The Boundaries of What You Know

Dear students, put yourself in my shoes:

In February, you get rear-ended on your bicycle and end up in the hospital. You’re not seriously injured, but the doctors come to you before they release you to let you know: They found something strange in your CT scan, you’ve got a lesion in your left hip. What’s a lesion, exactly? You know that a lesion on skin is a kind of wound. What does it mean when you have a lesion in your bone?

Two days later, an oncologist at Penn explains: it’s a tumor. No, it’s probably not cancer. But whatever it is, it’s slowly eating your bone from the inside out. You’re going to need a biopsy to figure out what it is, and whatever it is will have to come out sooner or later, or else your left femur is going to turn to mush.

If this all sounds a little foreign, imagine how I felt sitting on the examination table, trying to take notes on a whole lot of concepts I had never heard before.  I mean that literally -- I had a notebook with questions I had dutifully writing down before the appointment. And sure, I wrote down the answers to what I thought to ask.

But that encounter was the very beginning of what I would come to understand over the next year: I knew almost nothing about what was going on with my body, and even less about what treatment and recovery would be like in the next months.

Here’s a brief summary of what the medical interventions were like.

The Biopsy. You take a day off work to go to the hospital, and get put in something called “twilight anaesthesia,” where you’re awake but not really in touch with reality. They then put you in a CT scanner so they can spot exactly where the tumor is, and extract a sample with a long needle. At the end, you have to hang out for a few more hours to make sure the narcotics have worn off. Your husband volunteers to get you food from the cafeteria, which is great because you haven’t eaten anything in twelve hours.

The Pre-Surgery Meetings. Turns out you have Giant Cell Tumor, which is exactly what it sounds like: the cells are getting really big, which means they are getting soft, which means you will have a collapsed femur one of these days if the malignant cells aren’t removed. You set a date for surgery and meet the anaesthesiologist. “Do you have any problem with transfusions?” He asks. No… but which religion does, again? And then all of a sudden you are talking about the amazing blood recycling machines that they use Jehovah’s Witnesses.

The Surgery. You go to the hopsital at 5AM. Your husband kisses you goodbye at 6. Another couple is parting ways at the elevator. The woman in the other bed is crying, a little. You’re not crying. A part of you judges her for crying. The other part of you thinks, what does she know that I don’t? The medical residents spend a lot of time looking for a vein they can see. The surgeon initials your hip with a sharpie. This is one of many times they ask you to confirm exactly where they are going to cut. The OR room itself looks kind of like an alien examination room, except it’s very well lit and they’re playing Justin Timberlake. Everybody seems like they’re in a good mood. “It’s Monday morning,” they tell you, “and we like our jobs.” They give you some warm blankets, and that’s the last thing you remember.

The Post-Surgery Follow-Up. Two weeks after the surgery, you go back to the surgeon’s office. You’ve followed all the instructions: take pain meds when needed, change the dressing on your incision every three days, shower but don’t scrub at the staples. You lay down on your side and the physician’s assistant uses pliers to pull them out and drop them in a small metal tin. Click, click, click. This, strangely, is the first thing that has hurt more than you will expect it to. At first you try and count the number but after a while you just focus on breathing. Once it’s done, she shows you the x-ray of your new titanium-enhanced femur. “It looks great, healing well,” she says, only you don’t really hear her because you and your husband are just staring at the X-Ray. What is that, you think. I had no idea it would look like that.

This sounds like the end of the story, but really it was the beginning. A new beginning where I was everything that I used to be, except now I was also a member of a rare disease club, a survivor of major surgery, and the owner of an implant. I posted the X-ray image on Facebook. “You’re bionic!” My friends cheered. I started going to physical therapy, slept a lot, and was cautiously optimistic I would be able to ditch my cane by the time school started in September.

This was foolhardy. But it reflected my mindset at the time: this was a thing that would pass, it would be difficult and then I would go back to being “my old self.”

I’d like to say that I disposed of this mindset quickly, but I actually clung to it even as my condition worsened. Going back to work was a relief, because I had something to do, but the muscles in my left leg did not agree. I wanted to act like everything was fine, but walking became a real ordeal, and I spent many hours between classes face down on Siswick’s couch with an ice pack wedged into my hip joint.  Despite this, I thought it would be a good idea to go to a black tie event in New York and wear high heels. I paid for that for weeks.

According to my surgeon, everything looked fine -- no tumor recurrence, no messed up implant--which in a way was even more frustrating, because there was no definitive explanation why my body wasn’t playing nice. It just wasn’t. The worst was the occasional muscle spasm -- kind of like a charlie horse, but faster and more intense. My whole leg would seize up and I would just have to wait it out. Speaking was not really an option when these happened. The first time one hit me, I had just stood up on the bus to get off at 22nd and Chestnut, to go to school.

As the bus slowed for the stop, I started to panic: I can’t move right now, and I can’t really ask for help. What if the bus passes my stop? The thought of having to shuffle down an extra block to work was almost worse than the muscle spasm.

It was around this time last year that my juniors were reading “The Things They Carried” and we were talking about how you convey a unique experience to others. They all knew I was still recovering from surgery. One class in particular was good about telling me to sit down already when I kept walking around to work with them.

I tried my hand at explaining the phenomenon of the muscle spasms. “Have you ever seen those videos of hot lava, once it’s flowed away from the volcano? How the lava cools on the surface, but you can see it slowly shifting around underneath that surface?”

They nodded their heads.

“Well, it feels like that.”

I got a lot of shocked stares. “You mean, it feels like your muscles are on fire?”

Well… not exactly. I tried a different approach.

“Who in this room has some kind of metal implant in their body?”

To my mild surprise, several kids raised their hands. One had a few screws in his hand. Another had scoliosis as a child, and now had a rod in her back.”

“And, can you feel it?”

“Yeah, of course. If I twist really quickly I can feel it bump up against my spine.”

This got even more weird looks from classmates, and a couple of gasps. The student and I shrugged at each other.

So, what’s the point of this story?

I still haven’t really figured out how to explain to people what it’s like to have your body get used to a foreign object. I am still saying, on occasion, “I wish I could have you feel what this feels like.” Not to take the pain off of my hands, but just so someone could get it.

And yet: I’ve come to realize that one of the strange gifts of this whole experience is that I get it, with “it” being many kinds of physical trauma. I know how to coach someone through physical therapy that takes months. I can commiserate with new moms who have had an epidural, because I got one after my surgery. And when a close friend of mine had to get bone surgery herself, on her hand, I was there when she woke up in the hospital, there to tell her that the pain would pass eventually.

So it’s not so much that I am seeking to explain to people what this experience is like. It’s more that if and when they come into it themselves, I am here to greet them and help them make sense of what on earth is going on. I have a small lead on them, but I am still figuring it out myself. Which is kind of the point: I am still me, because I am still building who that person is.