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.

Starting the 24-in-24 Challenge

Good afternoon and welcome to our Walking with Jane 24-in-24 Challenge to benefit our Relay for Life of Greater Fall River team. I’m Harry Proudfoot, chairman of Walking with Jane and captain of our Relay for Life team. I’ll be here from now until midnight with a whole slew of information that I hope will encourage you to help us reach our goal of $2400 for April 24.

Normally, our focus at Walking with Jane is raising money for research on carcinoid/NETs and helping patients and doctors alike learn about the disease. But we also very much recognize that there are people out there who have other forms of cancer–and that regardless what form of cancer you or someone you care about has, that cancer brings with it all the pain, all the anguish, and all the stress that Jane and I went through when she was diagnosed in August of 2010.

The Challenge of patient support

While cures come from research, patients and their families have a whole host of other issues to deal with. It’s hard to stay positive when your hair falls out and your clothes no longer fit because of all the weight you’ve lost. It’s hard to focus on treatment when you are worrying how you will get to that treatment and where you will stay afterward if you’ve had to travel a long distance to get there–or if your treatment leaves you too weak or sick to travel more than a few miles afterward.

Support for patients and their families is an important part of cancer treatment. The American Cancer Society does a better job of that than nearly anyone–and they do it on a national scale. When most of us think about ACS we think about them as a research organization that funds the search for cures for the biggest killer in America.

Challenge supports more than research

But the truth is more than 60 percent of the money they raise each year goes to programs that support cancer patients and their families. They provide make-up and classes in how to apply it so that women can feel good about themselves even in the midst of sugary, radiation and chemo-therapy. When you hair falls out–a frequent side-effect of many cancer treatments–they supply wigs and scarves and lessons on how to look and feel better.

Those may seem like little things, but they are huge matters to someone fighting cancer and trying to maintain a positive attitude at the same time. I remember a nurse coming in and cleaning up Jane’s hair and face after one of her more difficult carcinoid attacks. We’d faced a grim war for several days–but that small act of kindness gave Jane–and me–a huge lift far beyond what either of us could have imagined.

The Challenge of getting there

But the American Cancer Society does more than help patients look good and feel better. The people I worked for were wonderful during Jane’s illness. If I needed a day to take her to Boston for treatment or an appointment, they were fine with that. Not everyone is so lucky. And were I hit with cancer and needed to get to Boston for regular treatments, I’m not entirely sure how I would get there.

Fortunately, ACS has a program for that: It’s called Road to Recovery. Locally, they run a bus out of New Bedford once a week so cancer patients can get to Boston for treatment. If the bus doesn’t work for you, they have a network of volunteer drivers who will take you there–or to a local clinic–from your doorstep, wait while you go to your appointments, and then return you home–all without charging you a nickel.

The Challenge of staying there

And if you need to stay overnight–or longer–there are the Hope Lodges, where patients and families can stay–again, without charge. And these are not flea-bag hotels. Rather, they are buildings designed and dedicated to cancer patients and their families. Unfortunately, there are only about 30 of them but they are near major cancer centers–and another 20 are in the planning stages.

Jane and I were financially very lucky in our battle with her disease. We had great insurance coverage and an insurance provider that supported us every step of the way.When I needed information about coverages–I handled all the medical and business contacts when Jane was sick because I wanted her to focus entirely on fighting her cancer–my calls were answered pretty quickly–and when they said they would call back about things they did not know the answer to, the always did.

The financial Challenge

But that is not everyone’s experience. Every day I read about patients having problems getting even simple answers to their insurance questions; every day I talk to people who have been denied coverage or who cannot pay for their prescriptions. Navigating all those things is very difficult.

As cooperative as my insurance people were, there were still days they made me crazy. I can’t imagine being a patient AND trying to navigate through that storm. Fortunately, ACS has a link for that as well. The Patient Advocate Foundation, an ACS partner, has a website whose only job is to help patients deal with those kinds of issues. ACS also offers an insurance assistance program

The Challenge for you

I don’t just support ACS because of the work they do in supporting research–though without the funding they provide for that carcinoid/NETs research would be even further behind than it is–I support them for the work they do to support patients and their families get through the most difficult struggle many of them will ever endure.

Parents facing cancer in their children don’t need to be worrying about where they will be staying after a treatment or operation; husbands and wives should not have to think about the fight that is coming with the insurance company over the other’s coverage when they need to be focussed on being with the one they love in that hospital room.

This first hour is about re-introducing you to an organization you think you know: the American Cancer Society. Please take a few minutes, right now, to go back and look at the links above. They will tell you about all these support programs in more detail. I think you’ll come away from that experience with a better understanding of why I think Relay for Life and the American Cancer Society work Relay supports are so important.

The Relay Challenge

Let’s talk a bit about Relay for Life before we go any further. Relay is the single biggest charity fundraiser in the world. The Greater Fall River Relay for Life is just one of thousands of Relays around the world raising money for the ACS’s work–but it is one of the heavy hitters here in New England, raising nearly $300,000 nearly every year for the fight against cancer.

That’s good enough to put our Relay routinely in the top ten in New England in recent years. And the money raised goes to the many different programs the ACS provides. I’ve listed some of those programs above, but here is a short video that does a nice job of summarizing those programs.

The beginning of Relay

Relay was started by Dr. Gordy Klatt as a young doctor. Now, many years later, he is fighting cancer in one of its truly challenging forms. He talks here about how he got the ball rolling.

My own involvement didn’t really begin until after Jane’s death–but we both knew about it before she got sick–and both planned to become involved with it after we retired. The local Relay had an impact on our struggle with carcinoid/NETS almost from the beginning.

First, An update of donations and such

So far today, we’ve raised $200. We received $100 in cash donations this morning. But we also got a note from an anonymous donor offering to match the first $1200 in donations we receive today. That turns that $100 into $200. You can make a similar thing happen when you donate to our Walking with Jane Relay for Life team between now and midnight–or whenever the matching money runs out. Make your donation now.

I am also pleased to announce that tickets have arrived for our Clam Cake and  Chowder Dinner on May 22. While sales from that won’t count toward today’s matching offer, you can order tickets today either by calling me at 508-674-0279 or by emailing me at walkingwithjane@gmail.com

The personal challenge

“He thinks it’s probably cancer,” Jane said to me as she got out of the car. She’d gone to the doctor alone that morning despite my attempts to go with her. Jane could be pretty tough when she wanted things her way. It was an argument I had lost. It would be the last time I would lose that argument.

“But he says we won’t know for sure until after the biopsy–and that until the biopsy, it isn’t cancer.” She told me after he said that he had introduced her to Chris Palmer, one of the women in his office, and left the two of them alone. They talked for a bit–and then Jane had come home.

Chris was chairing the local Relay for Life, a group she had been among the local founders of–and Jane was not the first patient she had talked to following that kind of news. I owe Chris a huge debt of gratitude for what she did that day. And I owe her–and Relay–equally big time for helping me get through some of the days, weeks and months that followed Jane’s death. Much of that was in the future, though, on that ironically sunny July morning.

The personal challenge, part 2

Jane wanted a vacation to take our minds off the impending biopsy and what we were both pretty sure would follow. So we packed up the car and went back to the Lakes Region of NH where we had spent too few days on our Honeymoon nearly 21 years before.

Her legs were badly swollen, though we didn’t know why, and her insomnia was a constant presence. She had little appetite. She sent me out alone early one afternoon to have lunch. She was bloated and didn’t want to even see food. I sat alone at a table in a restaurant for the first time in a quarter century–and hated every second of it. I’ve no memory of what I ate–I simply absorbed it and hurried back to be with her.

I did not eat alone again on that trip. It felt too much like a precursor of life to come–and it was. The rest of the trip, if she didn’t feel like eating, I didn’t either. The last night, she wanted chowder but did not want to face a restaurant. I went down the road to a place that did take-out. I brought it back to the room and we curled up in the window seat and ate looking out over the lake.

The Personal challenge, part 3

The next morning we went for a final New Hampshire walk. It was among the first things we did after we were married. We were both aware of the symmetry. Jane took a couple of pictures of the lake and we recruited someone to take a picture of the two of us together. We were still using film, so there was no way to know how badly we had chosen our photographer.

I had the film developed the week after Jane died. The shot was taken from too far way and by the time I’d blown it up enough to see our faces it took on an impressionistic feel. We are standing with our arms wrapped around each other with brave smiles on our faces. Jane is thinner than I remember her.

It is the last picture I have of her–and one of only a handful with both of us in it. I framed an 8×10 copy and put it on the hall table where I see it every night before I go to bed. I share it with no one. It hurts too much.

The personal challenge, part 4

The biopsy was the morning after we returned home.

That was how we planned it. We didn’t want to have a lot of time to think about it. Of course we thought about it–even talked about it while we were away. But talking about it while sitting next to the lake  had a dreamlike character to it. We were constantly aware that Jane was sick–and seriously–maybe even fatally–so.

But it was like we were on some kind of drug like the one they gave her for the biopsy. I was there when Jane woke up from that. She said she finally understood why people were fascinated by drugs–even became addicted to them: “You could tell me right now that I was going to die,” she said. “It wouldn’t matter to me. I just feel wonderful.”

There were times in the coming months we both could have used those drugs. That weekend, Jane had some swelling in her arm. She wanted to wait until her scheduled appointment to bring it up with her doctor since it was only a wait until Tuesday. But it didn’t feel right to me. I called the doctor Monday morning and he said the results were in and we could get both things done at the same time later that day.

Challenge Update

So far, we have an audience of about 80 people–most of it on Facebook. Please remember we have a dollar-for-dollar match going between now and midnight up to $1200–so your $10 donation becomes $20 for today only. Please share these posts with others. Hoping to see some serious upticks in the next hour. Donate now.

The personal challenge, part 5

It was a good thing we had not waited. Jane had thrown a clot in one of the blood vessels in her shoulder. If it dislodged, she might have a stroke–or worse. She would spend the night in the hospital for the first time since she was born. I came home alone that night and slept alone in our bed for the first time ever.

But I wish we’d been able to wait even another 24 hours. Hearing a cancer diagnosis–even for a minor skin cancer–is like nothing else I can describe. Hearing your wife’s doctor say she has a form of cancer he has never heard of is 1000 times worse at a minimum.

Learning a week later that your local, Dana-Farber Cancer Institute-trained, oncologist has never seen a case of it before and honestly doesn’t know much about it beyond the name is the kind of thing you only see in medical thriller films. And now you have to live in that world of specialists and experimental treatments and the increasing probability of death–not your own death, but the death of the person you love most in all the world.

The personal challenge, part 6

Jane and I were very fortunate when it came to doctors. Her doctor sent us to an oncologist who knew little about the disease–but who did know who the real experts in treating the disease were. And she had no qualms about getting us to them–and getting us there quickly.

We were also lucky that two of the best people in the field were right in our back yard. The Dana-Farber Cancer Institute is barely 60 miles from our door–less than two hours away even in rush hour traffic.

That Jane and Dr. Jennifer Chan took an immediate joy in each other’s company was simply the best situation possible. And Jen quickly assembled a great team of doctors who quickly diagnosed the heart issues the cancer was causing. The head of cardiac surgery at Brigham & Women’s hospital, a man others called the most creative heart surgeon they had ever seen in the operating room, agreed to be her surgeon. One of the handful of oncocardiologists (doctors who study the impact of cancer on the heart) in the world became her cardiologist.

We knew we were up against long odds. But we also knew that we had a team that was capable of shortening those odds. If beating carcinoid was possible at all, we were in a position to do so.

The Challenge of finding a doctor

Most people have a far tougher time finding a doctor when they’ve been diagnosed even with one of the more common cancers.  Most cancers are life-threatening–and also mean you will likely spend a lot of time in the presence of that particular doctor. You are likely to have a far different relationship with them than you do with any other medical professional.

And increasingly, cancer treatment takes a team approach. You not only have to like your oncologist, you have to trust their ability to put together the right team for your particular cancer. Most of us lack the knowledge and expertise to find a good doctor. Most of us pick our primary care doctor seemingly at random–and hope for the best.

The American Cancer Society, whose work we are trying to support here today, has a great guide for how to go about choosing your oncologist–and your hospital. It’s just one more of the many support services they have for cancer patients–and like everything else they do, they put it out there for free for any patient or family member who needs it.

Challenge Update

The thermometer has started to rise a bit: we’re up $120 including the matching money in the last hour, bringing our total for the day to $320. Still a bit of a climb to $2400 ahead of us. And our audience has climbed over 100 for the first time today. Donate now. 

The Palliative Challenge

When most people think palliative care they think about end of life care. While palliative care is a part of that scenario–making the dying patient as comfortable as possible in their final hours has a lot to be said for it–it is also a significant part of the healing scenario as well. If you break your leg, for example, the surgeon can set the bone and put it in a cast and you will heal. But you will heal more quickly if you have some painkillers prescribed that will keep you from thrashing around in agony. They will also help you get some sleep–which will also help you heal.

Jane was in palliative care from the moment she got her first octreotide shot on our first day at Dana-Farber. In some cases, that drug will actually slow or stop–at least for a time–the growth of carcinoid tumors. But it also can–and in Jane’s case did–alleviate the two worst symptoms of the disease: constant diarrhea and gas that is so bloating it limits how much you can eat.

I can’t describe how happy I was when she turned to me on the drive home and said she was hungry–and could we stop to get something to eat. At first, I thought she just wanted to make sure I ate something. But she attacked her hamburger in way I had never seen before–even when she was healthy. It was clear that little shot had made a difference. And that night–and the next morning–she was diarrhea free for the first time in months. That meant she actually was able to absorb nourishment from her food for the first time in a long time.

The challenge in the sixth hour

OK, folks. I’ve been writing since 9 a.m. and posting since noon. I’ve given you lots to read and to think about. I could use a little help here, so comments–good, bad or indifferent would be a really welcome thing at this point–not that I’m anywhere close to out of material yet. I’ve got things coming on chordoma, triple negative breast cancer and Merkel Cell Skin Cancer, as well as some more about ACS and the ways they provide not just research money but patient support.

Also, if you have your own ACS cancer stories to relate, feel free to post them both here and on our Walking with Jane Facebook page.

The personal challenge, part 8

We were at Dana-Farber Cancer Institute in Boston virtually every Thursday from September through November 11, the date of Jane’s last appointment before she went into the hospital for surgery. We would get up each morning and I would go off to work. I had said I wanted to stay home with her–take a leave of absence, but she would not hear of it.

“What would we do if you did that,” she asked? “Sit here and stare at each other?” The tone in her voice ended that argument before it could begin. The truth was, my staying home would have defined her in her own mind as an invalid. She had enough trouble with me gradually taking on all the household chores we had once shared as her body increasingly failed her. She told me she felt guilty about that. I told her she would do the same if it were me.

So I went to work, came home, did what needed to be done in the house, sat with her on the couch until she could sleep for a little. The insomnia got worse with each passing week–and the range of her movement became smaller and smaller. Increasingly, I did the shopping alone because her diarrhea meant even the short trip to the grocery store was fraught with peril. Then she gave up going down the stairs to the basement. Her crafting died. Her world shrank with every day.

Those of you who knew Jane remember the active person she was–and understand the psychic toll those new and ever increasing limits took on her. She did all she could to rein in her temper, as did I. No one can be in that close proximity to human suffering day after day and not suffer some enormous hurt.

One afternoon I was outside doing yard work. We’d had a sinkhole repaired some years back and that day my foot found a new one. All the anger came pouring out of me then. That anger had not subsided by the time I got back inside and I ranted about it for a few seconds.

Jane’s response was to let her own anger leak out a bit: “Why does this seem to upset you more than my health?”

That took me back a bit. And then I knew why. “I can’t let how I feel about that out. It makes me so angry…” I paused. I could feel it bubbling, begging for me to lose control. “I need to be able to think, to stay rational, so we make good decisions about this cancer. I can’t be emotional about that without hurting you. So I get mad at things that are safe to get angry at, like that damned sinkhole.”

We all pay a price when the people we love are sick. We pay a price when the one we love dies. Both hurt so badly that if we fail to contain the flames it will burn everything about both of us to death.

And now this challenge

Finding cancer answers begins with research, but curing patients begins with support. Help us provide both. Donate now.

The personal challenge, Part 9

There are times I wish I had known about the Hope Lodge program during the 28 days jane was in the hospital–but most of the time I am glad I didn’t. I spent the first four days with a hotel room I barely used. In fact, Wednesday night, when Jane was in what we would later realize was her first carcinoid crisis, I never left the hospital. I was awake for over 38 hours and would have gone more if it had been necessary.

After those four days, I moved into her hospital room. We both needed me to be as close to her as I could get. She was scared, she told me, and it was a comfort for me to be close by. It was a comfort for me as well. I’ve written about that ordeal before and don’t want to go into it in great detail here again tonight. Frankly, I’ve cried my way through so much of what I’ve written today that I’m not sure how much good I will be for anything tomorrow. Reliving her last hours is more than I can handle just at the moment.

But there was so much courage in every second of those days. The doctors saw it. The therapists saw it. The nurses saw it. Even the cleaning staff saw it. After she died so many of them talked to me about what they had learned from her–and from us. They told me how what they had witnessed in that tiny room had changed their lives. And I knew those were only a small portion of the lives she had changed in the years before her world had shrunk down to the size of a hospital bed.

The personal challenge, Part 10

Jane’s death, for all the hideousness that accompanied it, had a kind of stark beauty to it that came out of the courage she showed in facing it. She faced it patiently and calmly and forgivingly. Her body betrayed her–and I failed her in those last days more than once. But I did the best I could with the knowledge I had at the time–and her doctors made sure I had the best knowledge they had every step of the way. They let me sit in on rounds, listened patiently to my questions and thoughts and answered with the best knowledge we had at the time.

Jane spent her life in the pursuit and sharing of knowledge. The problem with her cancer was–as it is now–that we did not know enough to make the difference in her life we all wanted to make.

Two-thirds of all the people who are diagnosed with cancer survive the experience today. Not so long ago, it was ten percent. But for cancers like Jane’s carcinoid/NETs, for people like my friend Katherine, who died this winter of Triple Negative Breast Cancer, for those diagnosed with Merkel Cell skin cancer, and for too many others, there is no cure–nor anything that even looks like a cure.

One third of those diagnosed with cancer will die from it. Some will die because it was diagnosed too late for the cures we have to work. But most will die because their particular cancer has no cure.

The personal challenge, Part 11

In a few minutes–as I write this–it will be exactly three years, four months and 14 days from the moment Jane stopped breathing for the final time. From that moment to this my entire life has been bent to finding a cure for what killed her. I live frugally. At the end of the month, what I have finds its way, for the most part, into cancer research or patient support.

This is not the life Jane and I had planned for our retirement. It is not the life she told me she wanted for me if she did not survive the battle we had in front of us.

But I loved her too much and her death–even at this distance–still hurts too much. I would have no one die her death. I would have no one live this life.

That’s why I will sit here typing my fingers raw until midnight. It is why I cannot fully enjoy the daffodils that are blooming in my yard and why the same thrill Jane and I once shared at the first sign of a crocus is no longer there for me. When a dragon loses its mate its heart takes a wound so deep that only growing a new heart will heal it.

And to grow a new heart takes, it turns out, a very long time.

Challenge Update

We have moved closer to our goal in the last hour and, including matching money now have raised $520 toward our $2400 goal. We have just under four hours left to earn the rest of that $1200 in matching money that is on the table–and we won’t get it without your help. Please donate whatever you can afford tonight.

The personal challenge, Part 12

The American Cancer Society could do nothing to save Jane’s life. By the time Jane was diagnosed that ship had not only sailed, it had reached port, unloaded, reloaded and reached another port entirely. Without ACS funding, small as it was compared to what gets spent on the more well-known and more frequent cancers, we would have known even less than we did about Jane’s carcinoid cancer in August of 2010.

I remember going online to study up on the disease shortly after Jane’s diagnosis. The number of entries on Google did not even fill a complete page. The US government had only funded a single conference on it–and no research–since 1968.

But the Relay for Life of Greater Fall River certainly saved what was left of my life in the months after Jane’s death. I had yet to hear of the foundations working on carcinoid/NETs and while I knew I wanted to do the Jimmy Fund Marathon Walk, I had no idea that if we raised enough money we could determine where that money went specifically. I only knew I wanted cancer–all cancers, really–dead.

The people at Relay took me in. They gave me a place to put my anger and my energy. They held my hand when it most needed holding. They could never replace Jane–no one and no thing can ever hope to do that–but they understood what it was I had seen. Many of them had been cancer patients. Others had been spouses or parents of cancer patients. Soldiers say only someone who has been to war really understands it. The same is true of those who have dealt with cancer.

Unfortunately, the number of people who have dealt with cancer is large–and growing. One in three women will face a cancer diagnosis. Half of all men will face that same reality. That diagnosis will have an impact on their spouses, children and parents–and sometimes that impact will be shattering.

The best oncologists say that when one member of a family has cancer, they all have cancer. That is the size of the impact crater even a survived cancer leaves in its wake.

9 p.m. Challenge Update

As of 9 p.m., we have raised $740, including matching, toward our $2400 goal for today. we need $830 to claim what is left of the $1200 in matching money–that would get us to that $2400 goal for the day. And we have just under 3 hours to do that in. Please donate whatever you can.

 The challenge of cancer

Jane’s death was not the first death from cancer in my life, nor–unfortunately–the last–but it was the most difficult to deal with. By the time I was 16 a close friend had already lost her father to it and a classmate I hardly knew had died from it. Things did not get better thereafter. On average, I have lost someone to cancer about every two years since I knew what cancer was.

The pace of loss has accelerated since Jane’s death–even if I eliminate the cancer patients I have encountered in my work since. Eight people I knew well enough to count as friends have died of cancer since Jane’s death. Double that number have been diagnosed and undergone treatment.

Part of that is the number of people I know. Jane and I were both teachers and knew thousands of young people and their parents. Part of it is that I am of an age where cancer becomes increasingly frequent. Part of it is the huge number of carcinogens we are all exposed to every day–and have been exposed to for years.

We can do something about cancer deaths. We can support cancer patients better. We can try to raise more money and recruit more good minds for cancer research. We can live a more healthy lifestyle and rein in our exposure to the things that cause cancer.

But, like everything else, we have to make the commitments necessary to bring about those results. And that commitment begins with each of us as individuals.

 Final words and thoughts

Today has been pretty wrenching on multiple levels for me. I started writ in at 9 a.m. this morning after spending much of the last few days buried in the research that has to go into this kind of project. That research also brings me back into close contact with my least favorite experiences and ignites all kinds of memories of Jane’s last days and what I wish we had known.

There are two hours left between now and midnight, but honestly, I’ve said all I have to say. Oh, there are couple things I could raise about Merkel Cell skin cancer and chordoma, a very rare cancer that affects about 300 people a year–a good friend among them–but if the other nearly 6000 words have not convinced you to open your wallet, another thousand or so won’t do it either.

And for far too many of you there is a good reason not to open your wallet. I came into today believing that the economy was getting better. Clearly, from the number of personal notes I have received today, it is not better than it was a year ago–and for many of you it is worse.

So let me make this clear: your families and their immediate needs always have to come first. If you have bills hanging over your head that you don’t know how you are going to pay, quash that charitable impulse right now. You and your family need that money for the necessities of life. Let others in better circumstances carry the charitable weight for right now. Your day will come, but until then, please put your family’s needs way ahead of this on your priority list.

I’ll monitor things on the various sites between now and midnight and write responses to those of you whose comments say they need some kind of response. I’ll post updates about additional contributions that come through the door.

Thanks to all of you who have dropped in or hung around for a portion of the day. I hope you learned something useful about life, the universe and everything along the way. That’s the more important part of these things for me in many respects: giving people the information they need to make better decisions and live better lives.

Be well, all of you.

Harry Proudfoot

11 p.m. Challenge Update

As of 11 p.m. EDT we have raised $790 so far today for our Relay for Life team. this includes matching money. $1000 is just $210 away–and with matching money still on the table, we just need another $105 to get there in the next hour. Donate now.