Imposing (Narrative) Structure on Chaos

I planned to write more about habits today, but then it got really nice in the middle of the day, and I went for a walk, and I found myself listening to Part I of the 3-part Freakonomics series on Bad Medicine like WHOA.

Medicine, and bad medicine (shake it up) are topics about which I have a LOT to say. So, habits and Question of the Day will have to wait until next week.

The focus of this episode was on the switch that’s really only happened in the last 25 years, from “eminence-based” medicine to evidence-based medicine. Stephen Dubner commented early in the episode that most of us want to think that our doctors are “If not infallible, then at least reliable” — but is that really true, he asked?

Boy, howdy do I have thoughts. Lots of them! So, let’s impose a little narrative structure on this post by way of a list. I give you…

Five Things I Have Learned About Doctors and Medicine By Living My Life

1. Doctors are people.

My dad is a doctor, and to this day I call him with basically all my medical questions, from “Why is my finger doing this weird clicky thing?” to “Please call me in a prescription for antibiotics I may or may not need” to “They think my son has cancer.” Other people were probably intimidated by my dad (every Israeli who has ever met him has told me, “You know, he could TOTALLY be the President of the United States”), but for me, he’s my dad. He’s really smart, but he’s my dad, and I kind of extended that to all doctors, everywhere. They’re people. They’re not deities, though they often behave as though they are.

2. Doctors are sometimes unwarrantedly arrogant.

I’m not sure that unwarrantedly is actually a word, but it explains exactly what I’m trying to say. Yep, you went to medical school and you know a lot of stuff. Cool. You don’t have to be a jerk and tell me things like, “Your baby may not ever learn to sit up” when he is not even one week old. (Spoiler: my kid sits, walks, runs, talks, and KICKS ASS). I am really, really lucky that my husband and I are educated consumers, because instead of hearing this doctor’s pronouncement as a fact, I took it as a challenge and took my baby home and got him (and me) lots of therapy. I am horrified when I think of what could have happened if we had taken the gloom and doom path this doctor wanted us to take. If we hadn’t pushed Adi. If we hadn’t believed that he would sit up.

3. A doctor who doesn’t want you to ask questions or get a second opinion is not a good doctor.

A doctor should definitely encourage you to ask questions and to fully understand the information you are getting. If you are being treated by a doctor who gets impatient when you ask him or her to explain medical terminology or concepts is a jerk, and you should find a new doctor.

A good doctor will never be afraid of a second opinion.

I have met a LOT of doctors. I have spoken to extremely experienced professionals who were way high up on the totem pole and who still took the time needed to explain things so that I could understand them. I have also talked to doctors who couldn’t understand that the most important person in the room was THE PATIENT, my son, and that they would treat him with respect or they would GET OUT.

When Adi was diagnosed with leukemia, we asked about getting second opinions, about going to Rav Firer, whatever, they told us we could absolutely do that. They also explained to us that the treatment protocol for Adi’s type of leukemia exactly the same at every hospital in Israel and across Europe, and that it was extremely similar to the treatment protocol in the United States. They were happy to sit with us and review the written treatment protocol. They never made us feel like we had to do the treatment in their hospital, although they were extremely clear that we needed to start treatment immediately. Every question we asked was answered patiently and fully. And that was true throughout Adi’s treatment. All two and a half years of it.

4. Doctors don’t know everything.

See above, and also, during our cancer journey, Guy said that the thing he was most surprised to learn was how very little doctors know about some things. Like, for example, what the side effects of steroids will be. “Well, he might be totally manic, or he might be depressed. He could have a voracious appetite, or he might not want to eat at all. And next time, it might be totally different.” Awesome. How about, “Should we give our son cranial radiation?” Well, some studies say, yes, definitely! But other studies say, ABSOLUTELY NOT UNDER ANY CIRCUMSTANCES. There’s a reason they call it practicing medicine.

There was a really fun period of time where we had to stop treating the cancer because Adi’s intestines exploded and he needed emergency surgery and they gave him an ileostomy and he almost died and then he started recovering but not really so they kept not giving him chemo and we had a couple more emergency surges for bowel obstructions and the surgeons were all, “We need to reverse this ileostomy and let him heal and then go back to chemo” and the oncologists were like, “CHEMO IS SO COOL DUDE LET’S DO IT NOW,” and we were so, so helplessly lost, and Guy finally told our oncologist, “You guys need to get your stories straight, because you have destroyed all of our faith in the system by constantly telling us different things,” and there was a big, epic battle and oncology won. Turned out to be a good decision.

5. The best doctors are like the most learned rabbis.

Bear with me. If you are not of the orthodox jewish persuasion, you may not have ever had the experience of “asking a rav” a question. But it’s a thing. People do it. And when you ask a rabbi for permission to do something, the easy thing for the rabbi to do is say, “Nope, sorry, you can’t do that.” It’s super easy to say no. But the most learned rabbis know how to say, “Yes, if you do this, and you do it for this reason and this way, then yes.” And most of the time, people are happy to live with the reason and the explanation, because the answer is YES.

We found that many, many young, less experienced doctors, and even those who were simply not experienced in pediatric oncology, were very happy to say NO. No, you can’t take Adi to the mall for an hour. No, you can’t spend a weekend at home. No, we can’t disconnect him from the port for a bath. No, no, no.

Our oncologist was amazing. He always found a way to say yes. Oh, your son who just had emergency surgery and desperately needs to restart his chemo protocol wants to go to France for a week? Sure, we can do that. Oh, you want to move treatment to Saturday night so that you can be home for Shabbat? We’ll make it happen. Oh, you want to go home for four hours so your son can see his room and check that it’s still there? Go, have fun.

So. These are things I thought. Think. Yeah. And now you know.

Second in a Series

After our initial relief at the neurologist's assurances, those nagging doubts began to creep back in. Is he OK? Is that normal?

At subsequent appointments with out pediatrician, we heard the familiar refrain. "He's really big. Let's keep an eye on that." It was just something we repeated at each visit, a scrawled notation in the chart.

When we took D. in for his 16-month checkup, the pediatrician asked, "Is he using any words yet?" We looked at each other, Mr. WG and I.

"Well, he signs 'more,'" I said.

"But does he say any words?"

"Um, no. Not really. But S. also didn't-"

He held up his hand. "I'll give you another two months," he said. "If he's not talking by then, we move forward with speech therapy."

I have mentioned that what I hate most about going through the experience of being D's mother - and let me clarify that I love D. with all my heart, and I love being his mother, except for the part that I hate about it - is that it forces me to confront the worst parts of myself.

I hated the therapy sessions so much.

I especially hated the intake sessions. For the uninitiated, that’s the session where the therapist shows up on the day the housekeeper invariably does not show up, looks around at the hovel you call home, brushes away the debris from the couch and sits down gingerly. She pulls out a clipboard and says, “So, tell me about D.” And then you start talking and crying and she pretends not to notice that you are sobbing or that you haven’t washed your hair in three days or that your other two children are fighting because one will not share her imaginary pizza with the other, and it’s just loads of fun all around.

I resented every minute of every session. In my defense, at one point, D. was getting 5 hours of therapy every week. Every day, I had people traipsing through my home, every day I had to be social with these people, smile, make conversation, banish my girls to the family room to watch television, wake D. from an ill-timed nap or rush him through a meal that started a few minutes late or coax him to stay awake just a little while longer.

Every. Damn. Day.

Anyway, the idea of speech therapy on top of what we were already doing really didn't thrill me, so I just sort of shoved the thought away. "He'll talk when he's ready," I said to anyone who asked. "I managed to do OK with my other two kids," I reminded them. "Why would we even bother with speech therapy?" I asked Mr. WG. "I mean, we don't like anything the girls have to say."

But eventually, shortly before D’s second birthday, I was forced to concede and take him in for a speech evaluation. And I did have to take him in – the speech therapists did not come to the house. So I bundled up my boy and hauled my pregnant self to the building, parked about 6 miles away, and then attempted to coax D. to walk. When that didn’t work, I hauled him up over my girth and waddled across the parking lot, up the stairs, and down the hall to the elevator.

Inside the elevator, D. reached for the red button repeatedly. He still does that. It’s really annoying.

We finally made it to the therapist’s office. I hated the therapist instantly. She just had this way about her, this air of condescension, this attitude, this bitchiness. Now, most therapists base an evaluation on what they see, of course, but they also note somewhere things reported by the parents. For example, if I told the physical therapist that D. climbed up on the dining room table, she wouldn’t encourage him to do so in her presence, but she would note in her report: “Mother reports that D. can climb onto the dining room table and does so regularly. Mother also reports that her other children run with scissors and play with knives. Referred family to CPS.”

This therapist refused to include anything that she did not see firsthand. So at our first session, in a strange place, with a strange person, D. did not speak. He said maybe 3 words. And so her “evaluation” indicated profound disabilities. And I had to sit and listen to it for 45 minutes and then read the whole report when it came.

She handed him a dog. “The doggy wants to eat,” she said. D. looked at her. I looked at her. What the hell did she want from him? Turns out she wanted him to feed the dog some pretend food.

“Um, we don’t really play like that,” I said. “Give him a computer or a phone or a doll, even, and he’ll do all sorts of imitative play, but we don’t do dogs.”

“Well, he needs to. This is an important skill.”

Got that? FEEDING. A DOG. IS AN IMPORTANT SKILL.

The therapist also mentioned that she preferred to have the parents wait outside during the session. I ignored her. She repeated herself. I continued to ignore her. She conceded that I could stay until D. had a chance to get used to her. I explained that I would stay, period. I can’t be sure, but I think she rolled her eyes.

When I got her report, she had marked D’s expressive language at 12 months and his receptive language – that is, what he could understand – at 16 months. He was days away from his second birthday, and none of his other therapists had indicated such a drastic delay. To say I was devastated is like to say that I sometimes disagree with my father-in-law.

Mr. WG put it all in perspective fairly quickly, though. “She’s an idiot,” he announced, and there was to be no further discussion on the topic.