Jay

I’ve got rule breaking on my mind today.

This morning my dad texted me to tell me that someone named Jay Freireich had died. It was not unexpected, as my dad said. He was in his early nineties…either ninety-three or ninety-four. And yet. Age doesn’t really matter (as my brother has proven) does it? What matters is the impact you made on people while you were here, I think. If you make an impact, that means that the people you leave in your wake feel it deeply, whatever your age, whether your demise is expected, or not.

Jay was an oncologist, and my father’s mentor at the National Cancer Institute. He was largely considered a loose cannon in the field of oncology. My father thought he was a loose cannon, too, when he first arrived at the NCI as a clinical associate and was assigned to Jay’s tutelage on the cancer ward.

In fact, one of his first memories of Jay was at a party, where Jay got drunk and ended up passed out in a bathtub. My dad helped carry him to his car. My dad, who says Jay was a ferocious doctor, says that Jay still beat him to the hospital the next morning, and was already making rounds on patients.

Ferocious, in this case, means passionate and all in, by the way. Not scary. If you were Jay’s patient, he did anything for you.

Jay was trying to cure leukemia in children, something that seemed impossible at the time with the limited tools they had in the sixties. Surgery and radiotherapy were the mainstays back then, and they did nothing for cancers that circulated through the bloodstream or lymphatic system. (They weren’t getting too far with these strategies with solid tumors either, in fact, because most cancers had spread by the time they were diagnosed.)

But leukemia, being a blood cancer, didn’t respond to radiotherapy or surgery. Most kids died pretty quickly after diagnosis. Often of infection or bleeding, because they lacked platelets, blood cells that create clots, and white blood cells, which fight infection.

Jay was trying to cure leukemia with the handful of drugs that were available, a very unpopular idea at the time. Medicine, as a field, considered chemotherapy drugs pointless and barbaric. The thinking was they just made people sick before they died.

But the field had only tried drugs against cancer one by one. Jay was giving them in combination, which, from a traditional medical point of view, was considered “dirty” medicine. From a traditional point of view, if you treated with several drugs at once, you didn’t know which one was having an effect. That was bad.

Jay’s point, in this case, was that you needed to treat with a combination to disable cancer cells, which are uncannily adept at adapting to and becoming resistant to single drugs. That made sense. And that was enough reason to try it. Because people were dying. You had to try something.

Science, in general, and medicine, as a field, has a reputation as being cutting edge, always on the verge of curing something. But the truth is, the field of medicine tends to be pretty conservative about changing its ideas. Sometimes that protects people. Other times, it gets in the way.

In the case of cancer, it was the latter. To say that Jay took heat for his approach is an understatement. My dad remembers him being berated at conferences, where physicians would jump up and scream at him and refer to the ward of kids being treated by Jay as a “butcher shop.”

The thing is, Jay was right.

My dad saw it quickly, and became a Jay fan. He, in fact, developed combination chemotherapy for Hodgkin’s Disease, another deadly one that tended to affect young people, shortly thereafter. This work, together with Jay’s, changed cancer treatment as we know it. Now, the idea of getting cancer chemotherapy is routine. But that’s because people like Jay and my father, who also took a fair amount of heat for what he did, dared to break rules…or, in this case, flout the accepted wisdom in medicine, censure be damned.

Jay did all kinds of other things that rubbed the field the wrong way. He found a way to do platelet transfusions to keep kids with leukemia from bleeding out, which often killed them before they could benefit from treatment. He almost got fired for it. And he broke the rules about how to give antibiotics to save kids from dying of infection before they could be treated for their disease. He gave them in combination, rather than culturing the bacteria and picking the appropriate antibiotic first. The reason: Leukemic kids with an infection often didn’t have time to wait for the lab results to come back. They might be dead by then.

Jay also created the laminar air flow room my brother eventually lived in. The rooms were invented, initially, to protect cancer patients whose blood counts were extremely low as a result of receiving chemotherapy.

That’s how my brother ended up there…My dad worked at the hospital. The rooms were there, thanks to Jay. My brother was diagnosed with aplastic anemia, a disease in which the marrow stops producing blood cells, there. A laminar air flow room was plan B, should my brother seem to be at risk living in the outside world. Plan B went into effect pretty quickly after my brother was diagnosed.

My father and I included some of the more outrageous Jay stories in the book we wrote together, The Death of Cancer. We took a little heat from it. People thought Jay would be offended, and that it perhaps an unseemly way to depict a doctor.

But Jay rather enjoyed his loose cannon reputation. And he loved to break rules. And he loved to tell stories about it. He wasn’t a reckless rule breaker. He simply called the question on isms that looked like they were based on shaky reason. And if he broke them, it was usually to serve a patient, or patients.

His take, when I interviewed him years ago, was, if you’re standing on a dock, and someone is drowning, do you watch, because you might drown too, or do you jump in and try to do something about it? Jay said he always opted to jump in. It was a no brainer for him. And he didn’t care if the field didn’t like it, or him.

He almost got fired several times for the innovations he put in place at the NCI. He was told several times to desist on the platelets problem, and went ahead anyway. He told me if they fired him for trying to do what was right he didn’t want to be there anyway.

My dad is the same kind of doctor. He doesn’t mind breaking a rule, especially if it’s on a patient’s behalf.

He has lots of Jay-like stories, himself. Sneaking a dying patient’s dog in so she could visit with it one last time. (Against the rules.) There are more, but that’s another post.

We were talking about rules and rule breaking the other day, when I was visiting my parents in Connecticut. We were remembering the head nurse on my brother’s floor…a woman I’ll only identify by her first name—Ada--because I don’t have anything flattering to say about her.

Ada loved a rule. She was a stocky, grim woman, with dark graying hair. In this era, nurses still wore caps, and which one they wore depended on where they graduated from nursing school. Hers was an incongruous lacy thing, which was in stark contrast to her rigid way of doing things. She was the kind of person that, when she walked down the hall, you got a little chill of foreboding, waiting to see what flaw she was going to hone in on. Because she looked for them.

Under her direction, one nurse, ticked at my brother, then nine or ten, for refusing to turn off his light at bedtime, took all his GI Joes, which took days to sterilize, out of his room in retaliation. My brother called home, upset. My father went into the hospital, that night, to tell that nurse she’d better not try anything like that again.

To him it was obvious….a small boy in a hospital, by himself, with the one thing he’d asked for for company, and this woman couldn’t see it. Couldn’t see the person for the rules. It was Jay’s dock….stand and watch, avoid risk, or jump into the fray, break a rule.

We broke a lot of rules, and norms, during my brother’s years in the hospital. He was only supposed to have autoclaved food, hospital food. It was awful, heated beyond belief. My mother asked the ladies in the kitchen if she could make food, have I tested for bacteria, have it autoclaved. They did it.

We had parties. Ted had too many visitors at once. We stayed past visiting hours. The dog came to visit. He had jam sessions on the cancer ward. My mother snuck the family dog, Donner, in. I regularly talked the phone operators, who had to connect calls to patients, into connecting me after hours. “You don’t understand,” I told one bemused operator one night. “Lynyrd Skynyrd’s plane crashed. He has to know!”

I used to piss Ada off regularly because I’d go visit a girl down the hall, who was far from home and had no visitors. I’d sit on the spare bed in her room, ruffling the blanket, apparently. Ada let it be known I was not to do that anymore. I kept going. The other nurses on the ward just quietly fixed the blanket.

My brother, in his own rule breaking venture, took to secreting his pills in a crack in the wall, because he didn’t think they were doing much for him. Months into this, workers came to repair the shower and were a bit surprised when an avalanche of pills flew out of the wall they opened. But my brother had made his point.

Like I said, I’ve got rule breaking on my mind, but to be honest, I’m not sure where I’m going with it. What I feel is loss, even though I did not know Jay well, and a sense of musing speculation about rules…

I mean, as a parent, I’m supposed to teach and uphold them.

But…so many, so often, seem to be based on the things that aren’t necessarily about the greater good. Maybe it makes me awful, but more often than uphold them, I teach my kids to question them and people who seem to hold on to them irrationally. Especially when they are in a position of authority (which, in their case, usually means adults). Because I find that people often cling to them as a way to feel safe, or to ensure their own power….which is no reason to cling to anything.

I’m not saying we don’t need rules at all. Or that they’re all bad. I guess we need them sometimes. I just have a lot of admiration, I confess, for the people who break them, especially in the name of humanity, or being humane to others. Here’s to Jay, rule breaker extraordinaire. A lot more people are alive because of him.