For My Own Good: Medical PTSD and Me

By Brenda Denzler

When Brenda Denzler got a diagnosis of inflammatory breast cancer at age 56, she was almost as terrified of her doctors and what they proposed to do to her as she was of the cancer itself. 

Fearing and mistrusting the only people who could (possibly) save her life, she found herself trapped in a bad dream from which she couldn't wake

• Language: English
• Publisher: Pocket Angel Productions
• Release date: Oct 30, 2023
• ISBN: 9798989147502

Book preview

Prologue

Fall 2012

The day I unintentionally shut down my doctor’s clinic started with heartburn. Several years earlier I had rather passionately refused to have an upper endoscopy to try to figure out why I had such frequent pain in my esophagus. My doctor, Mary Smith (actually a nurse practitioner), had tried to reassure me that I’d be sedated and unaware during the procedure. To her surprise, that only made my anxiety and refusal worse. Sedation scares me to death. They can do anything at all to you when you’re sedated, and you’re helpless to defend yourself. I had done major surgery without being anesthetized or sedated and routinely had colonoscopies without sedation. I wasn’t going to let my guard down for an endoscopy. And besides, I was also adamant about not allowing someone to ram some tube down my throat while I gagged and gasped for air. So we had been trying an ever-escalating variety of treatments to control my symptoms. But now we were running out of options.

You really need to see a specialist so that you can get an upper endoscopy and find out what’s happening, Mary insisted.

Like I said before, I can’t do that! I responded, feeling my chest tighten with panic.

I don’t remember exactly what was said next. The psychologically savvy would probably say I began to dissociate at that point. I think Mary and I agreed that I could at least talk to a specialist. And we decided I should have a blood draw to check some value or other. So at the end of our visit, I walked a few feet down the hallway to the clinic’s blood lab, a place I’d visited many times before.

As the phlebotomist tied the tourniquet around my left arm and prepared the needle and vials for blood, a few silent tears began rolling down my cheeks. I brushed them away. Oh, don’t worry, honey, she said, patting my other arm reassuringly. This will only take a second, and I promise I’ll try not to hurt you.

It’s not you, I said with a little sob and a gasp for breath. I don’t mind this. It’s just something that Mary said. I don’t think I can do what Mary wants me to do.

I couldn’t do it. I knew I needed to do it. But I couldn’t do it. These thoughts circled more and more furiously in my head. I felt the careless disregard for my person as I was rendered unconscious, becoming a limp slab of senseless flesh on a hard table in some procedure room, at the mercy of whoever and whatever, unable to protect myself. I could almost feel the tube being forced down my throat, and my gagging against the intrusion, and the persistent progress of Dr. Whoever, hell bent on doing this procedure, my discomfort of no consequence.

I tried to banish these thoughts and sensations, but they were too insistent. The tears began to flow harder, and I struggled to breathe between not-quite-stifled sobs. The phlebotomist deftly put the needle into the bend of my arm and quickly filled the waiting vials. The torrent of emotion within me grew exponentially with every passing second. By the time she finished, I was sobbing freely and just barely in control of myself. She looked at me in genuine alarm.

Can I help? Do you need to talk to Mary again?

I couldn’t speak. Just shook my head no and kept sobbing as I tried to stand up and head for the check-out window.

Wait a minute, she said, pushing me gently back down into the chair. Let me find a room for you to sit in so you can calm down a bit. You can’t drive like this. I just nodded and sobbed.

I was vaguely aware of a small flurry of activity out at the nurses’ station. Before long, I was shown into an exam room again, where I spent the next two hours sobbing. Over and over again, I was living through the sensation of having something shoved down my throat and being absolutely powerless to stop it. I felt myself limp, motionless, helpless in the face of this bodily invasion. Absolutely and completely at the mercy of people I didn’t know and couldn’t see.

I was also filled with a mushrooming sense of despair that only intensified my tears. I couldn’t do what Mary wanted me to do, which meant she would be mad at me for being a difficult patient, and she would come to hate me, just like all my doctors at the cancer hospital hated me. It was more than I could bear. I had lost the goodwill of my oncologists. Now I was going to lose Mary, too.

Repeatedly I attempted to reason with myself and calm myself down—to become more of a model patient. Repeatedly those attempts were drowned out by a fight-or-flight response so strong that it threatened to swamp my ability to think at all, combined with an utter and complete despair. When I had gotten cancer three years earlier, I was given Ativan to take as needed for anxiety—one or two tablets at a time. That morning, I finally took four tablets. It didn’t help. They may as well have been sugar pills.

When I was finally cried out enough to be in a state of complete and utter, uncomprehending exhaustion, I was ready to try to drive to work. Mary came in to check on me first. Desperate to mollify the anger I expected from her, I began to apologize.

I’m sorry, Mary. I’m so sorry. I know I’ve tied up this room, sitting here for so long. I’m sorry. I have medical PTSD, and the whole thought of being at a crossroads where I really do need an upper endo or else…. It’s triggered me. I’m so sorry, but I just can’t help it.

They can sedate you, she began to reassure me again.

Mary, I don’t want to be sedated, I interrupted vehemently, struggling to maintain my thin edge of self-control and not break down again into uncontrollable sobs. You can’t protect yourself when you’re sedated! I know that for most people the thought would be comforting. For me, it’s not. It feels like compounding a violation. It feels like placing myself in more danger, not less danger! They can do anything at all to you, when you’re sedated, and you can’t protect yourself!

OK. OK. Well, why don’t you just talk to a GI specialist, she said soothingly. Just talk. That doesn’t mean you have to do an endoscopy. But maybe he’d have some other ideas about how to treat this, because I’m out of ideas.

I agreed and, grabbing a few more tissues from the nearby box, I walked out the exam room door. The halls, normally bustling with patients and nurses and lab techs and doctors, were empty. The nurses sitting all in a row at the nurses’ station looked at me with wide eyes. One or two murmured something about hoping I felt better. As I started down the hall to the checkout window, Mary called after me. I’m going to make sure you never have to go through this again. I tried to manage a tiny smile and said thank you. But, I thought, how can you make sure I never have an attack of medical PTSD again? How can it be done?

When I stopped at the check-out window, the entire office staff stared at me with even wider eyes, and the woman who should have taken my co-pay just waved me on with a wish that I would feel better. I tried to manage a wan smile and a nod. As I walked to the door, I noticed the lobby was empty except for one or two people off in a corner. I paid no attention to them. I was concentrating on putting one foot in front of the other. I went out to my car, buckled myself in, put my head down on the steering wheel, and began sobbing again.

Years later I realized (and confirmed with Mary) that I had not just tied up one exam room with my uncontrollable sobbing. I had tied up the entire clinic for two hours. The clinic manager had cleared out all the patients, sent the staff to their assigned stations, and called in some kind of emergency workers—police, SWAT team, men in white coats, whatever—who were waiting there in the lobby to restrain me and take me to a psych ward (or jail?) if necessary. That’s why there was suddenly no mid-morning hustle and bustle in that normally very busy, multi-physician clinic.

It took me a couple more years to realize that it wasn’t just my crying that had made them shut the place down. I wasn’t behaving oddly other than the uncontrollable sobbing. It was something in my medical record that had scared everyone—everyone, that is, except Mary. It was my diagnosis of PTSD, a condition originally defined by its manifestation in military veterans in whom an episode may at times involve violence as they have flashbacks and relive their original battlefield traumas. Mary knew I wasn’t dangerous, though, and she was determined to make sure I’d never again be treated as if I were when all I really was, was very, very terrified.

☕︎ ☕︎ ☕︎

I have medical PTSD: post-traumatic stress disorder caused by having had medical treatment. Treatment-related medical trauma. This kind of PTSD manifests itself pretty much like all PTSD does: re-experiencing the trauma, avoiding people or situations that remind you of the trauma, hypervigilance, emotional blunting, recurring nightmares, a tendency toward dissociation in some settings, and sleep disruptions. It is persistent and causes impairment. I think it’s different than other forms of PTSD because unlike war or sexual assault or natural disasters, the cause of this form of PTSD is something widely considered to be good that happened to you: You got medical care. It is caused by something that happened for your own good.

Medical PTSD is slowly being recognized as a mental health issue for some adults who have gone through intense medical experiences, such as survivors of cancer, heart attacks, or strokes. It is slowly being recognized in hospitalized children as well, and the psychiatric community is busy devising and promoting strategies for preventing it. Unfortunately these few noble efforts are coming half a century too late for me.

Believe it or not, for many, many years I didn’t know I had ever suffered any kind of trauma. Oh, I remembered, with broad, vague brush strokes, the early childhood events that (I now know) caused it. But I had no feelings associated with those events. In fact, I didn’t think there were any such feelings. I had a few purely intellectual memories about a medical situation that had happened to me once, and that was all. Apparently this inability to remember the emotions associated with a traumatizing event is also a symptom of PTSD.

Despite its hiddenness, the buried trauma—with all its emotion—exerted an unseen influence in my life over and over again. On occasion it would bubble up to the surface in some random guise or another. But none of these things ever made much sense to me. They didn’t seem to be connected, meaningful events. I just chalked them all up to weird shit I sometimes did.

When the PTSD finally did emerge the first time in full, florid bloom more than three decades after the events that caused it, I couldn’t identify it for what it was. I eventually managed to push the evil genie back down into the bottle and cork it tightly…until a couple of decades later, when I got cancer. At that point, the genie emerged and refused to be bottled any longer. This meant that my life was in danger twice over—first because of the aggressive form of cancer I got, and second because the medical PTSD made getting the necessary treatment extremely difficult (at times, almost impossible) for both me and my treatment team.

Looking back, I wonder why I didn’t recognize the trauma sooner and try to do something about it. I probably should have paid more attention to the dreams.

☕︎ ☕︎ ☕︎

I remember them clearly. I’ve had these dreams throughout my life, and they are always the same. Someone is going to do something to me for my own good, and I don’t want what they are going to do. They, however, have no interest in hearing what I think. In fact they don’t talk to me at all. They act like I’m not even there. I can talk, scream, shout, try to hit them—none of it matters. They won’t listen to me. They ignore me. I am powerless. They are going to do what they are going to do, and there’s not one damned thing I can do about it. To them, I am a non-entity. Not a person, but a thing upon which they are going to perform some action…for my own good.

I remember one version of this dream particularly vividly. There is a single man, not a small group of people this time, who is going to do something to me. He’s planned it, and it will happen imminently. He’s on one side of a very tall, long, chain-link fence—like what you’d find at a community ball park behind home plate. He’s on the players side of the fence, the active side. I’m on the spectators side, the passive side. I’m trying to get his attention. I’m right up close to the fence, looking through the little squares made by the wire, my fingers woven into them so I can rattle it to get his attention—to get him to listen to what I want, instead of doing whatever he wants…for my own good. But he is impassive. Unmoved. Ignoring me. It’s going to happen, no matter what I want. Because I don’t matter. The only thing that matters to him is what he intends to do to me.

I wake up from these dreams in a total panic, my heart racing, my breathing rapid and shallow. Sometimes I’m quietly sobbing. It takes time for me to calm down, to realize it is just another one of those dreams. Those out of control dreams. Not out of control in the sense of being too active and unrestrained, but out of control in the sense of being firmly immobilized, unheard, and ignored. I have lost control of my life, in these dreams. It is totally in someone else’s hands. And I am terrified.

These are not just dreams. They are nightmares.

You would think that in the space of 50 years, I would have really focused on trying to understand these recurring dreams and figure out their source, but I didn’t. I had them. I woke up anxious, afraid, crying…and then I consoled and comforted myself with the knowledge that it was all just a dream. It wasn’t real. While I remembered the dreams, and from time to time I wondered about them, for the most part I put them out of my mind and moved on. In the grand scheme of things, these dreams were just not that important because, well…in the end they weren’t real.

DISCOVERY and DIAGNOSIS

Chapter 1

And Then There Was Cancer

2001, 2009

In 2001 I was 48 years old and working in retail while I looked for permanent work after finishing my doctorate. Being on my feet all day made them ache something fierce, so I decided to visit a reflexologist—someone who does acupressure, but only on the feet. He and I talked for a bit about my general state of health (not too bad), then I lay down on a table and he sat at the end with my bare feet and almost put me to sleep as he kneaded and pressed at various points all over the soles. After the treatment, we talked some more.

How long has it been since you had a breast exam? he asked.

Oh, a year or two, I guess.

You need to get one again, he said.

I was a bit surprised at this. OK, I said nonchalantly, and the conversation moved on. But a few minutes later he came ‘round again to the issue. I’m really serious about this. You need to get a mammogram and breast exam. Promise me you’ll do this right away?

I promise, I said, rather surprised at his insistence. What could he know about the condition of my breasts based on feeling nothing more than my feet?

A few weeks later I had the mammogram, as promised, and I got a call-back from the breast clinic. We’ve found bilateral lumps on your images, and we’d like you to come in for a biopsy. Although I was initially surprised, I was on the whole unfazed. I listened to my body to see if there was something nasty going on—something like cancer—and the answer I got was, No. Everything is fine. I just knew, in my heart of hearts, that I was fine and there was no cause for worry. The subsequent tests showed I was right.

☕︎ ☕︎ ☕︎

I found a permanent job and bought a house. In early 2009, I decided to refinance it to get a lower monthly payment. I had a feeling something really bad was going to happen, and I wanted to be able to weather whatever it was with as little stress as possible about paying my mortgage. Maybe my frame of mind was influenced by the previous year’s economic downturn, which anyone could see would eventually lead to lay-offs everywhere. But I thought I was safe in that regard. Besides, this foreboding felt more personal, not macro-economic.

When my refi finally closed, I celebrated by sharing a drink with my friend Michael Davis. We sat on his patio in the warm early-June sun and sipped our wine as our conversation wandered between this and that. My job was solid, but I always kept my eyes and ears open for other opportunities. You can always get a job at the cancer center where Linda works, he suggested. I scoffed.

Mike, I don’t think I could work there, I said. I think cancer treatment is needlessly harsh and barbaric. My voice took on a vehement edge unwarranted by the innocent conversation. If I ever get cancer, I don’t plan to use conventional methods to treat it. In fact, this year when we had to select our health benefits for the coming year, I considered getting a cancer rider for my insurance but decided against it. It would only pay for cut, burn and poison, and I don’t believe in those methods.

Well, what would you do if you did get cancer? he asked calmly. We had worked on some projects together in the past, and he was by now quite accustomed to seeing me get passionate about things.

I’d have to study up to get more info, but there are a lot of more natural, alternative treatments out there, I said. I’d try something more holistic and health-enhancing rather than use methods that attack and debilitate the body like conventional treatment does. After all, when my boxer was diagnosed with cancer, I was told he’d live another month or two—maybe a year, if I was lucky. I’ve kept him alive and happy for four years, now, using herbs and nutritional supplements. Without chemo, radiation or surgery.

☕︎ ☕︎ ☕︎

The next day I worked outdoors putting tin roofing over one of my new firewood racks. Then I went in to take a shower. As I was toweling off, I noticed that my right breast was a hot pink color, but in an odd fashion. It wasn’t red in a diffuse circular pattern, like you might expect after a bug bite, but red in the bottom two-thirds of the breast, with a very clear boundary between the red area and the normally colored skin in the top third.

Hmm, I thought. I must have gotten bit by a bug. But how could a bug crawl down inside something as tight as my sports bra and bite me, and me not even be aware of it? And where is the bite, itself? I don’t see anything that looks like a bite. Well, this is weird. I put a little hydrocortisone cream on the red area and pretty much forgot about it.

Less than two weeks later, on June 20 th, the day before my 56 th birthday, I spent most of the day working outside again, mowing, running the weed eater, and generally trying to get ahead of the furious growth of grass and weeds that always peaked about that time of year. When I finally went in to get a shower, I realized my breast still looked unhappy. In fact, it looked a little more unhappy. It was redder, and the redness reached a little further up. As I compared my breasts, I thought the nipple on the red one looked like it was retracting, and the whole breast looked a bit larger than the left one.

A little alarm bell started going off in my head. One of my co-workers, Elizabeth Wilson, had been successfully treated for breast cancer a couple of years earlier, so I decided to seek her advice. It was a Saturday afternoon, a warm summer day, and Beth’s family always had a very busy agenda. I wasn’t sure I’d get hold of her. For some providential reason, though, she was home that afternoon, and I told her what was going on.

It sounds like inflammatory breast cancer, she said. You need to look on the internet. And on Monday, you need to get to the doctor.

My heart stopped beating for one eternal second, and my world went dead quiet. Thanks, I said. I’ll get it checked out.

On the internet what I found was not encouraging. The survival rate for IBC was about 40-50% at five years—far worse than for regular breast cancer. And it was very aggressive, highly prone to metastasizing. This was scary. While my breast didn’t look nearly as bad as some of the pictures I found of IBC, my symptoms clearly matched some, but not all, of the diagnostic criteria. My blood ran cold. Unlike my little breast cancer scare in 2001, when I had just known everything was fine, this felt different. In the next ten days I would talk myself into and out of an IBC diagnosis a million times. But the truth was that this time when I listened to my gut, I knew I was in trouble.

☕︎ ☕︎ ☕︎

On Monday I stopped by Mary’s office on the way to work, just as Beth had told me to do. I need to see Mary, I said. "Today," I added, with extra emphasis.

I’m sorry, the woman at the desk said, checking the appointment calendar. Mary doesn’t have any openings today.

I gripped the edge of the counter with both hands and leaned in toward her. You don’t understand, I said in a low, urgent voice, drilling into her with my eyes. I think I might have inflammatory breast cancer, and I need Mary to take a look.

The woman quickly re-checked the schedule. Can you be here at 1:15 today?

At the appointed time, Mary checked me over. A few of the features of IBC were clearly present, but as she examined me, she mentioned other features she didn’t find. I took this as an encouraging sign, even though she wanted to send me to the breast clinic at the hospital for a more thorough work-up. I left her office and immediately called a couple of friends to whom I’d confided my fears. It looks like I’ve dodged this bullet, I told them with relief. She wants to send me for a more thorough examination, but it sounds like that’s just a precaution. She didn’t sound too worried.

Funny thing. You hear what you want to hear. Years later, recalling that day, Mary said, Well, we both knew you were sick, when you came in that day, didn’t we? Your diagnosis was no real surprise.

☕︎ ☕︎ ☕︎

While I had been considerably reassured by my visit with Mary, I maintained a margin of suspicion about the whole situation, and as the days rolled by that margin grew larger and larger again. Maybe I did have cancer. If I did, I wanted to know more about the steps I needed to take, as a health care consumer, to have it properly diagnosed. Inflammatory breast cancer tends not to form a lump in the breast. Instead, it forms sheets using the skin’s lymphatic system to spread. The websites likened it to the scum that forms on top of stagnant ponds. Because it tends not to form a lump, it is often not picked up by mammograms. The surest way to spot it is through an ultrasound or MRI and a biopsy.

The thought of cancer spreading in thin layers throughout the skin of my breast made the prospect of having a mammogram scary. What if the compression of the mammo caused tiny bits of damage to my skin at the cellular level, and what if those damaged areas would be more susceptible to invasion by the spreading tentacles of a pond-scum cancer like IBC? Since a mammogram might not pick it up and wasn’t even definitive if it did pick up something odd, I decided I wouldn’t get one. The risks it might pose, I felt, were greater than the potential benefit it offered. Especially since there were diagnostic options that appeared to be even better. I didn’t realize the extent to which my choice would disrupt the normal functioning of the hospital. Without knowing it, I had just made a decision that threw down a gauntlet challenging a well-oiled machine.

When the hospital scheduler called to set up the appointment, we decided on the very next week. OK, she said. We’ll see you on Monday, June 29 th, for a mammogram and then a clinical examination.

Uh, OK, I said, Except I don’t want to have a mammogram. It often doesn’t even pick up IBC, which is what I might have. And even if it seems to pick up something, it’s not definitive in making a diagnosis. I would agree to a clinical exam and an ultrasound and biopsy, but I do not want a mammogram.

The scheduler didn’t know what to do with a patient who was stepping out of line this way. After a pause, she said, I understand. But really, a mammogram doesn’t hurt that much. It’s a pretty easy test.

I know that, I replied. I’ve had a number of mammograms before. Pain is not my issue, here. The issue is, it isn’t a definitive test for what I may have, and in fact I’m afraid it might help to spread the cancer, if I have cancer. So I don’t want that test.

Another befuddled pause. Well, let’s just schedule you for the visit, and you can take that up with the doctor when you get here.

Yes, let’s schedule the visit, I rejoined. But I don’t want to leave this decision to the day of the visit and have a big scene then. I want to get it settled right now, at the outset, that I am not going to have a mammogram. I’ll do other stuff to help with diagnosis, but not that.

I can’t make that decision, the scheduler said.

Who can, then? I asked.

I can let you speak to a nurse, she offered.

Fine. Let me speak to a nurse.

A mammogram isn’t that painful, the nurse reassured me. Again, I explained that my issue was the inadequacy of the test for detecting IBC and not pain but tissue damage and possible cancer spread. Oh, cancer doesn’t work that way, she reassured me.

Oh? I said. So how does it work?

Well, it spreads through various chemical and biological processes, but not because of cellular damage, she said vaguely. Studies show that that doesn’t happen. ¹

I was not convinced. They do? I said. Can you give me a reference to a couple of those studies? I’d like to look them up and see for myself what they say.

I don’t know any citations off the top of my head, she said, trying to be helpful, but I can look them up for you.

That would be great. Thanks. In the meantime, I do not plan to have a mammogram. I want everyone to be clear on that before I come in. I gave her my contact info and hung up. She never called back.

☕︎ ☕︎ ☕︎

It was a long, anxious week of waiting for my appointment, during which I read everything I could about IBC. I had a lot of time for this, because concentrating at work was hard, and sleeping at night was harder. I finally confessed what was going on to one of my co-workers, including my reluctance to submit to a mammogram and the deafening silence from the nurse—a silence that bothered me more with each passing day.

You need to talk to David Anderson, Susan said. You know David and Jessica, don’t you? I knew the names, but not the people. David is a radiation oncologist, she said. He’ll be able to give you the answers you need. Thus began one of the most useful—and valued—relationships I was to develop as a cancer patient. No matter how challenging my questions or fearful and mistrustful my attitude in those early days around my diagnosis, David always maintained an even tone, and he seemed to delight in answering my questions.

David assured me that what I was afraid of doesn’t happen, and he cited the research, too. When I pushed him for references, he admitted he had none. So I asked him how he knew that the scenario I’d painted in my head doesn’t happen. He said it was because of clinical experience. In those cases when cancer does return, he said, 80-90% of the time it’s in an area right next to where the original cancer was located.

OK…, I said, seeing an immediate connection to my concerns. But this kind of supports what I was saying, doesn’t it?

David seemed more and more befuddled, as we talked. He didn’t know what else to say to convince me. Maybe the emperor has no clothes, he said at last, but it’s not usually outsiders with no knowledge or training that manage to point that out.

I don’t presume to think that I am going to topple the emperor (even assuming that is a desirable goal), I said, and I agree I have no knowledge or training. In fact, that’s exactly what I’ve been trying to get…to no avail. No one has yet provided me with any hard, factual data that could refute what I’m saying. And the information I’ve been able to find on my own suggests that my concerns might be well-founded. That info, by the way, came from medical ‘insiders.’ ²

I had also found mainstream medical articles discussing problems with different mammographic techniques and the significant variability that could occur in interpreting mammographic images. When I contacted a mammography expert at the hospital to double-check the truth of what I’d been reading, she just assured me that a mammogram was the state of the art in breast cancer diagnosis, highly reliable, and wished me a cheeky good luck if I chose to refuse one.

All of this made me more resolved than ever to skip a mammogram for IBC and go straight for a more definitive means of diagnosis.

☕︎ ☕︎ ☕︎

It was the Friday before my Monday appointment, and I had still not received any information to support the harmlessness of the clinic’s intent to inflict a mammogram on my swollen, possibly IBC-afflicted breast, so I decided to cancel the appointment. This scared me, but I was adamant about not feeling railroaded. I left three voice mail messages asking for a call-back. None came. But Michael’s friend Linda emailed on the fifth day to ask me how I was doing.

I’m OK, I replied, except that I can’t find info on mammograms that address my concerns about it, especially for someone like me who might have an easily metastasizing cancer. Until I have that info, I refuse to move forward. I’ve been calling to cancel my Monday appointment. In fact, I just called for a fourth time a little while ago. But no one is answering my calls or my voice mails.

Linda’s work in research put her in contact with lots of people in the hospital. She quickly put those connections to work for me, putting me in touch with a patient advocate named Sarah Thomas. When I presented to Sarah my qualms about mammography, she said she’d check with a few experts and get some citations to papers showing my fears were groundless. Much to my surprise, she actually did call me back. Thirty minutes later she reported that there are no such studies. There is no research on this particular question. But if you don’t want a mammogram, she asked with impeccable logic, why don’t you just do an ultrasound, instead?

That’s exactly what I’ve been offering to do! I exploded, exasperated yet grateful that someone was finally on the same page I was. I’ve asked repeatedly for that, but no one is listening to me. They just say it can’t be done, because mammography is always first. So I’ve been trying to cancel my Monday appointment, because I won’t have a mammogram under these conditions.

Who have you talked to? she asked.

I told her, and she said she’d check. Before I knew it, I was getting a call from a nurse at the hospital to confirm the Monday appointment. For ultrasound or mammography? I asked, expecting Sarah had been talking with her. To my great consternation, she said for mammography.

For the sixth time in five days, I repeated my hesitancies about having a mammogram. The nurse once again spouted the not that painful line, the your fears about spreading the cancer are unfounded line, etc. I once again pointed out there was no literature specifically supporting her assertion.

After several minutes of this back-and-forth, we agreed I would do an ultrasound and have a clinical exam on Monday, so I said fine. I’d keep the appointment. A few minutes later I received a confirming email, copying the oncology nurse practitioner who would be examining me, Karen Jackson. It said I had an appointment on Monday for a clinical exam and a mammogram.

Seven! Seven times!! I was feeling more and more unheard, disrespected, and railroaded with almost every encounter with the hospital, and I hadn’t even set foot inside the doors yet. My anxiety was going through the roof, and it wasn’t just due to the possible cancer. This whole interaction had been incredibly disempowering at a time when, more than ever, I needed to feel that I had some control over my life and what would happen to me.

NO, NO, NO! I wrote back immediately. I thought we had settled this matter. I will only have an ultrasound and a biopsy, if indicated. If we are not all on the same page with this, we need to just cancel Monday’s appointment until we can agree about what will be done. The nurse wrote back and said I was right. It would only be an ultrasound, not a mammogram. I confirmed this in the most gracious language I could muster and said I’d see them on Monday.

The weekend was not a fun one. I didn’t want to think of myself as someone with cancer. Yet in the pit of my stomach, I knew this was why I’d felt the need to refinance my house. This was it.

☕︎ ☕︎ ☕︎

When