NET cancer makes me crazy

There are days lately when I want to give up on NET cancer. I have become obsessed with NET cancer in ways that are not healthy for me in the long-term. And I know that if I were wise I would walk away from my ongoing search for a cure for NET cancer–at least for a little while.

The needs of the many…

I got a call this weekend from an old friend who told me some folks are becoming concerned about me–that my ongoing battle to find funding for NET cancer and an answer to this disease has infected every aspect of my life–that it seems to be nearly all I do, all I think about, all I talk about.

And it is all true. And worse than true. I am flirting with burn-out. Yet the obsession remains. While Jane is the first thing I think about in the morning and the last thing I think about at night, NET cancer is the second thing I think about when I wake up and the next to the last thing I do before I sleep.

NET cancer finances

None of this is helped by the 10,000 frustrations this work is heir to. From mid-August through early September I raised close to $4000. The Caring for Carcinoid Walking with Jane team raised a total of over $18,000 through the Jimmy Fund Marathon Walk for NET cancer research.

…now I confront the Cancer Moon Shot…

From a sane perspective, that is a huge amount of money. But the fight against NET cancer is anything but sane. The week before the Walk the news broke about a possible cure for NET cancer–a cure, when it is all said and done will likely require more than $10,000 to get approved in the US and in Europe–if it works. That cure sits in a freezer in Sweden because the money does not exist to fund even the Phase I trial. At $1.6 million that trial dwarfs the money we have raised so far.

NET cancer information

Every day, I scour the Internet looking for new information about NET cancer. Most days, there is nothing really new out there–and when there is, it is often on a site that wants $35 or so to access the paper for a single day. The abstract gives tantalizing bits that hint at something important but the fruit hangs just out of reach–or worse, is written in jargon so dense that I wonder if even another doctor can make sense of what is there.

…the fruit hangs just out of reach…

I try to post something new here every day. I write these notes to a dwindling audience. I craft them so they will not only be easy to read but also to follow the directives about Search Engine Optimization. Once a week I do Google, Yahoo, Ask, and Bing searches on NET cancer. Our ranking never improves. We are always 5-10 pages deep.

Those the search engines do deliver to our site show up from search terms I do not see connections to. Nor can I figure out why those terms place us so early. None of it makes much sense–and all of it only further frustrates me.

NET cancer and the Moon Shot

And now I confront the Cancer Moon Shot. The plan is to really go after cures for the major cancers: breast cancer, lung cancer, colon cancer, prostate cancer… NET cancer does not make the list. I worry that initiative will suck up even the paltry private resources aimed at NET cancer now.

None of this is helped by the 10,000 frustrations…

And the federal budget is going to be trimmed–not that we get much there.

NET cancer and me

Meanwhile, an old friend faces the final days of his struggle with brain cancer while a neighbor  begins his own struggle with that form of the disease. Another neighbor fights kidney cancer, another, bladder cancer. Former students face their own and their parents’ and children’s battles with the disease.

I am flirting with burn-out.

So I can’t walk away from any of it.

And I need to walk away from all of it.

But I won’t. “The needs of the many,” to quote Mr. Spock, “outweigh the needs of the few–or the one.”

My weekend in Springfield

I thought I was putting NET cancer on the back burner this weekend while I was at the New England American Cancer Society Leadership Summit in Springfield–and to an extent, I did just that. This year’s conference was much better than last year’s. The speakers were better, the sessions were better, and the atmosphere was better. I learned a lot and got re-energized for this year’s Relay for Life campaign.

It is not that we lack ideas…

But NET cancer is never far from the front burner no matter how hard I push it off to one side. And with the news of the Swedish virus still echoing in my mind, I knew there was some networking I needed to do.

Springfield and NET cancer

As it turned out, the networking found me–and found me fairly quickly. A number of people suggested I need to toss the funding needs of the Swedish NET cancer project up the chain of command to Otis Brawley, who is the ACS’ chief medical officer, and the head of research for the ACS to see if we can’t get them interested in helping out. I’ll be doing exactly that later this week.

They have a huge goal…

I’ll also be pushing that issue next month when I meet with the Visiting Committee for Gastrointestinal Cancers at Dana-Farber. Many of the other members of the committee have far deeper pockets than I can ever pretend to–and I hope I can interest some of them in helping put together the funding for that NET cancer virus project.

Relaying Big

Still, the real reason for my trip to Springfield was to start the planning process for the 2013 Relay for Life of Greater Fall River. The national theme this year is “Dream Big, Hope Big, Relay Big” and the national level is certainly trying to do the first two in hopes of bringing about the third.

We are learning enormous amounts…

Last year was disappointing on the national, regional, and local levels for most Relays. Nationally, both in terms of participants and money raised, Relay took a significant step backwards. New England Relays also took a hit in those two areas, though on a significantly smaller scale. Locally, we had more participants on teams and looked on track to meet our financial goals, but then the heat and the rains arrived and stalled that piece of things.

Our loss, however, was New Bedford’s gain as their event garnered enough money to rise to second place in New England.

Stopping the slide

Nationally, ACS wants to see the participation slide stop and go in the opposite direction. The New England program agrees with them and has launched a “Thirteen in 2013 Challenge.” The idea is to average 13 members per team this year–which would be up from the 11 of 2012. There is a contest set up to encourage people to do that.

…the networking found me…

But there is a more important challenge than money or participants. Currently, ACS says the research of the last 50 years is resulting in 300 lives saved from premature death at the hands of cancer per day. They have a huge goal there: they want to make that number 1000 lives saved a day.

Ideas versus resources

Reaching that goal will take a substantial effort on several fronts–but the possibility really is there. We are learning enormous amounts about cancer every day. Last night I saw a story on the “Cancer Atlas,” an attempt to get all the knowledge we have available to doctors and researchers everywhere. We are working on the cancer genome–and once that is thoroughly unravelled we will have new ways of attacking cancer that we did not have before.

NET cancer is never far from the front burner…

It is not that we lack ideas–it is that we lack the resources to exploit those ideas.

To that end, while my personal focus will remain on NET cancer, I will continue to do all I can to increase the resources for all cancers. Whether I like it or not, I continue to be surrounded by cancer–and not all of them are NET cancers.

Dream Big, Hope Big, Relay Big

Relay for Life‘s national theme this year is “Dream Big, Hope Big, Relay Big, Why Not” and there is no one with bigger dreams or greater hopes this year than those of us fighting NET cancer.

It won’t be quick and it won’t be easy.

Our dreams are big because of a virus locked up in a freezer in Sweden. Our dreams are big because we finally have lines of carcinoid cells growing in vitro. Our dreams are big because we are on the verge of proving an animal model. Our dreams are big because we have begun processing the DNA of the 1000 NET cancer patient blood samples we have in hand  and can soon hope to have the genome unravelled. And that will mean we will finally have the knowledge we need to begin really targeting this thing.

Dinner with NET cancer

I had dinner tonight with a woman who has just finished writing a book on the frustrations of diagnosing cancer. She had never heard of NET cancer before but she understood the madness of a cancer that does not play by the same rules as the rest of its siblings. She works with ACS CAN, the lobbying branch of the American Cancer Society. When we talked about the money issues  those of us dealing with NET cancer have to deal with she understood with the knowledge that comes only from trying to scare up money for what sometimes seems impossible causes.

I am not holding my breath.

But we all have to remember where things were 99 years ago when the precursor of the ACS was just getting started. In those days a cancer diagnosis was nearly always a death sentence–and a cure for any cancer had all the makings of a fairy tale. As recently as the 1980s childhood leukemia killed four out of five victims. Today nine out of ten childhood leukemia patients can look forward to normal lifetimes.

Funding the NET cancer eater

Those fighting the NET cancer battle still face huge obstacles before we reach that level of success. Even if we started a Phase I trial of the virus in that Swede’s freezer tomorrow–and it fulfilled its promise perfectly–it would still be ten years before it was fully approved for patient use outside of trials. We don’t currently have the money to start even the European trial.

…a cancer diagnosis was nearly always a death sentence

Several groups are trying to jump-start that process through the Oncolytic Virus Fund. We are all hoping someone with truly deep pockets will step up and buy the naming rights to the virus by ponying up the money to fund the trials. I am not holding my breath.

NET cancer’s long road to a cure

Personally, I suspect we will have to go at this a few dollars at a time. There will not be government money for this. There will not be drug company money for this. There will only be donations from private citizens. Most of them will know someone who either has NET cancer or has died of it. They will donate what they can and–eventually–we will have enough money to fund those first trials.

Our dreams are big…

And if we are fortunate, those initial human experiments will be successful. Then we will set about coming up with the money for the Phase II trials. And if those meet with success we will work to find the money for the Phase III efforts.

It won’t be quick and it won’t be easy.

The battle against NET cancer never has been.

The loneliness of the NET cancer caregiver

Someone said to me today that while my work on NET cancer no doubt keeps me busy that I must also feel awfully lonely part of the time. I shrugged it off. It is what I do. How I feel does not matter to me very much most of the time. And I sublimate the loneliness into the work that needs to be done so that others do not feel what I feel when I let myself.

NET cancer dies twice in this story…

The truth is I am lonely most of the time. It has nothing to do with whether I am with people or not. I am truly most lonely when I am in a room crowded with friends. While Jane and I always appeared to function independently of each other–and often did–there was always a psychic connection between us. Even divided by a hundred miles we were somehow aware of each other’s existence and love.

The amputation

The severing of that link on the day of her death was the equivalent of an amputation; suddenly there was no echoing heartbeat–half my lung capacity vanished. My ability to hear and process sound was halved, food lost both its smell and its flavor.Only half my fingers have feeling. None of that is literally true–I say it merely to try to create an  image of what life is like when the person who truly is your other half is no longer there.

I can’t listen to James Taylor…

In the company of others I am too often reminded of what we had–and what I no longer have. There are moments–more of them the last two weeks or so–the silence where she once was is too great to stand. Those are the dangerous times–the times when I would like to curl up into a bottle and pickle myself in a sheen of alcoholic incoherence. I try, instead, to lose myself in reading and writing and in tasks that require just enough thought to distract my mind. I watch a movie or put in a CD I know enough to sing along to–but not one we shared a love of.

NET cancer kills other joys

I can’t listen to James Taylor–especially not “You’ve got a friend.” Jane listened to and sang his songs every day in the hospital–that one most often. It turned up on the radio one day last week–a duet with Carol King–and I was glad I was 100 yards from the driveway. More than that and the tears would have put me in close contact with a telephone pole or some other obstruction.

Those are the dangerous times…

Kenny Rogers’ “The Gambler,” especially the chorus, was what she sang before she lost herself in each coma: “You gotta know when to hold ’em, know when to fold ’em, know when to walk away, know when to run…” It leaps into my mind unbidden at any moment of the day or night–and there I am, locked into those final brutal hours, holding off my own pain so she could slip away without guilt–being strong when all I wanted to do was melt into death with her.

My unfinished business with NET cancer

But my work was not finished here. The fight against NET cancer was her shroud and the fight against NET cancer is the cloak I wear in my mourning. Like the old widows who wear black from the day their husbands die to the day of their own deaths, so do I wear NET cancer.

The truth is I am lonely most of the time.

It makes me poor company at all times–but particularly so in the waning months of the year. Then I relive each day of our struggle. And while I marvel at and admire her strength, I also know how the story ends. There is joy there, of a kind–and heroism.

But there is also this long and awful silence her absence creates.

NET cancer dies twice in this story–once through her death and once through what her death inspires. But even the final victory will not bring her back–nor end this silence.

What would you do?

I’ve written close to 300 pieces on NET cancer and what happened to Jane and me as a result of our too close encounter with it. The last two weeks I have had trouble coming up with things to write about I have not talked about before. To be honest, I have had trouble writing about NET cancer period for the last several weeks.

Wisdom is learning from the experiences of others.

It is not just that I am having trouble with subject matter–it is that I am having trouble with the entire subject. My emotions are wrung out. I find myself slipping back into the memories of two years ago–and they are not pretty memories. I lose myself in books and magazines and politics–anything that will take my mind away from these draining images of Jane’s last months–of our last months.

For three days now I have tried to do basic cleaning chores. I have managed to pick up the living room in that time. I look at the computer, pick up a magazine or a book, intending to read just one article or chapter, check my email–I look up and hours have passed–and I have nothing done. Or nearly nothing.

Time gets away from me

I come into WordPress to write my daily NET cancer piece. I stare at the blank screen. I start to write. My internal voice says, “You know you’ve written about this before.” I erase everything as I realize I have nothing new to say about that aspect of the disease. Our knowledge of NET cancer grows steadily but there is often nothing new or meaningful to share–at least nothing that will fill the 500 words I assign myself every day.

I hate cancer.

And always–at the edge of vision–I see Jane. I see where we were today. I know that tomorrow would be a Dana-Farber Day–a day consumed on either end with traffic and filled with waiting rooms and labs and hope and despair. I know that tonight we would try to watch some television to try to take our minds away from the gruesomeness that would be tomorrow.

NET cancer and the Bard

“And tomorrow and tomorrow and tomorrow creeps on at its petty pace from day to day to the last syllable of recorded time…”

Only Shakespeare’s canon has the strength to say what passes through my mind–then and now. I stand–and stood–“like Patience on a monument smiling at grief.”

And always–at the edge of vision–I see Jane.

A guy I used to teach with came home from Boston to die last week. He is not yet gone–his body has some weeks left. But I can see him–as I still see Jane–in my mind’s eye. I hate cancer. I hate what it does to the mind, to the body, to the soul. I hate the way it feels to look a someone and know there is nothing I can do to help. I hate what it does to the family and the spouse.

NET cancer killed the us

Oh, sure, I can raise money–and I do. But Jane is beyond the help of all my fundraising efforts–as is my old friend and sparring partner. Death sunders friendships–and what it does to lovers cannot even begin to be described.

My emotions are wrung out.

Intelligence, they say, is learning from your own experiences. Wisdom is learning from the experiences of others. But this emptiness is not something I can share in any meaningful way, save this: to let it drive me to help find cures for all this pain so others do not experience it.

So I work to kill NET cancer–and all the other cancers out there. It is a foolish quest–one far beyond my strength–but one I must try no matter how quixotic logic says it is.

But I will find a way to kill NET cancer.

Cancer’s resources problem

I have said on a number of occasions that lack of resources is one of our biggest NET cancer problems.

Yesterday, I came across a tweet or a post somewhere that said, our problem with cancer is not a lack of ideas, but rather a lack of resources.

It is…not something I can say no to.

That statement gives me pause. I have certainly detailed the money problems of NET cancer here often enough. Our financial difficulties have held Americans back from exploring PRRT and currently hold all of us back from testing the new viral therapy I have written about over the last two weeks.

Some cancer history

Once upon a time the cancer community was starved for both ideas and resources. In the 1930s and ’40s there was little anyone could do for leukemia patients beyond make them comfortable as they waited for death. Sydney Farber, one of the key players in the modern history of chemo-therapy, was not a surgeon or oncologist; he was a pathologist who had tired of doing autopsies on children stricken with leukemia.

When the rich catch a cold, the poor catch pneumonia.

He had an idea about using cytotoxic chemicals on children in the hope he could prolong their lives–or even cure them. His financial resources were slender–and he had to get parents to submit their children to a painful therapy with no promise of success.

Later, Farber worked with the nascent American Cancer Society to create greater financial resources through both private giving and government help. Eventually this culminated in the War on Cancer.

Killing the War on Cancer

Unfortunately, the real War in Vietnam and

the necessities of the Cold War intervened. War requires an all-out effort–and one cannot fight too many wars at one time with great hope of success. The War on Cancer died in all but name shortly after it was conceived.

Financial resources for cancer research have been in short supply ever since. And that shortage has resulted in a shortage of doctors and researchers at all levels of cancer research. It has resulted in a shortage of facilities and equipment as well.

…a pathologist who had tired of doing autopsies on children…

And when there are shortages priorities have to be set. One hopes those priorities are set on the basis of the most good for the greatest number, but politics and perceived rather than actual need also play a role. Governments have to concern themselves with public relations aspects that we would prefer were not part of the thinking process. But the public wants constant evidence of progress. The result is a reluctance on the part of governments to pursue anything other than low-hanging fruit–things that are clearly destined for success.

Defrosting NET cancer

And charities follow the government lead. If the government does not think your particular cancer is important, neither will those of a charitable mind.

If breast cancer, prostate cancer, and lung cancer are hurting for resources, how much more so is NET cancer? And with major cuts coming to the federal budget whether we will or no, how much smaller will the resources be for the major cancers a year from now?

That statement gives me pause.

When the rich catch a cold, the poor catch pneumonia. In the case of NET cancer, we already have pneumonia. Do we go back in the deep freeze we were in after 1968? And if that proves true, will that virus in Sweden ever be defrosted?

I got a note this weekend from ACS CAN, the lobbying arm of the American Cancer Society asking me to help man their table at the ACS Leadership Summit this week. It is, under the circumstances, not something I can say no to.

NET cancer fight never ends

No sooner does one Net cancer campaign wind down than the next begins. My attention has begun to shift from the Marathon Walk to a new set of priorities.

We quietly began our Walking with Jane 2013 Relay for Life campaign this weekend with a table at a massive community yard sale at one of our captain’s homes this weekend. Over the course of two days we raised over $400 while handing out information on NET cancer and selling Walking with Jane-themed items.

…if you can find a way to help, please do.

Our blue zebra striped NET cancer ribbons were a huge success as were the bead bracelets originally created for the College Relay at Bridgewater State University this spring. Many thanks to the entire Atkinson family for hosting and manning the tables. Both their children have hatched plans for NET cancer fundraisers in their schools that they are currently pursuing.

And many thanks to Remi and Dan who assembled the NET cancer bracelets and the ribbons beforehand.

Relay ready

We will also be at a Westport craft fair in November–and anywhere else we can find to get the word out about NET cancer and raise some money.

I also registered our Relay for Life of Greater Fall River team this weekend. This will be our third year at that event–an event I have been asked to co-chair again this year. That will, again, put a bit more pressure on my co-captains as I now know how much commitment of time and energy the leadership position requires. And I have some plans for this year that I hope will help us reach the goals the rains wiped out in June by eclipsing those numbers before the walking begins.

We will also be at a Westport craft fair in November…

If you want to join our team–or renew your membership–doing so should be pretty easy following the links above. I hope that tomorrow I will finish the set-up on the contributions page for a direct link from there.

More NET cancer events

Meanwhile, I have to begin planning for NET Cancer Awareness Day on November 10 and our end-of-the-year campaign for the Walking with Jane Dybowski Fund at Dana-Farber. We are looking at lots of projects over the next several months for these events as well.

 Many thanks to the entire Atkinson family…

There is much to do–and if you can find a way to help, please do.

A non-NET cancer plug

But last night I took a night for recreation. I went to Trinity Rep’s new production of King Lear. It was amazing–and left me completely wrung out and emotionally unfit for much of anything most of today. I’m still shaking and on the edge of tears. If you are anywhere close to Providence, RI in the next couple of months you owe it to yourself to go see this play.

I have not cried for anything that was not relatable to Jane’s death in over 21 months but by the end of this play the tears were running down my face. It is that good.

The production will move to Houston early next year.

Money, money, money…

The financial side of NET cancer has been much in my mind the last couple of weeks. It began with the revelation that a potential cure is languishing in a freezer in Sweden because we do not have the money to move it into even a Phase I trial. It continued as I toted up the final figures for the Jimmy Fund Marathon Walk Campaign we put together with Caring for Carcinoid.

…where there are no patents there are no profits…

The effort required to raise even $10,000 from small donors is enormous. The Relay for Life of Greater Fall River raised $277,000 last year–a lot more than the $10,700 I raised for the Marathon Walk. But significantly more than 1000 people were directly involved in that effort. And they have the backing of the American Cancer Society.

The importance of small donors

It isn’t that small donors are not important, however. The $5, $10, and $25 donations do add up to substantial money when they are all taken together. The Jimmy Fund Marathon Walk last weekend raised several million dollars before it was all said and done. The Pan Mass Challenge raised tens of millions. Both build those millions out of tens of thousands of small donations.

But prospecting for donors with deep pockets is an equally arduous task…

And that money does not come with major restrictions on it. That means it can be used to do the kinds of research neither drug companies nor governments will fund. Creating an animal model for NET cancer–or any disease–for example, is the kind of necessary pure research that has to be done–but that neither government nor private enterprise will fund.

Those small, unrestricted donations can also attract matching funds from larger foundations and non-profits that need evidence that there is an interest among the general public in a specific disease. Our Walking with Jane Dybowski Fund helps attract more money to NET cancer research at Dana-Farber because it demonstrates a significant number of people have an interest in the disease.

Small fish attract big fish

Seed money matters just as much as seed corn matters to a farmer. It is a way to grow resources far beyond the initial contribution. Last year in one case, for example, $5000 in small donations generated an additional $10,000 for NET cancer in matching funds from a major donor.

But prospecting for donors with deep pockets is an equally arduous task–and one I think I am going to have to learn how to do sooner rather than later.

It isn’t that small donors are not important…

Which brought me this morning to something I first heard about a few years ago: venture philanthropy. Venture philanthropy is like venture capitalism but applied to charitable purposes instead. These groups try to build charitable ideas and institutions that can become self-sustaining. They bring not only their money to the table, but their expertise as well.

A drug company for orphans

There are a lot of diseases like NET cancer out there where there are too few patients to make full-time drug development worthwhile. Or the drugs, once developed, can’t be patented–and where there are no patents there are no profits to justify the expenditures.

The effort required to raise even $10,000…is enormous.

But if we developed a pharmaceutical company that was worried only about cures and not about profits–that plowed whatever profits it made into new drugs and drug trials rather than into the pockets of shareholders–then drugs like the Swedish virus would have a place to go to be tested and produced.

Such a company would never make anyone rich–but it could make a lot of underserved people healthy.

Including NET cancer patients.

Walking to a cure

In pursuit of a cure for NET cancer I walked 26.2 miles Sunday. In pursuit of that cure–and powered

by people supporting that walk–I raised over $6000 in the preceding 30 days by writing letters and stuffing envelopes. As of this morning, all my efforts had brought in $10,700.

This morning I read about a new Phase I trial run at the Dana-Farber Cancer Institute by Dr. Jennifer Chan. It looked at the feasibility of combining everolimus–one of two new drugs approved for NET cancer last year–with pasireotide–a new drug that blocks more receptors than octreotide. The trial was successful to the extent that it demonstrated people could tolerate both drugs simultaneously without negative reactions and that most of the small group of patients had tumor reduction and reduction of symptoms.

I’m not giving up.

The study conclusion was essentially that a Phase II trial makes sense.

I won’t be surprised if the Phase II trial works out as well–and that the end result will be that we will have a new drug combination that works better at slowing the progression of the disease than what we have now.

Getting beyond treating NET cancer symptoms

But it is equally clear that this will not be a cure for NET cancer. It will help with the symptoms, it will slow it down, but it will not stop the tumors from growing and spreading.

Last week I wrote about a potential cure for NET cancer that is sitting in a freezer in Sweden. I now know the group in Sweden is reputable and that the person in charge is among the leaders in NET cancer research in Europe. And I am also fairly certain that there will be a Phase III trial based on Dr. Chan’s research long before we get a Phase I trial of the Swedish virus–barring someone with deep pockets stepping into the fray.

…it is a 7-10 year process from the time we start.

The problem is not that there are not doctors and scientists to test the virus. They would if they could in a heartbeat. The problem is one of money. A Phase I trial will cost $1.6 million. The virus cannot be patented, so no pharmaceutical company is willing to pony up the cash for the trial because they will not be able to turn a profit on it. The government of Sweden does not pay for Phase I trials–no government does: Phase I trials are too speculative. Only a small percentage of drugs that work in animal models turn out to work well enough in humans to be worthwhile.

The NET cancer mountain

I worked 8-12 hours every day this summer on raising money for NET cancer research. I wrote to everyone I knew. If I could duplicate the last 30 days every day for a year I would raise $72,000. That is a far cry from $1.6 million. And that is just the cost of one Phase I trial in Europe. My understanding is the FDA would require another Phase I trial in the US as part of its approval process.

Then we would need money for Phase II and Phase III trials. And then we would have to find a drug company to manufacture the virus in quantity once the thing had FDA approval.

The problem is one of money.

Just in terms of time, it is a 7-10 year process from the time we start.

And every year will be a scramble to find the money to keep the research going–assuming the first trial works at all: that the virus doesn’t turn out to have awesomely bad side-effects and that it works well enough to actually kill the tumors.

Time to start climb

I’m not giving up. Last year at this point we had raised less than $7000 for NET cancer research–and just over $11,000 total. We’ve raised double that amount so far this year.

I won’t be surprised if the Phase II trial works out…

That gives me hope. People thought that was a stretch when I said it a year ago. It hasn’t been easy, but we’ve gotten there.

And we’ll get to the next set of goals as well. We just have to keep thinking further and further outside the box.

We can kill NET cancer.

NET cancer and exhaustion

I’m sorry. I could not write about NET cancer–or much of anything else–yesterday. I had good intentions but things combined to take me down.

I guess that means she’s happy about what I am doing.

I woke up early yesterday. I was in a hotel room. I had a pretty good idea how tired I would be after Sunday’s Marathon Walk and had arranged not to have to drive any further than the eight miles from the parking lot in Hopkinton to the hotel. I fell asleep by 8:45 p.m.

Visits

I drove back to Fall River. On the way I picked up some flowers. Yesterday was the 21-month anniversary of Jane’s death from NET cancer. I stopped at the cemetery to visit her grave.

I left both the flowers and my captain’s cap there. I added three small stones–one for her, one for me, one for us–to the pile I build there until some cemetery worker sweeps them aside. I talked to her a bit–felt the tears well up as they always do on the tenth of the month.

And suddenly it was 8:15.

I visited briefly with my in-laws and then with my neighbor. He has just been told he has a tumor in his brain. I knew he was going to get the biopsy results that afternoon. This morning I learned the tumor is–in fact–malignant.

I also learned that one of my former

students lost her grandfather to cancer this weekend while I was pounding out the miles for the Jimmy Fund Walk.

Home at last

I hobbled up the stairs, unpacked my suitcase and started the laundry. My shirts were still wet from the day before.

Jane haunted my day–the effect multiplied by the exhaustion of two fitful nights’ sleep and the 26.2 miles of the Boston Marathon route.

They asked for my last name.

And my memories of Sunday haunted me as well. I walked 23.2 miles largely alone with my own thoughts. This year they were less about Jane’s final days in the hospital and more about our lives before the cancer–and my life since her death. And when the walk was done there were two surprises waiting for me.

NET cancer surprise #1

About three miles out from the finish I got a call from the group who had started at the halfway point. They wanted to meet me at the finish line and wanted to know how far out I was and when I might get there. They cheered me across the line and I screamed “Victory” again, then recited the haiku I had composed in my head. I talked to them for a bit, recited the haiku to them, and encouraged them to come back again next year.

I woke up early yesterday. I was in a hotel room.

By that point I was desperate for something that looked like real food as opposed to Gatorade and energy bars. And I wanted to put that haiku on the Memory Wall. After hugging and shaking hands with the rest of the team, I went off to take care of those things, then stopped by the information tent to find out a couple of things.

NET cancer surprise #2

They asked for my last name. When I gave it to them they said something to the effect of–“Oh, you’re Harry!” It turns out everyone in the Development Office knows about Walking with Jane, about Jane and who she was and who she is…and me and what I am trying to do.

…one for her, one for me, one for us…

Caught up in the daily writing and researching and bookkeeping etc., that all this entails I failed to realize that we have also built a considerable reputation in the cancer community far beyond what I would expect us to have at this point.

And suddenly it was 8:15. And my eyes were closing.

NET cancer surprise #3

I slept soundly last night and at 6:30–an hour earlier than usual–I was awake. I got up and walked down the hall as the sun was peaking through the trees across the street. The light was golden–like the light in the church on the day of our wedding–and it was striking a photograph of Jane and me outside the church with Champagne glasses in our hands.

Yesterday was the 21-month anniversary of Jane’s death…

And I thought, “I guess that means she’s happy about what I am doing.”

NET cancer, you are really in trouble now.