diarrhea–let alone the multiple episodes a day that become increasingly the rule as the disease progresses.

Living with constant diarrhea

I went through this for years with Jane. Very occasionally she would admit she’d had a diarrhea episode in the morning and taken an Imodium to settle it so she could go to work. We were very open with each other about most things, but her bathroom habits, I learned early in our marriage, were not something we were to discuss. I wonder, periodically, if I should have pressed that issue harder earlier, but I am fairly certain she would have lied to me about it. Diarrhea embarrassed her like few other things.

…carcinoid/NETs patients are the homosexuals of the cancer world.

The first year we set up this website I conceived this idea to do a series of news and feature pieces for newspapers nationally on carcinoid/NETs. We had no trouble lining up interviews with doctors, researchers, and foundations. But finding patients who were willing to talk about their experience living with the disease on the record proved very difficult. We finally did find someone, but it was very late in the game when we did and I was very much afraid we would have to do without the patient piece at one point.

Hiding the embarrassing truth

My goal when I started was to put a human face on carcinoid/NETs. My hope was to start with interviews and eventually find a patient–or ideally, several patients–who would write some of these posts about their day-to-day experience with it. I approached several people about that possibility but ultimately gave up the quest. People routinely turned me down. They told me they were too focussed on their treatment or had been given a clean bill of health or did not want to think about it any more than they already had to.

Diarrhea embarrassed her like few other things.

And I was not going to argue with them. I’d seen what Jane went through–how much focus and energy that consumed. And I had come to understand, as well, over the last year of Jane’s life, how difficult just living with this disease is. It consumes everything and leaves nothing.

Living in the subtext

But in the time since Jane’s death, as my brain has begun to emerge from the total fog of grief and guilt those last days brought on, I have begun to truly listen to what patients are saying–and not saying. Their embarrassment over diarrhea episodes is a constant subtext in what they say and write. They worry about going out in public, about what they can and can’t eat, about knowing where the bathrooms are and how quickly they can get to them.

It consumes everything and leaves nothing.

From very early in our childhoods we are programmed to believe that bladder and sphincter control are the hallmarks of civilized behavior. Uncontrolled diarrhea takes us back to the early days of our toilet training–makes us infants again who are striving for mother’s love and approval. Living with daily uncontrollable diarrhea would be, for most of us, a fate worse than death. Yet that is what many carcinoid/NETs patients face every day. It is no wonder to me that Jane hid the extent of her diarrhea even from me.

Living in the closet

It is no wonder carcinoid/NETs patients are so reluctant to talk about their disease in detail, even among themselves. Homosexuals fear they will be rejected by their parents because of whom they love. It mars many of them psychologically for years. Carcinoid/NETs patients may psychologically fear the loss of their mother’s love because they cannot control their bowels–an even greater sin, given our emphasis on toilet training as a mark of civilized behavior.

Uncontrolled diarrhea takes us back to the early days of our toilet training…

But finding the money to cure this disease means putting a human face on it. That requires a Betty Ford–and that requires a special kind of courage from a public figure that neither Steve Jobs nor Dave Thomas could muster. Or a special kind of courage from large numbers of everyday people willing to put their faces on this hideous disease, regardless of their own potential embarrassment.

Another starfish gone

It is with great sadness that I pass along that Lindsey Miller, who wrote the blog I am a liver–as well as countless other articles in other publications–died on May 21, a day and a half after she and her boyfriend had a “commitment ceremony” in the hospital where she was being treated for carcinoid/NETS.

Lindsey’s was one of the first blogs I read after we first set up this page at the beginning of September, 2011. It was very hard for me to read–not because it was poorly written–it was very well-written–but because everything she wrote reminded me of what Jane went through and the attitude Jane had, right up to the end. Even her lightest pieces made me cry.

Telling the carcinoid/NETS story

In real terms, their stories were very different. Lindsey was a recent college graduate working on a master’s degree that she finally earned. Jane was ready to retire from 30 years of teaching. Lindsey made the trip to Germany for the PRRT Jane and I did not even have the time to find out existed.

Every carcinoid/NETS patient has a different story–except for the ending. The course of every carcinoid/NETS patient’s disease is different–except for the ending. Or at least it seems that way from my perspective.

A time to mourn

But they all share one other thing–an incredible optimism that this treatment or that new procedure or this operation will be the one that sets them free and lets them live a normal life–the life too many of us take for granted. Weddings are not supposed to happen in hospitals days before one of the partners dies. They are supposed to happen in sacred places and mark the beginning of a new life on Earth–not end within hours.

Lindsey and I never met, but I mourn with Jeff–who should have been her husband and partner for many years–and with her family–who should have delighted in her books and her children far into the future. I mourn for all the things that now will never be.

Among the thirty-four

Thirty-four human beings die of carcinoid/NETS every day. That thought comes to mind every night when I crawl into my empty bed. It arises with the sun of each new day. Some days, I know their faces. They are people I have encountered briefly in some online patient support group or spoken to at a patient conference.

Other times–as in Lindsey’s case–they are people whose stories I know in too great detail for a nod and a shake of the head. Their death takes me back to the moment the doctors told me there was nothing more to do–takes me back to Jane’s last breath caught on my own lips.

The other war

Today is Memorial Day–a day for remembering those who have died in our nation’s foolish–and not-so-foolish–wars. But there is another war that grinds on year after year that we never–as a nation–stop to remember the lives it has stolen. Carcinoid/NETS is often a forgotten and ignored front in that war–and that makes its casualties all the harder to bear.

Good night, Lindsey. We will miss your words, your smile, and your infectious optimism.

The reality of killing cancer

When we think about killing cancer many of us think about doctors and researchers in bright white lab coats. When we think about fundraising for killing cancer we often think about the fancy dinners and dances put on with wealthy donors in mind–we think golf tournaments and flashy television productions hosted by stars and attended by celebrities.

…it’s not the size of the donation that matters…

But killing cancer is actually a very blue-collar occupation for operations like Walking with Jane and Relay for Life and many Marathon Walk teams. We don’t measure our fundraisers in millions raised nor our success in millions saved. If we raise a couple of thousand dollars with a single event, we count that as a major fundraising success. The patients cancer research saves or helps are our friends, our neighbors, the person we work with.

Two faces of killing cancer

This was brought home to me with crystal clarity yesterday through two separate and very different events–one in Cambridge, MA and the other in Westport, MA. The first was put on by the Caring for Carcinoid Foundation and brought together significant donors with the best researchers in the field. Walking with Jane co-sponsors a Jimmy Fund Marathon Walk team with CFCF and I send them a–for me–significant check each year. Those two things make us a big enough donor to warrant an invitation to this, among other events.

…killing cancer is actually a very blue-collar occupation…

In no way do I mean anything ill toward CFCF by this. Every charity knows it has to take good care of its major donors or they will go away–taking large sums of money with them that make a very real difference in the work the charity can and can’t do. Walking with Jane has no huge monetary donors on that scale, but I host a party every year for the volunteers who make up our Relay and Marathon Walk teams. We could not do what we do without them. That they are all dear friends and former students that I really enjoy spending time with makes throwing that shindig much more fun and much less work. What those with bigger budgets do is no different, in many ways.

How the other half is killing cancer

But there is a very different flavor to the kinds of events the Dana-Farber Cancer Institute and CFCF host for their important donors. For one thing, there is a lot more money in the room. I took my niece to a dinner at Dana-Farber I was invited to last winter to honor a man who was making an eight or nine-figure donation. Other than the DFCI staff in attendance, I’m sure my niece and I were the poorest people in the room–and by a lot.

Every charity knows it has to take good care of its major donors…

Yesterday’s CFCF event was not on the scale of the DFCI event. CFCF does not raise in a year, I suspect, what DFCI raises just with the Marathon Walk. Still, many of the donors in the room had flown in from elsewhere for the event on their own dime–and had donated, some of them, more than all the money Walking with Jane raised last year and distributed.

Killing cancer is the priority

I am a good social chameleon– at least, I like to think so. I have passable table manners, know which fork is which and know how to wear a suit. I’m lousy at small-talk and the social things that are part of any reception, but have discovered that many people suffer from the same problem regardless of social stratum.

…there is a lot more money in the room.

And regardless of anything else, all of us, no matter how much money we have or what social class we were born into or what political philosophy we adhere to, have a personal interest in killing cancer. Some of us have cancer, some of us have a spouse or child who is fighting cancer, some of us either are or have been caregivers to those people, and some of us have lost loved ones to the disease.

China and paper plates both have role in killing cancer

Cancer does not care how rich you are or how poor you are. Like death, it is a great leveler. And regardless how deep your pockets are, when it comes to killing cancer, we all do everything we can.

...a personal interest in killing cancer.

After the talks were over and I had finished a lunch served on nice china with cloth napkins, I headed to Westport and a very different dinner served in bowls and boats made of cardboard with paper napkins and plastic utensils: the Walking with Jane Relay for Life team’s Chowder and Clam Cake Dinner. The event took place in a school cafeteria and when I spoke there was no fancy lectern or banner. We sold raffle tickets and t-shirts and buttons.

Killing cancer $1 at a time

When it was done, we’d taken in a shade over $2,350. For us, the event was a huge success built out of $12 tickets, $10 t-shirts, and $1 raffle tickets. Where nearly everyone I’d had lunch with was in a suit and tie, the dinner crowd was there in jeans, t-shirts and sweat-shirts. And I was truly socially comfortable for the first time all day.

…when it comes to killing cancer, we all do everything we can.

Most of the nearly $300,000 the Greater Fall River Relay For Life will raise this year will be raised the same way–a few dollars at a time through cake pops and yard sales and $20 flights of plastic flamingos appearing and disappearing on people’s lawns. And every one of those dollars will matter just as much in killing cancer as the dollars raised from the deep pocket folks that get wined and dined.

Small donors equally important in killing cancer

Talk to the professional fundraisers at WGBH, DFCI, the American Cancer Society and elsewhere and they will tell you that every donation–no matter how small–matters; that if all the small donors disappeared over night–stopped making their $5 and $10 and $20 and $50 donations–their organizations would be in serious trouble. They count on donations–big and small–equally. But the big donations are harder to get–and harder to keep.

When it was done, we’d taken in a shade over $2,350…

And Walking with Jane is the king of blue-collar fundraising foundations. Other than from me, our biggest donation has been $1000. It’s happened twice in three years. Since September, we’ve had nearly 500 $1 donations. Our last mailing garnered about 60 responses and raised about $2600–about $45 for each response. We have no overhead: we have no employees; I buy the stamps, envelopes, stationary, and whatever else we need out of my pocket; we run the entire thing out of my home office. That means every dollar you send us goes to killing cancer.

Donor envy and the reality of killing cancer

Sometimes, I am envious of DFCI, CFCF, ACS, and other cancer charities who seem to grow major donors by the truckload. In the last three years I’ve met many people who think nothing of writing out a six-figure check. I’ve met people who are investment bankers, who own substantial stakes in corporations that are household names–who are rich beyond anything my mind can comprehend.

Walking with Jane is the king of blue-collar fundraising foundations.

But I’ve also worked with lots of people who struggle to pay their bills each month, yet still find a few dollars–or a lot of hours–to donate for cancer research. And I’ve observed the reality that those who have the least are the ones most anxious to give without condition. Ultimately, it’s not the size of the donation that matters–it’s killing cancer in general–and carcinoid/NETS in particular that matters.

The inconvenient truth about health care

I’ve spent the last few days becoming increasingly angry. This happens when I spend too much time with the inconvenient truths of cancer in general and carcinoid/NETs in particular. Our health care system in this country is broken on many different levels. Carcinoid/NETs is the poster child for that fact.

…it kills them as surely and as painfully as any other cancer you can name.

The most visible failure is with the way we pay for health care in the US. But it extends into every level of the system, from how we train doctors to how we treat them to how we deal with patients in offices and hospitals. On days like this, I am amazed we manage to diagnose and cure anything without killing and bankrupting every single patient.

An inconvenient truth about the past

Say what you want about Obamacare–and believe me, I have plenty of problems with it–it is a huge improvement over what we had in place before its passage. A serious illness–like cancer–can still eat every nickel you have before its done if you choose the wrong insurance policy. But the insurance companies no longer get to play the pre-existing condition card. Nor can they say to you in mid-treatment, “Sorry, but you’ve reached your lifetime or annual benefit limit.”

I’ve spent the last few days becoming increasingly angry.

No one in his or her right mind wants to go back to the insurance circus before those two changes were made–at least no one facing a serious injury or illness. I won’t be happy until we have an intelligent single-payer system like the rest of the industrialized world has. But what we have now is a small step in the right direction.

The inconvenient truth about insurance

But for patients generally–and carcinoid patients in particular–it is only a small step. Insurance companies still balk at paying for drugs used off-label or deemed experimental–even if you’ve paid for a rider that covers drug trials. Last week, I saw a story on TV about a man in the mid-west who only got his insurance company to honor his trials rider after getting the TV station involved. How many others that insurance company has done something similar to is not on the record. Maybe this is the only time it happened. Maybe it isn’t.

‘Sorry, but you’ve reached your lifetime or annual benefit limit.’

I’ve talked with someone else in Ohio whose drug company doesn’t want to pay for his Octreotide prescription. I suspect it is because its use, while common in carcinoid/NETs patients, is sometimes viewed as off-label. The drug was originally developed to help other cancer patients deal with the nausea and diarrhea of certain chemotherapy treatments in the 1990s. Octreotide also alleviates the symptoms of carcinoid syndrome for many–though not all–carcinoid patients. But it was not developed to do that.

The inconvenient truth about financial support

I wish what goes on with insurance companies were the only inconvenient truth carcinoid/NETs–or any–patients had to deal with. But there are other things that can break the bank financially for patients that no insurance policy will ever cover. Last week, I wrote a long piece on what kinds of resources exist for cancer patients. I outlined ways of dealing with the costs of travel and lodging that are especially a problem for carcinoid/NETs patients.

The drug was originally developed to help other cancer patients…

But while some of those programs are not income or wealth dependent, many programs are. As one patient pointed out, in too many cases you have to be destitute before many programs will talk to you. And even the ones that will talk to you have too few resources to be able to help everyone. The American Cancer Society, for example, only has so many volunteer drivers, only so many rooms in Hope Lodges, only so many gas cards they can dole out in a given year.

The inconvenient truth about charity

The inconvenient truth is no charity raises enough money to meet the needs of all the people who need help. Every time I hear a politician talk about relying more on private donations than government aid–about letting the private sector deal with these kinds of problems, I want to scream.

…in too many cases you have to be destitute before many programs will talk to you.

People are as generous as they can be–even in the current ongoing economic difficulties. As someone whose fundraising is entirely dependent on small donors–our average donation is about $25, and we receive lots of $1, $5 and $10 donations–I know how difficult every dollar is to come by–and what each of those dollars means both to the donors and the patients and researchers who rely on them. But the need far exceeds the resources.

The inconvenient truth about government support

When those resources are not enough, people have to turn to the government for help. They have nowhere else to go. But again, when the demand is too great and we don’t want to raise taxes, the need for help grossly outweighs the supply of help available. For patients, that means less help putting food on the table or keeping a roof over their heads.

…the need far exceeds the resources.

On the research side, it means the supply of research dollars flows to whoever has the most political pull. And carcinoid/NETs has precious little political pull. We spend billions on cancer research in this country each year. But between 1968 and 2008 we spent no federal money on carcinoid/NETs. Since 2011, the US government has spent about $1 million a year on carcinoid/NETs–enough to fund two research projects–whose budgets have been cut every year by the sequester.

The inconvenient truth about medical education

But the inconvenient truth is money is not the only problem we face. To say we have historically done a poor job of educating doctors about carcinoid/NETs would be to damn with faint praise. We diagnose about 3500 cases of cystic fibrosis a year. We diagnose about 11,000 cases of Lou Gehrig’s disease (ALS) every year. Yet you won’t find many doctors who have never heard of either one. We diagnose 12-15,000 cases of carcinoid/NETs a year, but finding a doctor who has heard of it before he or she sees a case is difficult.

…the supply of research dollars flows to whoever has the most political pull…

Part of that is the incredible public awareness campaigns foundations for both CF and ALS have done over the years. Part of it is the impact CF has on children and their families. Part of it is the fame of Yankee Lou Gehrig who was struck down young–and very visibly–by ALS. But part of it is also that these zebras have gotten more than a passing reference in medical school curricula. Medical schools are only now beginning to talk about carcinoid/NETs in any detail. But in-service training programs for doctors on carcinoid/NETs are few and far between.

The inconvenient truth about patient care

As a result, carcinoid/NETs patients are told they are “lucky” to have carcinoid/NETs; that it really isn’t a cancer; that its symptoms are easy to manage; that it is easy to cure; that the surgeon got it all. Spend an hour talking to patients and you will hear more diagnostic and treatment horror stories than you would believe.

But the inconvenient truth is money is not the only problem we face.

Worse, patients have to count on other patients for reliable information about their disease. Even oncologists who are unfamiliar with the disease make the most incredible gaffs in talking about the disease. They don’t understand that, to quote Dr. Eric Liu, one of the experts in the field, “When you’ve seen one case of carcinoid, you’ve seen one case.”

Patients and the inconvenient truths

I love carcinoid/NETs patients. They are wonderful, caring, remarkable people who are forced by the circumstances of their disease to earn the equivalent of a Ph.D in the subject on the fly. They experiment with black raspberry powder to control their diarrhea, cruise the internet looking for research studies from both here and abroad, and share their personal experiences with the disease without hesitation.

‘When you’ve seen one case of carcinoid, you’ve seen one case.’

The specialists in the field–and there are only a double handful of them in the US–listen to what the patients are telling them, treat them as fellow researchers who might actually have a clue what they are talking about, knowing that the search for a cure for this disease at this moment in time is very much a two-way street.

The inconvenient truths about non-specialists

But there are the non-specialists who really believe that because they have seen the major cancers and how they work that they understand all cancers, including this truly bizarre and peculiar nastiness. They tell their patients, sometimes, to shun support groups and anything they see written about carcinoid/NETs–even if it is written by one of those specialists who really understand the disease and are good at explaining it in layman’s terms.

I love carcinoid/NETs patients.

The inconvenient truth is carcinoid/NETs is not like any form of cancer any of us could imagine. The primary tumors don’t spread very fast, but they breed daughter tumors like rabbits. The daughters don’t grow very fast either, but their small size makes them tough to detect. And that growth habit that tempts doctors to see them as no big deal, makes them immune to all the traditional chemo and radio-therapies.

The inconvenient truths about carcinoid/NETs

Add to that their propensity to produce hormones and peptides to screw up the body’s internal chemistry in deadly ways and you have a cancer that is, perhaps, far more life-altering than the better known cancers that look more dangerous and deadly.

…they breed daughter tumors like rabbits.

The inconvenient truth is this cancer–for which we have no cure–maims patients in ways people don’t like to talk about. And when it has maimed a patient as completely as possible, it kills them as surely and as painfully as any other cancer you can name.

How married am I?

I discovered just how much I am still married to Jane today even 41 months after her death. I had thought I was finally emerging into the new reality of life without her. Then I went to a local greenhouse to look for some annuals for the deck. I got back in the car after putting the plants in the trunk and took out my cell phone to tell someone I was coming by to drop off tickets to sell for the Chowder and Clam Cake Dinner we are doing in a couple of weeks.

Today, I discovered it is still there…

It was then I discovered my wedding ring was missing.

Being married’s symbol

For the last several months I have been moving my ring off of my ring finger for several hours each day. I’d told Jane that when she died I would take her wedding ring off her hand–she did not want to be buried with it–and transfer my ring to my right hand, where it would stay until I died. In the event, I found I could not bring myself to take off my ring, though I did take hers off.

…my wedding ring was missing.

When I finally got to the point I was ready to make the swap, I conveniently discovered the finger on my right hand is too big for the ring. I know I could have it resized, but I can’t get myself to have it out of my possession for the day or more it would take to safely do that. Instead, as a move toward that, I wear it on my right pinky-finger for several hours each day, swapping it back to its original home when I do yard work or am in some other place it could slip off without me noticing.

Today, at the greenhouse, I forgot to do that.

No longer married

And then it was gone and I burst into panic and teared up. But I fought it off and checked the plants in the back–maybe it had slipped off into them or into the blankets I keep in the back of the car. But it wasn’t there. I went back into the greenhouse, retraced my steps. Nothing.

…I could not bring myself to take off my ring…

Finally, I found the person in charge of the greenhouse and explained what had happened. She said they would call if they found it–but I had no hope. My high school class ring had vanished one night in college and I’d never seen it again. My marriage really was over now–the one thing Jane had given me that I never wanted to lose was gone.

Reliving loss

I’d been depressed to start the day. Tomorrow is the 41 month anniversary of Jane’s death and–as is so often the case around the tenth of the month–the weight of that day was dragging me down some. Now, walking back to the car, my mind was shattering. I was back at Day One without the numbness to protect me from the searing pain of loss.

My marriage really was over now…

I checked the front seat and, finding nothing, decided I would empty the trunk completely before giving up completely.

Married to false dawns

I had started the morning thinking about what I would write about today. The corms and bulbs I had put in the new garden bed I built early last month have finally begun sending up their shoots in the last few days. It seemed the perfect metaphor for how I was beginning to feel after 41 months of mourning and loss.

…my mind was shattering.

Now it was clear, as I moved toward the back of the car, this was simply another false dawn in this ongoing night without end. There would always be something waiting to destroy whatever progress I thought I had made. Rather than the emerging sprouts of new life, the metaphor was the failed seeds I planted six weeks ago that had not come up and sent me off to the greenhouse to begin with.

Married joy

I opened the trunk and pulled out the single four-pack of zucchini that had been the last thing I put in–and there it was, gleaming like a new-found lost soul. I can’t describe my delight in that moment, nor the joy that etches across my face as I recall it. I only know that I have not felt that same peculiar happiness in a very long time. I went back to the greenhouse, told them they could call off the search–that it had fallen into the trunk as I packed away the plants.

…the metaphor was the failed seeds I planted six weeks ago…

Tomorrow and Sunday, I will work in the garden. I’ll churn the composted cow manure and my own compost into the raised beds. I’ll put in the tomatoes, the lettuce, the sweet and hot peppers, the potatoes, the first of the beans, the onions and carrots. I’ll plant flower seeds and finish making up the baskets for the deck and the yard. I will do all the things that Jane and I would do at this time in May.

Married grief

And at some point, I will make up a pot of her favorite flowers and take it to the cemetery and place it on her grave. I will stand there and shed the tears that come every tenth of the month. I will mourn losing her and try to make sense out of her death.

I will do all the things that Jane and I would do at this time in May.

But I don’t think I will mourn the death of our marriage any more. Today, I discovered it is still there–alive and growing still–despite having reached “’til death do us part.”

The carcinoid/NETs litany

My insurance company won’t pay for my octreotide prescription. Where do I find $64,000 a month for that?

I need to go to Vanderbilt to see a carcinoid specialist treatments. It’s 500 miles away? How do I pay to get there? 

I can’t get PRRT treatments locally–and the specialist says I need them. But my insurance probably won’t pay for the treatments, let alone a place to stay for a month.

It’s hard enough to fight this cancer–why do I have to fight the insurance company, too. I think they hope I’ll just up and die so they won’t have to pay for it.

Help me stay alive: go to my GoFundMe page and make a donation.

Beggary and the cancer ward

Every day I read variations on the above themes. That last one is particularly galling. We live in the richest nation on earth and cancer patients have to sit on virtual street corners with tin cups in their hands begging for help to pay their medical bills. Some put jars in their local stores–a few literally panhandle on the streets like homeless people, hoping against hope that somehow they will fight their way clear.

There is no way to cover everything that is out there…

When they die, too often their families end up filing for bankruptcy, losing everything they had to the carcinoid maw that devours everything in its path.

We all pay the price

It makes me insanely angry every time I see one of those posts. We need to fix the healthcare debacle in this country that turns cancer patients into beggars. But that is not going to happen in the next two years. The political will to do something to make radical changes in the system does not exist.

We live in the richest nation on earth…

So this article is not going to turn into a rant about the shortcomings of Obamacare or the efforts of the Republican Party to turn back even those modest reforms. That won’t help those people struggling to make ends meet while facing carcinoid/NETs or some other form of cancer.

Paying patient support forward

There are groups and organizations out there working to help patients get the treatments they need, get the travel they need, get the lodging they need and the drugs they need in spite of government gridlock and corporate greed.

It makes me insanely angry every time I see one of those posts.

The first stop on your cancer journey is a name most people already know: the American Cancer Society. The ACS is about a lot more than research. In fact, the vast majority of the money ACS raises goes into patient support services, not research. If you need a ride to treatment, for example, there is Road to Recovery. They coordinate a network of volunteers who drive patients to treatments free of charge. In some areas, they actually run buses on specific days to large cancer centers.

No pay to stay

While they don’t arrange travel to cancer centers at a great distance from your home, the ACS can supply a place to stay for an extended period of time through the Hope Lodges once you get there.  These are not flea-bag hotels in dangerous neighborhoods. They are extended stay facilities designed with the needs of cancer patients and their families in mind.

The ACS is about a lot more than research.

There are 30 of these scattered around the country in close proximity to major cancer centers with 20 more in the planning stages. You can stay there for as long as you need to–and they won’t charge you a dime for it. And there is one near most of the major carcinoid/NETS programs across the country.

Help with getting insurance to pay

The ACS offers two different things to help patients deal with insurance and financial issues. The first, and more useful,  of these is the Health Insurance Assistance Program. That group within ACS deals with patients who are having issues with their insurance–or the lack of it.

These are not flea-bag hotels…

The second is a series of posts and articles on insurance and financial issues cancer patients and their families may confront during their battle with cancer. The pieces are very informative and written in easy to understand language. But the entire weight of the process ends up in the hands of the patient or their immediate family if that is the only device you avail yourself of. Patients and families need to focus more on the cancer than they do on the financial issues. Still, the background those pieces provide can be very useful.

Paying for the day-to-day

ACS also functions as a clearing house for information about non-ACS financial aid programs for patients and families struggling with cancer ranging from help with day-to-day living expenses to mortgage help.

…the background those pieces provide can be very useful.

Carcinoid/NETS patients can get some financial help for treatment specifically from the Lois Merrill Foundation. They give small grants to individual patients based on an application process. Those grants are only made once a year. Applications are due no later than June 20 and awards are announced shortly thereafter. The average grant is less than $2000.  That may not seem like much, but every dollar counts.

When it pays to travel…

For carcinoid/NETS patients in particular, treatment often means having to travel great distances–and air travel is expensive. The National Patient Travel Center functions as a clearinghouse for many different kinds of long distance travel for those with medical needs that cannot be addressed locally. They staff a full-time help center that evaluates a patient’s situation and sets up what is available for them. They also can help with ground travel up to 250 miles.

Applications are due no later than June 20…

Southwest Airlines’ announcement in March about free flights to Vanderbilt made a huge splash in the carcinoid/NETS community because Vanderbilt has one of the best carcinoid/NETS centers in the US. What quickly got lost in that announcement was that Southwest has a medical travel program that goes anywhere they fly to the tune of $2.8 million a year. Patients should check with the cancer center they need to get to see whether they are part of the program. If they are not, they have until September 30 to apply for this year’s program.

Other airlines may also have similar programs. Check with them. Most, however, seem aimed primarily at children with medical issues.

The price of drugs

Another potentially major expense for cancer patients generally–and carcinoid/NETS patients in particular–is prescription drugs. Jane and I were stunned to discover a single month supply of a minimal dose of Octreotide was over $58,000 in 2010. Fortunately, we had a platinum insurance policy that left us with a $40 co-pay. We had argued about the expense of that policy every year, but had finally concluded it was worth the price, just in case something awful did happen. And then it did.

Southwest has a medical travel program that goes anywhere they fly…

Not everyone makes that decision–or can afford to make it. Some of the oral medications currently in trials would not have been covered by even our insurance policy. We would have found a way to pay for them: money matters little in a life-or-death situation. But there are other options.

Help to pay for drugs

Nearly every drug company has a program that makes their drugs available at reduced or no cost for people who lack insurance or who cannot afford to pay for a drug they need. The RxAssist Patient Assistance Program has a list of guidelines for some of these programs.

Not everyone makes that decision–or can afford to make it.

Novartis, which manufactures both Octreotide and Sandostatin LAR, two of the standard drugs used to treat carcinoid/NETS, as well as Afinitor, which is used in pNETS, has a patient assistance program for users of its drugs that patients should look into.

A number of foundations also offer help with co-pays.

Trying to reach the bottom line

There is no way to cover everything that is out there to help patients with the financial problems they face in a single short article–and I’m sure I have missed some things people will want or need to know. But this should give you some good places to start as you figure out how to pay the financial price of the battle you face without resorting to begging on the real or virtual streets.

Nearly every drug company has a program…

And if I’ve missed something–either in terms of a financial issue or a place offering real solutions–please let me know. I’ll try to cover those items in a future article.