I finished the Marathon Walk this afternoon. My feet hurt in the aftermath and I am hugely tired, so I won’t write much here besides the haiku I composed on the road:
22.6
I walked with you in my heart
NET cancer dies.
More tomorrow when my fingers work and my feet don’t hurt quite so much. Thank you all for your support. Together, we will kill NET cancer.
It is the Night Before Marathon. I’m here in my room watching the clouds and the wind and the rain–and hoping tomorrow will be a better day.
I cannot describe to you what it is like…
I’ll be up before dawn to bandage my feet, get into my armor, and have something to eat. But tonight I sit quiet here at my desk. The silence is painful and my thoughts are too dark.
Two years ago Jane was already in trouble. We’d met Jennifer Chan and Javid Moslehi–and between them they’d told us the best and the worst. Jane’s heart had been damaged–so badly she would need surgery as soon as we could get the cancer load down to a level that would give her a chance. But the surgery would open other options of treatment her heart could not currently handle.
I will have its scalp.
And so the race began between the NET cancer, Jane’s reserves, and her failing heart. It was a brutal race. It cost Jane every ounce of strength, courage, and optimism she had–and cost me every ounce of those things I had as well. Twenty-one months later I am still physically and emotionally damaged.
That will not stop me tomorrow. Rather, it will fuel me–as it did a year ago. When the pain arrives–and it will–I will remember Jane in that hospital bed, fighting with everything she had every day for weeks. My pain tomorrow will be as nothing compared to that pain. It will be as nothing compared even to my own pain in the last hours of her life–and in all the hours since her death.
It was a brutal race.
NET cancer made many powerful enemies when it went after her. Her four weeks in the hospital inspired everyone she met. People who had never heard of the disease before became its mortal enemies. And from the moment of her diagnosis, it made an enemy of me.
Eight, ten, twelve, fourteen sixteen, sometimes eighteen hours a day I grind on NET cancer. I read, I study, I think, I write, I walk, I run–some days I feel like I am even eating this disease. It is the thing that took my beautiful one from me–and forced me to watch while it did it. I will have its scalp.
I cannot describe to you what it is like to watch the person you love reduced day-by-day to nothingness–and be powerless to stop it. I cannot tell you what
it is like to force yourself to be positive and upbeat–to never show a moment’s doubt in the face of the building certainty of death. I cannot tell you what it is like to hold someone’s hand, knowing they will never wake up again, waiting for death–wanting it to come at the end and not wanting it to come to an end.
…tonight I sit quiet here at my desk.
So tomorrow I will walk. I will walk through blisters, cramps, and every kind of muscle and bone-ache there is. I will walk in the hope that we will find an answer to NET cancer–and to all the other cancers–so that no one has to die that particular death again–so that no one will have to watch that particular kind of death again–and feel so helpless and so useless.
Good night–and good luck.
NET cancer research is $10,000 richer today because of those of you who have answered the call for donations to my Jimmy Fund Marathon Walk this summer.
NET cancer research is another $6000 richer today thanks to all of you who have answered the call of others on our Caring for Carcinoid Walking with Jane team.
…a sincere thank you.
NET cancer research is another $53,000 richer today thanks to the Kulke’s Krewe team’s fundraising efforts over the last several months.
That works out to $69,000 from our groups for this year’s campaign so far–and there are still two full days for people to make contributions in.
That money will go to fund research into NET cancer, to leverage additional money from foundations and other individuals, to train primary care doctors about how to recognize the symptoms of NET cancer and carcinoid syndrome. That money will make difference in the lives of both patients who know they have the disease and those who don’t yet know they have it.
I have to tip my cap to Robert Ramsey, the captain of Kulke’s Krewe.
That money will go to help fund the work of the Program in Neuroendocrine and Carcinoid Tumors at Dana-Farber. It will help fund the work to develop an animal model, to develop new cell lines, to analyze the DNA of those with NET cancer and compare their DNA to those who do not have the disease so we can, at last, begin to understand where this cancer comes from and how it works.
That money reveals just how many of us have been deeply touched–and deeply wounded–by this cancer–and just how deeply committed we are to finding the answers that will lead to a cure. I hope, in these final days of the campaign, that these two small groups–our combined teams total just 62 people–will reach $100,000 in donations. That would be close to $1500 per team member. That would be a huge accomplishment.
That money will make difference…
I have to tip my cap to Robert Ramsey, the captain of Kulke’s Krewe. I have tried to keep pace with him the last few weeks, but his personal effort has taken him to more than double what I have raised–$7000 in the last week alone.
But the clock is ticking. Every second brings us closer to Sunday’s Walk–which looks increasingly like it will be wet. More importantly, every second we don’t have a cure means every person with NET cancer is one step closer to where Jane was at the end. If you can help–even in the smallest amount–please do. You can give online. Or you can send a check–in any amount–to Walking with Jane, P.O Box 9721, Fall River, MA 02720.
As I write this,walkingwithjane.org is one view short of 12,000 since September 2 of last year. I really wanted to see that 12,000 mark eclipsed before our anniversary, but five days late will be better than not getting there at all.
NET cancer research is…richer today.
To all of you who have visited since our launch last year, a sincere thank you.
And to those who helped build all this–designers Carissa Broadbent and Mike Goeppner, primary writers and editors Phil Devitt, Becky Martins, Katie Dupere, Meg Allen Flanagan, Chari Swist and Rae Brinkmeyer–I am eternally in your debt.
With the Jimmy Fund Marathon Walk breathing down our neck Sunday we could use donations both big and small to move our NET cancer centered Jimmy Fund Marathon Walk teams forward.
There is a lot of potentially good news…
Our Caring for Carcinoid Walking with Jane team has officially logged $14,400 as of this afternoon. That is good for 39th overall out of 900-plus teams. Kulke’s Krewe, the other NET cancer focused team, is currently in seventh with $36,706.20. Their top fundraiser has raised as much as our whole team to this point. He is in the Top Ten overall.
I continue to lead our team in donations to this point with $8079.30. I have another $250 on the way between a corporate match and money I collected this week. Last Friday’s leader-board has me in 25th place
overall. For those raising money for NET cancer, I am in second.
Elizabeth MacNeil continues in second for our team with $3008.60. Among first-time walkers she is 16th overall through Friday and could be in the Top Ten there by the weekend given her efforts this week. Among all walkers, she is 121.
Friday’s leader-board has me in 25th place overall.
Jenaleigh Landers continues to hold down third on the team, with $576.20 raised through today.
We also added a new walker this week to bring us to 15: Katie MacNeil.
New Walkers can continue to register this week. If you can join us, please do.
I have no official statistics beyond my memory of last year’s numbers to back me up, but it appears donations for the Walk in general are down significantly from last year–as are the numbers for our NET cancer team. Caring for Carcinoid’s team raised over $35,000 last year by the day of the event. This year we will have managed just over $15,000 if I am reading things right. A year ago, we had 7-10 Pacesetters. This year we have but two.
Our…team has officially logged $14,400…
But the numbers seem off to me across the board for other teams and the event as a whole. The economy is tough this year and fundraising numbers are down for many organizations this year.
That is just one more reason I am asking people to do what they can this year especially. There is a lot of potentially good news out on the NET cancer and cancer horizons this year. But to turn potential into reality is going to cost money regardless of the economy. If you can help, please do.
Together, we can make NET cancer history.
This NET cancer website you know as walkingwithjane.org celebrated its first anniversary on Sunday, the same day Jane and I would have celebrated our 23rd anniversary. To term the day bittersweet would be a huge understatement. In many respects, I wish I had scheduled the opening for a different day–either far earlier or far later. Now, just as our wedding anniversary always borne the pain of our imminent return to school, now the site’s anniversary will also bear the weight of our anniversary.
NET cancer patients and their caregivers need more than information.
But a year ago it was the right thing to do. It kept my mind occupied on the first anniversary without Jane at my side–and me by hers. Friends provided some distractions this year–as did the hint of a cure I wrote about this weekend. But this anniversary proved harder than last. And that has made me all the more determined to continue to help work toward a cure for NET cancer.
I was–and am–too young to be a widower, and too old to be a bachelor. I would wish this fate on no one.
But as I look back over the months since Jane’s death I cannot help but be pleased at what we have accomplished in that time. We have raised just under $14,000 for the American Cancer Society, more than $50,000 for the Dana-Farber Cancer Institute and another $5000 for the Caring for Carcinoid Foundation. We have committed another $5000 to deserving students pursuing careers in science education and medicine. That is $69,000 total, so far. We have established a non-profit charitable corporation, Walking with Jane, Inc., to facilitate all that.
It is especially easy for NET cancer patients to feel like victims.
And a year ago we launched this website. We’ve had just under 12,000 views in that time–we will hit 12,000 some day this week–and the vast majority of those views have been people looking for information about NET cancer. Last week someone who came to the site from the Carcinoid Cancer Foundation said we were written in language that was easy to understand. That was the major point of the exercise for me. When I started looking for information on NET cancer and carcinoid syndrome right after Jane was diagnosed, most of it was written in fairly dense language that even my masters degree education found taxing.
I set out to create a site where people in trouble with NET cancer could find answers in relatively easy to understand language. When I started the Resources pages I separated things out by my perception of how easy they were to understand. I wanted medical professionals and lay-people both to find the site useful–and I knew mixing everything together was not going to do that.
That is $69,000 total, so far.
But I also wanted a site that would make people think about the issue of NET cancer in some atypical ways. One of the things I take away from my experiences with the American Cancer Society’s Relay for LIfe is the idea of fighting back. It is especially easy for NET cancer patients to feel like victims. The mainstream cancer establishment has largely ignored the existence of NET cancer for the last 44 years, as has the federal government. Even our advocates sometimes seem in no hurry to find answers to this disease.
So there are days I push a political agenda here. It is neither a Democratic nor a Republican agenda. Rather it is a NET cancer agenda. We need to push every button we can find to get this form of cancer the attention it deserves.
I was–and am–too young to be a widower…
I can tell you with absolute certainty that a potential cure for lung cancer or breast cancer or prostate cancer or colon cancer would not sit in a freezer for 30 months waiting for some organization or government to fund a Phase I trial the way the oncolytic virus I wrote about this weekend has sat in one in Sweden.
NET cancer patients and their caregivers need more than information. They need hope. And they need someone to carry the NET cancer banner wherever it needs to go to get potential cures out of the freezer and into use.
NET cancer will never be cured by the free market. It will never be cured by a government that makes decisions based on cost-benefit analysis. And it will likely not be cured by the kindness of strangers.
That needs to change.
Saturday, I received a note from the Carcinoid Cancer Foundation about a potential cure for NET cancer that is sitting in a freezer in Sweden. The difficulty is the researchers cannot find the money to do even a Phase I trial of the oncolytic virus they have developed that, at least in mice, likes to eat NET cancers. Because the virus was engineered from an existing virus–and the group published its results very quickly–the virus cannot be patented.
The result of that is that no big pharmaceutical company is willing to pony up the money to fund the trials in humans because without a patent they will be unable to recoup their investment. Even were the virus patentable, given the relatively small market for the drug and the fact if it really works there is no repeat business–ideally, you use it once and the cancer is gone–the profits would likely be relatively small. And where profits are small, private enterprise has small interest.
Of course the next place the Swedes turned was to their own government. But the government of Sweden does not fund human trials–that is the purview of private enterprise.
I prefer not to bet on the kindness of strangers.
But even were the trials done here we would be hard-pressed to get money for the trials from the US government. Remember, all federal funding was cut for NET cancer research in 1968 on the basis of cost-benefit analysis. We have a mere 120,000 diagnosed cases of NET cancer in the US. There are a lot more people with lung cancer, and breast cancer, and…and they will die more quickly than NET cancer patients. So solving those cancers provides a greater benefit than solving NET cancer.
I would not hold my breath waiting on the US government to step in to solve this funding problem.
The Swedes have come up with an approach to funding worthy of any American sports team in search of a new venue: Naming Rights. Donate $1.6 million and you get to name the new virus. That could, I suppose, be a big deal: What else do you get the multi-billionaire who has everything besides putting his name on a new virus? Assuming it works virtual immortality is assured.
…it may do nothing at all.
But that, in part, is the rub. We have lots of drugs that work well in mice or fish or monkeys. But very few of those drugs work equally well in humans. And some of them prove deadly. This new oncolytic virus may prove out every bit as potent in humans as it does in mice. Or it may do nothing at all.
There are people out there for whom a million or two or three is pocket change. None of them are likely to read this post, but maybe one of them will. Maybe you know someone who knows someone who knows someone who can get it to them.
…where profits are small, private enterprise has small interest.
But I prefer not to bet on the kindness of strangers.
So, in the meantime, I’ve asked a couple of doctors to take a look at the research on this particular oncolytic solution. I’m going to continue to do some research myself. In a few days–a couple of weeks at most–I hope I will have a clearer idea whether this is a good investment for
our time and resources or not.
NET cancer will never be cured by the free market.
For 44 years NET cancer patients and their caregivers have known they can only rely on their friends and each other.
That needs to change.
(For a chatty, in-depth look at the potential cure for NET cancer, here is an article from a British newspaper.)
You wore white that day–and I wore gray. I stood
And watched you whisper down the aisle, a pearl
In morning sunlight, bathed in air that could,
And did, ignite and forge our hearts to one.
You wore bronze that day–and I wore gray. I watched
Them roll you down the aisle to where we stood
And vined our lives and souls together then.
I stood aside: Death and Life reclaimed you.
You walk the Garden now: no flowers fall,
No leaves turn brown, no hummingbirds depart.
I walk the Earth. The flowers whither, fade–
Leaves turn brown and die, the birds fall silent.
Still our twined and knotted souls strive to reach
The holy note that gives the Earth-chord speech.
All my love, always and all ways,
Harry
We have a potential cure for NET cancer.
It is sitting in a freezer in a lab in Sweden.
It’s been sitting in that freezer for 30 months.
For want of $1.6 million…
It’s been sitting in that freezer for 30 months because no one has the $1.6 million it will take to do the trials that will prove it works on a large-scale.
It has been sitting in that freezer in that lab for 30 months because the scientist who figured it out published his results quickly. This means, apparently, that no pharmaceutical company will fund the trial because without a patent they won’t be able to make back what it costs. And his altruistic decision to tell people what he had found as early as possible means no one can get a patent.
That $1.6 million represents just under half of what was raised by foundations to fund NET cancer research in the US last year. For NET cancer researchers that trial would be the equivalent of betting your house on a single hand of blackjack. It would defund half of all the research being done without drug company support.
Thirty months ago, Jane was still alive. Her legs were not swollen, she could still climb a flight of stairs without getting winded. The diarrhea was frequent but not constant.
I have some thinking to do…
Thirty months ago we may have had the cure in our hands.
And it went into a freezer.
Getting into that trial might have saved Jane’s life. Getting into that trial might have meant I would not be spending our anniversary tomorrow in a cemetery.
…it went into a freezer.
And even if it did not–even if Jane’s NET cancer had been too advanced–how many spouses would not be celebrating anniversaries in graveyards? How many would have their wives and husbands with them today who do not now?
For want of a nail, the shoe was lost. For want of a shoe, the horse was lost. For want of a horse, the battle was lost, for want of a battle, the kingdom was lost. For want of $1.6 million…
I have some research I have to do yet on this potential cure. I need to have some conversations with some people more qualified than I am to analyze what is there. I have some thinking to do about resources and how to marshal them.
It’s been sitting in that freezer for 30 months…
But if this thing is real–and the Carcinoid Cancer Foundation says it is–and they have been at this for over 40 years–then we need to find a way to get the trials required done. Finding the additional money to do that will be hard–but it has to be done–without destroying all the other research currently going on.
I reached the top 25 as a fundraiser in this week’s standings–and that does not include close to $900 they had credited me with on the site but not in the standings. I am hoping to reach $10,000 between now and September 9. If we get there by midnight tonight I will shave my head for the event.
Our team has raised over $13,000. We should get to $15,000 by next week, but that will leave us well short of our $25,000 goal. Unfortunately, we are a much smaller team than we were a year ago–and far less experienced. But we have a lot to build on for next year–and we are still out-performing many other, larger teams.
All money our team raises goes to the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber.
With your help, we will continue to have an impact on the search for a cure for NET cancer.
Twenty-four months ago Jane and I were new to NET cancer. We had a diagnosis, had talked to an oncologist, and our first meeting with Dr. Jennifer Chan at the Dana-Farber Cancer Institute had been scheduled but was still a week away.
I will write Jane another poem…this weekend.
Jane had spent the last week in her classroom at school throwing out the things she would not need–and knew her replacement would have no use for. She had turned in the letter that put her on indefinite medical leave. The cancer had metastasized to her liver, and we both knew that could not be good.
We talked about me taking a leave as well to stay home with her. She had over-ruled that with a single rhetorical question: “What are we going to do, sit here and stare at each other?” We both knew that travel beyond Boston for appointments would not work. We had seen how weak she was when we took our last vacation together in early August.
A couple days before our anniversary we found a simple silver bracelet she had told me she wanted. I had put it on her wrist and she told me no one would take it off but me. I took it and her wedding ring off the day she went into surgery. On the morning of our anniversary I gave her the poem I wrote for her every year. She cried when she read it. We opened our cards and our presents. I brought her breakfast in bed.
I feel good about all of that.
For lunch we went to a little, out-of-the-way restaurant we liked in New Bedford. That night we curled up on the couch together and had our annual toast–though with sparkling cider instead of champagne. We tried to pretend for each other that there would be more anniversaries together. I think we even believed it.
A year later I faced our anniversary alone. I wrote her a poem and placed it and a card and flowers on her grave. I sat there for a long time. Then I came and punched the buttons that brought this website into the world. I had been working on it with two former students for weeks beforehand and we had finalized the design just a day earlier. I spent much of our anniversary writing content, editing, and putting things into a “final” shape.
She told me no one would take it off but me.
It kept my mind occupied.
Sunday will be our 23rd anniversary. I look back across this year and I know we have done a lot. The website has had close to 12,000 views. We have raised awareness about NET cancer. We have raised some money, met some researchers, seen some real progress toward making patients’ lives better.
I feel good about all of that.
We tried to pretend for each other.
But my heart has not healed. Oh, I can laugh, eat a bowl of ice cream without crying, have a glass of wine with dinner without worrying about climbing into the bottle. But the ache is still there. I avoid going to bed and there are physical locations I am not ready to confront. Half my soul is gone–and it isn’t coming back.
I will write Jane another poem and put it on her grave this weekend. I will write her a card and buy her some flowers as well. And I will remember.
The cancer had metastasized to her liver…
A number of my former students got married this summer. Others celebrated anniversaries or had babies. My wish for them–and for all of you–is the love Jane and I shared for 21 years, three months, and eight days in the physical world–and that I still feel for her almost 21 months after NET cancer took her from me.
Sometimes I see the NET cancer glass half empty as I did in much of yesterday’s post. I started out planning to give both the depressing and the exhilarating equal space. Unfortunately I underestimated how much darkness there was in that 28 mile hike on Monday that represented my final heavy lifting for the Marathon Walk 11 days from now. Or at least I underestimated how many words it would take to explain it in. I try to keep these posts to 500 words, but that has been very difficult lately–and yesterday…
The day is coming when NET cancer will die…
So let me give the positive things I thought about on that walk Monday their innings today. Because there were a lot of really positive things that found their way into my head that eventually overwhelmed the negatives.
The first of those was reflecting on the incredible generosity of so many of my friends and former students. We raised nearly $10,000 between January and the end of June for the Relay for Life of Greater Fall River. We did that despite the heat and the thunderstorms that kept the crowds down the day of the Relay. And we did that despite the fact I was largely absent mentally and physically for those six months because I was chairing the event–and because my mental and emotional states were incredibly fragile. That $10,000 was a real team effort that involved even our youngest members coming up with–and executing–great ideas. To know that others care that much about Jane–and about me–that they would pick up the ball when I really could not was exhilarating.
We had our biggest day in months…
Since June I’ve launched a series of direct mail appeals to support my personal Jimmy Fund Marathon Walk effort. People have, again, opened their hearts and opened their wallets and purses. The donations have not been the kinds millionaires and the well-to-do make. Our biggest donation–there have been two–has been $250. The vast majority have been in the $25-$50 range. But there have been lots of those –enough that we are less than $100 short of $7500 and could reach $10,000 in the days between now and September 9. That, combined with what the other members of our joint Caring for Carcinoid Walking with Jane team have raised, will put about $15,000 in the Walking with Jane Dybowski Fund coffers above and beyond what is already there and what I think will come in between now and year’s end. Dana-Farber tells me that will help leverage more substantial money from other sources as well.
But there is more to all this than money. One of my major goals this year was to begin to get the word out about NET cancer to both potential patients and the medical community. Last year we began that work with a whole series of stories about NET cancer, the researchers, the patients, the caregivers and the symptoms of the disease. This year we already have had stories in all the local papers about NET cancer and our efforts to not only raise money, but also to raise awareness. We’ve printed and distributed a pamphlet on the disease with the help of one of the doctors at Dana-Farber and have begun work on our second package of stories aimed at an audience beyond the Southcoast of Massachusetts.
But there is more to all this than money.
We have a long way to go to reach the 3,000,000 people goal I set back in early June. But you would be hard-pressed to find someone in our area who has not at least heard the words NET cancer at this point. Making the jump to a larger stage will not be easy, but we have begun to lay the groundwork.
We got some substantial help this week from two different sources. The Carcinoid Cancer Foundation posted about our Marathon Walk effort on their Facebook page and referred people to our site while I was out walking. One of those who went praised how clearly written the things on the site are. We had our biggest day in months as a result.
The vast majority have been in the $25-$50 range.
The Jimmy Fund newsletter, Impact, also gave us a big boost this week. They ran an article about the Walking with Jane Dybowski Fund with a wonderful quote from Dr. Matt Kulke that praised our efforts. The print version has been out for a couple of months, but the online version was published this week and brought NET cancer more attention than it often gets outside the oncology profession.
And the medical research progress has also been substantial in the last 18 months. Dana-Farber launched the Program in Neuroendocrine and Carcinoid Tumors. We now have Carcinoid cell lines growing in the test tube and are in the process of proving an animal model for the disease. There is a new drug being tested that has the potential to replace octreotide because it hits four of the five serotonin receptors instead of two. RPPT is in trials in the US–trials that have just been modified to see if it will work on liver metastases of NET cancer. (See our Resources page for details on these breakthroughs.) And those are just a few of the highlights.
…there were a lot of really positive things that found their way into my head…
We are making progress–perhaps not enough progress to suit me, but those who know me know I am never satisfied until we get to the end and achieved victory.
The day is coming when NET cancer will die without the patient having to die as well. That day cannot come soon enough to suit me.
