Decisions Jane made

Some of you reading this are alive today because of a series of decisions Jane made in September, October and November of 2010. Some of you who have just been diagnosed will also benefit from those decisions–as will some people who have not yet been told they have carcinoid/NETs. The day Jane died one of her doctors told me Jane’s willingness to push beyond where she might have drawn the line had enabled them to double the sum of all knowledge about her particular form of NET cancer.

…even when we are dying.

In addition, we learned a great deal about carcinoid heart disease and how to deal with the aftermath of heart surgery in carcinoid patients. At least one hospital changed its protocols based on what they learned from Jane’s experience. They tell me people are alive today because of that.

The decisions people make

As I was reminded in Part 2 of the PBS series “The Emperor of all Maladies,” much of what we know about cancer and how to drive some cancers into the deep remission that at least appears to be a cure, came about because of the decisions of some cancer patients to put their lives on the line for science. Drugs like Herceptin and Tamoxifen didn’t find their way into common use by magic. They require knowledge and research and–ultimately–human beings willing to take a chance on a formula untried outside a petri dish or an animal study.

They tell me people are alive today because of that.

I remember clearly our first trip to Dana-Farber. I remember the drive and the elevator ride. I remember sitting in the waiting room, going over the questions we were going to ask. And I remember a young woman approaching us to ask Jane if she would give them an extra vial of blood so that they could add it to the samples they were studying in an ongoing attempt to understand NET cancer.

Making decisions

I remember Jane being hesitant at first. Her most recent blood draw, two weeks before, had been horrible. Her arms were puffy from fluid retention from the leaking valves in her heart. That made finding a vein an unpleasant adventure that only became worse in the succeeding weeks. They had almost had to milk the vein to get that sample.

I remember sitting in the waiting room…

In the end, the scientist in her won out. We had learned enough about carcinoid/NETs in the three weeks since her diagnosis to know how little anyone knew about the disease. We both knew there was little anyone could learn in time to help Jane, barring a miracle. But there was a moral imperative that had ruled both our lives for decades: Knowledge matters–and the pursuit of some kinds of knowledge is worth almost any cost.

Decisions to help

I can’t say where that imperative came from for either of us. Nor do I know when it was first evidenced in Jane’s life. In my own case, one of my most vivid memories of early childhood was taking part in the first mass polio inoculation in Pittsburgh in the early 1950s. My parents took us there, knowing there was a chance the vaccine–which may still have been in trials at that point–might not work or, worse, might give us polio.

In the end, the scientist in her won out.

There are several things that stand out in the book on which the PBS series is based–as well as in the series. The greatest of those is the raw courage of cancer patients and their caregivers–parents and spouses, mostly. We would be nowhere in cancer research without their willingness to try something new–even if that something new might kill them or their child–or might be a placebo with no more curative power than a lump of sugar.

Impact of decisions

Without those kinds of risk-takers, childhood leukemia would still kill nearly 100 percent of those children. Today, 90 percent leave the hospital cancer-free. Without those risk-takers, every form of breast cancer and lung cancer would still be a death sentence. Without those risk-takers, there would be no hope for those who deal with cancers for which we do not yet have a cure–or anything that looks like one.

…the raw courage of cancer patients…

It is not an easy thing to volunteer for a drug trial. Even when one is not in a double-blind trial, there is no certainty the treatment will work–no certainty that the dose one receives won’t prove fatal. Even when all the laboratory work says something should work, should be safe, there is no way to be sure. Not every experiment works the way we think it will.

The decisions we make

But if we are ever going to beat NET cancer–or any cancer–every patient needs to confront the disease on two levels. First, we need to work on curing ourselves. That means staying positive and taking care of ourselves, mentally and physically. But we also have to be willing to think about making sure the doctors and researchers learn all they can from our particular case, even when we are dying.

It is not an easy thing to volunteer…

That’s what Jane did. As a result, she moved things forward for many others. I hope I can find the courage to do likewise when my time comes.