This is the first of what I hope will be a series of guest posts by writers sharing their experiences as patients, care-givers, family or practitioners.
Today’s post comes from a friend whose inspires me to try and think differently about what it means to be a patient—and about the ways in which the doctor-patient relationship is only part of a larger script desperately in need of revision. She chooses to share this story anonymously.
It starts with a date on the calendar that you see out of the corner of your eye.
No, actually, it starts in your doctor’s office, your oncologist sitting across from you with your thick medical file resting in the crook of her arm, back when you had a paper file; now she sits across from you scanning the computer screen.
You know it’s coming, as she reports, “Well, it looks like it’s been [insert three months, six months, almost a year, depending on the direness of your current situation], it looks like it’s time for an [echocardiogram, bone scan, CT scan, PET scan, MRI, depending on the current situation]. Maybe you were expecting this; maybe you knew it was time. Or maybe you’ve forgotten, temporarily, that you are the kind of person who gets scanned and it puts you in your place.
“Oh, okay,” you might say. Or you might go for sarcasm: “Yay!” Dr. Clarke looks across at you with only a hint of humor. She knows more than you do about this process: how the scans work, how to read the resulting images and the report of the radiologist that goes with them. She can explain it to you if you ask, and probably has, not that you really remember or, though you understood at the time, could explain it now. She knows what it is like to tell patient after patient that it is time to be scanned. In this room, in other rooms like and unlike this one, she has sat with patients in relief and anxiety and fear. She knows what it’s like to make that call or to look you in the eyes and report after, what the scans have seen. She’s done this with you, so many times. Has she ever been scanned? You’ve never thought to ask. Would that be inappropriate, to ask?
Though sometimes it starts because you’ve initiated it; because there is a mysterious pain and either it seems suspicious enough or it’s almost time for a scan anyway and so rather than saying, “Let’s just wait a while and see what happens,” Dr. Clarke says, “Well, let’s do a scan.”
I remember my first CT scan as a cancer patient not because it was scary, but because looking back I now know that I didn’t know enough then to realize that I should have been afraid. David was there, as he had been, in so many examination rooms, but then so was the pastor of my church, and I remember thinking, “Why is he here? Is this really necessary?” My father is a minister, and so I knew that they are always at hospitals, visiting parishioners, so I chalked it up to that, mostly. But then I also thought maybe it meant I was supposed to be very afraid.
Why wasn’t I afraid? This was the scan that was supposed to tell them if my cancer had already spread. I knew enough to be afraid of that. Looking back, what I think was going on here, is that I was still untouched enough, still 34 in the way that I had been 34 a few months before, to assume that it was reasonable to expect that it wouldn’t get worse, my prognosis.
Scan days seal you into closed spaces. The air is stale, the sun comes in hot through thick glass panes in the waiting rooms that have windows, though scans don’t tend to happen in rooms with a view. Scanxiety, I’m sure, can be experienced in many different ways. Sometimes I think that I have the opposite of scanxiety. I shut down, my thoughts turn syrupy, I can feel my body flatten, the way my cats hunker down in the carrier when we take them to the vet.
There’s a script to be followed, in the transition into the scan. You will encounter volunteers, intake professionals, nurses, and technicians. You won’t always be sure which is which. You might see the same people repeatedly, but it might be a new person at any given time. It is not a satisfactory occasion for interaction, and it is difficult to form meaningful relationships under such conditions. The same must be true on the other side of things. How many people must they see in a day, being scanned for however many different reasons? The nurses will be, on the whole, very friendly and kind, and it will be embarrassing to you that you have a hard time remembering if it will be Sue, Emily, Karen, or Rose who works in the bone scan intake or the CT annex waiting room. They seem understanding about this, though, and reintroduce themselves to you every time. None of the nurses, apparently, have last names. Your own heavy-lidded calm makes it difficult to respond sincerely to whatever cheer they might offer.
There are injections, and/or things to drink that come in different flavors. Do you want banana, vanilla, multi-berry? None of these things will actually taste like their descriptors, so you don’t need to worry about ruining a flavor you like. If you are getting an injection and your veins are small, you might need to think ahead. If you have a port catheter, remember to tell them that they should put in a call to the nurse who is authorized to hook it up or you’ll be sitting on the slab with your pants pulled down while they get her. If you no longer have a port catheter because it malfunctioned and floated around in your heart for a while before they figured out what was happening and then removed it in a daring procedure that they called in other surgeons to watch, then think about your veins. Have you been drinking enough fluids? You don’t want to make it hard for them to access your veins, or they might tell you that you need to get a port again.
The way it should go is that you have your scan and you thank the nurses and technicians and go home, and then the nurse calls you and tells you that Dr. Clarke said to let you know that nothing has changed and that everything looks great. Then you tell David and you give each other a high five and say, “Yay, let’s not forget about this moment—let’s celebrate,” and then you forget about this moment because you really need to get those papers graded, and I guess let’s just have spaghetti tonight, we’ll celebrate later.
Sometimes you are radioactive, because you’ve had a bone scan injection that is delivered in a special lead sleeve. The sheet of instructions you take home with you tells you that you can resume your normal activities and you aren’t dangerous to others, but that you probably should stay away from children and be aware that you might set off the alarm systems at an airport if you were going to travel that day. You might wonder if you probably shouldn’t hold your cat, or if it is really ethically suitable to go to that committee meeting.
Sometimes the barium in your digestive system causes embarrassing noises and requires frequent trips to the bathroom, and you knowit isn’t ethically suitable to go to that committee meeting.
Sometimes it takes longer than it seems like it should for the doctor’s office to call you back after your scan, and you wonder if that means something is wrong. This is the point at which you realize that that slowed-down feeling you’ve been experiencing isn’t calm at all, but a stasis immediately available for transition into feelings you more readily experience as panic, such as racing heartbeats, sweats, nausea, irritability, unexpected crying, and inability to focus on your grading.
My friend Catherine once asked me if seeing references to cancer unexpectedly in the world was hard. We were walking on campus and had just passed a lawn sign advertising a “run for the cure.” It had freaked her out on my behalf, even though we hadn’t even been talking about cancer—we’d been complaining about space issues in the writing center. Catherine is one of the few people on my campus that even (that I know of at least) knows I’m living with metastatic cancer. We talk, and I trust her.
Did the sign bother me? Not really—I hadn’t even noticed it. It is true that I experience brief but inappropriately sharp and irrational fear when, paging through a magazine, for instance, I inadvertently come across one of those advertisements for a hospital that features a kick-ass cancer patient front and center that personifies cancer and has the patient address cancer directly—have you seen those? They say things like, “Cancer, your days are numbered!” or something empowering that’s supposed to make you want to go to that hospital. Those ads do freak me out, and I tiptoe past them and try not to make eye contact with the cancer patient models. It’s the power of jinx: you don’t taunt cancer—don’t draw attention to yourself! Why would you want to antagonize or menace cancer? Look away! Look away!
But I’m not usually like that.
The thing that gets me is pregnancy; I mean the fact that I will never have one of those. The loss of pregnancy, fertility, child-rearing is gargantuan. And it is its own thing. And I can’t even begin to talk about that here.
But it has also been deeply embedded in the divide between illness and health, for me. In the obvious ways, as you might expect, because my cancer treatments deliberately counteract my ability to have children because my fertility became part of the problem that my cancer treatment was trying to solve. So there’s that.
But there’s also because speculative pregnancy was such an unexpected player in the story I had to tell my husband about what might be happening to us, before we even knew what was happening to us. We had been married just over a year. We were in the kitchen, and I had to tell him that there was a cyst—we thought it was a cyst—and I needed to get an ultrasound, but that it was probably nothing. So I started by saying I needed to tell him something about my doctor’s visit and I saw it but I kept talking—I plowed through and things went on and we never talked about what I saw.
What I saw was the same thing on the faces of friends and colleagues when I first told them the slightly modified version of that story, over and over, once we knew it wasn’t a cyst, that began, “I need to tell you something . . .” which at that point continued, when I saw that thing, the corrective, “It’s not a good thing,” which was the slight smirk of someone who thinks you are about to tell them that you are going to have a baby. I haven’t been quite able ever to shake these linked memories; I’m good at forgetting things but this constellation lingers. And it lingers in the story I tell when I have to remember how long I’ve been living with cancer, when I make the calculation that it is twelve years, for example. The child that I might have had rather than having cancer, the twelve-year old. So there’s that.
And then there’s one more thing. A story that really helped me, initially, as I was making my way through chemotherapy and surgery and baldness. A story told by many tellers, in different configurations. It would be accompanied often by a picture, a picture of a young, stubby-haired woman with a baby on her knee. It was told in online support group forums and on websites for young women with cancer. It was (and is) such a good, good story. But it wouldn’t be mine. And the story that helped me make it through those losses became another kind of loss.
So that’s a long answer to Catherine’s question, and I didn’t go through all of that when she asked me if references to cancer freaked me out. But I have to go through all of this to fully explain why it is hard when, on the form you fill out before you have your scan, you are asked if it is possible that you might be pregnant.
No, it isn’t possible. But they don’t leave it at that, and I do understand why. At least what I do understand is that you don’t want to scan a forming child: makes sense. And the hospital doesn’t want to get sued, and so if you fit the profile of someone who might possibly be pregnant and not know it—if you are in your thirties and not on birth control and are no longer having periods, for example—they press the issue.
The first time this happened they required me to take a pregnancy test before they would scan me. If I’m remembering accurately, this was before I knew that I really wouldn’t be able to have children. I remember being surprised by feeling slightly giddy in addition to being anxious and annoyed. What if by some miracle I was pregnant, after all we’d been through? That would be interesting. I knew I wasn’t pregnant. But the idea of the possibility that I could—someone else was convinced enough that I could that they wanted confirmation that I wasn’t—was very powerful. I wasn’t, and we proceeded from there.
I had more and more scans. And it took me by surprise, every time for the first few times, when once again they were not believing me when I assured them that it wasn’t possible. Then it got a little old. And it became part of the broader trauma of getting a scan. Knowing it was coming was no better than having it take me by surprise.
But I had David, who listened, and told me to talk to Dr. Clarke. And Dr. Clarke listened, and we tried to come up with a better script: what could I say that would help them hear that it wasn’t possible? I wrote it down. And my therapist listened, and said, “why don’t you tell them what you’re telling me?”
And the next time it happened, I tried to say what I had written down, but I flubbed my lines; it wasn’t working. Karen, the nurse, looked troubled as she sat across from me with the questionnaire in her hand. I changed tactics and did what my therapist suggested. I said the thing that started, “It is hard for me, when . . . “ And wasn’t it possible for there to be something in my file? And Karen listened. She made some notes and she told me she would bring it up in “the meeting.” And she must have because the next time they believed me when I told them that it wasn’t possible. I learned Karen’s name.
And things went well for a long time, despite the part about having cancer.
And then two months ago, in the vestibule of a claustrophobic trailer parked up against the side of the hospital, where they keep the PET scan machine, it happened again. No, it wasn’t possible. No, I couldn’t remember when I had my last period—it had been years and years since I’d had a period. No, I wasn’t on birth control but I was on several medications (see the provided list on the form) that suppressed estrogen. Chemotherapy sent me into menopause before that, even. It’s in my file. Do I really have to tell you the last time I had sex?
The nurse was getting frustrated with me. She was considering sending me for a pregnancy test. I couldn’t remember my script, and I didn’t know what else I could say. There was no way I was going to take a pregnancy test. Her compromise, written on the form that she then placed next to me on the table:
Patient reports that she is infertile.
The scan went fine. A nurse called to tell me that Dr. Clarke said that nothing had changed and that everything looks great.
But I am at a loss. To whom do I go now? Who needs to listen? These transitory experiences, these interactions outside of the physician/patient relationship, have stories to tell and scripts in need of revision.
Jared Gardner is a professor and patient at the Ohio State University.