May 24, 2022

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When Cancer Broke My Spirit

“MARIA MADE A LIST of things she would never do. She would never: walk through the Sands or Caesar’s alone after midnight. She would never: ball at a party, do S-M unless she wanted to, borrow furs from Abe Lipsey, deal. She would never: carry a Yorkshire in Beverly Hills.”

I came across Play It as It Lays in my high-school library when I was 16, and I cut two or possibly three classes to read it. God, I hated high school. I wanted to read, but they wanted me to sit at a desk and talk about “side, angle, side.” I found Joan Didion’s novel electric, bleak, ravishing. More than that: essential.

There I was, on the cusp of womanhood, of being a sexual creature—and in the nick of time, I had stumbled across this invaluable guidebook. In the girls’ magazines, all you ever read about was “boys who only wanted one thing” and how you should be grateful for strict parents, because imagine what would happen to you if they didn’t care enough to give you a curfew? But Play It as It Lays introduced me to what were obviously the real perils, the important ones that the adults were keeping from us. Bad, terrible, unspeakable things that I’d never even considered. Balling at parties! S-M! Yorkshire terriers!

I can remember whole passages from the book, but more than anything that series of she-would-nevers. Over the years, I have come up with my own list, ​​as square and tame as I am:

Caitlin would never call a boy unless he had called her first. She would never change into or out of a bathing suit in a communal dressing room. She would never watch Star Wars or any of its sequels, cut a dinner roll with a knife, become an alcoholic.

And, for the past 20 years, the list would include one extremely important never: Caitlin would never write in detail about the painful, unacceptable things that she has had to endure in two decades of cancer treatment.

At the time of my diagnosis, I was just beginning my career as a writer, and for some reason I thought no one would ever hire me if they knew I was sick. I was also superstitious, and felt that writing about the disease during a period of remission was tempting the gods. Plus there was the problem of sadists: Letting personal information like that out into the world gives cruel people a loaded gun.

Lately, though, I’ve begun to see that no matter how much I have tried to pretend that cancer is an aberration in my life, an interruption after which life will return to normal, it never has and it never will. When I turned 60 last month, I had a sorrowful realization, one that might have come sooner if I’d spent more time plowing the cold fields of “side, angle, side” and its attendant concerns. I realized that I’d had cancer for a third of my life. It never went away, it’s never going away, and I will be on chemotherapy for as long as I live.

It’s bracing to face those truths, but I rarely spend much time dwelling on them, because I’ve known—and known of—so many women who have died of breast cancer. I had the strange good luck of getting diagnosed with what was once a particularly dangerous strain of the disease at the moment that scientists were beginning to break its code. So long as I keep my mind on that fact, I’m okay.

But a few weeks ago something happened that finally broke my spirit. For the first time in this endless war, I felt like deserting.

What happened is I lost some teeth.

It was a shocking event, one that had nothing to do with a cancer recurrence or with my overall health; it was just far downstream from some of the endless treatments I’ve had over 20 years, a side effect I’d never considered. I was finally ready to give up.

Game, set, match: cancer.

This is the horrible part of the essay where I have to give you some dental information. Believe me, I tried to keep it out, but the story doesn’t add up without it.

Decades ago, when the world and I were young, I had to get a dental bridge. Basically that’s what they give you if you have a missing or—in my case—funky tooth. It’s sort of a fake tooth anchored to the two teeth on either side of it. Let’s skip why I needed it. (No, full disclosure! Exposure dream! The reason I needed the bridge was that the middle tooth was a baby tooth. There was a time when I thought that was an adorable little fact about me, although now I realize it’s just more evidence that I have lived my life in a Ford Pinto of a body. Nothing has ever worked right.)

Back to our story, already in progress. Over the summer, I had a pain underneath my bridge. That can’t be good, I thought. It wasn’t just that it suggested some nasty procedure; it was also that for many years I’ve been on a powerful drug called Zometa, which has a rare but ghastly side effect: It can lead to a hideous thing called osteonecrosis of the jaw—so you have to take excellent care of your teeth. Thankfully, it turned out I did not have osteonecrosis of the jaw, or anything like it. I had a cavity. The dentist took an X-ray and said she would just need to remove the bridge, fill the cavity, and then make a new bridge.

This sounded straightforward enough, but I delayed doing it for a couple of months because my husband and I immediately set to work creating some new material on the subject of “on-plan dentists” versus “off-plan dentists.” He wanted an on-plan dentist to curb the cost, and I wanted a dentist who had nitrous oxide so that I could open the doors of perception. In the end we compromised, and I went to an off-plan dentist without nitrous oxide.

By the time I was finally in the chair, not only did the tooth really hurt, but it was also the most absurd time to have a dental procedure. We were moving to a different city—just an hour away, but still a move—that very day.

The assistant clipped on the little drool bib; the nice, young dentist gave me a shot of novocaine; and we were off to the races. At first, a lucky break: The bridge came off easily. The dentist started drilling and I started listening to a friend’s podcast. It was nice to feel that she was there with me. But then something strange happened: I got all the way to the end of the podcast, but the drilling continued. We kept having to stop for more novocaine. I listened to another episode and got to the end of that one too. More novocaine. The appointment seemed to be taking a really long time.

Finally, in the words of the very long note the dentist wrote in my file, which I had to later take around town, showing it to different experts, she “sat patient up and told her it was hopeless.”

Hopeless?

There was a big television on the wall, which had previously shown a calming image of bamboo ​​shoots beside a babbling stream. That image came down and was replaced by an enormous photograph of the place in my mouth where my teeth should have been.

The middle tooth was gone, the one to the left of it was a small stump, and the one to the right wasn’t any bigger. There’s a reason that dreams about losing teeth are so common; I felt that some elemental part of me, something I couldn’t live without, was gone.

The dentist put a temporary bridge on my teeth and scheduled another appointment with an expert. My son came to pick me up, and I did what I always do when my kids collide headfirst with my health problems: I joked around and assured him that everything was going to be fine. But I was out of my mind with shock. It took forever to fill my prescription for pain medication, and as we drove and the novocaine wore off, I felt I was in a frantic race against some terrible kind of suffering. ​​(Though in the end I didn’t need the pain meds at all. My teeth hurt less than they had before the drilling.)

At last I got to the new house. The moving truck had just arrived and all I wanted to do was lie down and weep, but there weren’t any beds yet. I didn’t know anyone in the neighborhood, and I was in no condition to go to a coffee shop. It felt like the whole family was moving into an exciting new chapter—one that had been my idea—but I was being left behind.

I holed up in my empty bedroom and began calling the group—the women who have been with me this whole, long experience. Everyone was extremely sympathetic, but none of them seemed alarmed. This had nothing directly to do with cancer, and my life wasn’t in any danger. These are people who get in cars and book flights whenever bad cancer news arrives; my older sister just teleports into my kitchen before I’ve even picked up the phone to call her. Nothing I said could convince them that this was more than a setback.

What people don’t realize is that all of the treatments I’ve been through these 20 years have added and added and added up. It’s as though each one is a porcelain cup, and each of those cups has been stacked one on top of another. One more piece of bad news could bring them crashing down.

The teeth hadn’t broken my spirit; it was all of the things that had come before. The surgeries and the radiation and the gallons—literal gallons—of chemotherapy that have been poured into me, and all of the vomiting that came with it. (Had stomach acid gotten under the bridge and eroded my teeth? That was the horrible supposition of one of the doctors I saw.) It was crossing the Styx: from Stage 3 to Stage 4, and watching the boat return to the other shore without me. It was finding out that I would be on chemotherapy for the rest of my life. It was the ports that brought powerful drugs straight to the vein to my heart; the uncountable hours I’ve sat in chairs hooked up to machines; the waiting for blood counts, scan results, biopsies, bronchoscopies. It was finding out that there was cancer in my spine and in my lungs and in my liver. It was losing my hair—twice. It was all of the times—50? Could it be 100?—that my body has slid slowly in and then out of PET/CT scans while I’ve lain flat, with my arms raised above my head in a posture of pure surrender. It was all of that and more. And on top of that—my teeth? No.

My oncologist sent me to one of the foremost authorities on my weird situation, a doctor who works at the UCLA School of Dentistry and who has an M.D., a D.D.S., a Ph.D., and a long list of publications. I drove from Pasadena to Westwood, the kind of overland passage described by the early settlers, and I wasn’t myself. Now I understand stories that start with things like “I saw her that afternoon! She seemed perfectly fine!” It wasn’t that I was suicidal. But I wasn’t right, and my thoughts were dark.

All of the garages were full, so I just drove brazenly into a parking lot marked with signs saying no one could park there unless they had some very rare, very particular kind of permit. My only concern was that someone would stop me from getting out of the car, but no one did. What was the worst that could happen? I’d get a ticket? The car would get towed? I was at high altitude and dropping ballast. I could do without the car.

I was led to an exam room, and the very expert person walked in. Never have I been given the facts of a medical situation so succinctly, so definitively, and so dispassionately. I felt as though we were colleagues looking down at an anesthetized patient.

She said: My dentist would need to make a four-tooth bridge instead of a three-tooth bridge, but it might not work, because these are notoriously problematic. I could have had one of the bad teeth extracted, which for some reason would have been helpful, but extraction was too dangerous because of the Zometa. And then she said the thing that brought the tower of porcelain cups crashing down:  If the bridge didn’t work, I would have two crowns with a two-tooth gap in between.

I sat quietly waiting to hear what was going to replace the teeth, but she wasn’t saying anything so I nudged her helpfully along—implants?

No, no—I could never have implants, because of the Zometa.

“But what about the space?” I asked, mystified.

Well, she said, maybe your dentist could make you a plate with two teeth on it.

Many years ago, I had a terrible habit of wasting my valuable time with doctors by getting overwhelmed, by crying, by needing to be comforted. Doctors are busy; doctors expect you to do your part and behave like a normal patient. Cry too much and you’re a problem, and there’s another downside: If they see you’re someone who can’t handle bad news, they won’t talk as freely with you as they might. They will still tell you the truth, but they won’t elaborate. If you can handle your shit—and I can—they’ll let you know what they’re thinking before the test result arrives. So with the expert dentist I carefully continued behaving like a normal patient, without giving any cues that I was slipping past her, that part of me wasn’t in the room anymore.

I tried to look like someone who would willingly go through life with two teeth on a dental plate. I am not that person. The dark thoughts got darker.

When I got outside, the car was still there, with no ticket, and let that be a lesson about the randomness of the universe. No one can tell you why you got cancer or why your teeth fell out or why the eagle-eyed parking patrol of UCLA didn’t notice that you’d parked in the most conspicuously forbidden spot on campus. There’s no underlying pattern.

I am not a person who would ever do anything drastic or horrible to her family. Caitlin would never: commit suicide. Caitlin would never: leave a mess. But I was in a state of extreme distress, and for the first time in my life, I wasn’t able to explain myself to people. No one really understood the extent of my emotional crisis. Somehow I needed to register to myself that what was happening was unacceptable and would not be tolerated. Someone needed to stand up on my behalf, someone needed to tell me that all of this was really beyond the pale, and there was no one but me to do it.

I had not touched the pain meds—Tylenol had done the trick. But now I took out the bottle and opened it. All of America—scarred by the opioid epidemic and by all of the people who have started with one pill and ended up dead—screamed, “Don’t do it, Caitlin!” but I didn’t look up from the child-proof cap.

I swallowed one pill with a cup of water, lay down on my bed, and waited for it to take effect, wondering if it would have an answer to my problems. It didn’t have the answers, because it obliterated the problems. It produced the kind of warm, dreamy euphoria that can never be described in words. Even now I don’t really remember how I felt, only that at last everything was all right. After 20 years of hideous drugs, I was finally taking one for no other reason than the pleasure it might offer me. What was the worst thing that could happen? I would immediately become dependent on them, accidentally overdose, and die? For some reason, I was confident that it wouldn’t happen.

It wasn’t until six hours later, after I’d taken the second pill, that I realized why. It’s because I am violently, wildly, incredibly intolerant of opioid medications. The first dose had been small enough to push my boat out from shore a little bit, but the second one brought on the storm.

I threw up all night, and scared myself enough to throw out all the pills the next morning, which I did by following the directions on the CDC website: to mix them into a bag of used coffee grounds or kitty litter, both of which are never in short supply at my house. For extra punishment, I used the kitty litter and created a concoction so loathsome that I felt the bile rising again. Then I stuck the barf bomb in the bottom of the trash. And with that, I came to my senses, and my mood downgraded from despair to depression.

A couple of teary weeks went by, and soon enough, it was time for a Christmas tree. Somehow the rest of the household understood that they should go out and get it and bring the ornaments up from the garage and put up the outside lights. I still felt very raw and desperate, but now the men in the house had picked up on the fact that I was really struggling, and they began to look after me. We regressed into watching The Great British Bake Off after dinner, and it was nice to sit in the new kitchen—all my life I’ve wanted a kitchen with a couch and a television, and now I have one—with the family, shit-talking Paul Hollywood and taking a personal, almost tender interest in each of the bakers. Every night, when one of them was eliminated, we would shout, “No!” and it would seem impossible to imagine the show continuing without that person, but by the next night, we couldn’t even remember who had left. The program moved steadily forward, and whatever space the missing person had left was more than filled by the people who were still there. And let that be a lesson too.

Watching those episodes, in the warmth of the kitchen, I couldn’t deny that everyone in the room would love me just as much if I didn’t have a tooth in my head. For the past few years, I’ve wondered why I keep doing all of these crazy treatments now that my children are grown. But I realized that I’m still a necessary person, and what’s necessary is not screwing up their good lives with any drama or anguish. Since I started writing about cancer, I’ve heard from many people who lost their mothers to the disease when they were in their late teens or their 20s, and how much they grieve for them and for how long. It’s not right for me to complain and give up hope when I’m the one to whom the random universe has given the miraculous treatments.

The four-tooth bridge has arrived at the dentist’s office, and after the holidays I’ll go for the appointment to see if it will work. And I found out—get this—that it wasn’t necessarily cancer treatment that caused the problem. Apparently teeth under bridges go bad all the time, for all kinds of reasons. Not only that, but as I talked about my situation with more women my age, it turned out people were losing teeth left and right. One friend had a front tooth fall out of her mouth when she was eating dinner. Apparently, incredibly, I’ve been alive so long that I’m getting old. Look at me over here, “aging.”

I’m okay, fine—I’m good. The house is nice and I love my new town, and I finally remembered to get the poinsettias early, before they’re all sold out, and my husband went with me and we filled the back seat of his car with them. But still, so much has happened to me, and now those teeth are gone. And ever since that morning at the dentist’s office, two lines of poetry have been with me almost every day. They’re the last lines of a Robert Frost poem, “The Oven Bird”:

The question that he frames in all but words

Is what to make of a diminished thing.  

https://www.theatlantic.com/health/archive/2021/12/cancer-teeth-loss/621103/