Monthly Archives: April 2012

Meditations for an Easter Evening

It is Easter Sunday. I had dinner with my in-laws. I watched a bit of the Masters golf tournament and listened to the Red Sox find a way to lose the same game twice. I have been to the cemetery, walked around the yard, and done some cleaning.

I enjoyed dinner and the company of my in-laws. But the cemetery left me engulfed in grief–and when I arrived home, the house was too quiet again–that quiet that reminds me Jane is not here and that I will spend another night without her to talk to. We would have talked through the Masters tonight, tried to decipher the status of the Red Sox, and reveled in the beauty of the daffodils. I would sit on the couch massaging her feet while we finished off the Sunday papers and planned our post-Easter hunt for decorative bargains.

I try not to hate anyone or anything. I try to understand that her death has set things in motion that will save the lives of others. But I know how Mary felt at the base of the cross after “It is finished” and before the empty tomb. And my hatred for this disease is unspeakable. My anger at the Congresses that eliminated funding for this form of cancer and then never came back to reconsider it for 40 years is unspeakable. My anger at my own failures to get her diagnosed sooner–and for all the mistakes I made before her death–is unspeakable.

I will be the first to admit that none of this is logical. Diseases lack intelligence–they do not choose their victims and there is no true malice in them. They are a force of nature–and even if we are successful at eradicating this particular cancer, it will not be the end of meaningless, painful deaths.

Politicians are politicians. They have intelligence, but that does not mean they know what they are doing. They act and fail to act based on reasons that seem adequate to them. We can wish for more intelligent people in those roles, but given the way campaigns are financed–the way we choose our leaders based on who would make a good drinking companion–we are not likely to do significantly better than we do now. I can dislike the results of our stupidity, but I cannot hate human beings because of it.

And logically I know I made the best decisions I could have made–made the best arguments I could have made–given what I knew at the time and given where Jane’s mind was at the time.

But the anger is still there. All I can do is to try to channel that anger in constructive ways. I cannot kill death–even with help. But perhaps, together, we can remove a few arrows from his quiver.

I don’t just want more birthdays for people with cancer or heart disease or Alzheimer’s–I want more days, weeks and years of productive, meaningful, and enjoyable life–period.

A fine and private place

I have become a frequent visitor to a specific cemetery in recent years.

It began after Jane’s mother died. We would go out to breakfast on a Saturday morning and then, before going on with the shopping and the other errands of the day, one or the other of us would suggest going up the hill to where her mother is buried. If the weather were bad, we would not go–or if we did, we would not stay long. Sometimes, we would take flowers from the garden or a wreath or a garland with us on those special days in the calendar. And sometimes we took them for no better reason than the flowers were in bloom and we wanted to share them.

We did not pray there. Rather, we talked with each other. Her mother, Jane said, always enjoyed a good conversation and listening was one of her pleasures. Our trips there became less and less frequent as Jane weakened in the fall before her death. The Saturday before she went into the hospital, I visited there alone and–for the first time–wept there.

Then I put on my strong face and went home.

Right after Jane died, I tried to get there every day. Work and the cemetery hours did not always allow that–and the snow last winter seemed endless. But I trudged through every snowfall until I had recreated the path I first dug out.

I do not go there every day now. But Saturday has remained a sacred trip. Sometimes I go in the morning, as I did today. Sometimes I go in the afternoon. I take some flowers or, if I know the flowers will have held up, some water for them. I cannot abide the sight of her grave with nothing on it.

I prefer living plants to cut flowers except when the cuttings come from our gardens. This morning I took some daffodils and a couple of sprigs of forsythia. We liked to see the forsythia in bloom–and the daffodils–because they announced spring was here in ways the crocus could only promise.

The problem with leaving living plants is that people steal them. Last year I left a pair of Easter lilies, one for her and one for her mother, and they were gone before they bloomed. This year, a pot of daffodils and another of English daisies have vanished. When I arrived this morning, I more than half expected the hyacinths would have followed suit. But they were still there–just at the edge of blooming. Their scent filled the air as I worked.

I hope the vanished flowers have found a good home. I would have liked them for the beds here after they had flowered–but clearly someone had other plans for them. I like to think they grace some poor spirit’s house and that they have taken with them some blessing that will ease that person’s day in a way the theft has not eased mine.

We humans do not always think about the consequences of our actions for others. The world would be better if we did.

It’s complicated

If science were the only thing involved in finding an answer to the riddle of NET we would, perhaps, already have found the answers we are looking for.

But there is more to the quest for knowledge than people in white lab coats working in laboratories. Those people have to be trained in particular disciplines, have to develop certain habits of mind. The labs they work in have to be equipped not just with glassware and optical microscopes, but with computers, electrophoresis machines, centrifuges, and a thousand other arcane pieces of equipment. Those rooms have to be heated and cooled in buildings designed to facilitate collegiality and communication.

And all of those things cost money–large amounts of it. In the absence of that money the people who would like to do the science have to also become fundraisers. They have to write proposals and then sell the ideas in those proposals through presentations and dinners and baseball games to those who have access to the money the research depends on. The dog-and-pony show has become as much a part of science as DNA sequencing or rocket motor testing protocols.

Every minute a researcher spends on glad-handing potential donors is a minute that cannot be used for thinking or doing experiments or analyzing data. It is a minute stolen from research and from learning.

If that were the worst of it, it would be bad enough. But big money often comes with its own set of science-corrupting problems. Much of the big money in medical research comes from pharmaceutical companies. That is not an entirely bad thing–their profit motive can provide a powerful stimulus to developing new therapies and getting them adopted. But their focus on developing a drug for a particular market can get in the way of the pure research that may lead to new and better treatments. Basic science is not always immediately profitable–for all that it is supremely necessary.

Gregor Mendel did not become wealthy because of his research on pea plants. But a whole world of seed-based wealth grew out of his experiments. Albert Einstein’s Theory of General Relativity made him a household name and fueled much of the modern world, but it did not generate much wealth for him personally. And Watson and Crick’s discovery of DNA brought them no great wealth for all that it has opened medical doors for the rest of us.

In our current circumstances, however, there is too little money going into basic research and development. That has always

been the place of government in the US–to encourage R&D. It is where the Internet came from. It is where the Worldwide Web came from. It is where the atomic bomb and the hydrogen bomb and nuclear power came from. It is where the moon landing and the space station came from.

But the politicians are focused on cutting the budget and on applied science. They want science they can point to the way they can point to a bridge or a courthouse. And they want basic research done on the cheap–if at all.

And that, my friends, brings us to politics–but that is a story for another day.

Why do you do it?

I get a wide range of questions about why I do what I do.

First, there are those who ask why I am so interested in the cancer that killed my wife. After all, people say, it is a rare cancer and it does not affect very many people. And nothing you do now will bring Jane back. There are more important things you could be doing.

Yesterday’s post provides a partial answer to that question. The more I learn about NET, the more I think this form of cancer is far more important–and far less rare–than we have generally thought it to be. And if I am right, then this work I have set myself will have an impact on a greater number of lives than much else that I could be doing right now. Jane’s death haunts me–but the lives of those who have this disease and are still fighting it also drive me. I want them to have the life that Jane and I were denied. And even if their numbers prove to be small, their lives matter.

Others ask me why I don’t then focus on just NET–why I bother with Relay For Life when the money raised there is not directed at NET. Again, yesterday’s post supplies a partial answer: I am not smart enough to know what piece of general or specific cancer research is going to fuel the next piece of knowledge about the NET puzzle. But the truth is larger than that. I sometimes feel like a cancer magnet. My sister and sister-in-law are both breast cancer survivors–in my sister’s case, a survivor of more than a decade from a late Stage III aggressive form of the disease. My brother had a nasty skin cancer some years ago. I have another sister and a very old friend who have both had their thyroids removed. I have a former student with cervical cancer–and another with Hodgkin’s Lymphoma. My wife’s cousin has battled cancer in multiple locations over the past several years. One of my oldest friends lost her father to cancer when she was still in junior high school. I lost a favorite uncle to cancer in the 1970s.

And I cannot count the number of students I have had over the years who lost fathers, mothers, sisters, and brothers to this foul disease. I cannot turn my back on any of them.

So why do I do the MS Walk, others want to know. Certainly cancer is a huge issue. But MS affects a smaller number than cancer does, they reason.

And that may be. But I watched an old friend’s sister descend into that disease in the early ’70s–watched it cripple her, cripple her marriage, cripple her husband…I have had several friends diagnosed with the disease, as well as my wife’s cousin’s son. It takes little enough to try to help raise the money to help find an answer to that disease.

I do the Walk for Hunger because I know what it is to be hungry. I have lived on ketchup soup and filled my belly with water so I would feel full despite the missing meals. During my college years, there was no such thing as the Boston Food Bank. I have known people who went without so their kids–or their brothers and sisters–could eat.

Buddha reminds us that life is suffering. But suffering can be alleviated if we all make a commitment to do what we can to help those in need. I know I cannot help everyone–but I will help those I can.

I hope you will, too.

Looking away to see

There is a danger in being too tightly focused on a single issue.

Jane reminded me of that when she showed up in a dream early this morning. She wasn’t upset with what we have been doing with Walking with Jane, but wanted me to remember that in all things, but especially in science, one never knows where the next game-changing discovery is going to come from. My only real gift is in being able to see the connections between disparate subject areas.

Whether you prefer to see something supernatural in this visitation or the view that this was merely my subconscious kicking in to remind me that I have been overly concentrated on research directed entirely at NET lately is immaterial. What matters is that we sometimes need to look away from something in order to see it.

Two of the most important discoveries on NET in the last two years really came about because someone was looking at something else. The first was a large-scale autopsy study that was really not looking for NETs in particular and discovered those nasty little tumors

in just under one percent of the bodies. One percent seems like an insignificant number until you translate it into what it really means. In the US, one percent of the population translates to three million people walking around with undiagnosed NETs.

But do those cases all matter? Most NETs don’t do what Jane’s or Steve Jobs’ did: produce detectable amounts of a specific hormone or peptide. If most of the tumors are benign and inactive, it makes no economic sense to go around looking for them. Last year, we diagnosed about 12,000 active NETs. There are about 120,000 people living with those NETs. About 10-12,000 of those diagnosed patients die each year. Compared to lung cancer or breast cancer, those numbers are pretty insignificant.

Then I read about a researcher who was trying to figure out why some prostate cancers are more aggressive than others. His findings were pretty disturbing. In many aggressive cases of prostate cancer, there is an NET sitting in the same neighborhood. One of the more aggressive forms of lung cancer also has a NET component–as does a breast cancer.

A peculiar fact of the cancer diagnosis trade is that when multiple tumors are discovered, we tend only to biopsy the largest tumor–and we assume all the smaller tumors are of the same breed as the large tumor. There is a growing body of evidence that says this is not always the case. How often are some of those NETs? The answer is that because we don’t often check them, we honestly don’t know.

One of my questions continues to be, how important are NETs in causing other cancers to become more aggressive than they might otherwise be? And what other problems are NETs causing that we are not picking up?

In my reading of The Emperor of All Maladies, I am struck over and over again by how much trial and error has been involved in our search for cancer cures–and how little research was done into the way cancers work.

My recurring nightmare is that in our hit-and-miss search for cures for the major cancers, we have largely ignored what many think of as among the rarest of cancers. And in ignoring it for nearly 40 years, we may have been ignoring a factor that makes some cancers more aggressive than others–and more deadly.