I am constantly amazed by how hard all this is.

My niece is entering her third year of medical school. Monday, she had to move from Boston to Springfield to begin her hospital rotations. She asked me for advice earlier in the spring about what kind of used cars she should look at since she would need one to get back and forth to the hospitals she would be working in when public transportation was not running. Jane’s car was sitting in the garage and it seemed silly to me that a perfectly good vehicle was sitting there getting absolutely no use, so I offered my niece the car.

After we finished moving her on Monday, she came back to the house with me so she could spend Tuesday dealing with the registry, the insurance company, and getting the car inspected and the oil changed. Finally, all that was done and it was time for her to go–and for me to get to my next meeting. I left her at the gas station and started up the hill. As I did, I looked back at the little white Saturn. My eyes filled with tears and I had to pull off the road for a few minutes to recover my self. Another part of Jane was leaving my life to live somewhere else.

“You’ve given it a good home,” the voice in my head told me. “It will be well-used and not lonely any more.”

And I know all that. It was the right decision–just as letting Jane’s body go was the right decision 17 months ago–and just as, eventually, emptying the closets and the drawers and sending her clothing to Goodwill and the Salvation Army will be the right decision when I can bring myself to face those tasks.

But none of it will be emotionally easy.  Part of me wants to do the “rip-off-the-Band-Aid” approach. But the wound remains greater than the Band-Aid metaphor can cover. There are stitches and staples and gauze bandage wraps still involved here. Another piece of the wound has healed. The car was the latest in the ongoing prosthetics I have been able to give up and move on from. Next is the empty space in the garage her car filled until yesterday. Or maybe it will prove to be something else.

All I know is, I keep trying to move forward every day. Every day, I try to take another step against the disease that killed her. Every day, I try to learn one more new thing. Every day, I try to help one more person. Every day, I try to do the work we might have done together.

I know that if I spent every day waiting for death, I would not be true to who we were or who I am. Together, we lived life every day–sucking the juice from every experience–no matter how good or bad or bitter or sweet. It were a profanation of all we were for me to stop doing that now.

There is nothing insane about what I am doing if you live inside my head. There is nothing crazy about what I am doing if you have been where I have been and where I am.

It begins with knowing the needs of the many usually–though not always–outweigh the needs of the few or the one. It begins with the a belief in the gradual perfection of the human soul–with the belief that its is more important to see the humanity in figures like Christ and Buddha than the deity or the mythos–that it is more important to emulate them than to follow them.

Those things, though, are only the raw materials that the fires of life use to forge a human spirit.

Here is the fire: for eight months I consciously watched my wife wither and die. She was sick when I first met her with the disease that would kill her–but neither of us knew that. We both knew she had awful attacks of painful gas that no pill could touch and no doctor could suggest an answer to beyond it was all in her head. We both knew she had frequent bouts of insomnia–but believed–as her doctors believed–that stress was the base cause.

And then her legs began to swell–and we knew that was not because of stress and not because there was something in her head. Then she found the lumps in her liver–and the doctor told her it was probably cancer–but we would not know for sure until after the biopsy. And then we knew–and we knew it was a cancer even most oncologists had only read about. And then we learned it was destroying the valves in the right side of her heart. And her diarrhea was becoming more frequent and harder to control.

I watched her world shrink. I remember vividly the last time she drove her car. I remember vividly worrying about whether she could climb the stairs to from the garage–and very vividly the day she finally could not–the day I had to lift her up one stair at a time because she would not let me carry her.

I remember vividly the day of her heart operation and how it stretched from four hours to six to eight to ten–and the sight of her punctured everywhere by tubes and wires and hoses when they finally let me in to see her.

And I remember the diarrhea and helping the nurses change her bed-clothes and the madness and the comas and the delirium.

And I remember kissing her good night for one final time as she drifted back into the coma she would never emerge from.

I want the day to come when no one goes through what she went through.

I have pledged my life, my fortune, and my sacred honor to the task of killing this cancer.

Please help me make that real.

There was also good news at Saturday’s Dana-Farber Leadership Summit. In fact, there has been a lot of good news lately. But we need to keep the momentum going.

Start with the fact the most common form of childhood leukemia–a disease that just 35 years ago killed five out of every six children who got it–now has a 90 percent cure rate. There are still problems: the long term side effects of those massive doses of toxic chemicals can be nasty. And 10 percent still don’t make it at all–but those problems are being worked on and real progress is being made in both areas.

The new Profile  Program is part of that–and part of the progress on a number of cancers. Every new patient at Dana-Farber gets a genetic profile of the cancer they have done right at the start. What is learned from that then guides all the treatment decisions about that patient. Specific drugs target the specific genetic mutations that are driving that cancer. This results in fewer toxins going into the body–which means fewer side effects in both the short and long terms.

When I worked in a lab 40 years ago, we had to sacrifice lab animals to see what was going on with them. That doesn’t have to happen any more. Dana-Farber has developed new imaging technologies that make it possible to do CT scans and the like on animals as small as mice. Now we can track the effect of a new drug or radiation regimen without killing the creature serving as the model.

They have also finally found an animal model for neuroblastoma–the brain cancer that children develop and for which there really is not much hope at present. But zebra fish are proving to be a key to unlocking that particular door.

And I will point out again the new Program in Neuroendocrine and Carcinoid Tumors with its own lab and its own staff that is going after the cancer that killed Jane.

The government did not pick up the tab for any of the above at the beginning. Neither did private businesses like insurance companies and drug companies. The initial money for all of that came from private donors–people like you and me.

Last year, I walked from Hopkinton to Boston–all 26.2 miles of the Marathon route. You and I raised a bit over $4,300 as a result. That money went to research into NET–as did the over $35,000 the Caring for Carcinoid team raised that day. That money funded genetic research that will eventually lead to a Profile Program for NETs. The more we understand the disease, the more we can shape cures for it.

I am walking again this year. I have pledged to match every dollar pledged to my walk with a dollar of my own for the first $5,000. That means if I collect $5,000 in donations, Dana-Farber will get another $5,000 on top of that.

I am that serious about taking out the cancer that took Jane from us. I am that serious about saving others from the awful and humiliating days Jane faced at the end.

Please help today.

There has been no increase in federal funding for cancer research since 2001. That means–in real dollar terms–the United States government is spending half as much now as it was in 2001 once you figure in inflation.

Drug companies only want to fund sure winners. They want access to patient files. And they don’t want to fund research into the longterm side effects of drugs that have already been approved by the FDA.

Insurance companies won’t pay for anything they view as experimental.

Anything creative in cancer research has to be funded from the unrestricted funds raised through private fundraising efforts.

Those are the headlines from my day at the Dana-Farber Cancer Institute Leadership Summit. They read as an indictment of the way both the federal government and private enterprise currently view the kind of research that needs to be done if we are going to find better answers than we have for the cancers we are beginning to get a handle on–not to mention those like NET where we are years away from having a cure–or anything that really looks like one.

That’s why what the Jimmy Fund, the Marathon Walk, the Pan Mass Challenge and a slew of other fundraisers raised last year matters so much. Without those funds there is no creative, basic research. Without those funds there is no Program in Neuroendocrine and Carcinoid Tumors. Without those funds we have what we have for treatments right now and not much else.

That would mean 10 percent of children with the most common form of leukemia would continue to die–and those we have cured would continue to have a lifetime of long term side effects we are only starting to learn about.

That would mean there would continue to be be precious little beyond our current palliative drug regimen for those with NETs and CS.

That would mean fewer birthdays, fewer anniversaries, fewer days with children, wives, and husbands.

Last year, Dana-Farber raised $168 million through charitable efforts. Eighty-nine cents of every one of those dollars went into funding research the government can’t afford to fund and private companies won’t fund. It went to fund research into the genetics of NET; it went to fund the Profile Project that looks at every individual patient’s cancer genetically and treats it based on what it is and how it works; it went into the search for new kinds of cures that are less likely to take patients to the edge of death to kill their cancer.

I drove home from Boston again this afternoon without Jane. I’ll have dinner again tonight without her. I’ll go to bed tonight without her.

I’ll do all those things because neither the government nor private enterprise thought her cancer was important enough to spend money on.

Dana-Farber has shown this year that they think it is important enough to spend money on.

We need to help them find the money to keep their research into NET and Carcinoid Syndrome going.

We need to do it so fewer people are driving home alone.

September 9 I will walk the Boston Marathon again. Help support that walk with the biggest donation you can afford. I’ll match it dollar for dollar up to $5,000.

Do it now. 

There is a lot going on for Walking with Jane over the next few months. Between Relay For Life events, The Jimmy Fund Marathon Walk, the NET Cure Crawl, and a number of players to be named later, all those involved with this operation are going to be very busy. The truth is, we are going to need lots of help to pull all of this off as we work toward the goals I wrote about earlier in the week.

First and foremost, we are looking for more people to join the Walking with Jane Relay For Life of Greater Fall River team.  We need people to help with our pre-event fundraisers, to man the booth at Relay, and to help us walk through the night and into the morning. You can join the team by going to our Relay team website and signing up there. If you just want to donate, you can do that on the site as well. The Relay is June 22-23 at Somerset-Berkley Regional High School.

We have three major events between now and Relay. The first is the Calendar Challenge. That challenge is a small daily fundraiser every day during the month of May. I will post those things here daily for the month the night before. Do all of them and you will raise more than $100 during the month.

The second event is more labor intensive–at least for some of us. Tentatively–we are waiting on final approval from the school department–Wednesday, May 30 Chef Tony Melli is preparing a Pasta Supper at Westport High School. The dinner runs from 5-7 p.m. and costs $10 for adults and $5 for students. The menu includes Chef Melli’s famous spaghetti with meat sauce and sausage, an all-organic salad, and assorted desserts and beverages. There will also be drawings and Walking with Jane merchandise. Call 508-674-0279 to reserve your tickets. We expect this event to sell out quickly.

We have a gigantic yard sale/flea market scheduled for June 3 from 9 a.m.-3 p.m. at the Westport Grange Hall. Both indoor and outdoor sites are available at $25 per site. The indoor sites will be smaller than the outdoor sites. Reserve your site early, as again, we expect this may sell out quickly. Admission to the public is free. The number to call to reserve a site is 508-674-0279.

Proceeds for all three of the above events benefit the Walking with Jane Relay for Life of Greater Fall River team.

I have already begun raising money for the Jimmy Fund Marathon Walk on September 9. I intend to walk all 26.2 miles again this year as part of the Caring for Carcinoid Foundation team. All money raised by that group goes directly to funding NET and Carcinoid research at the Dana-Farber Cancer Institute. We are also looking for additional people to walk all or part of the event as part of our team. If you want a shorter walk that day, you can do ten miles, five miles, or three miles as well as the full route. There is a minimum $300 fundraising effort required.

Those are the events directly in front of us. If you can help in any way, please do.

I should be happy this morning.

After our Team Captains’ meeting results are posted, the Greater Fall River Relay for Life will have raised more than $45,000 so far. That is more than double what we had a year ago at this point. The 85 teams registered online and the 815 participants also are significantly better than we had this time last year. Our ACS rep told me the other night that only one Relay in New England has a larger percentage increase at this point in the year.

Our Walking with Jane Relay team is within $200 of what we raised total last year, with two major events scheduled for between now and Relay.

Dana-Farber has launched the Program in Neuroendocrine and Carcinoid Tumors. They have also launched a website to go with it. The staff of 18 people committed to that program shows a substantial push by DFCI to unravel this cancer.

Walking with Jane has developed a strong reputation in the world of cancer research and education over the last year: people know who we are–and like who we are and what we are trying to do.

Daily progress is being made against cancer in general–and neuroendocrine tumors and carcinoid syndrome in particular.

The result of that progress will be more people celebrating more birthdays and anniversaries and holidays. It will mean more dinners together and more graduations and more weddings attended. It will mean more shopping trips and more yard work–and more of the thousands of everyday activities that make up a life.

It will mean less suffering for millions of patients, caregivers, and loved ones.

But none of it will bring back that young man who died last week. None of it will fill the empty place at that mother’s table.

None of it will bring back the woman who died a week after Jane.

None of it will bring back my wife.

For them, the breakthroughs will have come too late. Their battles may have helped inspire others to carry the fight forward, but they will never benefit from any of it. The research that was not funded for 40 years–that prevented us learning the things we are learning now–sealed their fates.

People tell me constantly that Jane would be proud of what I have done since her death. But I would rather she were ashamed of me–hated me–had never met me–if it would mean that she were still alive today–having been properly diagnosed when a simple surgery would have freed her from the cancer that killed her and given her the long and fruitful life she so deserved.

I will never stop mourning the loss of my wife. Nor will I ever stop fighting this cancer–not so long as there is breath in this body to do so.

One day I will stand at her grave and tell her spirit, “This cancer is dead–and you helped kill it.”

But that day is not yet here–and will not get here without lots of help. We need you to get involved–right now.

I got some bad news last night.

I was at our monthly Relay for Life Captains’ Meeting in Somerset. Before the meeting, one of the Committee members told me she had run into a woman on one of our regular teams. Her son had had IBS that had recently turned out to be NET. A few minutes later, another committee member told me the young man had died within the last few days.

Any death disturbs me. To quote John Donne, “Every man’s death diminishes me, for I am involved in mankind.” But deaths from NET–especially cases of NET that have been mistaken for IBS–disturb me at a deeper level. Each one of those I somehow feel responsible for. It is foolish, I know. There is nothing I could have done in the last 18 months to speed up the search for a cure–or even for more accurate diagnoses–than I have already done. But it does confirm for me that I have made the right choice about what I currently need to be doing.

Over the last three days, I have hit on the first three purposes of the non-profit corporation we are setting up to help fight–and eventually kill–this disease. We need to educate more people about it, we need to do more research about it, and we need to create more people to research and treat the disease.

But none of that will happen without the financial resources necessary to fund those endeavors.

The Dana-Farber Cancer Institute has already made a substantial commitment to education and research in this area. In the time since Jane’s death, they have launched the Program in Neuroendocrine and Carcinoid Cancer. The program involves a staff of 18, including six MDs–among them Dr. Chan, who was Jane’s oncologist and Dr. Kulke, who leads the project and is one of the leaders in the field of this little known cancer–as well as a nurse practitioner, nurses, social workers, Ph.Ds and other researchers. A staff that size requires a substantial financial commitment far beyond what Walking with Jane has been able to bring to the table at this point– and DFCI has clearly made that kind of commitment. Eventually, we need to be able to match that financial level of commitment–and exceed it.

Our fourth–and final–goal then is to raise funds to support education, research and the scholarships we hope will create the next generation of researchers. Raising that kind of money will not happen overnight. Last year, we raised and donated just under $37,000 through the Relay for Life, the Marathon Walk, and donations made in Jane’s memory to Dana-Farber. My conservative, back-of-the-envelope figuring tells me we can hope to raise at least $70,000 this year–and that doubling last year should be reasonably possible.

To most of you reading this–and to me–that seems an unbelievably large sum. It is more money than I made in any single year of my working life. But it is a raindrop in the ocean compared to what we will need to spend just next year if we are going to find a cure within my lifetime.

But, as my sister-in-law reminded me last week, “The journey of ten thousand miles begins with a single step.” We have taken that step–now it is time for the next–so that some day the news that someone has NET will not be a precursor to their death.

The Program in Neuroendocrine  and Carcinoid Tumors at Dana-Farber is up and running and has a new website. Check it out.

We face two significant crises in this country at the moment that too little is being done to address. The third purpose of Walking with Jane, Inc. in its Articles of Organization attempts to address these issues in a small way.

The fact is we graduate far too few science majors in the US–and far too few of those we do graduate go into teaching. The majority of those who do go into teaching leave the profession within five years. Jane taught for 30 years. She was among the three brightest people I ever met. And she was among the three or four best teachers I ever met in any subject. If you talk to her students–as we did for the biographical piece on her for this site–they will tell you she was that rare individual who could make chemistry interesting for even the non-scientifically inclined. But beyond teaching chemistry, physics, AP biology–or any other of the subjects she took on over the course of her career–she taught the scientific method–a way of thinking about life, the universe and everything based on careful examination of the evidence and logical thinking.

It is that method of thinking that made America a world power and a force for good on this planet. It was the fundamental method of the Founding Fathers and the linchpin of every great piece of science and engineering in the last two centuries.

And it is a method of thinking that in recent years has been in shorter and shorter supply.

The second crisis is in medicine. While it appears we have plenty of doctors and nurses and technicians, this is not true. We face an ongoing shortage of nurses. And nurses may be the most critical people in the entire care-delivery chain. Jane’s nurses were superb. They were the ones directly responsible for her medical care more than anyone else.

While we may have enough specialists–and I do not think we do–we face an acute shortage of primary care/general practitioners. These doctors are the front line soldiers in the war against disease. They are the ones who spot the day-to-day abnormalities that are generally relatively easy to treat. They also have to be skilled enough and knowledgeable enough to recognize the out of the ordinary when they see it.

And good medical technicians are also in short supply. From watching the delicate dance among all three groups of people during Jane’s illness–and most especially her time in the hospital–I came to recognize the importance of all three groups to patient care.

Walking with Jane cannot fully address these shortages. But if a cure for NET and CS is to be found, it will come as the result of the kind, good science instruction Jane provided her students. It will come about because a student will enter the medical profession in some field with a scientist’s way of looking at the world and the problem of NET.

To encourage good teaching in science, good doctoring, good nursing and good work in the technical support areas, I created two Walking with Jane scholarships last year. The first is a four-year scholarship at $1,000 per year to be awarded to a Westport High School senior who intends to teach science or enter one of the medical professions. I also created a $1,000 scholarship at Bridgewater State University–Jane’s alma mater–with similar requirements.

Raising money to maintain and increase these scholarships, both in terms of the amount of the award and the number of scholarships given, is the third purpose of Walking with Jane, Inc.

“To support scientific research regarding treatment and cure of neuroendocrine cancers” is the second purpose of Walking with Jane, Inc. in the draft Articles of Organization.

Educating people about the existence of NET means nothing if it can offer little or no hope of an eventual cure. Barring extremely early detection, there is no cure for this disease. The good news is that the cancer is slow-growing and we have some ways to slow it down even more and ease the symptoms. And there are some promising therapies being developed that offer the possibility of a cure of more advanced levels of the disease.

But the development of those therapies is going to take time. Ignore the long process of FDA approval. In many ways, that is the least of our worries. Research costs money and devours personnel resources–both of which are in very short supply at the moment. There are only a handful of research labs working on this disease–and barely a double-handful of people involved in research on it at each site at best. And while the Dana-Farber Cancer Institute is in the process of establishing a national center for research into NET, even that group has limited resources at this point.

Walking with Jane has worked closely with the DFCI Development Office over the last year to change that, but we are still in the early stages of that effort. We have established the Walking with Jane Dybowski Fund at Dana-Farber specifically to address those needs–and are in the process of developing a series of ideas to promote that fund and raise money for it. The most advanced of these is the NET Cure Crawl we hope to launch November 10 of this year, but even it is still in the “thinking about” stage. Essentially, it would involve getting indoor shopping malls to let us use the time before they open–the time when many seniors use the malls to get their morning walk in inclement weather–to stage a 2-3 hour walk event to raise money for–and awareness about–NETs. Dana-Farber approved the general concept last year, but I got started on it too late to really do it and do it right.

If you have an interest in helping get this event off the ground in your area, please contact us at walkingwithjane@gmail.com. Walking with Jane has a number of volunteers working on various projects at any one time, but no one, including me, draws any pay from the organization. Last year, we raised just over $35,000 for three cancer organizations: Dana-Farber, the Caring for Carcinoid Foundation, and the American Cancer Society. So far this year, we have raised under $5,000, most of it through–and for–our Relay for Life team, which benefits the American Cancer Society. The ACS spent about $1.5 million on NET research last year.

There are also a number of small foundations involved in trying to increase awareness and research in this area. The largest of these has fewer than 10 people working full-time on the disease. A list of the foundations I know about working exclusively on this cancer can be found here.

Last year, less than $4 million was spent on research on this disease. That sounds like a lot of money, but in the world of cancer research, that is a pittance.