NET cancer is considered a rare disease. As a result, I post some things on our Facebook page–and elsewhere–about other rare diseases and about Rare Disease Day, which this year is February 28. Part of the effort to raise awareness of rare diseases is a campaign to get people to wear zebra print articles of clothing on that day, much as the American Heart Association tries to get people to wear red on February 2 to raise awareness about heart disease in women.
…sometimes a zebra is far more deadly than a lion.
That sounded like a reasonable idea to me, so I began posting about it a couple of weeks ago. Then I got a note from a friend last night asking how getting people to wear zebra print items was going to help people with rare diseases. It was a good question. The note got me to realize that while there were lots of pieces of PR making the rounds about wearing zebra none of us were really doing a very good job of explaining to people why we wanted them to do that.
Why a zebra?
Doctors refer to “rare diseases” as zebras. It comes out of their training in medical school and as interns: “When you hear hoofbeats, think horses, not zebras.” The mantra is there to remind doctors the most likely cause of a particular symptom is a common illness rather than a rare one: a cough is more likely a chest cold than it is lung cancer, more likely a standard lung cancer than mesothelioma–the type caused by exposure to asbestos–or cystic fibrosis.
…early discovery is important for all rare disease patients.
But just because a disease is rare–in the US that means there are fewer than 200,000 people directly affected by the disease–does not mean no one has ever heard of the disease. Cystic fibrosis and ALS–the disease often referred to as Lou Gehrig’s Disease–are rare diseases by that definition. Yet it would be hard to find an American–let alone a doctor–who is not aware of each of those. A month does not go by that I don’t get a solicitation looking for money to support research into both.
It’s not the size of the zebra
Unfortunately, for every “rare disease” people have a significant awareness of, there are hundreds, perhaps thousands most people–and most doctors–have never heard of. And it has little to do with relative prevalence. Cystic fibrosis, which has a large and effective foundation raising funds for it, for example, was responsible for about 3,700 deaths from 1999-2006. Over seven years it killed about one-third as many people as NET cancer kills in a single year. Cystic fibrosis affects about 30,000 people in the US–and 70,000 worldwide. ALS affects about 30,000 people at any given time in the US–about a quarter as many people as have been diagnosed with NET cancer.
Doctors refer to “rare diseases” as zebras.
Both cystic fibrosis and ALS are terrible diseases. I have seen both up close and would do nothing to cut the funding for either disease. But I have a long list of other rare diseases I have seen up close that affect more people but do not get the attention or the funding they need from either the general public or the federal government.
Rare diseases and doctors
More importantly, awareness among doctors of most other rare diseases is also very low. They may see the disease but not recognize it as easily as they might cystic fibrosis. And like cystic fibrosis, early discovery is important for all rare disease patients. The sooner the disease is spotted, the sooner whatever treatments we have for the disease can start–and that can make a significant difference for the quality of life those patients’ experience.
NET cancer is considered a rare disease.
We need everyone to be much more aware of the many lesser-known “rare diseases” that are out there. Greater public awareness will lead to more funds so that we can do more research. Greater physician awareness will lead to earlier diagnosis, earlier treatment, and a better quality of life for both patients and their families.
Join the zebra herd
So please, find some kind of zebra patterned item you can wear on February 28. Encourage the people you know to do likewise. Educate yourself about a rare disease or two that you have not heard of. Help us raise awareness not only about the NET cancer zebra–but about all the zebras that are out there–because sometimes a zebra is far more deadly than a lion.
I’ve just come back from the funeral of a 30 year-old woman who should have lived another 50 years. She’d earned a masters degree in English and was taking the courses she needed to apply to medical school following a first bout of cancer a few years ago. We had talked last fall at the funeral of her photography teacher who was also a colleague of mine. He died of brain cancer, though he had fought off at least two other cancers previously.
…the greatest failure comes when one fails to try.
My student had just come out of the hospital a couple of weeks before but she looked good and we made plans to meet for coffee a few weeks later. Unfortunately, she got hung up on an errand and we missed each other. She had planned to attend the Relay for Life Kick-off Dinner in late January, but didn’t make it. The weather was tough that night—and maybe she knew then that there was something going wrong.
The winter of my discontent
She died unexpectedly last Friday. I got an email from another former student Saturday morning.
It is about saving them all.
I’d already begun to slide into grief earlier in the week. Winter is not an easy time for me since Jane’s death. The house is too quiet. The neighborhood is too empty. The cold makes walking difficult. And the absence of sunlight seemingly too easily leads to Vitamin D deficiencies that can’t always be made up by supplements.
The reality of grief
Grief is not like what they describe in the scientific journals. There is no magic wand that relieves it after the first year, nor apparently after the second. Gradually one becomes better at coping with the emptiness, the guilt, and the anger—but they do not seem to vanish.
He wants to save them all.
I know our friend did not die of NET cancer. She died of another of the seemingly endless varieties of the disease. That her cancer is better funded than NET cancer made no difference. In the end, it killed her just as dead as Jane’s NET cancer killed her.
Every cancer has deadly potential
The truth is that even the cancers we know the most about are still deadly too often. I have another student whose daughter is fighting one of the childhood forms of leukemia. Thirty years ago she would probably be dead. Today, 90 percent of children diagnosed with her form of leukemia are cured to the point hey can look forward to a normal lifespan.
I have always hated that story.
But for 10 percent of those little boys and girls nothing we have works.
Cancer and cost-benefit analysis
In the world of cost-benefit analysis the bean counters would consider a 90 percent cure rate, “good enough.” But it is not good enough for the doctors, the nurses, the technicians, or the researchers. It is especially not good enough for the children and their families who are in that 10 percent.
The beach is covered in starfish…
Some years ago there was a story making the rounds of teacher conferences about a little boy on a beach. The beach is covered in starfish and the little boy is picking them up and throwing them, one at a time, back into the ocean.
The starfish story
A man comes by and derides the boy for his efforts. “You’re wasting your time,” he says. “You can’t save them all.”
…for 10 percent of those little boys and girls nothing we have works.
The boy picks up another starfish and throws it into the sea: “But I saved that one,” he shouts at the man.
I have always hated that story.
Saving every cancer patient
I have always hated that story because the boy’s reply is born out of frustration. The truth is he isn’t satisfied with saving a single starfish, or half the starfish, or 90 percent of the starfish. He wants to save them all.
Grief is not like what they describe in the scientific journals.
But he has to shut the bean counter up or he’ll begin to believe the bean counter. And then the starfish will die. And the lives of the starfish all matter to the boy.
Teaching and cancer research
Teaching is not about being satisfied with saving one child from ignorance. It is about educating them all. Medical research is not about saving one person from disease. It is about saving them all.
Winter is not an easy time for me…
Neither teachers nor researchers can afford to be bean counters. They cannot be concerned with cost-benefit analysis. They, like John Donne, are concerned with mankind—and know that every death, whether mental or physical—diminishes them.
The reality of failure
Both know they will fail sometimes, but both know they cannot consider the possibility of failure if they are to do their best work. No matter how much it hurts to fail—nor how great the odds of failure are—the greatest failure comes when one fails to try.
…maybe she knew then that there was something going wrong.
In the starfish story the man leaves the boy to his starfish. He has learned nothing. Perhaps I would have liked the story better if the man, inspired by the boy’s words, began helping to throw the starfish back into the sea.
The battle against cancer ends when we have cures for every cancer for every patient. Help us save some starfish.
There are few things I enjoy less than asking people for money. Unfortunately, for the last seven days that is exactly the activity I have been engaged in. Were it not for Jane’s death from NET cancer twenty-five months and 22 days ago I would likely have spent that time reading, walking, and working on one of the books Jane and I had planned to write after we retired.
I hate what NET cancer did to her.
And if NET cancer research were well-funded and supported by large foundations on the scale of breast cancer, I might be contemplating a run for the state House of Representatives or the US senate seat vacated today by John Kerry–or at least be nearing the end of putting together the journalism book I have always wanted to write. No doubt I would still be working on the Greater Fall River Relay For Life, but I would not feel the need–or the pressure–to focus additional energy on raising money and awareness for this little-known form of cancer.
NET cancer and my despair
Nor would I feel an obligation to immerse myself in the kind of research that brings me into daily contact with just how slender our resources are and how that affects the progress toward a cure. That knowledge is especially painful because every day brings me into contact, as well, with those who currently have NET cancer. To look into their eyes, to read their words, and to know what I know is a recipe for a special kind of madness that is equal parts hope and despair.
...dying and taking it with them.
I know that if nothing changes each of those patients faces the same death I watched Jane struggle through. I know each of them will kill their NET cancer the same way Jane did: by dying and taking it with them.
NET cancer tears
Jane wept when I told her the night before she died that there was nothing left they could do. She could not talk–she did not have the strength–and I have wondered since if I did the right thing in telling her. I do not know if those tears came from pain at what I had told her or joy that she was finally going to be done with all the embarrassments. She was a proud woman–and the diarrhea she could not control had stripped her of every ounce of dignity.
There are few things I enjoy less…
I hate what NET cancer did to her. I hate what it will do to all the other patients I have met. I hate what it did to me. And I hate what it does to the families and their lives.
My hatred
I hate begging for money. But I have spent the week doing exactly that because I hate NET cancer even more.
One week ago I was seriously thinking about closing down this Walking with Jane website–and our Facebook page as well. Maintaining either one requires a significant time commitment–and given the tiny number of people reached by either site I was beginning to think there had to be a better way to get the word out about NET cancer.
…we can always use the help.
But last week, for a variety of reasons, this website took off. In one week we logged more visits than we have had in whole months since April. And I will try some new ideas to reignite the Facebook page as well. The truth is, we are starting to heat things up on a number of fronts–all of them important.
NET cancer comic relief planned
We are in the process of putting together three Walking with Jane fundraisers for this spring. The first is a comedy night in New Bedford to benefit this year’s Walking with Jane Marathon Walk campaign. We are still working on getting some things approved, but you should set aside April 6 to attend what we hope will become an annual event. Tickets will be $15, but we are not ready to sell those yet.
We are trying to double the amount we raise for NET cancer research…
May 2 we will have our second annual Pasta Dinner. Again, we are in the process of getting some things approved for this, but tickets will be what they were last year. This event will benefit our Relay for Life of Greater Fall River Walking with Jane team.
We also hope to run our yard sale in early June. There, too, we have paperwork to get done before we can release details.
Relay recruiting drive underway
Relay kick-off was last night but we have already held our first Walking with Jane fundraiser–the annual trek to the Atkinson neighborhood’s mammoth yard sale back in September. We took in more than $450 that weekend thanks to Scott and Wendy–and especially their daughter, who helps run our tables there.
…my personal goal for the Marathon Walk will be $20,000.
But with Relay season about to get started in earnest, we need to start recruiting team members for that event. This year’s Greater Fall River Relay For Life is June 21-22 at Bishop Connolly High School in Fall River. The event goal from ACS is $285,000. Walking with Jane hopes to raise $20,000 this year for the event–and we will need all the help we can get to reach that ambitious goal.
We are also about two weeks from the official launch of this year’s Jimmy Fund Marathon Walk team. It is not clear whether we will join forces with Caring for Carcinoid again this year. I sent them a note about this a couple of weeks ago but have not heard from them yet.
Regardless, my personal goal for the Marathon Walk will be $20,000. The team goal is 40 members and $40,000. I’d like to do even better than that. Again this year, all the money we raise for this event will go specifically for NET cancer research at the Dana-Farber Cancer Institute. Please join us when the Marathon site goes live in early February.
Doubling down on effort
You may have noticed there is a lot of doubling going on in our goals for these events. We are trying to double the amount we raise for NET cancer research every year for the next five years. Last year, we generated just over $100,000 for cancer research. That means this year we are pledged to generate $200,000.
…you should set aside April 6…
At least in part inspired by our madness, some other NET cancer foundations are trying to do the same so that we can double the resources available for NET cancer research. That would finally put us on the same level as other cancers with similar numbers of patients.
I promise we will only bother you twice a year with mailings–and that we will not share your address with any other group. It’s an easy way to support cancer research without getting bombarded with requests for money from every organization in the world. And every dollar we raise goes directly to the organization you direct it to. We have no overhead you need to support.
If you want to volunteer your time for any of these projects, we can always use the help. You can contact us at walkingwithjane@gmail.com.
I’ve been writing about NET cancer for nearly 25 months. But yesterday someone asked in a search that brought them here, “How does neuroendocrine cancer kill you?” And that question brought me up short because while I have written about Jane’s death, I have not written about the biology involved in death from NET cancer.
NET cancer can kill in a variety of ways…
While I can already tell this is going to be a difficult piece to write–my hands are already shaking–I am going to try to answer the question as clearly as I can. But the subject is a complex one because NET cancer is a complex disease.
NET cancer more complex than others
That complexity starts with an understanding of how it is different from other cancers that involve tumors. A normal cancerous tumor, for the most part, takes up space and consumes resources the body would normally use elsewhere. Because a NET cancer tumor sometimes secretes hormones, it gets involved with the body’s chemistry in ways other tumors generally do not.
Some pancreatic NET cancer patients have to set their alarm…
In my wife’s case, her tumors were secreting the hormone serotonin. Serotonin is involved with a whole host of things, including depression when you have too little of it. But while lots of research has been done on finding ways to increase serotonin levels for depressed patients, too much of it can be deadly as well.
Impact of too much serotonin
And that was the problem Jane faced. Her tumors were all producing additional quantities of serotonin above and beyond what her body was normally producing–or had any need for. Serotonin helps regulate things like appetite, sleep, temperature regulation, cardiovascular function, muscle contraction and the levels of other endocrines. In essence, the excess serotonin Jane was dealing with messed up her body chemistry in very serious ways. And the larger and more numerous those tumors became the more serious her physical problems became.
NET cancers can form anywhere in the body.
These issues initially included low blood pressure, persistent insomnia, headaches, loss of appetite, and frequent diarrhea. While we generally think of low blood pressure as a good thing, low blood pressure can be just as fatal as high blood pressure.
NET cancer and the heart
By the time Jane’s NET cancer was diagnosed the tumors in her liver had been shooting raw serotonin up through the valves in the right side of her heart for some time. Normally, serotonin in the blood stream is metabolized in the liver, but when it is produced there that action does not happen. And serotonin is what is called a “hot” chemical. That means it is very damaging to any tissue it comes in contact with.
…the heart surgery would buy us the time to do the liver treatments…
What sent us to her primary care doctor that spring was a built up of fluid in her legs that interfered with her ability to walk or climb stairs. That excess fluid turned out to be the blood the valves in her heart were now too weak to propel to the lungs and that was now falling back into the blood vessels from the legs. Eventually, the volume of regurgitated blood would begin to fill her abdomen as well.
Serotonin and digestion
Without the heart surgery that replaced those valves Jane would have died of heart failure caused by the excess serotonin her NET cancer tumors were creating. But that was not what killed her–nor was it the only thing the NET cancer was causing that had potentially fatal consequences.
…the carcinoid attack put her in a coma for 30 hours.
Serotonin also regulates digestion. With too little serotonin, we get constipation. With too much of the hormone, we get diarrhea. And with way too much serotonin that diarrhea becomes increasingly uncontrollable. Uncontrolled diarrhea, in turn, leads to dehydration unless we find other avenues to get fluids into the body. And if that diarrhea get so bad that intravenous fluids can’t make up the deficit, then dehydration leads inevitably to death. Jane’s diarrhea was at close to that level when she died, but it was not the dehydration that killed her–though it easily could have been.
NET cancer and appetite
But serotonin also regulates whether we are hungry or not. That, in combination with the regurgitated blood that was filling her abdomen, made it increasingly difficult for Jane to eat even small amounts of food. She finished every day with a significant caloric imbalance: she was literally starving to death. And food contains more than calories. She was being shorted on vitamins and minerals as well. Even taking supplements did little good because the speed at which she digested her food was so great that her intestines did not have time to absorb the nourishment that was passing through.
Jane’s liver was in a pretty damaged state…
One of the critical things she was missing as a result was albumin. It is the stuff that helps keep the fluids inside the individual cells and keeps the cell walls from breaking down. Any pin prick caused Jane to leak cell fluid onto her clothes and bedding. The same process was likely going on in her internal organs. The failure of any major organ is generally fatal.
NET cancer and the liver
And Jane’s liver was in a pretty damaged state by the time she was diagnosed. She had three tumors in her liver–the largest being nearly three centimeters in length. Those tumors had already caused so much damage that she was rejected for a Phase III trial of a drug that has since been approved for use on NET cancers. If her heart problem had not been so critical, we would likely have tried liver ablation therapy to kill those tumors first. Either that or a liver transplant–or perhaps both–were things we were discussing as next treatment steps shortly before her death.
…she was literally starving to death.
But what ultimately killed Jane was a carcinoid attack triggered, we now think, by her attempts to do the physical therapy required to recover from the heart surgery. A carcinoid attack often happens to NET cancer patients following during or following any type of surgery. Suddenly the body is flooded with whatever hormone or peptide the tumors produce. In the case of serotonin, respiration and blood pressure collapse, reducing the patient’s blood oxygen level to unsustainable levels, and the patient lapses into a coma. Without intervention, the patient dies.
Carcinoid attacks
For this reason, NET cancer patients undergoing surgery receive massive doses of octreotide before and after surgery. Octreotide blocks the receptors on the tumors and, essentially, blocks the release of excess serotonin. But Jane’s tumors were bigger and more advanced than a normal NET cancer patient. She suffered her first carcinoid attack shortly after she first started doing physical therapy following the heart surgery. She was doing so well with that we were only waiting for a bed in the step-down unit to move her out of intensive care. But the night nurse discovered her pulse oxygen levels had dropped into the mid-to-high 80s.
Serotonin also regulates digestion.
Jane recovered from that and began physical therapy again. This time the carcinoid attack put her in a coma for 30 hours. Octreotide brought her back, but she was now much weaker than she had been. And the third attack left her weaker still. It was not until after the fourth attack that we made the connection between her physical therapy and the attacks–and by then it was too late. Jane died the next day. We think the tumors in her liver and elsewhere were ramping up because of the body’s call for hormones to rebuild muscle in physical therapy. Whether that is true or not cannot be determined for certain because there is only the one case to work from.
Jane’s NET cancer death
In any event, the proximate cause of Jane’s death was the depressed respiration and blood pressure caused by the carcinoid attack. But the heart valve issue, the dehydration, the starvation and the chemical imbalances that creates, or the liver damage the tumors created could have killed her just as easily had her doctors not intervened.
…serotonin is what is called a “hot” chemical.
We all believed–including Jane–that my wife could win her battle with NET cancer–that the heart surgery would buy us the time to do the liver treatments and that would buy us enough time to remove the primary tumors in her intestines and that would buy us enough time to find a cure.
NET cancer knowledge
It didn’t happen that way. We knew too little and what we did not know proved to be too much. And while we have made great strides in our knowledge over the 25 months since Jane’s death, there is still a great deal more we need to learn to prevent even the deaths caused by serotonin producing NET cancers.
…low blood pressure can be just as fatal as high blood pressure.
That is equally true of the myriad other forms of NET cancer. NET cancers can form anywhere in the body. They can, at least theoretically, produce any of hormones or peptides the body produces. They form in the brain, in the bone, in the pancreas, in the lung–anywhere. And if they are producing a hormone or a peptide they will get involved in body chemistry in many different ways with many different effects–most of them not good.
Pancreatic NET cancers
For example, everyone knows what happens when the pancreas does not create enough insulin: diabetes causes high blood sugar because there is not enough insulin to move the sugars the blood transports into the cells of muscle and other tissue. It can result in heart problems and blindness and circulation issues. But if a NET cancer causes an overproduction of insulin, that can have equally bad consequences–starting with the effects of very low blood sugar. And insulin is not the only thing a pancreatic NET cancer can create. Some pancreatic NET cancer patients have to set their alarm to wake them up a couple of times a night to get something to eat to avoid lapsing into a coma while they sleep.
…a NET cancer tumor sometimes secretes hormones…
Apple founder Steve Jobs suffered from pancreatic NET cancer. We do not know what his tumor was over-producing, but his liver was damaged enough by the metastases that he underwent a liver transplant at one point. Without that transplant, liver failure would have killed him. But half a dozen other things could have as well–just as was the case with Jane.
We need more NET cancer research
In short, NET cancer can kill in a variety of ways, depending on the hormone or peptide produced and the effects of a gradually building overdose of that hormone or peptide on the other parts of the body. And if that NET cancer has metastasized to the liver, those impacts can be even greater and, sometimes, stranger–at least from a layperson’s point of view.
…my hands are already shaking…
What we continue to need is far more research than we can do with the small sums of money available. If you can do anything to help we need you to contribute.
Figuring out the scale of the NET cancer problem in the US is like trying to nail jello to a wall. It is a task I wish I could stop thinking about–that I wish I could convince myself does not matter. But given how many funding decisions get made on the basis of how widespread a disease is–or how widespread it is perceived to be–it is very much a thing that matters.
…it is our ignorance that is the problem.
I’ve written about this problem two or three times before. I’ve talked about NET cancer’s apparent relationship to right-side heart valve disease and irritable bowel syndrome. And I have talked about other studies that seem to indicate it is much more widespread than many believe.
Crohn’s patients more likely to have NET cancer
I’ve also written about the number of cases and deaths NET cancer causes each year in comparison to different, better-known forms of cancer. The funding discrepancies there are equally hard to fathom.
…it would appear NET cancer is not causing Crohn’s.
But yesterday I came across the abstract to a paper on Crohn’s Disease that indicates that Crohn’s patients frequently have “carcinoid tumors”–another phrase for NET cancer–in their intestinal tract.
What is Crohn’s?
Crohn’s is another of those intestinal diseases often grouped together under Irritable Bowel Syndrome. And it is also fairly common for people who are eventually diagnosed with NET cancer to, at some point, be told they have Crohn’s instead.
…Crohn’s affects as many as 700,000 Americans.
According to the Crohn’s and Colitis Foundation of America, Crohn’s affects as many as 700,000 Americans. If many of them have carcinoid tumors, then this is another vein that may be disguising thousands of cases of NET cancer that are never officially recognized as such. Should we be testing every Crohn’s patient for NET cancer the same way I have encouraged every IBS patient be tested for NET cancer?
Relationship between Crohn’s, NET cancer not clear
Since no one is clear as to the cause of Crohn’s, might at least some of the disease be being caused by those NETs in the Crohn’s patients’ intestines?
…Crohn’s patients frequently have “carcinoid tumors”…
A review paper written in 2007 based on 111 cases of Crohn’s found 3.6 percent had carcinoid tumors. But the paper also said those tumors were at a significant distance from the site of the Crohn’s Disease. The tumors were not creating carcinoid syndrome. Further, the researchers said, the carcinoid tumors “may be secondary to distant proinflammatory mediators, rather than a local inflammatory effect from adjacent Crohn’s disease.”
Is there a Crohn’s connection to NET cancer?
They did conclude, however, that people with Crohn’s were clearly more likely to develop “carcinoid tumors” than the rest of the population. Unfortunately, we understand so little about either disease we cannot be sure the carcinoid tumors if both diseases are being created by the same underlying issues.
Given, however, that only 3.6 percent of Crohn’s sufferers also had carcinoid tumors, it would appear NET cancer is not causing Crohn’s.
About 25,000 Crohn’s patients have NET cancer tumors
But if 3.6 percent of the 700,000 Crohn’s patients have NET cancer tumors in their bodies, that potentially increases the number of NET cancer patients by 25,200. That would be about 20 percent more patients than we currently have diagnosed and living with the disease.
…trying to nail jello to a wall.
Once again, it is our ignorance that is the problem. Only by doing basic research can we come to understand the problems and connections within the human body. That research requires money neither the federal government nor the private drug companies frequently are willing to supply. Filling that void is part of the reason I so often have my hat in my hand.
The battle against NET cancer has been especially hard for me these last few months. While it seems we are making progress on the disease and that we more than met our fundraising targets for the year, I have been plagued by doubts about the time I spend writing and working on this site.
I want NET cancer dead.
In nearly 17 months only nine items have garnered more than 100 views. And where once we were averaging nearly 40 views per day, December averaged but nine. Every NET cancer post takes three hours to write–and never mind the time to do the research and find appropriate links. Every article I read or video I view takes at least a half an hour–and too many contain nothing new or useful. The few comments people write are generic or clearly spam. And the search engines routinely avoid us despite every method I use to move us up the ranks.
NET cancer voices
There have been moments at which I have wanted to chuck it all and walk away. Surely I could be making better use of my time than doing what I am doing.
I have seen too closely what cancer does…
And then I get a note or a Tweet from someone. They’ve just been diagnosed with NET cancer or have suffered from Irritable Bowel Syndrome for years or were looking for a doctor or a program or a support group. What they found here gave them hope or helped them better understand the peculiar cancer they face.
That has happened twice this week. Their voices have pulled me out of a part of the funk that has plagued me since mid-November. There is, ultimately, a point to what I am doing here. And if I can help even one person a month that should be enough.
The other side of NET cancer
But for the larger awfulness, there is little they–or anyone else–can do. I have written here before about the deep pain losing Jane has caused me. I have written before about that empty void that no words or acts or hugs can fill–about the long and painful silences that infest this house at night–and that pursue me even into the most joyful and filled rooms I enter.
And then I get a note or a Tweet…
That pain, too, drives me. I have seen too closely what cancer does to a human being. I have witnessed the growing weakness, the loss of dignity, the struggle that is heroic in its hopelessness. I have seen too closely what that death does to the surviving spouse. I know too well what it is to look across 30 or 50 or 60 years of life beyond the moment of widowhood and see nothing there but an empty house and an emptier soul.
I want NET cancer dead
I want NET cancer dead. I want lung cancer dead. I want all cancers dead. I want them dead so couples and families have more time together to laugh and to sing and to do all the inconsequential little things that make a life together.
I have been plagued by doubts…
And if I can play even a tiny part in making that happen then, perhaps, how ever many empty years lie ahead of me, there will be some point in what Jane and I have gone through.
It isn’t just that we have no reliable way to detect NET cancer early. It is not just that we have no cure for the advanced stage the disease is at when we finally diagnose it correctly. And it is not the physical awfulness of the end of a NET cancer patient’s life. It is the begging for money our healthcare system requires of patients and their families.
In the richest country in the world, that’s just wrong.
One of the people I follow on Twitter is a young woman with two children and pancreatic cancer. There is apparently a treatment available at MD Anderson in Texas she would like to try. But she has to get there, stay there for an extended period and, likely, will have to pay for the treatments out of her own pocket if they are considered experimental by her health insurance provider.
The moral price of treatment
Too many Americans face this kind of trouble getting treatment for their cancers. Several times a year I walk into a store and see a jar with someone’s picture on it and a wrenching story about raising money for some form of cancer treatment that is not available locally. Several times a month online I see pleas from NET cancer patients who need to go to Europe for PRRT treatments they hope will buy them a few more years with lessened symptoms.
…most people in the US are not so fortunate.
Lately, I’ve begun to see similar requests from people involved in the American trials of that radiation therapy for NET cancer.
NET cancer patient and full-time fundraiser?
I work at fundraising several hours every day and I know how tiring and frustrating it is. But I am physically healthy. I cannot imagine doing what I do every day if I had cancer and had to raise the money to pay for treatments in addition to taking care of kids and working–or had to function as a caregiver as well. I cannot imagine having my life depend on whether or not I could raise $20,000 this month and another $20,000 next month and another $20,000 the month after that.
Her monthly Sandostatin injection was nearly $10,000.
Those are the goals we face every month if Walking with Jane is to meet its fundraising goals for the year, but if we fall short, we are not going to have to pass on a treatment that could mean another year or more of quality life.
NET cancer treatment costs
Cancer–particularly the ones we do not know how to cure–too often reduces patients and their families to beggary. A one month supply of Jane’s daily Octreotide was $58,000. Her monthly Sandostatin injection was nearly $10,000. At one point when she was in the hospital we were running a month’s worth of Octreotide into her every 12 hours. Following her heart surgery, she was in an intensive cardiac care ward for 28 days at one of America’s best hospitals.
Too many Americans face this kind of trouble…
We were lucky. We had good insurance and good state statutes so that virtually everything was covered. And we had cutting edge medical facilities within easy driving distance. But most people in the US are not so fortunate. They would have dealt with financial bankruptcy hard on the heels of their grief.
This is just wrong
In the richest country in the world, that’s just wrong. No one who fights cancer should have to spend a second worrying about where the money for treatment is coming from.
It is the begging for money our healthcare system requires…
What we have now is better than what came before it–but it is not enough–not when a woman with two kids and pancreatic cancer needs to raise the money for her own treatment.
(If you’d like to help Penny Adams-Jackson, the woman I mentioned in this piece, here is the information for the fund that has been set up for her: Penny Adams-Jackson Medical Fund, Farmers & Merchants Bank. 1315 West Market St. Bolivar, TN 38008.)
It’s cold outside. The wind is biting. The temperature dropped throughout the afternoon and will continue to do so through the night. But cancer does not care about cold or wind any more than it cares that it is killing its host. S I spent most of the day pounding the streets of Fall River with Relay For Life Kick-off dinner posters in my hand, moving from store to store and restaurant to restaurant to get the word out about next Friday’s event. (Saint Bernadette’s Parish Hall, 529 Eastern Avenue, Fall River, MA, January 25, 6 p.m.)
The war on cancer does not end…
Reading this column every day one could be excused for thinking the only cancer I think about is NET cancer. The truth is that while my focus is on NET cancer my experience with other cancers is too frequent and unpleasant for me not to think about them as well–and my friends and neighbors who have to deal with their individual battles with the cancers they face.
Why Relay for Life, too?
Again this year I am a chairman for the Relay For Life of Greater Fall River. Again this year, Walking with Jane will have a team at that Relay. And again this year, we will try to double what our team raised a year ago. The money we raise through Relay won’t be ear-marked for NET cancer–but will go to support cancer research generally and patient support. But I am also very aware that the American Cancer Society is currently one of the largest funders of NET cancer research we have. They kick in about $1 million for the NET cancer research kitty each year.
Relay is a testament to the power of one man with an idea.
And I am also aware of how important their support for cancer patients is above and beyond funding research. They help with rides to appointments, wigs, make-up classes, and a dozen other support services for people facing the most difficult fight in their lives.
Relay for Life is about community
But Relay For Life is more than a mere fundraising gimmick. For those of us who have lost someone we love to cancer, Relay provides a community that gets it. There are hundreds of cancer survivors there–but there are also hundreds of people who have said good-bye to someone in a hospital room who was never coming home again.
…a community that was willing to do more…
I came into Relay For Life seeking a way to avenge Jane’s death. But I found a community that was willing to do more than help me raise money; I found there a community that understood what I had gone through as a failed care-giver and helped me understand that I had failed no more than Jane had–that we had both succeeded in our fight against her disease, even though she had died.
The power of a simple idea
Without the support of those in our local Relay For Life I am not sure I could do the NET cancer work that consumes most of my days. They are there when I need a reminder that I am making a difference. They are there when I feel achingly alone. I know they will be there, fighting this fight, long after I am gone.
…people facing the most difficult fight in their lives.
Relay is a testament to the power of one man with an idea. Gordy Klatt started out by running around a track by himself for 24 hours to raise money to fight cancer. Today, Relay for Life is the biggest fundraising vehicle in the world. His example reminds me that each of us really does have the power to change the world.
Please join in
So today I ask you for your help not just in the fight against NET cancer, but against all cancers. Join your local Relay For Life. If you are already involved with it, find ways to do more.
…cancer does not care about cold or wind…
The war on cancer does not end until we have a cure for every cancer.
I read a lot of stories about individuals who have been diagnosed with NET cancer in the mainstream press now. The increase in coverage of those stories is impressive over the last two years. And every one of those stories puts NET cancer on the map in another community–raising awareness in
a highly personal, memorable and moving way.
I want them to have the life that Jane and I imagined…
Because a NET cancer diagnosis is seen as something new and interesting by local media, we get more press coverage than we once did. And I have to admit that getting any press coverage is a good thing.
The NET cancer litany
But what is depressing about that coverage is the dreadful sameness of the stories they tell. I’m not talking about their explanations of how rare the disease is or how difficult diagnosis is. I’m talking about the stories the patients themselves tell
about their encounter with NET cancer and carcinoid syndrome.
Every story makes me cry…
They all talk about the years of stomach pain, gas and diarrhea. They talk about the flushing and the insomnia. They talk about how they were diagnosed with IBS or a chronic lung problem or anxiety–the standard litany of horses that the zebra of NET cancer comes disguised as.
Their NET cancer hope
Almost without exception, they explain how they were not diagnosed until the disease was at an advanced stage and how narrow their treatment options are. They are all, as Jane and I were, optimistic about their chances of beating the disease. They talk about the advances that have been made in treatment and the trials they have been enrolled in the doctors hope will have a good result.
I see Jane’s story told again and again…
I see Jane’s story told again and again and again. I hear in the words of the spouses my story told again and again and again.
The reality of NET cancer
Every story makes me cry because I recognize it as our own story so much of the time. I weep for them and for Jane and for myself–and for all the others who share this same hideous story. I know too well the story they are not telling–that many of them do not know at the time they are being interviewed but will only learn in the weeks, months and–I hope–years ahead.
…the dreadful sameness of the stories they tell.
Once NET cancer has reached an advanced stage we cannot cure it. We can slow its progression–sometimes–but eventually it will cause death–either from carcinoid syndrome or organ failure.
NET cancer dreams
There is hope on the horizon. There are new drugs in the pipeline–albeit largely designed for other cancers. We have two viral treatments that show some promise in early trials. Liver ablation and embolization give us tools to starve metastases in the liver. We will soon have in hand DNA results that will help us figure out who is at risk and may give us a better handle on how to attack the disease.
…getting any press coverage is a good thing.
But I want those NET cancer patients to have more than a sliver of hope–I want them to have the real possibility of a cure. I want them to have the life that Jane and I imagined–but never got to have.
