12-12-09 Update – Surgery and Pathology

First, let me apologize to everyone. I should have tried to write this entry soon after I got home from having my mastectomy, but I’ve been too tired or too busy…and my right arm hurts if I use it too much. Still, it takes a village to be a successful cancer patient, and I should have been in better communication with mine…..

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The central treatment event for IBC patients is the surgery. Everything about your treatment is geared toward preparing you for the surgeon’s knife—or doing mop-up action after the surgeon’s knife has done its best work. I have now had that central treatment experience, so I suppose “it’s all downhill from here.”

On Wednesday, December 2nd, I wrote to the hospital psychiatrist, Dr. D, to ask him for one more bit of reassurance about my next day’s surgery. I told him about Dr. M, whom I had consulted the previous Monday, and how he had told me that getting a pathologic complete response was prognostically almost equivalent to getting a pathology report that was not complete, but then having more chemo, radiation therapy and hormone therapy. I wanted to know whether, in his experience, most physicians believed this. Or was Dr. M just telling me this to make me feel better about the prospects of not getting a pCR?

Dr. D phoned me later that night and encouraged me to set aside my anxieties about the surgery and just trust that things were going to work out as I had been planning.

I tried to do this, but realized that trust was still too hard to come by, for me. I sent him a message, after that brief talk:

Thanks for talking with me tonight. Disappointing to realize that not many people would put the same rosy a glow on pCR vs. non-pCR prognoses that Dr. M put on them...but I guess I shouldn't be surprised by now.

The amount of input I've been allowed to have into my course of treatment has long been a source of irritation to me. You might find it illuminating to read my latest blog (dated 12-2-09) at www.brendadenzler.blogspot.com, for a sense of what the difference is between the kind of "options" I've been offered by my old treatment team at UNC Hospitals and the kinds of options that were presented to me (in a clear, linear fashion) by Dr. M on Monday evening. If you read into the archives of the blog, you'll find that this issue has come up on several occasions.

Meanwhile I've been thinking of all the times when my old treatment team *OFFERED* me treatment options, as compared to the times when I approached them about treatment options and was shot down. Here's a list, off the top of my head:

**Times options were offered to me:

1. To cut back on chemo administration when I became febrile
2. To cut back on chemo administration when I developed debilitating Hand-Foot Syndrome

Note that neither of these choices involved actual differences *between* treatments. They only offered me a change in how a team-prescribed treatment was going to be administered to me.

**Treatment options that I brought up that were accepted without my having to raise a stink:

1. Changing the administration of pre-chemo Benadryl from IV to oral

Note, again, that this option did not involve an actual difference between treatments...only a change in how a treatment was delivered.

**Times genuine treatment options that I brought up were shot down (though they may have been countenanced AFTER I raised a holy stink about it or after some other physician intervened to make the same request):

1. Possibility of stem cell replacement
2. Possibility of doing a PET scan as part of my pre-treatment work-up
3. Possibility of doing imaging as part of my post-treatment surveillance protocol
4. Possibility of doing imaging after chemo was finished to see (more objectively) how we'd done with chemo
5. Possibility of doing more chemo after prescribed "standard" treatment protocol was done
6. Possibility of doing something proactively, before surgery, to try to minimize risk of lymphedema
7. Possibility of talking to my new oncologist prior to my surgery, because according to old treatment team, there were no other medical oncology issues to be addressed, since the prescribed course of chemo had been finished and the next prescribed step in the standard treatment protocol was surgery (No individualized medicine here!)

From this moment forward, I am requesting that *ANY* time treatment in my case is discussed in the breast conference, I will be informed of all of the treatment options that were discussed--not just informed about what the final decision of the conference was about the next step in my treatment (which is how treatment decisions have been made heretofore).

Furthermore, I request (1) that the breast conference cease making any final decisions about my care; (2) that they, through my oncologist, inform me of the various viable courses of action that could be taken in any given situation; (3) that I be educated about the pro's and con's of the various courses of action; (4) that I be informed about the preference of the breast conference and given the reasons for that preference; and (5) that all of this be done **well** in advance of the date by which a decision is needed, so that I have time to think about, ask questions about, and reach an informed decision as to which of the treatment options I would like to pursue.

This is the approach that Dr. M used with me when I consulted with him, at Dr. C’s recommendation. I believe that my hospital is quite capable of using the same approach.

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Given the levels of anxiety that I have had about this surgery and whether or not it would go well, I was surprisingly calm on the day of the big event. I had done everything I could think of to try to specify the conditions under which I would feel most comfortable with it. Those conditions were:

(1) My surgeon, Dr. N, and I had talked about the fact that I didn’t want any students practicing on me. I only wanted her to wield sharp objects against my skin—no residents, no interns, no medical students. She had agreed to this, specifying however that she did need assistants in the operation to lift my arm so she could do the axillary dissection, hold flaps of tissue, pull back muscles, etc. I told her that was alright, as long as they didn’t do any cutting on me. She reassured me that they would not; she would do all the cutting. When I signed a consent form on 11-4-09 and again on the day of surgery, I specified this as a condition of my treatment. (I record all of my consults with my care providers, so I have an audio file of this discussion.)

(2) At the suggestion of a nurse, I also wrote on both consent forms that only Dr. N would close my wound. The nurse pointed out that if it were Dr. N on the table, she most certainly would demand that only the attending physician do the closing—and that was good enough for me. I also put that stipulation into the consent forms that I signed.

(3) I had also had a long discussion with the anesthesia folks in early November, namely with Dr. S, who had agreed with me that we would do this surgery with a nerve block for regional pain control and minimal to no sedation, with me being the one to control the amount of sedation I would get. Under no circumstances would I be put under general anesthesia and intubated unless there was a life-threatening emergency. I had this consult after I had already signed the consent form that Dr. N asked me to sign on 11-4, but I did write these terms and conditions into the consent form I was asked to sign on the morning of my surgery.

So my bases were covered, right? It really was best to just sit back and try to let go of the fear and mistrust.

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Though I was amazingly calm, I was not exactly upbeat. In a few hours I would no longer have my breast. And I wasn’t sure just how the whole day would go.

My “babysitter,” Judith, who is a kind and gentle soul, took me to the hospital that day and stayed with me the whole time (except when not permitted). As we were driving in, I was feeling pretty sad. It must have showed. Judith reached over and patted me on the back.

“Don’t be nice to me,” I said, tearing up. “It’s going to make me cry.”

And without missing a beat, she barked harshly, “Oh, shut up!”

Which made me laugh.

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Everyone at the hospital was very nice and very focused on my care and comfort. Everyone “on the floor,” at any rate. I’ve never had much trouble with the “on the floor” folks at my hospital. It’s only the medical personnel at the top of the “food chain” that have given me problems. This experience turned out to be no different.

Dr. S, the anesthesiologist, was not the doctor who administered the nerve block. That was Dr. P and his phalanx of medical students. Although I had been told by Dr. S, during our consult in early November, that only Dr. P would do the procedure, in fact it was done by his students, though it was very clear that he was standing right next to them and giving them constant guidance.

For that matter, so was I. Because I was awake and aware and not sedated, I was able to give them a fairly constant report on what I was feeling, which helped guide them to insert the needles in the appropriate places—and to remove them quickly when they hit inappropriate places!

It really wasn’t too bad. You sit up on the side of the bed and hunch over to expose your spine, and then they insert a bit of local anesthetic in the places next to the spine where they will later insert needles into the spaces between your vertebrae. This helps decrease the amount of pain you feel when they do go deep with the needles later on. When that happens, the dominant feeling is fullness and a bit of a back ache. The longer the procedure went, the more I felt like I had this nasty back ache and I needed to lie down. After about 15-20 minutes, I got to do just that while we waited for the anesthesia to take effect.

Unfortunately, we didn’t get the level of pain control that we needed. They did an ice cube test on me, to see if I could feel cold in the areas of my chest and arm where the surgery would take place, and I could feel it in some areas. So they had to insert more anesthesia in those vertebral areas, and we had to wait some more for it to take effect.

It was kind of funny, actually. By this time my back was so numb that I didn’t feel a thing during the re-dosing, except for some pressure. I was cool. But Dr. S came and sat down in a chair next to the bed, this time, and held my hand. I let my hand rest lightly in hers, betraying no panic or pain…but her hand would squeeze mine periodically. I assume it was every time they inserted the needles into my spine again. I got the impression that she was more anxious about what was going on in back of me than I was!

After the first try with the nerve block, I got to talk to Dr. P briefly. I complimented him and his team on the good job they did. I said it didn’t hurt too badly, and I really appreciated their doing this for me, as it was very important for me to be a participant in my treatment rather than a blob on the operating room table. I couldn’t do this if I had to be sedated, I said, and the nerve block was going to help me avoid sedation.

Dr. P had seemed rather aloof and stern when we talked before the procedure. He had told me that he would not have taken me on as a patient given my refusal of general anesthesia, since that would tie his hands. But now, after the procedure and my whimperless acceptance of the nerve block administration, he seemed warmer and friendlier. He smiled at me.

My job in all of this, as I saw it, was to be a participant in my own care by being a very responsive and cooperative patient. As we began putting in the nerve block, I realized that I was trembling all over. Not from pain. Just from tension. So I asked for a dose of fentanyl, a pain medication. I figured that it would help take the edge off, and it did. For a time. But several minutes later I was trembling again, so I asked for another dose. And I got it. And then, several minutes later, ditto. So I asked for another dose, and got a third. (Maybe this also contributed to my being so cool by the time the second round of anesthesia was pumped into my spine!)

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It was going beautifully. I was in total control of my anesthesia, and I felt very reassured. The breast to be removed (right) had been marked by the surgical staff who would be helping in the OR, some of whom had introduced themselves to me. The breast that was to stay (left) had been decorated by Judith that morning before we went to the hospital. It said, “Thanks, y’all!” and had hearts and flowers and swirly designs on it. The point was both to make it really clear which breast was a work of art and was supposed to stay put, but also to convey my sincere thanks to the surgical team for their efforts in my care.

As the nurses and Dr. S wheeled my bed toward the OR, Dr. N appeared at the side, smiling. The door swung open, I was wheeled next to the OR table, and I made the slide off of the nice, comfy bed and onto that rather hard and unforgiving surface, where I was loosely strapped down (so I wouldn’t fall off during my presumed sleep through surgery).

There was hustle and bustle, and in a surprisingly short time I was being draped to create a sterile field for the surgery. I knew that I was not going to have a view of the event, but I had thought that a tall board would be put in place around my neck that would obstruct my view, which is what happened when I had surgery in 1990. But not so. As they threw drapes over my face, they reassured me that they would remove them in a minute. It didn’t bother me much. I took them at their word.

Part of the hustle and bustle was them trying to set up my CD player to play the surgical support meditations that I was planning to use throughout the surgery. I’d been practicing with them for weeks, trying to prepare myself for this very scary event. They almost always put me to sleep, and I imagined that this would happen again. At the very least, the meditations would help me to relax deeply. But unlike with sedation, I would be in control of my sleep or my wakefulness. I would be able to choose.

But the nurses couldn’t seem to get the CD player to work right. They’d put the headphones on me and follow the instructions for starting the player (which I’d taped to it), but nothing was coming on. They seemed to try so hard, and nothing was working. I began to feel pretty guilty for distracting them from the work they were no doubt supposed to be doing. I said that if it didn’t work, not to worry about it. Just let it be.

Meanwhile, I realized that I was trembling all over again. Since I had already had three doses of fentanyl, I decided to ask for a tiny bit of Versed—the legendary “date rape” drug that may or may not put you to sleep, depending on how much you’re given, but that generally makes you forget what is happening to you at the time. I asked Dr. S for a “homeopathic” dose of Versed, and to make sure that I was clear, I said, “a very, very, very tiny dose. Just a very little bit.”

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The next thing I knew I was waking up with a mouth so dry that I could hardly speak. There was a translucent drape over my face. The only direction I could see out was if I tilted my head back and rolled my eyes up. I could hear my surgeon’s voice on my left, where the remaining breast was, and I heard a male voice on my right, where the breast had been removed, and I felt tugging on my body from that direction. I knew in an instant that whatever was going on, it was not my surgeon doing it.

I begged for just the tiniest sip of water, because I was so dry. Even just a single chip of ice to wet my mouth. But the nurse at my head tried to soothe and encourage me. Several times, as I made repeated requests over the following minutes. “We can’t give you any water or ice in the OR. Hang on. Just a little bit longer. We’re almost done.”

And that’s when I knew that about three hours had passed—that I had totally lost control of my sedation—that I had missed being present for my operation–and that the tugging I felt was some male who was not my surgeon doing the closing.

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Even when I got to recovery, it took forever to get any water. The nurse there said she had to record my vital signs first. I’ve never waited so long to have such basic measurements taken. But eventually I was allowed to have that blessed sip. At some point I vaguely remember Judith, my babysitter, coming in, too. My kids had to wait for me in the waiting room, but Judith, as my direct caregiver for the day, was granted momentary access to me. I also saw Dr. P again, briefly, as he entered the curtained area next to me. Our eyes met, and I just tilted my head toward him and smiled. He smiled back.

Most of the time in recovery, I slept. I have no idea how long I was there. Nor do I remember how I got to the short-term stay unit—the windowless cubicles with a bed, a chair and a table where post-op patients needing a night’s hospitalization stay. Graham and Todd, my sons, were there. I think Judith was there at first, too, but I sent her out to the truck to get my ice cream.

On Monday before the surgery, I had wanted comfort food. I wanted Haagen-Das Dulce de Leche ice cream. I was anxious and upset…I needed something to comfort myself. And one of the best comfort foods I know is Haagen-Das Dulce de Leche ice cream. But I didn’t want to eat a bunch of dairy right before surgery, as dairy can sometimes make my sinuses all congested. I wanted to be able to breathe on the operating table and not need any kind of breathing intervention from the anesthesia folks. So I promised myself that immediately after the surgery was done, I would indulge.

Judith and I had packed my pint of Haagen-Das that morning in an insulated lunch bag with tons of ice. I hoped it had survived the day…and it had! In fact, it had melted to just the right soft consistency. Before long, Judith was feeding me—since my right arm was so sore as to be almost useless. Then I had my supper, which Judith also fed to me.

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Most of my post-operative pain so far has been located in my right arm—usually a dull, throbbing ache, which I’ve had since the moment I got out of the OR. I have tried to comfort myself with the reassurance that lymphedema doesn’t start that early—that this is just post-operative pain. But still, it can be disconcerting.

I made it a point to look at the place where my breast was as soon as possible. Some women have trouble looking at the scar and wait for days or weeks to see the new shape of their bodies. I wanted to see it the first time the nurses came in to change my dressings. May as well face the inevitable.

I was surprised. The scar runs not just across my right chest and under my arm, as Dr. N had told me it would. It actually reaches back onto my right shoulder blade. I can’t see all of my surgical scar without a mirror, it’s so long. Dr. N told me, later, that it’s so long because I’m heavier and have (as she puts it) pendulous breasts with lots of skin that needs to be managed when one is removed. They were trying to give me a neat, flat incision, rather than one with a big lump of skin on either side. As it is, there is a tiny lump at the sternum side and a significantly larger lump on my shoulder blade. They’re kind of unsightly. I hope that they shrink, with time.

Underneath the scar line, right under my right arm, are two tiny incisions in my skin where the drainage tubes were inserted. I had thought that they would be inserted in the surgical line, rather than having two more incisions in my skin for them, so that surprised me. They aren’t quite as gross as I had imagined. Or maybe it’s just that I auto-adjusted to the grossness when I saw them. They are, after all, a part of my life for the next couple of weeks, so I have to deal with it.

What has been most interesting is the different sensations that have come—or gone—because of the surgery. The surgical scar itself is painless. There is no sensation there at all, which is a good thing right now, as we have to treat it with antibiotic ointment twice a day. Just as well to not have much sensation there! The site with the drains is another matter. That hurts some, probably because I have “foreign bodies” inserted there and my skin is not pleased. On my chest near my right underarm and throughout the underarm, I’m pretty numb, too. Or at least I was. In the last few days the underarm area has become very painful, as if I had a severe rug burn there. I suspect that it’s a sign that the nerve endings in that area are growing back together. In the upper part of my right chest, toward the right arm, I have had a searing, burning pain. Sometimes the least little muscle movement would send a jolt of pain so severe that I’d have to try to remember to breathe. Sometimes it doesn’t even take a muscle movement. And in the last few days, I’ve begun to have more sharp, stabbing pains across my right chest—again, I suspect due to the healing of nerve endings.

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On Thursday afternoon (or evening…I lost track of time) a male wearing a white coat came into my roomette to check on my post-op progress. He identified himself as a resident working under Dr. N, and I recognized him from the OR. It was his face, and his voice. I asked him how the surgery had gone and he said that Dr. N had gotten negative margins on the first try, meaning that there was no cancer detected in the skin along the incision line. This was good news.

He also said that Dr. N had taken lymph nodes from all three levels. I was discouraged to hear this, since she had told me she’d only take nodes automatically from two levels, taking the third level if it seemed necessary once she got in there. That meant that she’d found signs of cancer more extensive than we’d imagined.

He also said that she’d cut one of the muscles on my chest in order to get to the level three nodes. This surprised me. At our consult on 11-4-09 I had asked Dr. N if she cut muscles in doing mastectomies and she had responded no, that she didn’t. This was a kind of “litmus test” question, to me. The surgeon I had consulted for a second opinion made a big deal about how some surgeons cut the muscles to get to the level three nodes, because it’s easier. But if they would take a little extra time and effort, those muscles could be pulled back and out of the way, rather than cut. This second-opinion surgeon said she never cuts muscles. So I had decided to choose my surgeon according to who cuts muscles and who doesn’t.

When Dr. N said she didn’t cut muscles, I had figured both surgeons scored equally on that, and I made my choice to go with Dr. N based on the amount of time she had already taken with me and the concern she had shown during our pre-surgery consult in September for my needs and my fears. It was thus very disappointing to realize that despite her assertion that she doesn’t cut muscles in doing mastectomies, she did on me. It was not the end of my disappointments.

I then asked the question most on my mind. I asked The Resident if he had closed my surgery. He responded that he had assisted Dr. DeMore in closing. He asked me if this was a problem, and I just looked at him with my best icy stare and said, “We’ll see.”

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Judith had put in a long day with me in surgery, so she went home. Graham left to go to my house and take care of my menagerie, and Todd went home to sleep because he had to work bright and early the next day. Later on, he took over menagerie care while Graham went home.

My daughter-in-law Michelle came to the hospital after she got off of work that evening and stayed overnight with me. (She didn’t have to go to work quite as early the next day.) If I moved at all, she immediately woke up and tried to help me. Sometimes moving was the very challenge I faced. With only one good arm, it’s hard to shift your position in bed.

It’s equally hard to get up out of bed and walk around, but I had to do that as soon as possible after I got to the short stay unit. As you’ll recall, I’ve developed blood clotting problems since I got cancer, which makes any long period of inactivity dangerous, especially when that inactivity is associated with a surgery. I had to quit taking my anti-coagulant before surgery, so I was pretty unprotected there for a while. Getting up and walking around was the best way to prevent developing further clots. It was also the best way to induce sleep: Every trip to the bathroom required a long nap afterward, just to recover from the exertion!

It was a good thing that I had my kids’ support, because as it turned out, I spent two additional days in the hospital.

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On Friday morning, The Resident came to see how I was doing. I reminded him about his saying that he had helped Dr. N close the day before.

“Did you cut on me, at any point?” I asked him.

“I helped Dr. N with the surgery,” he said.

“In other words, you made incisions on my body?” I pressed.

“Yes,” he said. “ Dr. N needed both hands to define tissue planes, so someone else had to cut. Is that a problem?”

“Yes!” I replied. “No offense to you, but I talked with Dr. N in September and told her that I didn’t want anyone cutting on me but her, and she had assured me it would not happen. I have this discussion recorded. I wrote on both of my consent forms that I did not want anyone cutting on me or closing the surgery except Dr. N. And it sounds like the consent forms were ignored.”

Then I asked about the anesthesia: How much Versed had I been given? The Resident said that he didn’t know; it would have to be looked up in the operation records. One of the medical students who was with him disappeared briefly and came back with the information: I was given a total of 9 mg. of Versed delivered in 1 mg. and 2 mg. doses over the course of the nearly three hours that the operation took.

I was livid, but I remained calm as I informed The Resident that this, too, had been contrary to the agreement I had reached with the anesthesiologist. I had only received fentanyl, a pain killer, when I asked for it. This was just as I had requested. But when I asked for one tiny, tiny, almost homeopathic dose of Versed, I lost control. I was given repeated doses of the drug in anything BUT homeopathic quantities, resulting in my being sedated and unaware for the entire operation. This was not what I had bargained for.

The Resident passed the word along: unhappy patient in the short stay unit.

In a short time, Dr. N came to see how I was doing. She told me that she had decided to take the level three lymph nodes because she had felt the topmost level two node and it seemed “off” to her, so the presumption had to be that there had been or was cancer in that node and if it had gotten that far into my lymphatic system, it might have gotten into the level three nodes, too. She reassured me, however, that when she removed those nodes, they felt fine.

I asked her about the margins, and she confirmed what The Resident had said—they appeared to be negative, though only the final pathology report could tell us for sure whether they were or whether another surgery would be necessary.

Then I asked her about who had done the cutting on me and who had closed. She insisted that she needed The Resident to assist her—that he was her oldest and most experienced resident and that she had been in charge of the operation the whole time.

“I have no doubt that you were in charge of the operation,” I replied. “If you had been standing in the corner and telling everyone what to do, you would still have been in charge. The point is that when we talked in late September, I specifically told you that I didn’t want anyone cutting on me but you, you said you needed help and said that it would be in the form of assistants holding flaps of skin, holding muscles back out of the way, and holding up my arm when you took the lymph nodes there. I said that would be alright, as long as no one but you cut. You assured me that only you would do so. I wrote that into the consent form, but you ignored it. We agreed on this, I wrote it into both of the consent forms I signed, but you ignored it.”

Dr. N suggested, at that point, that I should try to quit being so anxious.

“I’m not anxious,” I shot back. “I’m pissed. You knew that a huge, huge issue for me was trusting the medical profession and that this surgery was a big test of that. We had a long talk about my concerns about this surgery—the things that I needed to help me feel secure and like I could trust. Yet you ignored those things, even though they were written into the consent forms I signed. How could you do that to me?”

She then told me that she wasn’t supposed to be in surgery the day before at all. She was supposed to be studying for her General Surgery Board re-certification, which was coming up. If she’d known in September, when she scheduled this operation, that she was going to need this time to study, she would never have scheduled it then. Although she could have passed me off to one of her colleagues, she said, she hadn’t done that because she knew it would only increase my anxiety level. So she made a special effort to come in and do this surgery for me. And she reiterated that it was absolutely necessary for her to have the “cutting” assistance of The Resident in order to do it.

I told her that I was grateful for the consideration she showed in not passing me off to one of her colleagues, but it didn’t change the fact that she had not lived up to the agreement we had reached about how this surgery would be done.

“If what I asked for was impossible,” I said, “you should have told me so right up front when we talked about this in September. You should have explained why it was impossible, and I would have dealt with it. But that’s not what you said. And I trusted you to live up to what we had agreed upon.”

When Dr. N left, she was visibly unhappy.

In short order, I was visited by Dr. S, whom I confronted about the violation of our agreement that I would have minimal or no sedation and that it would be given to me only at my request. She looked very sad and maintained that we had been successful in that we had managed to do this surgery with only a nerve block and sedation, meaning that I had managed to avoid general anesthesia and intubation.

I agreed that this was a success, but it was not the only goal of my anesthesia plan. My plan had included minimal to no sedation, which was honored as long as I asked for fentanyl. The minute I asked for Versed, however, my desires were no longer honored, and I wound up getting multiple doses delivered over the next three hours, until I’d had a total of 9 mg. As a result, I had not been able to be present for the operation, I had not been allowed to be in control of my own pain level and sedation, and I was not pleased at this. (I didn’t bother to point out that it was not THAT big a deal that we had been able to do the surgery with only a nerve block and sedation—that’s how Duke University routinely does mastectomies.)

She said that she had had to give me multiple doses of Versed in order to keep me “safe and pain free.” I asked her how she knew I was in pain, since I wasn’t awake to tell her. She said it was because I was moaning in my sleep. I pointed out that I was supposed to tell her when I was feeling pain, but I couldn’t do it because she’d knocked me out.

In the end, she apologized that the experience was not everything I had hoped for, but maintained that she had only done what was necessary to keep me “safe and pain free.” She also maintained that she thought the procedure was a success because we’d avoided intubation and general anesthesia.

As she left, she, too, was visibly unhappy.

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As I sat there watching Dr. S walk away, I thought, “I can’t do this any more. I give up. I can’t have another set of doctors thinking unhappy thoughts about me. I’m at their mercy. I can’t even control what they do to me when I make agreements with them ahead of time. I am totally at their mercy.”

So I got up and called Dr. N’s clinic and left a message for her. “I apologize.” Then I did the same for Dr. S.

It’s not that I felt that I had done anything wrong. I hadn’t. But I had made them unhappy with me, and I wanted them to have warm, fuzzy thoughts about me. Not unhappy ones of a patient confronting them with their own misdeeds.

So I apologized. After all, nothing makes you feel better, when you feel you’ve been wronged, than an apology.

And from their point of view, I realized, they had been wronged. They had been taken to task for doing a job for me that is no different than they would have done for any other patient. All that mattered from their point of view was that I had had a “successful” surgery. This physical act had been a complete success: I was now freed of a cancerous breast and its associated lymph nodes. And yet here I was, being unhappy with them for making that happen for me. That was all they could see. And they were unhappy that I didn’t see it their way.

The fact that I had been operating with and trying to overcome huge trust issues was pretty much irrelevant to them. The fact that they did not live up to the agreements they had made with me about how the procedure would be performed was irrelevant to them. Totally irrelevant. If it had been relevant, they would not have behaved the way they did at the time of the surgery.

It was clear that they could not see the patient and her needs as being just as important as the physical act of performing the surgery. Nor could they understand, in advance, or appreciate, after the fact, the impact their violated agreements would have on the patient.

They could only see the cancerous breast/nodes which they had successfully removed from the patient. And from that very focused (if limited) perspective, the operation was a great success.

So I apologized.

I felt, once again, disempowered by my experience at the hospital. I felt doubly disempowered by apologizing—but I was ready to do anything to make them act like they liked me again. To make them act happy. Because I knew, sitting there in that chair, my chest flattened and my arm hurting like mad, that I needed them.

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If one of my doctors were to try to write an account of the operation from my point of view, could they do so with any degree of empathy and credibility at all? Where does the psychology of medicine enter into their actions? Does it ever enter in, or do they just refer “problem patients” to Dr. D, the Cancer Hospital psychiatrist?

Most importantly, at what point does having and keeping the trust of their patients assume as much importance for them as does their own ability to perform a technically correct procedure? Does it ever?

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In the days following this, I found myself feeling about as numb inside as the scar on the front of my chest. Having the scar—and not having a breast—made having cancer real to me in a way it hasn’t been before. And when I thought of having cancer, I felt nothing but numb defeat. Just like the defeat I felt as I watched Dr. N and then Dr. S walk away that Friday morning.

If I couldn’t even get two living, breathing, thinking, intelligent human beings to engage with me, to listen to me, to honor my requests…then what chance do I have against an unthinking, unreasoning cancer?

Both, I felt, were devouring me. Just in different ways.

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Several days later I was talking to a friend whose sibling is dating a surgeon in the UNC Health Care system. The surgeon commented that UNC is notorious for having a poor bedside manner—poor attention to anything other than the strictly technical aspects of caring for their patients. He/She said if they were to get cancer, they’d go to Duke for their care, because in technical terms the care is about the same, but in “people” terms it’s much better.

I’ve been wondering about this. The only difference between Duke and UNC is that UNC is a state-supported health care system with a mandate to serve the people of North Carolina, while Duke is a private health care system with a mandate to serve whoever can afford to pay. Both are for-profit enterprises, but I suspect that one is likely to attract a different kind of patient population than the other.

When you are charged to serve the masses, the great unwashed, hoi polloi, “the sheeple,” and you are physicians with many years of education and training behind you—far, far more than most of the people who come to you for help—does it make a difference in the attitude you assume toward your patients?

Could a subtle institutional awareness of class distinction between educated physicians and less educated, anxious, desperately needy patients account for the fact that (at least in my experience) patients at UNC are treated like children? Never presented with treatment options, never made to feel like a part of the decision-making team in their treatment, and their treatment wishes ignored even when they have worked out agreements with their health care providers in advance?

Inquiring minds want to know.

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Because of my recent clotting problem and the blood thinners I have to take for it, my surgery was a bit more risky, so Dr. N. made arrangements for me to stay an extra day in the hospital so that we could keep an eye on things. This meant that I was going to be transferred out of the short stay unit and to the Women’s Hospital. I had no sooner been installed in my room (one with a window and my own bathroom!) than I received visits from two people: the Home Health folks and someone from Patient Relations.

My parents were supposed to come out from Kansas to take care of me after my surgery, but my mom became very sick and they wound up not being able to come. Fortunately, my kids and my daughter-in-law said they could help me on the weekends and my friend Alice took charge of organizing my friends and neighbors to come “babysit” with me and bring me food during the week. The services to be provided by this rotating band of caregivers, however, did not include dressing a surgical wound and stripping drains. For that, I needed a Home Health nurse.

Apparently these kinds of things are usually arranged after the surgery is done, but my insurance company had indicated to me that they might or might not approve the expense for me, so I expected a delay once the request had been made after surgery, leaving me at home for an undetermined number of days without any help with wound management. Thanks to Dr. N, we were able to get the ball rolling early with this, but in the end, it didn’t matter very much.

The Home Health nurse who came to see me in the hospital and arrange for their first visit to my house told me that they could only come out two or three times to train my caregiver(s) in how to change my dressing and strip the drains.

“That’s assuming you have a caregiver to do that for you,” I said. “What if you don’t have any such people?”

“I’m sorry, but it doesn’t matter. That’s what your insurance will pay for—only our service as educators. And only for two or three visits.”

“Then what do people do when they don’t have such caregivers at home?” I asked.

Apparently the insurance company would then pay for me to go to an extended care facility until I no longer needed wound management.

“Isn’t that more expensive?” I asked.

“Yes,” she said.

Ah, health care reform…..

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I knew I wasn’t going to an extended care facility, so I figured that I would simply have to learn how to change my dressing and strip the drains myself. But this turned out not to be as easy and simple a solution as it sounds like it should have been.

My surgical scar runs from my sternum in the front, all the way around the right side of my chest and onto my right shoulder blade in the back. The drains were inserted almost completely under my right arm—I can just barely see where they enter my body. A person with two good, fully mobile and flexible arms would have trouble reaching and managing such a wound. With my right arm very immobile—and hurting like crazy when I tried to use it very much—it proved to be impossible for me to manage my dressings and drains by myself.

Dr. N decided to keep me in the hospital for yet another day, and I wasn’t averse to the idea. By Saturday night I was in a panic about how I was going to manage all of this when I got home. The Home Health nurse was out. My kids can’t stay with me all the time nor can they come out to my house twice a day to help dress my wounds. (Besides, what young man wants to see his mother naked from the waist up unless it’s absolutely necessary?) I couldn’t reach well enough to even try to do it by myself…. What was I going to do!??!

And then I remembered Bonnie Bent-Neck.

Bonnie Bent-Neck is a goat that my neighbors Rick and Tracy rescued. She had been born with a birth defect—a bent neck—so her original owners were going to kill her. At Rick and Tracy’s house, she found a loving home and the companionship of other goats, pigs, dogs, cats….a menagerie larger and more diverse than my own!

Then one day two years ago some dogs decided to chase the goats, and poor little Bonnie wasn’t able to run fast enough to get away. When Tracy got home after work, she found Bonnie lying, almost dead, in the goat pen with her right rear leg severely mauled and other bite wounds on her body.

A lesser goat would have given up and died, the vet said. But not Bonnie. Although her wounds were serious and very deep, although she developed gangrene, and although she lost whole muscles, she fought to live. Rick and Tracy helped her fight, chasing her down (yes! chasing!) and dressing her wounds twice a day for many months on end. And I had helped from time to time. Now, I wondered, would Tracy be willing to help me dress my own wounds?

The answer, when you have such good neighbors, is yes. (In fact, since then my other neighbor across the street, Lynn, has also offered to do this! I already knew I had very good neighbors, but I never dreamed they were *this* good!)

Since I got home, Tracy has been faithfully coming over twice a day to help me with my wound care. She brought me pictures of Bonnie that are now taped to my kitchen cupboards as inspiration: injured Bonnie in the truck, going to the vet; Bonnie laying in the straw in the goat pen, the huge, gaping wound in her right leg clearly visible; and Bonnie walking today—on all four legs!—in the grass.

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The other person who came to see me in my new hospital room that Friday afternoon was a young woman from Patient Relations. She said that one of my doctors had asked her to come talk to me because I had expressed some dissatisfaction with my care.

I thought this was very interesting, and I became immediately aware that one of two things might be happening. Either this was a sincere effort to deal with a patient who had had a less than stellar experience at the hospital, or else it was a fishing expedition to find out to what extent the legal consent forms that I had signed had been breached and how much trouble the hospital could be in because of that.

Who knows? Maybe both things were happening?

I told the young woman that she was right. The surgeon and the anesthesiologist had taken considerable time and effort to talk with me well before my surgery and together we had reached agreements about how the surgery would be done, in order to help me manage my mistrust of the medical profession and my anxiety about what would happen to me during the surgery. I had recordings of those conversations, I said. And I had written the essence of those agreements into the consent forms I signed. Despite this, the doctors had more or less totally ignored everything and had done what they wanted to do, anyway. And yes, I was pissed.

However, I said—and I enjoined her to secrecy—I had called each doctor and apologized to them. NOT, I emphasized, because I felt I had done anything wrong, but because I wanted them to think well of me and have warm, fuzzy thoughts about me. If she shared this information with them, I said, it would obviate the apology. So this one bit of info she could not share when she went back and made her report.

She was a bit appalled at the thought that I felt I had to do such a thing in order to get good care. (I’m appalled, too.) As it turns out, her mother had died of IBC, so she knew exactly what I have been dealing with, and she was a very sympathetic listener.

I explained that what happened in my surgery was of a piece with how I have been treated as a patient since I came to this hospital. It all began, I said, with my diagnosis, which I almost missed getting in a timely fashion because the care providers at first would not agree to give me the screening tests I wanted and omit the one I didn’t. (That one was not diagnostic for IBC and very often failed to pick up IBC at all. So I saw no point in subjecting myself to it.) Without that assurance, I was about to cancel my diagnostic appointment. Thanks to the intervention of a patient relations person, however, the folks in the breast clinic, including a nurse practitioner I’ll call “Edith,” relented and said they would comply with my wishes.

But on the day of my appointment, Edith proceeded to ignore the agreement and attempted to railroad me into getting the one screening test I refused to take. It had upset me terribly at a time when I was already frightened and anxious because I was pretty sure that I had cancer. I was just trying to get what my research had indicated was the best possible diagnostic care for myself, and instead I was being herded onto the fast-moving “cancer diagnosis and treatment” train, along with every other woman who had presented herself to the breast clinic that day and the day before that and the day after that. It was medicine by the numbers, not medicine for Brenda Denzler.

My subsequent care by my first treatment team, I said, had done little to change that impression. I was never presented with treatment options, was never made to feel like a part of the decision-making process, was more often than not shot down when I researched treatment options on my own and then asked about them….And now this surgery and anesthesia debacle.

I don’t know what her final report said. I could hope that it said something that would shake up the hospital hierarchy and make them change the way the doctors at the top of the food chain there do business. But I doubt that I—and the people of North Carolina—are that lucky. More likely, it was treated as one more incident of one more patient being upset.

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Although Dr. N was busy studying for her recertification, she came to the hospital every day while I was there to check on my progress. I thought that was very kind of her. I was touched. I couldn’t help but wonder, though, if it was what she would have done if she had honored our agreements during surgery and I had been a happy camper instead of a disgruntled patient.

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On Wednesday, six days after the surgery, I met Dr. N for a check-up and to get the results of the pathology report. She was accompanied by Edith. Both were very perky when they entered the exam room. My pathology report, they said, was very, very good.

I haven’t looked at the pathology report word by word, for myself. I’m afraid to. In what follows, I am just relying on the quick overview that Dr. N and Edith provided for me.

**There was no cancer left in the skin of the breast, despite the fact that the redness in the breast was still there.

**There were 22 nodes taken, and only 4 of them showed evidence of a “chemotherapy effect”—meaning that they had dead tissue in them indicative of cancer having been there and chemo having eradicated it. The rest of the nodes showed no evidence of having had any cancer in them at all.

**Of those 4 nodes with the chemo effect, one still had a miniscule mass of cancerous cells—only 0.02 mm in size. It takes a mass of at least 0.2 mm to qualify a node as “positive,” so technically I am node negative: I had no cancer in any of my lymph nodes.

**The mass near my chest wall that was removed was 2 cm in size, with 95% of it being dead tissue (killed by chemo) and only 5% active cancer cells.

I had to admit, they were right. This was a very good pathology report—almost (but not quite) as good as a pathological complete response. And I couldn’t resist:

“Wow! Just imagine how much cancer we might have killed if I’d been allowed to do a bit more chemo like I wanted.”

Dr. N and Edith just grimaced.

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My doctor-friend, Julian, says that more chemo might not have done me any good. The remaining cancer cells, he said, are most likely chemo-resistant.

This makes sense to me, as regards the chemo I had been taking. But there are other chemo agents out there and surely the cancer could not have become resistant to them, as well, without having been exposed to them?

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On Friday evening Dr. M from Cary called me. There is a big breast cancer conference in Houston every year, and he was in the airport waiting for his return flight after having attended it. He had been talking to Dr. C, my new oncologist, who also attended, and they had been checking up on my pathology report. They were very pleased with it, he said.

I replied that I, too, saw it as very good, given that it was not a pathologic complete response. He said that had we done radiation therapy before surgery, I could probably have gotten a pCR, but it would have been a pCR on the basis of chemo and rads, rather than chemo alone, which is the context in which such outcomes are usually discussed.

He said that because my path report was so good, he would not recommend any further chemo, but would recommend I go straight to radiation therapy.

Although I haven’t talked to Dr. C yet, I had figured that one out for myself. The way I see it, presumably the chemo has taken out any micro-metastases that I might have had—little islands of cancer cells scattered throughout my body that were too small to show up on all of the tests I had right after I was diagnosed. The hormone therapy I’ll be on for five years after I finish active treatment should keep any micro-mets that the chemo missed at bay, or make it easier for my body to do the job, itself. The final phase of active treatment, radiation therapy, should concentrate lethal power against any cancer cells that may remain in the loco-regional site, where the cancer presented.

I asked Dr. M if he could quantify how good my path report was as compared to having gotten a complete response. He said that if there were 100 women with my kind of breast cancer who had gotten a path CR, we would expect 90 of them to be alive and well ten years later. If those same 100 women had gotten a path report like mine, he said, we would expect 85-90 of them to be alive and well ten years later.

Not bad.

Twice during my conversation with Dr. M I thanked him for how he had treated me that day when I saw him, before my surgery.

“You presented me with treatment options and made me feel like a part of the decision-making process,” I said. “I have waited five months to get that from my treatment team. I’m very grateful to you. That was very valuable to me.”

Who knows? He was sitting there in the airport, talking with my (new) oncologist. Maybe, if I keep sending this message through enough different channels, it will eventually make its way back to those who most need to hear it? She’s done well so far, my new oncologist. But it never hurts to give a care provider a window into your interests and motivations as a patient.

If we’re lucky, the whole thing will go viral.

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My therapist, Val P., was pleased with my pathology report. She has nursed me carefully through all of my angst and anger, these last four months, as I have tried to figure out how to deal successfully with my treatment team at the hospital. This week she was happy to hear that I have had a positive outcome pathologically, though she was saddened to hear about the violations of trust.

“Brenda,” she told me at the end of our session, “I think that you and your body have done well, despite what your treatment team has done—or failed to do—to you. It’s perfectly understandable to be upset over what happened with this surgery. But I think that maybe how you do in your fight against cancer is not really related to whether you can control how other people treat you.”

She’s probably right. I do feel somewhat more positive about the future—my future—since receiving the pathology report.

But I don’t know what to do about what happened. I’m still processing the events and my feelings about them, which are not positive.

One thing I do know: I’m very, very hesitant at the thought of having Dr. N or Dr. S do any work for me in the future. It’s clear that they don’t honor their word when they give it. Why would anyone want to have a business, much less a therapeutic, relationship with people like that?

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Lymphedema Watch:

Since I woke up from surgery, my right arm has hurt. A lot of the time it aches with a dull throb. Sometimes it’s sharp stabs of pain. At first, the skin on the bottom of my upper arm was numb. In the last few days it’s become so sensitive that even letting the sleeve of a shirt touch it causes little rivers of pain. And to me, the arm has looked a little swollen. Given that I had a level 3 axillary node dissection, I’m very much at risk for developing lymphedema, so some of these symptoms have been of concern to me.

On Friday (yesterday) I visited my lymphedema therapist. She reassured me that the swelling so far is probably post-surgical trauma, not lymphedema. But she gave me one of those hated compression sleeves to wear, in order to try to force the fluid out of my arm and into the lymphatic system in my trunk. Imagine wearing a girdle. Now imagine wearing a girdle that is three sizes too small for you. THAT’S what wearing a compression sleeve is like.

Sigh.

As for the numb skin that’s now exquisitely sensitive to touch, that’s probably a sign that the nerves there are growing back together.

So far, good news all around.

Except for that darned compression sleeve!

The biggest part of my visit consisted of getting a lymphatic massage. Now, I’ve had massages before, many times. I’ve had deep tissue massages that would make me wince. But what Val did was so light and delicate, I had trouble believing that it was really doing anything at all.

Until a few hours later.

The first thing I noticed was the muscle around where my arm meets my chest. It began to hum. Seriously. It hummed. Val told me that patients have varying reactions to these kinds of massages, including a “fizzing” feeling in the remaining lymph system in the area of the surgery. When I felt this, I knew it’s what Val was talking about. I’d felt it before in other parts of my body and had always described it to myself as a “hum.” I was pleased to feel this humming in my axilla. Another sign that perhaps my lymph system will recover?

A few hours later a mild back ache set in all along the spine where she’d manipulated my lymph nodes. This morning Tracy said that she thought I was slightly bruised along the top of my shoulders, which is another area where Val had been gently massaging my lymph nodes.

All I can say is, thank God she only massaged me lightly and delicately! If she’d put any force behind it at all, I’d be bed-ridden today!

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Val C. is the person who has told me to take it easy for the first two weeks after my surgery. The more you push yourself to move around and do things in the immediate post-surgical period, she said, the more fluid your body produces. You don’t want to stress your damaged lymph system by producing excess fluid during these days when it’s trying desperately to re-grow its severed lymphatic connections.

So I’ve been trying very hard to be still. Thanks to Alice and Lynn and all of the people they’ve coordinated to be “babysitters” and cooks for me, I’ve been doing a pretty good job of it. If it takes a village to raise a child, it also takes a village for someone to be a successful cancer patient. And I think, so far, I’ve been pretty much a success.

At the risk of forgetting someone who I should be remembering, I’d like to give a shout-out to a few of my “village people” who have been so wonderfully and warmly helpful in these last couple of weeks:

My kids (Graham and Todd), my daughter-in-law (Michelle), Judith, Alice, Lori, Jean, Mike, Tracy, Lynn, Rick, Dennis, Nancy, Val P., Val C.—and, of course, the legendary and inspirational Bonnie Bent-Neck!