Were someone to ask me now, after it all, the feeling of a dying organ, I’d still struggle for words. It might be better represented in sound. Something discordant, soft then growing louder but unnerving. You’d want to get up and move around; walk it off. Even better—a drawing. One panel: a swimmer moves about on the surface while underneath a large, dark shape lurks. Nothing yet has happened—but it will. The large shape kicks closer then recedes, in and out of focus. Impending doom.
I would not be the swimmer, or the shape, or the water itself—but the totality of the thing, all of it together—about to become terrible.
I was doing what they asked of me. Waiting. I didn’t think I should be waiting but what did I know? I was the one in the gown, with the pain, not the one holding the clipboard, making decisions.
Initially, I’d had short, sharp pains in my abdomen—distinct and obvious. I tried to reshuffle the order of my body as I sat in my chair at work: lift up my ribs rather than rest them on my stomach; shift backwards and stretch out the line of my body; pull my head up like it was tied on a string—none of these movements helped. This feeling, like a cord stretched to its limit, would not go away.
I called my doctor’s office to get an appointment that day.
“It’s probably your appendix,” said the one available doctor, noting pain more on my right side.
“Let’s get you downstairs for an ultrasound. They’ll get you in-and-out, then you can come back here, and we’ll go over it.” He nodded reassuringly and I felt some relief with the possible diagnosis.
When I came back though, thirty minutes later, his mood had shifted. He stood at his workstation and there was no avuncular looking it over together. We stood right there in the hallway as he explained: “Call a surgeon,” he said flatly, shaking his head. “You’ve got an eleven-centimeter mass in your abdomen.”
“A surgeon?” I asked. I imagined quiet conversation and time consider options. Mostly I imagined time to think. When I asked him if I’d be able to work the next day, he looked dumbfounded and repeated, “You need a surgeon.” I was thinking about the wrong thing.
Even in this swirl, I noticed a question looming there, just say it, just ask him, “But it’s not cancer?”
Was I even supposed to say the words? Admit its potential in my mind? I was in superstitious territory, maybe this was like the devil, or rain, you speak it and there it is.
I watched him, studied him the way the rabbit studies the hound, alert to every twitch. He shifted his weight backward, away from me and averted his eyes. I thought, I am in trouble. His words were nondescript, something like, “We don’t yet know,” but the body language read, get it together, this is bad.
The chaos in my head made me feel like I had taken off on a merry-go-round, fruitlessly searching for a still point and trying not to throw up.
I was still grappling with his initial directive: call a surgeon. Like there wasn’t even time to go find one, I needed to be talking with one already. And already I was behind.
I did call a surgeon. I remembered I knew one—my OB—I’ll call her Dr. A, someone I’d known since I was eighteen years old. But she had just retired from doing surgery. She set me up with one of her partners—Dr. B—for later that day.
Dr. B looked me over quickly. I told her of the pain and that I was having trouble eating. She felt my pulse, looked at my tongue, checked my chart and said, “Hmm, I’m going to admit you to the hospital. Wait here.”
I waited two hours to be admitted, like waiting for a hotel room to be cleaned and cleared. I sat in Dr. B’s waiting room, eyes closed, willing every part of my body to slow down. I was getting myself to the place I needed to be. Slow, steady breaths, one by one. I could make it; I would make it. When the bed was ready, I walked slowly over to the seventh floor.
Before I went up though, I found the hallway with my dad’s picture in it. It was an old hallway connecting buildings off the beaten path. There—housing the photos of the Chiefs of Staff for the hospital—was my dad. He had died twenty-five years before from a brain tumor. But in this realm—his realm—he sat still and confident. Handsome and familiar. I made a silent plea, help me. I so wanted him looking over my shoulder. Then kept my steady pilgrimage to floor seven.
The nurses seemed surprised to see me. I said, “Hi, I’m being admitted. I’m a patient. My doctor called earlier.” I felt a need to explain myself as they looked doubtful, pursed lips, sharp tilt of the head. I seemed to be doing this all wrong.
But they checked “the board,” and there was my name. I had a place. Their faces eased; I got into a gown and slowly laid back into bed.
I was dehydrated, hungry, and panting to get my breath, butterfly pulse. Once I had an IV and pain meds, Dr. B came in at the end of her day.
“Wow, you look so much better. I thought you were crashing. We’ll get you an MRI, maybe do the surgery tonight. I should get the results around 11 or 12 tonight… Don’t eat anything.”
Thank god. I was in the right place.
At 11 o’clock at night I went for my MRI. Heavy and motionless on my bed, I let myself be rolled through dim corridors. From the safety of that bed, I moved through space without any need to steer or watch for corners or even know where I was going. It was quiet and peaceful.
The technician running the test spoke to me like I knew him, a friendly surfer-dude kind of guy, “Have you seen the size of this thing?” he asked, referring to the mass. I was scared, almost frozen—except for the bit of padding from the anxiety meds—but he wasn’t. He was curious and unafraid—of course, it wasn’t his body. But for some reason his casual demeanor and off-handedness helped me feel less afraid. This, whatever this was, was a thing that could be looked at.
“It’s huge,” he said, “like eleven centimeters. You can’t feel it? …You didn’t know it was there? Does it hurt?” These were all mildly intrusive questions, but I didn’t mind. Instead, I felt he was witnessing the same surreal event that I was in.
I was thinking how crazy it was to go from sitting in my office in the morning to possibly getting the surgery that night. But I still hadn’t heard from Dr. B about the surgery. When they admitted me, they had asked all sorts of questions, including what my last meal had been. I didn’t think anything more about it.
As the next day dawned though, no one mentioned surgery. It was odd. The idea just seemed to have evaporated like cloud cover. Because I was so hungry, I ate the breakfast they brought in without question. When the doctors came in to do their rounds, they asked again about my last meal—something with pork.
This was garnering an unusual amount of attention. Dr. B and another one of her partners explained that they thought my stomach pain and discomfort were from the pork itself. I said, “Oh, in general, I feel really off. I can’t eat very much. It doesn’t feel right… It’s like I can feel my food not digesting. It just sits there. I can’t put any more in my body, even though I’m still hungry. And then, after some time goes by, it’s like it turns a corner and I can eat a bit more.”
They looked puzzled—blank faces—in response to that. I was angry at myself for sounding stupid, the food turns a corner, I had said that? I was puzzled, but I was trying to put into words what I actually felt in my body. The doctors revealed nothing of their thoughts, besides the culprit of pork.
But I felt a growing distance between myself and them. I was having such a hard time describing what I felt in my body. The words I had were all vague: I said things like, I felt strange, not right, off. The words came out blunted, like a knife under a towel.
I worried I had become unreliable in their eyes. As though collectively they decided, she’s not making any sense. Whatever it was that happened in that conversation, I’d lost them.
They were sending me home. I didn’t particularly want an emergency surgery—but home? They said it was better for me if the surgery could be planned, rather than hastily done.
Dr. B put me in her surgery queue. This now meant I’d have to wait three weeks—I’d gone from surgery tonight to three weeks.
Something else was holding me back. I feared pushing them. Bugging them. Insisting they push me ahead. I worried my pushing would be found “unnecessary” —by what standards, I’m not sure. Or that I’d be found lacking, that I should have waited. Should have tolerated the pain.
I was trying to keep them on my side. The last thing I wanted was the doctors handling my care to be annoyed with me. In the most basic terms, I was dependent on them. I could not deal with this myself; I needed them to get it out. There was a delicate balance of working with people who had more power than me. I didn’t want to be viewed as a difficult patient, losing that trust could be bad for me.
Dr. B said “I’ve got you in my list now. Your surgery will be in about three weeks.”
I said, “Oh ok. Is it possible to get in sooner?” Just asking, don’t mind me.
“Well, if I were to move you up, I’d have to bump someone else from their surgery.” Flat-eye stare. Ah, that was it. She didn’t want to move someone else. She wanted me to wait.
They told me to wait. And I let myself be talked into it.
That makes it sound as though there were a choice. As though my reaction would push it one way or another. This was not true. A couple days later, even Dr. A spoke on my behalf to Dr. B, to say she did not think I should be waiting. That something wasn’t right. But nothing changed.
They told me to wait. So I waited.
I went home; took a week of bed rest, then returned to work. After a day of sitting and listening to my own patients, my abdomen was so tight, I felt exhausted from the tension. I felt bad. Off. Those same vague words!
If I wasn’t at work, then I was in bed. Each day becoming more difficult. I could eat very little—a half cup at a time. Sometimes at night, I’d feel so bad I’d be back to shallow breaths. The cord stretched tight. The coming and going of the pain also confused me and made me doubt myself. Why was it changing? How could I push them if the pain was like a moon waxing and waning?
It is so obvious it’s almost not worth saying, but no one else could feel what I was feeling in my body. No one else could jump inside my skin. Even something like the pain scale—made to look objective and scientific—is dependent on the person. Is this a reported “8” coming from a dramatic person, or a stoic one. The “8” only really means something in relation to the person saying it. No one can give the provider the context of themselves—even if they were somehow able to express it, it would not be believed—something like saying, believe me: I’m believable.
All this doubt and pain and feeling responsible for my condition brought out the little kid me, standing at the foot of my parents’ bed telling them I couldn’t sleep and that my tummy hurt. In my mind, I was bothering them with my unruly feelings and needs. I’d be met with disappointment and why can’t you just handle yourself.
I actually think I wanted those doctors: Dr. A, Dr. B and all their partners, to feel proud of me. Wow, she’s tough. She sure can handle herself.
My problem was I couldn’t see myself. I couldn’t step back enough to know it wasn’t about my pain level at that minute or even that day, but the massive tension and sense that something was wrong that I was bearing day in and day out. I couldn’t eat. I had no energy. I did not feel like myself. And this was worth pushing them.
I had one more appointment with Dr. B about a week before the surgery. She wanted me to do some routine bloodwork before surgery. Sitting back in her office—exactly where I’d been two weeks before—I could recognize how horrible I felt and the stress of waiting for this surgery. As she discussed the surgery, she mentioned that sometimes patients’ have “necrotic masses.” She wasn’t sure I had this, but explained it was when the mass is dying; it loses blood flow internally and really feels horrible.
I looked at her. “I feel really horrible,” I said. She nodded her head, agreeing without feeling, without looking at me. She repeated, “In those cases—with the necrotic mass—it’s like a dying organ. And those people really feel horrible.”
She spoke with such empathy for those people. But somehow those people were not me in her mind.
I was too slow to catch this in the pace of our visit. Before I knew it, I was out of the office, on my way to the lab to complete my bloodwork. The downgrading and dismissal of my pain bypassed like an old bus stop. I flew right by it.
One night—about two days after the bloodwork—the tightness in my abdomen was so bad, I called the after-hours, on-call surgeon, one of Dr. B’s partners.
I said, “I have a large mass in my abdomen. I have surgery next week, but I don’t feel right. I feel bad.” Again, the vague, diaphanous, cloud-like words that I could not make sound any more dangerous or urgent.
“I don’t know what you want me to do for you,” she said, irritated and short. “Do you want pain meds?”
I didn’t know what I wanted, specifically. But I wanted help. I felt charged with deciding what she should do for me. I wanted her to figure out what I needed.
“You can come in… We’ll cut you open. But really your surgery is just next week. It is better if you can wait.”
I felt presented with impossible choices—we’ll cut you open? This was said as though she was concerned for me, it’s better for you to wait, but she pushed me away without care.
I back-pedaled out of the whole conversation. “Maybe I’ll just lay down…sometimes if I can relax and breathe, that helps.”
All I wanted was to get away from her. Talking with her was making me feel worse—I couldn’t afford any more stress—nothing that added tension. And I did not want to be cut open by a doctor who was angry with me.
I got off the phone and felt truly alone. I was unsure if I was doing the right thing. I laid down. I breathed. I relaxed—lizard-brain quiet. Stilled myself to the slowest heartbeats I could allow, everything dormant, everything on mute. Hush, hush.
I was stuck inside an idea of being good. Tough. Handling it. Compliant. This was closing in tighter and tighter on me. I did not want to go be cut open, but was it even safe for me to wait?
I thought I might be being very stupid, and perhaps I could die, waiting for my turn and being good.
On the eve of my surgery—that three-week wait finally done!—unbelievably, the surgeon called to say she could not do my surgery. She had received the results from my blood work and it was positive for ovarian cancer.
“I wouldn’t normally do it this way, but you are going to have to find a new surgeon. You need this surgery as soon as possible, so call them now.” She granted there were false positives, “but that’s not what this is.”
I asked if she could call the specialist I needed, a gynecological oncology surgeon.
She answered, “You’ll have better luck if you do it.” Any reference to luck at this point felt particularly cruel. And like that, I was dumped.
I collapsed then, like clothes sliding off a hanger, crumpled in a heap on the floor. This was now worse than they had thought and she left me with only a referral in hand. I felt so angry. I had lost ten pounds waiting for the surgery because I couldn’t eat; I was exhausted, every nerve frayed like sliced rope.
I called immediately and begged the receptionist for an appointment. Most of the group was away at a conference. There was one surgeon—Dr. C—I could meet. I pleaded with the receptionist to squeeze me in—could she ask the surgeon personally, I would wait—my desperation allowed me to push them and make inroads.
I did get a phone call from Dr. A, my original OB, to talk over the cancer markers. She was a singular voice saying, “It still might not be cancer. If that mass is necrotic, that could be what is causing those numbers to be so elevated.” Her voice in that storm gave me a toehold. It left the window open just enough to hope.
Two days later I went for my intake with Dr. C; the receptionist gave me paperwork to fill out, one of which was a mental health screening. One of the questions was: rate your level of distress. I rated it a 10 out of 10. Because of that—which must have sent an alarm straight to the social worker—a nervous woman came out to talk with me—in the middle of the busy waiting room. She introduced herself and started talking about “your cancer” and support groups—in the waiting room. I hated her, kneeling there in front of us. She was a bug I wanted to smash. Cancer support groups!
I told her what I really needed was surgery. I could see I made her nervous—my edge, my scowl—but I couldn’t be bothered.
She was worried I was a danger to myself. I thought: I am not a danger to myself; it’s the goddamn doctors not listening to me!
I walked slowly, painfully into Dr C’s office. She touched my abdomen once. Feather light. I winced from the pain. I imagine she knew the thing was twisted around itself like a bomb waiting to explode. She said she’d do it Monday—her soonest day in the operating room. With her I’d gone beyond words. She listened without needing words.
I had finally found the doctor able to hear me.
In the end, Dr. C said it was a benign ovarian tumor—final pathology confirmed two weeks later. It was looped on the bowel and torsed. The tumor and ovary had become one. It was necrotic at its core, meaning it was losing its blood supply and dying. It had twisted around on itself, and at times the torsion wound tighter and then would unwind—coming and going. The tumor also had looped on my bowel, threading through the switchbacks of intestines. Everything I had felt—all the weird symptoms—had turned out to be true, as in happening in my body. I couldn’t eat—because the mass was looped on my intestines. Food really was stopped in my tract. I felt frightful tension and then release—it was the torsion in the thing. Winding and unwinding like an air sculpture. That fatigue and overall bad feeling, like a dying organ, Dr. B had said. She just hadn’t connected it to my own experience. All the sensations in my body had been the way it was.
I asked Dr. C when she checked on me in my hospital room, “So, grapefruit-sized?”
“More like a dinner plate,” she held her hands out wide to show me.
About six weeks later I was back to see Dr. A about balancing my hormones postsurgery. I complained then about the phone call with the after-hours surgeon and how she had said she’d cut me open.
I wanted Dr. A to know how adrift I had felt after that phone call. Being on the other side of my surgery, I could feel my anger at that doctor, and the others, and her lack of care or concern in response to me.
Dr. A said, “You know, what you had was a classic OB emergency. Typically, we have about 24-48 hours to get that kind of thing out. So many bad outcomes could have happened to you. You could have ‘popped’ a bowel. The mass could have ruptured, and necrotic contents spilled within your body. So many bad outcomes could have happened. I knew you shouldn’t be waiting.”
I listened obsessively. I hung on every word out of her mouth. While the other symptoms had turned out to be the case, so was the sense of danger. As the days and weeks had worn on, I felt like I was keeping myself together by sheer breath and strength. She was describing the very thing I had lived—an unstable mass inside of me.
On the one hand I felt like she was handing me the last, missing piece of my puzzle. But I also was confused—why this had happened? Why had it gone so wrong?
Then she said, “You know, if you had died, the on-call doctor would have felt really bad.”
I didn’t think she could hear herself saying this sentence to me. She would have felt bad? I could have died and she would have felt bad. This was supposed to be a consolation. Honestly?
Witnessed and unwitnessed within the same moment. Something given, something diminished. She was demonstrating the very errors of this human system. How I could be so recognized and then so grossly invisible—almost inhuman—just another death, to her.
I was astounded by my own vulnerability in this event.
It was an emergency gone astray. They misread it and they misread me. The symptoms had all been there. Every single one. I had tried too hard to fit what they wanted of me. If I could change something for myself—other than erase the entire mess—it would be that I relinquish the sense of shame for what I felt in my body. I hadn’t fully appreciated my own knowing, in all its rough, uneven glory.
I had been waiting for them to take me seriously and it almost killed me.
I looked it up once the type of mass it was. A long thirty-two-letter, unpronounceable name. It was rock solid and looked like a bad dream of mashed bone and teeth. Compressed and unyielding. I thought it represented all my unspoken words: questions, anger, shame, responsibility, that had folded in on itself—everything I put back on me. Perhaps now finally out, free.