When I started Walking with Jane, one of my goals was to put a human face on carcinoid/NETs. I want people to know the name that goes with that face, as well as her story. But there are other faces and names whose stories need to be known, as well.
The name of the foe
I lost my wife Jane to carcinoid/NETs on December 10, 2010. We vowed when she was diagnosed less than four months earlier that we would find a cure. In the end, she killed her cancer the only way she could: by dying and taking it with her.
I’m not going to solicit you for a donation…
Since her death, I’ve worked with several different groups to raise awareness about the disease and fund research. Each September, I lead a team in the Boston Marathon Jimmy Fund Walk that raises money for research into carcinoid/NETs research at the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors.
The name on the shirt
This is not a request for donations–at least not monetary ones. Each year, I design a t-shirt for our team. Last year, I included on the shirt the names of three people, including my wife, who had died of carcinoid.
I lost my wife Jane to carcinoid/NETs on December 10, 2010.
This year, I am thinking about incorporating more names into the shirt design. Approximately 33 people die of carcinoid/NETs every day in the US. We diagnose about the same number every day–although that number is increasing each year.
Sixty-seven names: the living and the dead
What I think I’d like to do is
include the names of 33 people who have died and 34 people who are living with the disease on the shirt. I don’t want your address or your email. I’m not going to solicit you for a donation later.
Approximately 33 people die of carcinoid/NETs every day…
We do have people on our team who have lost loved ones to carcinoid/NETs. We have others who have the disease. If they want their names on there, I will give them preference. But we are a small team, and I don’t see more than five names coming out of that group, total.
The power of a single name
If you are interested, you can simply put your name below in the comments. If you think this is a bad idea, you can say that, too.
…we are a small team…
If you want to know more about us and our team, you can visit the rest of this website. Caring for Carcinoid is the other sponsor of our team. You can learn more about them at caringforcarcinoid.org.
I travel to schools, health fairs, walks and runs. I will go anywhere I can tell Jane’s story and raise awareness.
Sad tears never came easily when Jane was alive. When you live in joy there is rarely anything that can make you that unhappy. Since her death, happy tears have come rarely. When you live in sorrow there is rarely anything that can make you that happy.
…sometimes I hear news that reduces me to joyous tears.
I have cried twice today–once for sorrow and once for happiness. That is the nature of the Extra Mile Jimmy Fund Marathon Walk Brunch, which I attended for the third time this morning. It is an event mixed of equal parts joy and sorrow for me, but this morning especially so.
Mother on a mission
Each year, one of the speeches at the event comes from either a patient or a family member. This morning, a woman who lost her son to cancer spoke. She lost her high school age son to cancer two years ago. I have seen parents crippled forever by that kind of loss. She, however, refuses to let her own pain stop her from helping others.
Since her death, happy tears have come rarely.
Her first Jimmy Fund Walk started at Dana-Farber. She walked those three miles with her son. They crossed the finish line together. A year later, she formed a two-person team with another mother whose daughter was fighting cancer. They called their team MOM, for Moms on a Mission. They walked 26.2 miles each and met their son and daughter at the finish line.
A new vocation
Her son’s struggle and death put her on a new mission that has sent her back to school to become a medical interpreter, so that parents who do not speak English can have an advocate to explain what is going on to them. She said, “Cancer speaks every language.” My eyes were already soggy by then.
They crossed the finish line together.
I managed not to cry when a woman I met by chance a year ago at the Brunch stopped by our table. We had talked about some symptoms she was experiencing at the time, and I had urged her to see her doctor about them. This fall they removed a substantial growth from her intestines.
Tears of joy
She has a son who was diagnosed several years ago with cancer. She had begun walking when he was diagnosed. Now she has two reasons to walk–and two reasons to fight. Tomorrow, she will get the test results that will likely tell her they got it all.
Cancer speaks every language.
It was only after I got home I gave in to the emotions I felt as we talked. I wept and cried and let the tears flow down my face.
Accepting the pain of joy
Joy is an emotion I fear more than sorrow these days. It rips through me in unaccustomed ways and takes me places I am not yet ready for my soul to go. Sorrow is a comfortable old shoe. Joy aches like a blister that I fear will break too easily into new pain.
Now she has two reasons to walk…
But I will take the joy, regardless of that fear–or any pain that may come with it. She has won more time to live, to enjoy her son, to do the things she loves. I am jealous of that–jealous of the time she has won that Jane and I did not get–but that jealousy also feeds my joy at her survival: We have stolen another life from cancer’s maw.
The potential joy of walking
People ask why I do what I do: why I walk through the night at Relay, why I put in the miles and miles of training, why I trek from Hopkinton to Boston for the Jimmy Fund, why I write this blog, present at that health fair, pursue knowledge of cancer down every blind alley.
Joy aches like a blister…
Every step, every chance meeting, every pamphlet or letter or piece of writing, may raise the dollar that saves a life or spur a thought that leads to some treatment or get some person who thinks everything is fine to ask the niggling question a doctor needs to hear. Each day is an opportunity to push the walls of death back another micron and gain another bit of life for someone without other hope.
And sometimes I hear news that reduces me to joyous tears. You come, too.
Joy emerges in the strangest places–as does sorrow.
We are in the heart of fundraising season right now. Most organizations push for money during the winter holidays, but Walking with Jane doesn’t. We don’t like getting lost in the avalanche of mail that season delivers. We’d rather push from February to October when we have a clearer field to work with.
It makes me sad–and it makes me sick.
In that time period we do most of the walks and other events that fuel our efforts. I feel better about asking people for money when I can do something to feel we have earned it. By late November and December winter has closed in, bringing with it memories of Jane’s last days that are sometimes unendurable–and weather that is largely uncooperative.
Cancer never takes a break
I don’t stop thinking about raising money in those deep winter months, though. I can’t. Cancer never takes a break. It just keeps growing and spreading. The need to fund the research never ends either–especially when it comes to carcinoid/NETs. This is a disease that has been underfunded for decades.
We don’t like getting lost in the avalanche of mail…
Yesterday’s post about Dr. Robert Fine’s work on CAPTEM underlined that yet again for me. He first came up with the idea of that combination nine years ago. A year later, he gave it to his first patients. But we are really only hearing about it for the first time this year. So far, only 28 patients in entire carcinoid/NETs community have received the CAPTEM regimen.
Profit margins versus human profit
The central reason for that comes down to money–or rather the lack of it. Both Capecitibine and Temozolomide have been around long enough to become generic drugs. Drug companies see no profit in them–for all that patients might profit from them. Where a drug company sees no profit it sees no reason to spend research money that, used elsewhere, might bring a new–and more profitable–drug to market.
This is a disease that has been underfunded for decades.
It doesn’t help that Medicare and insurance companies view intravenous and oral drugs as different beasts in terms of reimbursement. If the drug needs to be injected, they will pay more than they will for a drug that is simply ingested–a lot more. Hospitals and clinics are trying to change that, but with only marginal success. The drugs are not cheap, for all that they are generic.
Money, money, money
And while charitable and government funding for carcinoid/NETs research is better than it was four years ago, it is still pretty pathetic. The promising Uppsala oncolytic virus–that was sitting in a freezer when Jane was diagnosed–finally found funding last fall for a Phase I test in Europe. But it only happened after a crowd-funding effort turned up one billionaire donor willing to pony up the funds to get it there.
The drugs are not cheap, for all that they are generic.
Federal money for all cancer research is drying up. Barely five percent of all cancer research proposals find government funding.There are just two federal grants extant for carcinoid/NETs. The sequester has cut both those grants the last two years.
Jane could still be here, if…
I look at all of this and know Jane would still be here if we cared as much about cancer as we do about war and tax breaks for the rich–if we cared as much about knowledge and research as we did about profits.
Federal money for all cancer research is drying up.
But we don’t. And the result is I can only see her and hear her in my memories. The closest I can come to touching her is to run my fingers over the stone that marks her grave.
Facing the past and the future
I know, too, that unless something changes, more people will die the same death she did–and more spouses will face what I do. So I walk, I sell this and that, I lobby, I figure out new ways to live frugally, I beg strangers and friends alike for money–hoping that the few dollars I raise or contribute will make a difference.
I can only see her and hear her in my memories.
Potential treatments should not languish in a freezer for four years. It shouldn’t take us nine years to get a promising treatment to people who need it. For all that yesterday’s post excited me as I researched and wrote about it, so much of the back-story filled me with rage and hurt. Here was a possible cure–and we never saw it, never heard of it, never had a chance to try it.
It makes me sad–and it makes me sick.
Money matters in the fight against all cancers–but it is especially missing from carcinoid/NETs. You can help change that.
The drug combination, referred to as CAPTEM, combines two generic oral drugs that have been used in treating other cancers.
‘I was shocked…’ –Robert Fine, MD
The normal response to chemotherapy in carcinoids, which make up about 55 percent of all neuroendocrine tumors is 0-4 percent. The CAPTEM combination resulted in a positive response in 95 percent of the 12 patients with carcinoid tumors: 45 percent saw a reduction in tumor size, while 52 percent saw stable disease as a result.
Effective for several forms, Fine says
Including three other forms of NETs, including pancreatic NETs–which makes up 35 percent of all diagnosed neuroendocrine cancers–the overall response rate showed 45 percent with tumors reduced in size and 50 percent with stable disease. The total number of patients in the study was 28.
…45 percent saw a reduction in tumor size…
But the most dramatic results were on pituitary NETs. The combination was tried on three end-stage patients, two of whom were on respirators. Two patients have complete remission under the regimen. The third saw a 75 percent reduction in tumor-size. One of those patients, who had been told he had six months to live is still alive eight years later. A fourth patient had stable disease for five years.
Low toxicity and mild side effects
Another good piece of news was the low toxicity and mild side effects of the treatment combination. Fine said there were, “No hospitalizations or treatment related deaths,” during the study.
…the most dramatic results were on pituitary NETs.
“The regimen was effective even in patients with tumors that hadn’t responded to any other standard treatment, including chemotherapy, high dose Octreotide, small molecule inhibitors, radiation or therapy,” Fine said.
Comparison with other therapies favorable
Octreotide, the current standard of care for treating NETs, reduces tumor size about
six percent of the time. It results in progression free disease 30-40 percent of the time.
No hospitalizations or treatment related deaths… –Fine
Sunitinib (Sutent), which is currently only approved for pancreatic NETs, results in tumor reduction about ten percent of the time and stable disease about 60 percent of the time. It is currently in trials for carcinoid tumors.
One drug helps the other
The CAPTEM regimen uses the two drugs sequentially over a 28 day period. The Capecitibine depletes thymidine stores in the cells. That improves the cell-killing ability of the Temozolomide.
Octreotide…reduces tumor size about six percent of the time.
While the study is not yet finished, so far carcinoid patients have experienced median Progression Free Survivor rate of over 31 months. That number is still growing as the study is not yet finished.
Challenges remain
Full exploitation of the drug combination faces two challenges. First, because the drugs are now generic, drug companies have little interest in funding trials. Second, because the drugs are oral, rather than intravenous, Medicare does not provide very good reimbursement–and some insurance companies provide none at all.
…the study is not yet finished…
Despite these two strikes against it, CAPTEM is now the subject of an Eastern Cooperative Oncology Group trial in patients with pancreatic NETs. That study is larger–though still small–and randomized.
Jane would likely have benefitted from the news Dr. Robert Fine delivered at the San Francisco conference last month. The drug combination was in the early part of its trial at the time of her diagnosis.
I have a deep-seated, secret fear when it comes to cancer. It is not that I will die of cancer–we all die of something. It is that, once we have solved the “major” cancers, people will walk away from funding cancer research and those unfortunate souls who have the “lesser” cancers–like carcinoid/NETS or thyroid cancer–will be left to twist in the wind.
Please join us in that fight.
Most people will think I am paranoid for even suggesting such a thing, but the thought has plagued me increasingly in recent months. I look at people refusing to have their children vaccinated against measles, rubella, polio, chicken pox–even whooping cough and shake my head in amazement. I watch the government making cuts to everything imaginable and I shake my head some more.
The cancer funding problem
It is less than six years since the federal government started funding research into NETs/carcinoid again after a 40 year hiatus. The two grants currently funded for
it, combined, amount to about $1 million–and have been cut every year. Search for spending by the American Cancer Society on carcinoid/NETs and you will find nothing on their website. I’m told they spend about $1 million a year on it.
…left to twist in the wind.
The vast majority of the money spent on NETs/carcinoid in the US is privately raised by NETs/carcinoid programs and foundations like Caring for Carcinoid, the Carcinoid Cancer Foundation, and tiny groups like Walking with Jane. What all of us combined raise and spend on the disease amounts to a rounding error on what we spend on breast cancer each year.
Cancer progress is not victory
The progress made on things like childhood leukemia and breast cancer in the last 30 years is mind-boggling. The number of long-term survivors in both groups is remarkable. We’ve had a breakthrough in the last three years on one form of lung cancer. There is good reason for hope and confidence.
…a rounding error on what we spend on breast cancer…
But the fight against cancer is a long way from finished, regardless of what all that good news might lead one to believe. While two-thirds of those who hear the word cancer in a diagnosis today will still be alive five years from now, one-third will still be dead. That will include nearly all those diagnosed with pancreatic cancer, triple negative breast cancer, and brain cancer.
Cancer fight far from over
Most NETs/carcinoid cancer patients who get that diagnosis will still be here five years from now–but only because their cancer is slow-growing. If nothing changes, they will still be tied to the toilet: their frequent diarrhea will have become more frequent, their bloated bellies and painful gas will still plague their every waking moment, and their waking moments will be longer and longer as insomnia claims more and more of their nights.
…one-third will still be dead.
Nationally, Relay For Life has a new slogan on its t-shirts this year: “Finish the Fight.” For me, at least, that statement infers the fight is nearly over in the mind of the American Cancer Society. We are in the middle of a war whose outcome very much remains in doubt. We have won some important battles and–perhaps–the tide is beginning to turn. But a single battle–or even a string of battles–does not always mean the war is won.
No time for over-confidence
Napoleon won many battles, but he ultimately lost the long war he was engaged in. Barring George Patton’s miraculous march during the Battle of the Bulge, the world we live in today might be considerably different. That’s one reason I keep walking for our Greater Fall River Relay for Life.
We have won some important battles…
Humanity’s long war against disease–of which the battle against cancer is but one small, but significant, part–is not over until the enemy is truly vanquished. We cannot accept a marginal or tactical victory over cancer any more than we accepted that level of victory over small pox. That means reducing every form of cancer to the level of a fairy tale or nursery rhyme we tell children to get them to behave.
Where the money really comes from
We need to finish the fight. But we need to understand, as well, that fight is far from over–and that the money for that fight largely comes from events like Relay For Life, the Pan Mass Challenge, the Marathon Walk and the thousand other walks, runs and events groups of every size use to raise the money to support the research.
We cannot accept a marginal or tactical victory over cancer…
Cancer has many faces. That’s why I encourage people to work with the many different groups engaged in that fight. We can never know where the next breakthrough will come from.
I have two names today I want you to hold in your heart and remember: Tom Hess and Gary Groce. Before this morning, they were no more than faces in a crowd for most people. They were not anyone important to anyone outside their immediate social sphere.
This is why I walk, why I write, why I organize…
I knew neither of these two men any more than most of you did. Even now, I can’t tell you if they were married, if they had children, where they lived, or even what work they did. I only know one thing about them: They died from the same “rare” form of cancer–carcinoid/NETs–that killed Jane.
Faces in a crowd of diseases and causes
Thirty-three people who know they have it die every day from NETs/carcinoid. That is more than the number of people who will die in drunk driving accidents today–and about the same number as will die of ALS, or Lou Gehrig’s disease. Everyone worries about drunk drivers and the deaths they cause; there are major foundations trumpeting the need to do something about ALS.
I only know one thing about them…
And those people are right: We do need to solve drunk driving and ALS.
Putting a human face on things
But carcinoid/NETs is barely a blip on the radar–an artifact–by comparison. MADD raises tens of millions of dollars every year to help pass laws against drunk driving and educate the public about its dangers. ALS groups do likewise. But most of the world knows nothing about NETs/carcinoid. Even many doctors have still never heard of it.
We do need to solve drunk driving and MLS.
After Jane died, I knew I wanted to change that. I wanted to put a human face on the disease. I wanted people to know not only what it was, but what it did in the most intimate way possible. Surely, I thought, no one can hear the story of Jane’s last months and not be moved to do something about this insidious disease.
Still faces in a crowd
Yesterday marked 39 months since Jane’s death. It also marks nearly three years since I began to work to educate people about this disease. During that time another 36,000 people have died of the cancer that took her life. Some were people who were well-known in the carcinoid/NETs community, though few were well-known outside it. Others died largely anonymous deaths–deaths unremarked outside the small circle of family and friends.
…carcinoid/NETs is barely a blip on the radar…
Tom Hess and Gary Groce died of NETs/carcinoid cancer today, along with 31 others. All 33 suffered in the same ways Jane suffered–the perpetual diarrhea, the constant pain, the endless search for a treatment that would do more than slow the disease down, maybe.
Thirty-three faces in a crowd that deserve more than that
But for the general population, the disease remains faceless–lost in a sea of breast cancer, lung cancer, colon cancer, prostate cancer, cervical cancer and the other cancers that people survive or die from.
Tom Hess and Gary Groce died of NETs/carcinoid cancer today…
NETs/carcinoid patients need to become more than faces in a crowd. I would like to treat those deaths the way PBS treats those of the men and women who die overseas in our nation’s wars: I want to put a name and a face to every one of those 33 currently faceless, nameless deaths.
More than faces in a crowd
Those deaths are not meaningless. Every one of those people had spouses, children, brothers, sisters, mothers, fathers, and friends who loved them and who miss them. They made a difference in the lives of those around them. And they have left a hole in those folks’ lives that can never be truly filled.
I want to put a name and a face to every one of those 33…
This is why I walk, why I write, why I organize–why I breathe: so that one day there will not be 33 holes in the lives of a new set of people every day as a result of this disease. Please help us stop carcinoid/NETs. Please help us find a cure.
It is easy for anything–or anyone–to get lost–to become just another one of the faces in a crowd. Those who fight NETs/carcinoid cannot afford to do that.
I hit bottom last month. It wasn’t pretty. Tonight, thirty-nine months after Jane’s death, I seem to have begun to recover from the agony that was mid-February. But I am very aware of how far I have to climb to begin to feel that I have a future beyond pain.
Thirty-nine months is a long time to live with silence.
There are several technical terms for what I am dealing with: prolonged grief, compassion fatigue, complicated grief… The words are a poor attempt at describing what I have faced over the last three years and three months–or the last three years and seven months, if you count the time between Jane’s diagnosis and her death–or four years and one month, if you want to start from the time things really started going south–when she was experiencing swollen feet and the beginnings of her heart problems.
Thirty-nine months–or more–on the point of the spear
There is nothing pretty about watching anyone die from cancer. It is exhausting for the patient. It is exhausting for the spouse. It is frustrating for the patient. It is frustrating for the spouse. You are both out on the point of a spear. There are people trying to help you both, but the two of you really feel alone out there. You feel alone because no one else you deal with intimately is losing their other half at that moment. It is a thing you do not understand until you have been there.
I watched my wife die. I held her hand.
And even when there is someone going through something similar close to hand, you are all caught up in the immediacy of your own issues. Death is a lonely place, whether you are the one dying or the one watching the death of the person you love most.
Thirty-nine months of second-guessing
Grief is also, more often than not, a lonely place. It is, in many ways, more lonely than walking the path of the dead with your loved one. the struggle toward death is something the two of you share. The surviving spouse faces a different kind of loneliness–a different kind of emptiness and pain. I’m not sure either is worse than the other–but there is a difference.
I didn’t want to write or clean or do anything about anything.
Logically, I know I did everything I could for Jane. Logically, I know letting her die when she did was the right thing to do–and that I chose the right time to let her go. But emotionally is an entirely different story. In 39 months, I have not been able to roll onto her side of the bed. It is only in the last two weeks that I have moved my wedding ring from my left hand to my right–and then for only a part of each day. And it takes a conscious effort of will to do so.
Thirty-nine months–and then a change
There are still times that hours vanish in wandering from room to room or staring at a wall or the ceiling. There are still moments when I see a crocus poking out of the ground and am reduced to tears. Those things are less frequent than they were, but they still happen. They still leave me bewildered.
Grief is also, more often than not, a lonely place.
But something has changed in recent days. The walls do not feel so close. The silences are not quite so unbearable. There is more hope in the tears to go with the still-present sorrow. Something has changed.
Thirty-nine months without hope
I had given up all hope of finding real love in my early 30s. I had stopped looking for it. And then, there was Jane. The weight of grief last month had pushed me down to the point I gave up hope of ever feeling anything else again. I didn’t want to get up. I didn’t want to write or clean or do anything about anything.
So I stopped doing anything for a week beyond embracing grief. Somewhere in that week I found something of myself again. I managed to forgive myself for my own sorrow and my own grief. I realized I had earned the right to grieve and that I was not going to get any better until I stopped feeling guilty about feeling so wretched. I earned the right to those feelings and needed to embrace them and what they meant.
Thirty-nine months of recovery
We talk in my grief group about how each of us got to the “death-do-us-part” part of the wedding vows. To get there requires a special kind of love–one that does not wilt under the first serious disagreement or the opening notes of the descent into death. The death of one in that kind of love is going to be painful for both the living partner and the dead one.
Death is a lonely place…
I watched my wife die. I held her hand. I helped her fight for as long as she could. And when it was time for her to die, I let her go as gently as I could–and with every honor I could give her. I did all that I could for her while she was alive–and do all that I can to kill the thing that killed her for everyone else.
Thirty-nine months of moving forward
I’m sure I will have dark days again–but I have a sense that the worst of the darkness and pain has drawn to a close. I can at least hope that is true.
I have a future beyond pain…
Thirty-nine months is a long time to live with silence. But even if I have to live through another 39 such months, I will survive them. I may need to close my eyes and rest from time-to-time, but I will endure. There is still work to do here.
Thirty-nine months ago, Jane died–and everything changed for me–and not for the better.
Change is in the nature of all things. It is the foundation of growth. When we stop growing, we begin to die. In order to keep living we have to continually evolve in positive ways.
Change is coming–and you can be a part of it.
This website has been sinking into dormancy. Walking with Jane has, for some months, seemed to stand still. The responsibility for both those things resides with me. My own journey through a particularly rough time in my grieving process is the root cause of what has and has not been going on here. All those issues, though, have been compounded by my seeming inability to get either this website or my fundraising efforts to gain sufficient, sustained traction.
The winter of my discontent
Last year, we generated, total, significantly less money than we did the year before despite our slightly improved performance at both Relay for Life and the Boston Marathon Jimmy Fund Walk. Even there, though, we fell well short of our goals for both events.
This website has been sinking into dormancy.
Our efforts at raising awareness through other efforts also fell well short of expectations. This website, in particular, was far less successful than I had hoped. Our site visits declined throughout the year despite every effort I made to generate more traffic–and gradually I subconsciously put less and less effort into the site, which only served to increase the downward spiral.
Underlying issues have not changed
None of these failures helped my already fragile state of mind. Losing Jane to carcinoid cancer is the signature moment of my life to this point. I’ve shared that grief in my writing, in two different grief groups, and with two individual therapists and an experimental program designed to prevent extended periods of mourning. None of those efforts have resolved the issues her death created–though all have helped me learn to cope with those issues. Nor has the work I have undertaken against the disease that killed her brought the solace I had hoped for.
Our site visits declined throughout the year…
But those of you who know me know I do not give up easily. And I am not giving up any piece of this fight. Rather, I have spent several days rethinking and retooling this effort in my head.
Website changes ahead
Part of that change begins with this website. Over the next week or so I will work on rethinking and redesigning this site so that it works better than it does now. Part of that change will be visual; part will be mechanical; but the most important change will be a renewed commitment to providing the best and most up-to-date information about NETs/carcinoid written/created for patients and lay care-people.
…I do not give up easily.
That retooling will include greater use of video where it seems appropriate, starting with the creation of a series on frequently asked questions. It will also include easy access to our soon-to-launch monthly NETs/carcinoid news program. The opening page will also change–and will likely include video, as well.
Some things won’t change
While I will work to make that happen as quickly as possible, the final execution of that plan may take several weeks before everything is in place. In the meantime, I will post here several times a week on a variety of subjects ranging from the latest news about research results and fundraising to the progress being made on other fronts in our battle against carcinoid/NETs.
Part of that change begins with this website.
And speaking of fundraising projects, we will shortly announce dates, places and times for a number of fundraisers this spring and summer. Our general fundraising and team building for the Greater Fall River Relay for Life and the Boston Marathon Jimmy Fund Walk are already underway. Please join us for either event or make a donation.
‘And you may contribute a verse…’
There are lots of other ways you can contribute to our efforts. We are always looking for health fairs we can set up booths at, groups we can speak to, and places we can get our merchandise on display, not to mention ideas for new and different fundraisers.
Please join us…
If there is one thing I have learned in the last several months, it is that one person may be able to make a difference, but they need help to do so. If you have thoughts or want to contact us about ways to make this operation work better, I’d love to hear from you.
Change is coming–and you can be a part of it.
Pax et lux,
Harry
We have faced many obstacles in the last year, but that does not mean we are giving up. It just means we need to change, evolve, and adapt.
When Relay for Life started back in 1985, Dr. Gordy Klatt said he was going to run for 24 hours because cancer never sleeps–so its opponents can’t afford to do so either. Relay has grown into a monster fundraising operation since then: it is the largest single fundraising campaign in the world and has spawned a cottage industry of walks and runs for various causes.
I will never fully heal from this loss.
Klatt ran by himself that first year. In the second year, people could run with him for a donation, but there was nothing Relay about his performance: he was still the only person who ran the entire time. Today’s event is a real Relay in the traditional sense of the word: almost no one walks the whole thing. Ideally, each team keeps someone on the track at all times, but most people only walk a small fraction of the total.
Walking with Jane and the ultra-marathon
Setting up and running Walking with Jane has been more like an ultra-marathon than a relay. I have had lots of support from lots of different people, but I have been the one person on the course at all times. And I have been that one person while trying to juggle both my political activities and work through the grief of losing Jane to a cancer very few people know about or care about.
Klatt ran by himself that first year.
About three weeks ago, I snapped. If you have followed my activities these last 40 months or so, you probably saw that coming. I did, too. It was harder and harder to get up in the morning, harder and harder to do the research, write these pieces, organize the series of events that had to be organized, talk to the people I needed to talk to. I was crying more 38 months after Jane’s death than I was in the days right after it happened.
A break in the ultra-marathon action
I needed a break. I needed some time where I didn’t have to think about cancer or Walking with Jane or Relay for Life or Dana-Farber or carcinoid patients. I needed some time to focus on what happened to Jane, what happened to me, what happened to us. I needed some time to lose myself in a movie or a book or a song without feeling guilty about it. And, perhaps most importantly, I needed time to cry until I was finished crying.
About three weeks ago, I snapped.
So I did that. I went out to listen to some music and closed a bar for the first time in 30 years. I didn’t drink much, but I let the music sink into my pores–and realized I was smiling for the first time in a long time about something other than how an event had gone or how many checks had arrived in the mail from our latest letter or what the latest research said. I watched movies and read books and went for walks because that was what I felt like doing.
An ultra-marathon of tears and memories
I thought about Jane’s last months, and I bawled my eyes out–cried them dry and then cried some more. And I thought–really for the first time in a long time–about the time before she was dying, about the time before her illness left us both tethered to this house or an outing with ready access to a bathroom. I remembered our wedding day and our honeymoon, the day we passed papers on our house–and all the tiny decisions that went into light fixtures and furniture and wall colorings. I remembered our first bike ride and our first date and just sitting together and talking.
…I needed time to cry until I was finished crying.
I faced my anger and my guilt and all the hurt of the last nearly 38 months and 22 days.
Forgiving myself
And finally, just this morning, I managed to forgive myself for all she went through in the last months of her life–and for failing to cure her disease and letting her die. She told me she forgave me for all those things long ago, but it took until this morning for me to forgive myself.
I remembered our first bike ride…
I will never fully heal from this loss. I know that. But I will keep working at it–just as I will keep working at this ultra-marathon I have begun. I knew from the start this was not a sprint and that it was to going to be easy. But I have been running it as though it were a mere marathon–a short 26.2 mile jaunt over hilly, but reasonable, terrain. It isn’t. It is the longest ultra-marathon ever conceived over insanely difficult terrain. There are going to be times I have to walk and other times I am going to have to find a place to lie down and rest for a bit.
I hope you’ll come by and run or walk a bit of it with me–or set up a rest area along the route periodically. This race is going to take a while–but there is a valuable prize at its end–the death of the thing that killed us.
Walking with Jane is engaged in a figurative ultra-marathon that could go on for years. Your help could mean everything.
The end of January and the month of February have taken a toll on my mind, body, and soul. As most of you know, I lost an old friend to breast cancer in late January. I have had a more difficult time with her death than I expected, but really it simply brought to a head some issues that have been building inside of me for some months.
The long and short of this is I need to take a few days for myself, so I am turning off the computer later
tonight and trying to think about things other than cancer and the needs of others for a few days. I sense that I can either take a week to focus on my own issues now or face a much longer break later I will have less control over.
I realized yesterday that I have not stopped moving since Jane’s bout with the H1N1 flu in October and November of 2009–over four years ago. It is four years ago this month that we first knew there was something not right with her health that was more than slow recovery from that bout with the flu, though we both hoped otherwise.
I am not sure what the result of this sabbatical will be. I need to spend some time thinking about priorities and what they mean to me–and where I can be doing the most good for the greatest number. Rest assured, this site will continue to be an important part of my work. Carcinoid/NETs is going down. Period.
