For those of you with little interest in traveling through the darkest parts of my psyche and no desire to know much about my spiritual life and health, you may want to stop reading now. Forever. Because I think that's what this is likely to be about from here on out. Unless I get a recurrence....
I would ask, though, that you continue to remember me in your prayers and meditations. I am, in short, not in a good place at all, and it’s likely to take me some time and effort to get to a good place…. I really need your help.
For the rest of you who dare to dive deeper into what’s going on….
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I am planning to talk to my surgeon, Dr. N., about what happened during my surgery in December. I find that thinking much about it still upsets me. If I just ignore it, I can feel fine. But when circumstances force me to think about it, I can be plunged into a dark and anxious and angry and helpless place again. It seems to be linked strongly to my hospitalization experience when I was five years old. The two are parallel events, in some ways.
This tells me that the surgery is an event that I need to process more fully, so that it doesn’t sit there in my psyche and fester. I’ve been trying to do that, and one way is by talking again to the surgeon, which I will do.
Preparatory to that talk, I spoke with another surgeon. She quickly looked at the pathology report from the surgery and noted that it says there were fibrotic changes to multiple nodes, which could be why Dr. N. decided to take Level 3 nodes –– because fibrotic changes she felt at the lower levels were indistinguishable (without a microscope) from cancerous changes. So to be safe, she took Level 3 nodes.
So I went back and read the pathology report yet again, and I had a question about one of the terms used in the report. I couldn’t find info I could understand well on the Internet, so I emailed J-Rad to ask him what the term meant. He explained and told me not to worry about it.
I replied I wasn’t worried about it, but I have been unhappy with what Dr. N. did during my surgery, and I have been trying to figure out if perhaps some of the grounds I have for being unhappy –– that she took Level 3 nodes but didn’t have to –– are not fair grounds for disapproval. (The whole issue of her letting a resident cut on me when she specifically agreed not to do so –– that’s another issue.)
J-Rad responded by saying that taking Level 3 nodes was standard procedure in these kinds of operations. Then he said this (and not for the first time):
Honestly, Brenda, your physicians did a bang-up job treating you and you not only don't appreciate it, you are angry about almost everything they did. You have basically opposed and gotten angry about almost everything they did. Had they let you have your way about things you would be dying at this point.
That set me off. Sobbing profusely, I responded:
Dr. N. –– of her own volition –– in our pre-op consult said that she WOULD NOT just routinely take Level 3 nodes. She did not indicate it was proper surgical procedure and that she would do it regardless. She voluntarily told me she would only take them if it seemed necessary.
So why did it seem necessary? I expected her judgment about whether it was necessary or not to conform a bit more closely to what the final pathology report showed. Instead, there was a
great discrepancy between the two.
I am trying to figure out why there may not have been as great a discrepancy as I have thought there was. Though you cannot seem to see it, I am trying MIGHTILY to find the rational reason not to be disappointed and angry with her. I'm trying to ratchet DOWN my emotions on the subject of what happened at surgery. Though it obviously doesn't look that way to you. I'm trying hard to cut this woman some slack, by coming to what I hope is a better understanding of why she did what she did.
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As for my being angry, J-Rad, you are right. I am angry that I got this damned disease. I am angry that I never seemed to be able to communicate my values and priorities to my doctors in such a way that they could (or would) understand them. I felt that I had to watch my own back all the time –– that is, I had to make sure that my values and priorities were being taken into consideration and that agreements were being honored -- because I found that I could not count on them to watch it for me. In fact, I am not just angry. I am literally heartbroken. I have spent hours and hours and hours sobbing over this. You have NO idea.....
For you doctors, cancer is a disease process that you are trying to cure. That's it. Pure and simple. You see me, and you see IBC walking in the door and you try to visualize how to cure it.
That's great, as far as it goes. But it doesn't go far enough.
For me as a patient, cancer is a whole life event. Not just a disease. And I don't think most of you very fully appreciate that fact. The cancer as a disease integrates into values and ideals and priorities and concerns for me. The experience of having it integrates into my daily life and my personal history in deep ways, given what happened to me long ago. (I know. It's old. But I find that, like post-traumatic disorders, it is very much alive for me. I can't seem to just will it away. It plays a huge role in how I am able to deal with the medical world, when I have to deal as closely and intimately with you all, as I have these last many months.)
None of you doctors are going to die of my cancer. You will all walk away from this. Every last one of you. I may not. I could very well die of my cancer, even if you guys do your very best
"disease-curing" work. You can give me breathing problems and heart problems and
lymphedema and every other side effect that your treatments give patients, and I could still die from this.
So if I want to question what you're doing and how much of it you're doing and what the rationale is for doing it, I have every damned right to do so! And I have a right to have it explained and
explained to me over and over again until it makes sense to me or until I reject the treatment outright!
I have a huge, huge stake in what you do to my body. Because I live in this thing; you don't. You doctors dole out these treatments, but at the end of the day YOU don't go home with your arm hurting for no discernable reason. You don't have shooting pains across your chest and under your arm where your breast and your nodes used to be. You don't have a chest that hurts now just when it is gently touched. I mean it literally hurts to the touch. A gentle touch. You don't wonder when you pick up a 17-lb. bag of dog food or a 5-lb. bag of cat food whether this is going to be the exertion that makes your arm swell up like a balloon. (And lymphedema DOES hurt. It aches and hurts.) You don't have pain in your hip radiating down your leg because of the drugs (presumably) that you are taking to hopefully keep the cancer at bay. You don't have a cough that's just a little bit different than your old, normal "reactive airways" cough and wonder if it's radiation pneumonitis or cancer or just reactive airways behaving differently now because of your treatments. You don't catch a cold twice in one month when before cancer you might catch a cold once a year. You don't have subtle memory problems. Or a kind of fatigue that just doesn't get better no matter how much you sleep. Your hands and feet don't burn and tingle. You don't drop things more often, or lose your balance more easily.
You doctors have not dumped massive amounts of poisons into your body. You have not lopped off body parts. You have not allowed yourself to be shot up with more radiation than any sane person would normally expose themselves to. Everybody else runs from the room...and you [the patient] stay in there day after day and get both the target areas radiated and just a little bit
of everywhere else, too, from the scatter radiation.
And all of this is supposed to be just hunky-dory? Wonderful? No problem? Perfectly normal?
Perfectly acceptable? Right? Well, in the world I came from, it is exactly the opposite of all those things. But I had to allow it to be done to me. Over and over and over again.
And with all of these things, the survivor lit encourages you to paint a smiley face on yourself and get on with your life as if nothing has happened. I ****DESPISE*** the survivor literature that I have read so far!
Goddam it, J-Rad. Something unbelievably HUGE has just happened to me. And a smiley face won't make it all better. Something that forced me to violate my most fundamental values, in order to try to live. Something that forced me to allow you all to hurt me over and over again, in the name of hopefully helping me to live. Just like you had to hurt me over and over again when I was 5 years old in order to help me to live. But you DID hurt me. Over and over and over again. You held me down and hurt me, and I was a captive to the entire situation. I couldn't get up and go home. I was alone and at the mercy of whoever wanted to do whatever to me. And I had to allow that to happen again, this past year. You did unspeakable things to my body, and I had to allow it, in order to try to live. Try. No promises. Just try.
You did it for Ashley, my cancer mentor. And she is dying now, even as we speak. She has only a
few days left, probably, at this point. You did it for Nancy, the woman who told me that my symptoms sounded like IBC and I needed to get to the doctor. She was the first person who saved my life (you doctors and your nurses being the other people who saved my life). But two weeks ago we learned that her BC has come back.... She is now Stage IV.
These two women have been my role models. They taught me what it meant to have cancer and fight it. And now look. They are not doing very well. And I am certainly no better than they are. I have submitted to all of the nasty things you all wanted to do to me, and it may turn out exactly the same for me as it is for Ashley and for Nancy. My world, my body, violated. And for what purpose?
I have allowed you to do the same kinds of things that you did for Ashley and Nancy, to me. Those things have violated some of my most sacred values, but I allowed you to do them because it was my best chance at living. But they didn't work for Ashley and they didn't work for Nancy. And they may not work for me.
And at the end of the day, you doctors go home and may feel bad for a little while because they didn't work for me. And me? For now, I cope with the side effects you gave me. Tomorrow, I may die.
I am angry that the survivor literature says that now that treatment is over, you need to talk with your doctor about the long-term health effects of your treatments. That's about months and months too late to be having THAT conversation! What a load of crap! That is the most disempowering thing for patients that I can imagine!!!!! Just like the young man coming from the
pharmacy 30 minutes before my first chemo, handing me a one-page sheet with big, big type on it that described in one or two words some of the possible side effects of AC. That kind of last-minute, bare-bones "consenting" is a pile of crap!!!!!! Patients need to be fully informed!
I had an anesthesiologist tell me that he didn't tell patients about some of the potential side effects of undergoing a particular kind of anesthesia because if he did, they might not have their procedures done. Where is the proper "informed consent" about that!!!????!!!!!! Patients need to have all of the info, up front. And if some walk away and refuse to have the procedure...well, then that is their right. It is NOT the doctor's right to withhold information because he/she is afraid that the patient will refuse the procedure if the patient knows the full truth!!!! Yet it is done.
I am angry -- nay, furious! -- that ASCO [The American Society of Clinical Oncologists] frames its surveillance guidelines [for breast cancer] in terms of what is best for the health care system ("we can't cure a recurrence, so why work to find it early") rather than what is best for the patient. As if there is one and only one end point of treatment that is valuable, ASCO defines what that end point is, and if they can't reach that one end point, they don't want to "play the game" any more. They have no interest in helping the patient beyond the necessary palliative measures. Once again, my values and priorities are NOT being reflected in what is customary and usual in Cancer Land.
Goddam it, J-Rad. Yes. I am so furiously angry that I don't know what to do. I am grateful that my treatments have been a success. I am grateful that I have a chance to live. I am grateful that I am not dying right now, even as Ashley is dying. I am grateful that I am not Stage IV like Nancy.
At least, not yet.
But I am not happy with what I had to let you do to me. I am appalled and horrified by what I had to let you all do. And to think that it might not work, in the end. My principles and values violated -- to what end? So that I can die, too?
I hate this, J-Rad. I hate it. I hate the cancer. I hate what I had to let you do to me. I hate that I
tried to convey my values and priorities but always had to double-check what was being done to me, because I might not (and in some cases did not) get what I was told I would get. What we ***AGREED TOGETHER*** that I would get. Of all the violations, this one just ices the cake.
The surgery with Dr. N. is just one example of that. We talked. We reached an agreement. She violated that agreement. Pure and simple. And NOT just about taking the nodes. There is more
to it than that.
Yes. I guess you're right. I'm so angry I don't know what to do. I'm so furious, I understand why people with autism will bang their heads against brick walls until they are bloody.
For me, I have just undergone organized, methodical brutalization delivered in the name of health. It appears to have worked to spare my life. So far. Only time will tell. According to the survivorship lit, I am supposed to ignore the brutal means used, and celebrate the fact that I'm alive. We're just going to sweep that "brutal" part under the rug, right? Because it doesn't matter.
I walk in the ACS [American Cancer Society] Relay for Life and get applauded by everyone else...but I can't figure out why I'm being applauded. I just had the bad luck to get sick. And then I had to submit to brutal treatments to try to get well. We don't know for sure that they worked. ASCO isn't really interested in finding out whether they worked, either. If I get sick again, we'll know they didn't. For THIS I get applauded?!?
I have been scoured by my treatments, from the deepest pit of my soul to the bottoms of my feet and the palms of my hands. Nothing is the same. But I'm still alive. For today. So I'm supposed to be happy, right? That's what the survival lit says.
But something profound *HAS* just happened to me. I am grateful to be alive, J-Rad. But from the very core of me, outward, it's not the same life.
What has happened to me is brutal –– both the cancer and the cancer treatments. It feels, quite frankly, like being violated. Over and over again. I am fully aware that when I was 5 years old AND now, today, what was done to me saved me life. I am grateful for that. But it doesn't change the fact that what was done felt brutal. It felt like a violation –– 50 years ago, and last year. It was a violation of my body, its integrity, its health (in ways different than the cancer was violating its health). It was a violation of my values, for me to submit my body to that kind of treatment. It was a violation of my worldview. It was a violation of who I am. My personhood. My identity. It's all gone.
The cancer changed my life. You doctors and your treatments *also* changed my life. If I felt the abyss opening up under my feet and wanted to check, double-check, question, question again, debate, request alternatives, etc., when it came to my treatment, there was –– and there still is –– nothing wrong with that. If I learned that I had to double-check what was being done to me, because agreements were not always followed through upon, there was and still is nothing wrong in my doing so. Because *you doctors* go home at the end of the day, unaffected by the treatments you have given me. I don't have that luxury. I live very intimately with the effects of the treatments you have given me.
I value your friendship and your guidance and education, J-Rad, but if how I feel and how I behave makes you mad at me, then so be it. I had and I still have EVERY RIGHT IN THE WORLD to question what was done, what is being done, and what will be done in the future. That won't change. I am not and will never be a passive patient, until I am comatose and/or on death's door.
What I hope I can change, with time and effort, are my feelings. I find that I'm still very unhappy with a couple of things that Dr. N. said she would do...but then did not do. (The nodes are just one of those issues.) I'm very cognitively based. Cognition can trump emotion. Hence, my effort to come to some rational understanding of why Dr. N. did what she did, when she told me she would do something else entirely. If I can rationally understand it (assuming a rational reason exists), then maybe I can quit being so unhappy about what she did. Maybe I can feel that if I ever needed surgery in the future, I could trust her to be as good as her word. But right now, I'm not too sure about that.
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Sobbing. I’ve been doing a lot of that lately. I was doing reasonably well with my survivorship stuff until I learned that Ashley’s radiation oncologist had “warmly” urged her to seek hospice care, because there was nothing more that could be done for her.
How do you do that, I wonder? How do you look someone in the eye and tell them that you don’t want to treat them any more because it won’t help them get well or even just stay the same, and it will only make them feel worse than they already feel –– which is pretty darned bad, already? How do you tell someone that you cannot help them, and that in very short order, they are not going to exist any more? At least, they are not going to exist in the embodied, fleshy way we all tend to think about our everyday existences.
I was just beginning to adjust to the idea that Ashley, my cancer mentor, was losing her fight against ovarian cancer, when two weeks ago I learned that Nancy, the woman who first saved my life by correctly identifying my symptoms and telling me to get to the doctor, has had her own breast cancer return. She is now stage IV, with metastases to her liver and lungs. And as Dr. H told me on October 19th last year, “When you get a recurrence, it’s Stage IV. There is no cure for Stage IV cancer.” No matter how often I hear of people who have beaten Stage IV cancer, his words ring inside my head. I may never be able to get rid of them, no matter how hard I try.
Nancy’s diagnosis has been the final straw. These two women have been my role models in my fight against cancer. They were right here. I could talk to them, face to face, any time I wanted, about anything. Now Ashley is dying and Nancy is sick again. I have been devastated. Devastated to be losing them. Devastated that my role models are not making it. Devastated for me. Angry at this cancer. Furious that they are going through this –– that anyone should go through this!
My therapist has suggested that I need an anti-depressant. I had a clinical depression in the summer of 2001, courtesy of a major pharmaceutical company who later apologized to me (and a bunch of others in the class action lawsuit) rather handsomely. Based on that experience, I know I’m not clinically depressed right now. But I am pretty well down the path toward it. I recognize that. Still, I just can’t bring myself to take an anti-depressant, both because of my previous experience and because of Nancy.
Last summer, shortly after I’d been diagnosed, I remember Nancy telling me that new studies had revealed that the anti-hormone drug she was taking to try to keep her cancer from returning was made less effective if it was taken with a certain anti-depressant. She was taking that anti-depressant, so there was a flurry of questioning about what she should do. Is her recurrence related to this? I suppose we’ll never know.
I’m taking a different anti-hormone drug, and I don’t know if the anti-depressant my therapist suggested is the same one Nancy was taking. All I know for sure is, these kinds of drug interactions can occur. If I take an anti-depressant now, will I wake up in 2-3 years to find out that I haven’t been getting the full effect of my anti-hormone pills because of interactions with an anti-depressant? Do I dare take a chance?
One of my IBC sisters is a pharmacist. She has checked out the possible interaction between my anti-hormone pill and the suggested anti-depressant. She says they are metabolized by the liver using different enzyme pathways, so there should be no interference between them.
Still…can I take the chance? It’s frightening….
For now, I’m taking some nutritional supplements to support neurotransmitter function. We hope they will help.
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Another thing that helped set me off on the course toward depression was participating in a “survivor” workshop. A doctor who was a guest speaker observed that for breast cancer patients, there should be NO active testing of any kind for recurrences. No blood work. No imaging, except for the yearly mammogram that everyone past a certain age is supposed to get. “Surveillance” should consist primarily of passive, visual examination of the breast(s) and asking the patient how they’ve been feeling.
Citing the American Society of Clinical Oncology (ASCO) guidelines, he explained that the reason for this is because whether you do active testing (blood work and imaging) and find the recurrence early, or you do no testing and find the recurrence only when it is far enough advanced that the patient has symptoms, the outcome is the same: there is no cure. The patient will die.
So there is no point in doing testing.
Just a few days before this workshop, J-Rad had responded to another question from me, telling me that doctors were “not enthusiastic” about doing a bunch of surveillance testing because they knew they couldn’t cure whatever might show up.
These two pieces of wisdom from the Medical Establishment were not good for my mental health.
The whole issue, you will note, is framed ENTIRELY in terms of what is good for the doctors (and the insurance companies, I suppose). *They* can’t cure the cancer if it comes back, so *they* don’t see any point in finding it early.
But what if the survivor with the recurrence feels differently about the situation?
Suppose that the breast cancer survivor’s personal priorities, if they do get a recurrence, are to try to beat the cancer back into remission again. Granted, the statistical odds are not in their favor. Recurrent breast cancer is notoriously hard to put into remission.
However, it does happen sometimes. And if a survivor wants to try for remission if they get a recurrence, that ought to be respected and facilitated, instead of ignored by engaging in only passive surveillance.
After all, if the survivor was not “a statistic” at the time of their initial diagnosis, when they were asking about their chances of survival, and were being told what the stats say, and were being reassured that the stats can’t predict how any given individual will do –– then that is just as true when it comes to the statistics about recurrent breast cancer.
The statistics may say it’s hard to achieve remission, but the statistics can’t say what the outcome will be for any given individual survivor with a recurrence. If a survivor wants to fight again to try to achieve remission, early detection would be important in helping them do that.
But suppose that “curing” is not the only worthwhile goal, and thus not the only reason for having a more aggressive surveillance program for breast cancer survivors.
Suppose that things like the survivor’s peace of mind would be improved by a more aggressive surveillance program. For some people, you know, ignorance is NOT bliss. Some people would feel anxious, not knowing how they’re doing. They’d feel better trying to do all they can to be vigilant about their health, after having cancer. And this vigilance might include actively watching for early signs of recurrence.
Suppose the breast cancer survivor would like to attack any recurrence with both conventional and more complementary medical approaches. Early detection of a recurrence may make no difference for conventional medicine, but it makes a big difference from the point of view of complementary medicine, because the less tumor load you have to try to do battle against, the better. (Why this wouldn’t be true from the point of view of conventional medicine baffles me, but…so much of conventional medicine baffles me anyway.)
Or suppose that the breast cancer survivor is interested in improving their quality of life, if they get a recurrence. Maybe they don’t believe it will be possible to put the cancer back into remission if they get a recurrence, but they are interested in preserving their quality of life for as long as possible by bringing the recurrence under control as soon as possible, before it has produced symptoms that will diminish the survivor’s quality of life.
Apparently the wise and all-knowing physicians of ASCO either have not considered these things…or do not think them worthy of honoring by incorporating them into their surveillance guidelines.
All I know, for sure, is that when I hear these guidelines trotted out yet again to justify NOT doing any substantive surveillance for me as a breast cancer survivor, what I hear is this:
“If we don’t think we can cure you, we’re really not interested in trying to help you too much any more. You’re going to die. Too bad. Now, who’s my next patient who has a new breast cancer that I *can* try to treat successfully?”
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I’ve been thinking of what it means to treat a disease, as compared to treating a person.
If you are treating a disease, and you don’t believe that the disease can be cured, it stands to reason that you would have a “lack of enthusiasm” (as J-Rad put it) to engage in activities to detect the disease earlier rather than later. If you can’t cure it, it doesn’t make much sense to rush to find it. Let it show up at a gross, symptomatic level whenever it will. Then do what you have to do.
But if you are treating a **person**, whether or not you can cure the disease they have is only one among several considerations when it comes to detecting and dealing with a recurrence. There may be some very good reasons to try to detect the disease as early as possible, before it shows up at the gross, symptomatic level.
It all depends on how you want to frame the issue. I think ASCO has framed it very poorly, and that poor framing has impacted the quality of care that thousands of women receive from their ASCO-obedient oncologists.
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Nancy’s recurrence, ironically enough, was caught early. At the request of her surgeon (apparently not a person in thrall to ASCO), she was having a yearly MRI. The routine MRI found spots on her liver. A follow-up CT scan found them there and in her lungs.
Her own oncologist was out of town, at the time, so Nancy talked to another oncologist at the hospital, who told her that finding the metastases early was not necessarily a good thing, because the tumors in their “early” growth period would be more resistant to treatment. There was no explanation for why this is, and I’ve been able to find none since then.
When Nancy’s regular oncologist got back into town and talked with her, the message was different. “Well,” she said, “you have several things going for you. You are otherwise in good health. And we’ve caught the recurrence early.”
So…which is it? Is it good to catch recurrences early, or not?
What is even more interesting is that Nancy’s oncologist is my new oncologist. She didn’t want to do any active surveillance for me (per ASCO guidelines), but has agreed to do blood work that I requested, as a concession to me. If she really believes that early detection is a good thing (as she seemed to indicate to Nancy), then why didn’t she suggest some kind of active surveillance to me, herself? Why did I have to bring it up to her, instead?
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I had been wanting to go to the beach, after I finished treatment. I just wanted to go and listen to the sound of the ocean. I needed that, for some reason. So when I learned that there was going to be a “Coping with Cancer” Symposium for a day at Kitty Hawk on April 30th and May 1st, I decided to go and kill two birds with one stone.
The Symposium was put on by a group of organizations affiliated with the hospital where I’ve gotten my treatment. It’s only their second time doing it, so it’s still small, which made it very nice.
I went determined to be an anthropologist. When I go to the hospital or the clinic for treatment, it’s all about me. Or at least, it’s supposed to be. I’m the patient. I’m the one who is the focus, and my needs, desires, values, priorities, etc., should be front and center –– even if I have to fight to put them there!
But the Symposium, I thought, was not all about me. It was all about the Medical Establishment and what *they* thought, felt, believed. While the things they say might make me upset in a clinical setting, when they conflict with my own values and needs and threaten to get in the way of my getting the kind of treatment I want, in the setting of a symposium it was all about them. I went prepared to observe and listen, as a good ethnographer in a strange land, determined not to react.
I came away with two impressions. The first was some surprise at ideas or attitudes that were introduced to us as “challenging the status quo” or “progressive” in terms of patient care. I felt, for the most part, that the ideas and attitudes being suggested were pretty tame. If *that* was what they considered “pushing the envelope” of patient care, then no wonder I come across as being completely off the map!
The second was that they are driving with one foot on the gas and one foot on the brake. While they give a lot of lip service to becoming more patient-oriented and responsive (the gas), they also have huge issues with instilling more of their own humanity into their patient care (the brake).
In a breakout session that was the next-to-last event, I told the story of the medical student who had cried with me. I had explained how it was one of the most positive, humane things that any of my care providers did for me while I was sick –– to care enough about an issue involving me that she would cry.
The facilitator of this break-out session responded to my comment by launching into a little dissertation on how important it is for health providers to keep their own “stuff” from bleeding into their interactions with their patients. I was a bit baffled by his response…until the final presentation, which was by a former employee of his, who struck essentially the same note.
The final presenter was a psychologist who worked with cancer patients at a large hospital. Then one day she herself became a cancer patient. Her talk was all about how difficult she found it to maintain her professional identity and hide the fact of her illness –– her status as a fellow patient –– from the patients she was working with.
Like I said –– gas and brake. They want to be more patient oriented and caring, but they are scared to death of letting their humanity show through. Even in their own hour of need. Even when that need is exactly the same as the needs of the patients with whom they work.
I understand the need to keep your own “stuff” out of your interactions with your patients; I had a therapist once many years ago who seemed to have trouble doing this. I’d sometimes wonder whether our sessions were about my issues or his issues!
But there’s a big difference, I think, between keeping your own stuff out, and keeping your humanity out.
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One of the nice things about the Symposium was the chance to meet other cancer survivors in a social-type setting. One woman I met said that she was a breast cancer survivor and that she had had just about every side effect she could get from her cancer treatments.
As we talked, I learned that among those side effects is permanent heart damage from taking Adriamycin, which I also took. I knew about the potential heart damage. What I didn’t know was that the damage it can cause comes in two varieties. The first is damage to the heart muscle itself. This is the effect I knew about. The second (the one I didn’t know about) is damage to the electrical system within the heart muscle. She has the second type of damage.
Cancer treatment. The gift that keeps on giving and giving…. Did the Co-Q 10 and the other neutraceuticals I took protect my heart? I guess only time will tell.
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When I went to the beach, my chemo-sitter, Judith, and her 5-year-old granddaughter, Jasmine, came with me. After the symposium was finished, I went for a walk on the beach and out onto the pier with Jasmine. There was a group of teenagers fishing off the end of the pier, and they were taking in quite a haul. They’d throw their lines into the water, pull up a fish, take it off the hook and toss it onto the pier, and then throw their hooks back into the water. As we walked up, the pier was littered with fish flopping all around. Jasmine asked me what the fish were doing.
“They’re dying,” I said. “They can’t breathe. They’re laying there slowly suffocating.”
My worst fear about dying is not being able to breathe. Not being able to fully and completely fill my lungs with air. Expand my chest. Lower my diaphragm, and fill my lungs. Being short of breath. Seeing those fish there, flopping around, dying, suffocating in front of me, was sad. A little mini-drama involving one of the worst feelings I can imagine having.
I kept hoping that one of the desperate fish, gasping for air, would manage to flop in just the right way to slip between the floor boards of the pier and fall back into the ocean below. But none ever did.
And I thought, life here is cheap. Life on this planet HAS to be abundant. This earth has to team with life, because life itself is so cheap. Not precious, but cheap. Things die constantly. Either because they are a part of the food chain (life feeds on life, here), or else for no particular reason at all.
Here I’ve been trying to save my own life, as if it mattered. As if it were worth something. As if it were meaningful.
But it’s not. It’s just another instance of life on this planet, on this level of reality –– and life on this level of reality is cheap. And that includes mine. Easy come. Easy go.
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Of course I wore my compression sleeve when I went to the beach. Jasmine, being a very observant young lady, wanted to know what it was and why I didn’t wear one on my other arm, too.
I explained to her that I wore it because I got sick and had to have surgery, and my arm got injured when I had the surgery. So now I have to wear the sleeve, to help the fluid under the skin in my arm to move the way it should. But I only had surgery on one side, so I only wore the sleeve on one side.
I told her that when her Grammie left all the time last winter to go help the friend who was sick, I was that friend. She was helping me. Judith hurried to explain to Jasmine that I’m OK now. And I reassured her. Yes. I’m OK now. I’m all well.
When we got ready for bed that night in the hotel room, I tried to be very discrete when I took off my foob and put on a T-shirt to sleep in. Jasmine noticed, though, that one side of the T-shirt was poofy with a breast, and the other side was flat. She came up to me and stared for a moment at my chest, then put her little hand out and ran it thoughtfully over the flat side.
I said, “That’s where I had my surgery. My breast was sick, and it was going to make all of me very sick if I didn’t do something. So I had to take some really strong medicine and then I had to have the doctor cut my breast off. Do you want to see where it was cut?”
She said yes, and Judith nodded that it would be alright. So I pulled up my T-shirt and showed her my mastectomy scar. I explained where my breast used to be, and showed how the scar reached all the way around to my shoulder in the back. I showed her my hollow arm pit where the nodes were taken out. I let her touch my skin and run her hand along the scar and feel the ribs lying like elongated pieces of hard rock just beneath my skin. There was nothing soft and fleshy and squishy about my chest, like there is on her Grammie and her mom. There was just hard chest and a big scar.
She was quiet, respectful, and fascinated. I think it had never occurred to her before that grown women could not have boobs. That boobs could be cut off. What a concept for a 5-year-old to absorb!
Several times after that, she grabbed my at-risk arm and began to give me a massage on it. I told her how to massage from the hand up to the shoulder, to move the fluid in the same way that the sleeve does. It felt pretty good, actually. She has powerful hands, for a 5-year-old!
I figure I’ve either scarred her for life, or else maybe been an inspiration for the person who will grow up to discover a cure for inflammatory breast cancer!
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During the third week in April, I had the opportunity to do something I’ve been wanting to do for decades. A benefactor helped me go to The Monroe Institute in Faber, Virginia, to do what they call a Gateway Voyage. Think of it as a spiritual retreat in technological guise….
I had some interesting meditation experiences while I was there. I’m still processing some of them. And, frankly, I’ve forgotten many of them. They’ve been swamped by the distractions of my daily life, including all of my current survivorship issues. Not to worry, though. I took my laptop and worked very hard at taking thorough notes on each and every meditation we did. I need to go back and look at my journal entries. Something in there might help me make it through this hard patch I’m going through.
One of the things that I found most interesting was the appearance there of a man named Bill. (The Voyage is conducted in groups. There were 23 of us in my group, plus two leaders.) He arrived at about the same time I did, and coincidentally enough, he left at about the same time I did. He was in the room right behind mine – he “had my back,” as it were, the whole time I was there.
The reason that is funny is because there is one group of people whom I’ve wanted to feel “had my back” during this cancer journey, but whom I could never quite feel secure with: my doctors. They had their own agenda, and getting them to include me in the decision-making process, or present me with options, or live up to their promises to me, precluded me from feeling very safe with them. And guess what Bill-who-had-my-back was? That’s right. A retired doctor.
And he was not just a general practitioner or an ear, nose, throat specialist –– kinds of doctors that I have not had to deal with, not had any trust issues with. He was a retired anesthesiologist –– one of the kinds of doctors that I had trouble with, though the one I have had the least trouble with. So as it turned out, an anesthesiologist “had my back” the whole time while I was at the Gateway program.
The ironey gets better. Guess when he retired? Just about the same time that I was getting diagnosed last summer. Interesting coincidence, no?
It gets even better than that. Guess what his last name is? The same as the first name of my first (now former) oncologist!
So, as it turned out, a guy with the same name as my former oncologist, with whom I was so profoundly uncomfortable and who I felt I could never trust to have my back in a way that was meaningful to me (which is why he’s no longer my oncologist), “had my back” the whole time I was at TMI.
When I realized THAT, it was just too much. I had to admit that the Universe has a perverse sense of humor.
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I do remember a few of the meditations I had while I was at TMI. One of them featured Dr. H, my former oncologist, who handed me a yellow #2 pencil. It was engraved on the side with some kind of instructions. I think it may have actually had the word "metastasis" printed on it. After he had given this pencil to me, he said something about “When you get your metastasis….”
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I had an insight while I was at TMI, too. I’m not sure it’s an accurate one, but it’s worth considering. Remember me writing last time about the intuition I had, early on after my diagnosis, that there would be two healing crises for me, and if I survived both of them, I would live for a long time? Well, it occurred to me that perhaps the two healing crises were my brush with death with I was 5 years old and my brush with death during the last year. In each case, I decided not to “check out.” I decided to fight to live. And I did. So maybe I really have beaten this thing, after all?
How this squares with the meditation in which Dr. H. is telling me that I’m going to get a metastasis, I do not know. Because, as ASCO and Dr. H keep telling me, if I get a metastasis, I will eventually die from it.
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Before I got my cancer diagnosis, I assumed, based on my family history, that I had about 30 years of life left. That is no longer a safe assumption. What I understand now is that I have a potentially renewable “contract” for continued life.
I have a friend who reviews her marriage contract with her husband each year. They decide whether to continue that contract and, if so, whether it needs any adjustments.
I’m doing same thing with Death. Most people have not faced a situation in which they KNOW they will die if they don’t do something fast. Like all cancer patients and cancer survivors, I have met Death and negotiated a contract with him. A contract to be left alone. For now.
Trouble is, Death can choose to re-negotiate that contract at any time…not just on an annual basis. And there’s not one single thing I can do about it, if he chooses to do so. I will just have to deal with it.
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As I told you all last time, the Chancellor found in my favor when I grieved having been laid off. But then the other shoe dropped. I found out a couple of weeks ago that I’m not going back to TEACCH when I’m reinstated. I’m going to a new department on campus, The Medical Foundation. Needless to say, I was stunned and a bit alarmed. I hadn’t expected this development.
The Med Foundation is the fund-raising arm of the University that focuses its activities on the School of Medicine and UNC Hospitals. When I was at TEACCH, we had some interactions with The Med Foundation, and they were all positive. If I can’t go back to TEACCH, then I think TMF is a really great place for me to be.
However, I can’t work 40 hours a week yet. Not even close. Because of this, I couldn’t imagine them liking me, there. I’m going to go in with shared leave, and I’m going to be using a lot of it –– meaning that the department will be paying me for hours that they’re not getting any work out of me. Under circumstances like that, who could possibly like me? And really, when you stop to think about it, who EVER hires a new full-time employee who, from the starting gate, can’t give them 40 hours a week?
It looked to me like I was not going to be allowed to go back to TEACCH, but someone else had been more or less strong-armed into taking me on as an employee, instead.
As for me, I felt distinctly uncomfortable with the new situation. If I’m going to start a *new* job, I want to hit the ground running, doing my best work, working my hardest. And I just can’t do that right now. What kind of positive impression can I possibly make on these folks, under my current circumstances?
So I asked the Chancellor about this, expressing my strong reservations about this being a situation that just won’t work well for the employing department or for me. He assured me that the Dean of the School of Medicine and he and a couple of others had considered where to put me and had decided that TMF was the best place. He reassured me that the director of TMF knew about my health status.
On May 20th I met with four people from Human Resources, who told me about the terms and conditions of my reinstatement. Yes, they said. I am being reinstated with my shared leave intact and with back pay. Then the other shoes dropped.
They are counting my shared leave against the hours I would have worked between when I was laid off and today, so I don’t really have much shared leave left. I’m almost out. I’ll go back to work with just a little shared leave left, but not enough stamina to work 40 hours per week by the time it’s gone. What is going to happen to me?!!!
As for my back pay, they are deducting my severance pay from it, with the result that I was “overpaid” by the State. And the State wants its money back. Of course, I used my severance pay to pay bills, and I don’t have it to give back. So they propose to take it out of my pay for the rest of this year. Again, I was panicked at the thought of losing that much of my pay.
Odd, isn’t it, how the good news that I’m getting my job back can be such a mixed blessing?
The folks from HR tried to reassure me that TMF wanted me there –– that this was not just a position created for me because they were more or less forced to take me on. In fact, they said, TMF is taking on a new strategic planning project and they want me to help with that. They needed someone who could gather data, think it through and analyze it, etc. And I’m the one they want to take the lead in doing that.
But when I pressed them on whether the director of TMF and my future co-workers know that I’m just coming off of a serious illness and I’m not quite up to speed yet, they said not really. They know that I’ve been sick and that I have some shared leave hours left to use, but how much I’ll be able to work and how soon I’ll be working a full 40 hours had not been discussed because of HIPAA regulations.
Well, I broke down at that point. “We have to un-HIPAA-ize this thing immediately,” I choked out. “It’s not fair to them to be encouraged to hire someone in my condition without knowing up front about what they’re agreeing to take on. And for that matter, it’s not fair to me to walk into a situation where there are likely to be performance expectations that I can’t meet. It’s not fair to either one of us, and this MUST be discussed before I start work.”
I was promised that it would be discussed…but I ultimately decided to take matters into my own hands. The next day, I called my new supervisor and spoke with her.
Turns out she’s a cancer survivor, herself. Twenty years ago she had uterine cancer, and she told me not to worry about it. She’s been exactly where I’ve been and knows exactly how I’m feeling right about now. She was lucky enough to be employed, then, at a place where they worked with her until she was strong enough to go back to work full time, and she feels that she’s paying back that kindness in helping me, now, in my recovery and eventual return to full-time work.
“You understand that I just can’t manage 40 hours a week right now?” I asked, trying not to cry with relief at how understanding she was being and wind up sounding all unprofessional and everything.
“Yes,” she said.
“And you understand about shared leave? That I’m going to need more of it. And you’re OK with that?”
Turns out she is new to the University system and does NOT fully understand about shared leave –– how it’s an unfunded obligation for the employee’s department.
I can see my old department doing this for me. They know me and love me back there. But a new department? They don’t know and love me. How can they possibly be OK with paying me for hours that I can’t actually work for them –– first rattle out of the box after hiring me?!!! And taking on the obligation to pay me for more of them, by allowing me to get more shared leave?!
I explained how shared leave works, and my supervisor sounded a little taken aback. But in the end, she maintained her supportive stance. I was welcome at TMF. It was a great, supportive place to work. They would work with me as I recuperated. They have a project that they can’t wait to get me involved in. We agreed that I would come in on Monday the 24th to meet in person and begin to get oriented.
I hung up the phone and felt really reassured.
A few minutes later, the phone rang. It was the assistant to the director of the TMF. She identified herself and said that my supervisor had just asked her if she’d speak with me when I came in on the 24th, but she had asked if she could call me right away. My super said sure…so here she was.
She told me that she had been diagnosed with breast cancer just a few months before I was last summer. She told me how the office had supported her. The director of TMF went with her to the old cancer treatment building and again to tour the new cancer hospital when it opened. He and half the office staff went with her one day to get her chemo and had a little party. She assured me that people there understand, and that I am in a safe place to try to return to work.
I left there feeling very encouraged and hopeful. I like these people. It sounds like a really good situation.
But a few days later I discovered that no one has given much thought to how this position is going to be funded. Turns out it’s not being funded, so far, by TMF. I’m being paid as a line-item in the School of Medicine budget. My funding source *may* get switched to TMF in the future. Or who knows? It may not.
Somehow, I think this puts me in a very precarious position as regards the durability and longevity of the position. The SoM has no vested interest in trying to keep that line item intact as more budget cuts come down the pike. If they are looking for a place to make a cut, why not cut the salary expense of an employee whose work they don’t even benefit from, directly? Why not cut my line item?
I can’t help but fear that I’m being set up.
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My position at TEACCH was eliminated because there was no need for anyone to do my paltry job duties, according to the information provided by the CIDD in their layoff justification and in their response to my grievance. Grant-seeking and writing could be done by the clinical directors around the state –– I was not needed. (Never mind that the reason the position was created in the first place several years ago was because a professional fundraiser had said that those kinds of duties needed to be removed from the clinical directors’ shoulders.)
Another role I had was to do public communications for the department. For instance, my old supervisor there had me put out a newsletter and write promotional materials. Was that, also, an unnecessary function and thus reason enough to eliminate my position? Apparently not. TEACCH just put out another newsletter.
And guess what the newsletter said? TEACCH is going to be doing a large strategic planning project. The very kind of project that I’m being hired to help do at TMF. I have so much institutional knowledge about TEACCH and autism services, you’d think I’d be an asset at helping to do a project like that. Apparently no one else thought so….
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I’ve been working to help a NJ breast cancer surgeon, Dr. Kathleen Ruddy, promote the need for more research into the causes of breast cancer––not just the cure for it. I ran an editorial on her website (at http://breastcancerbydrruddy.com/, scrolling down to the title “Race for the Cure…or Pause for the Cause?”). I ran a version of the same thing as an op ed piece in the employee newsletter that I used to edit for the Employee Forum at UNC.
Best of all, I got a local big-newspaper reporter to have an interest in the subject, so there will be an article about me in the Raleigh News & Observer one day very soon. Keep googling the newspaper and doing a search to find out when it appears. I’ll also notify everyone by putting a link on my Facebook wall.
The question of what causes breast cancer is an important one to ask. More than 190,000 women in the U.S. alone are diagnosed with this each year. 40,000 of those of us who have put ourselves through the rigors of modern cancer treatment will nevertheless die of this disease.
Yet for decades, now, there has been evidence that some breast cancer may be caused by a virus. This virus is found in the tissue of about 40% of all women with breast cancer. And here’s the biggie (for me): This same virus is found in about 70% of all women diagnosed with *inflammatory* breast cancer––the deadly, aggressive, prone-to-recurrence sub-type that I have had.
Just think of how many lives we might be able to save….
If we could find out for sure whether there is a viral cause behind breast cancer, we could try to develop a vaccine for it. If we knew that some of us have this virus in our tissues, we could take an anti-viral (just like I’m now taking an anti-hormone pill) to try to control the virus so it doesn’t do any more damage in our bodies.
If you want to see a pretty neat summary of the state of the research question about the viral cause of breast cancer, go to http://vimeo.com/10943929. It’s only 18 minutes long. And very interesting to consider….
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I’ve also been trying to help my hematologist promote the current newsletter of the National Alliance for Thrombopenia and Thrombosis––the “stop the clot” group who works to increase public awareness about clotting disorders. Their newsletter this time features the link between having cancer and being at increased risk for a clotting disorder. I used this as one of my excuses for going to the cancer survivorship workshop at the beach––I took a bunch of the newsletters to distribute there.
Then I took the left-overs to a woman at the cancer hospital who is an assistant director of a cancer coalition around the State. She’s a perfect gatekeeper for us to be able to get our newsletter distributed more widely. Trouble is, we’re out of newsletters and don’t have the money to print more.
Money. Isn’t it always the limiting factor?
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Late-breaking news:
Ashley has died. She spent her last few days either struggling for breath or drugged into a peaceful sleep. My cancer mentor is gone.
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I think it’s almost inevitable that I am going to die of this cancer. I am not better than Ashley. I am not better than Nancy. Given the aggressive nature of the cancer I had, which is notorious for recurrence and metastasis, I think it’s inevitable that sooner or later this cancer will come back. I may have two years. I may have five years. I may have ten or fifteen years. But sooner or later, cancer will kill me. My friend Evelyn, who is a long-time breast cancer survivor, says that same thing about herself. I mentioned this idea today to Nancy (about me), and she agreed with me. She, too, thinks that given the aggressive nature of the cancer I have had, it is only a matter of time until it returns.
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I spoke with hospice at the cancer hospital where I get my care and also to an independent company. I wanted to find out how I am likely to die. My greatest fear is being like those fish on the pier at Kitty Hawk — slowly suffocating. Gasping for breath. Not being able to expand my rib cage, lower my diaphragm, and fill every corner of my lungs with sweet air. Not being able to take a deep, full breath.
But chances are, I will be just like Ashley and just like those fish at Kitty Hawk. The only difference is that hospice will have morphine and anti-anxiety medications to give me. The oxygen they give me won’t do squat to keep me from feeling short of breath. But they can give me morphine to slow my breathing so that my ability to breathe and my breathing rate are more in sync. And for the anxiety that being out of sync or being unable to fully breathe can cause? They can give me anti-anxiety medications for that.
They can also give me things for the pain. I’m not worried about the pain. I figure that the pain will be my signal that this ol’ body is not worth hanging around in any more, and it’s time to leave it.
But not being able to breathe?
Since I was small, I’ve had asthma. It went away for a long time, but in recent years has come back a bit. Except that since it’s not very severe (right now), they are calling it “reactive airways.” So I have some experience with not being able to breathe, and it’s not pleasant. I’ve learned that when it happens, it doesn’t do any good to get very anxious about it, because that only makes it worse. So I’ve learned to chill out and wait for the situation to resolve itself. And it usually does, within a day or less.
Except that that hasn’t been happening lately. The last shortness-of-breath episode I had hung on for three days. Was it really my old “reactive airways” problem? Or was it radiation pneumonitis? Or was it mets to my lungs already? Given the fact that it comes and goes, rather than coming and hanging around, I’d guess it’s my old reactive airways. But it’s behaving differently because with all the cancer treatment, I have a different body now.
That shortness of breath won’t resolve itself when I’m dying, like it does right now. The situation won’t resolve itself so that I can breathe fully and deeply once again until my last, dying breath. I’ll just keep getting more and more unable to breathe deeply. More and more, I will suffocate. Slowly. The hospice people will give me drugs to mask the symptoms, but will not really be able to help me breathe. To help me not suffocate.
And that is how I will die.
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Palliative treatment. That’s what the oncologists try to do for you when you have a recurrence with breast cancer. They don’t try to cure you. They just try to make the symptoms bearable. To make the cancer stable. Not make the cancer go away.
I’ve been reading the literature about metastatic breast cancer, trying to find information that might be useful for Nancy. Trying to do that part of the learning curve now, so that if it comes my turn and I get a recurrence, I won’t have yet another terrifyingly steep curve to master in a short period of time. So I know this is how they approach people with a recurrence. I’ve been reading what they say to one another, these doctors.
To me, palliative treatment is what hospice does for you. To make you as comfortable as possible until you die.
But until you call in hospice, your oncologist ought to fight like hell to help you defeat the cancer once again. Oncologists ought not to make palliative treatment the first thing –– the only thing –– they do for you when you get a recurrence. The first thing ought to be fighting like hell for another remission.
Just another way in which my values and desires do not match up with what happens as a matter of course in Cancer Land.
And no doubt this is another way that I will have to fight and fight again. If I ever get a recurrence, I will have to fight to get them to treat me as if they hope to cure me, rather than just hoping to prolong my life for a little while and make the cancer bearable.
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I have spoken twice so far to Dr. N, my surgeon. The whole thing started last December with my wanting to have some info from Patient Relations about what happened to the report I gave them about how Dr. N violated so many of our agreements during my surgery. Patient Relations just never responded, despite repeated contacts from me, asking about this. So eventually I got the Ethics Committee on board, they nudged Patient Relations, and the ball was set rolling. We met on Tuesday the 25th and on Friday the 28th.
I began our talk on Tuesday by telling her that this was not about litigation. This was about my trying to do survivorship things and realizing that what happened (or didn’t happen) surrounding my surgery has been a big impediment for me. It is festering, inside me, and I don’t want that to go on. I want to lay it to rest. For my peace of mind, I need to come to some kind of resolution of those issues.
I also said that I wanted her to know that there are a number of things she did that I felt were very caring, and I named 4-5 of them. I told her that they did not escape my notice and that I appreciated what she did. She seemed to appreciate that I was aware of these things and not seeing everything she did from a totally negative perspective.
But, I said, there are things that bother me, and I need to understand why they were done. At this point she jumped in and brought up, herself, almost every issue that I had told Patient Relations I wanted to discuss with her. It made me suspect that she had been thoroughly coached in what the subject matter was and how to respond to me. I know for a fact that “Risk Management” at the hospital was brought into the loop and was actively involved, behind the scenes, in what was going on.
The first issue she mentioned was cutting the pectoralis minor muscle to get to the nodes. She said that she had misunderstood what I was talking about when I asked her about this. She thought that I wondered if I was going to have a radical mastectomy, in which muscles on my chest wall would be taken, and she made this incredulous, dismissive face, relating to me what she had thought at the time I asked. “No,” she remembered telling me, which is true enough. But what she was also thinking, but not really saying, was this: “The tumor on the chest wall is mobile; it hasn’t grown into the chest wall. You don’t have to have a radical.”
I wasn’t asking about having a radical mastectomy, though. I was asking about having my pectoralis minor muscle cut.
To check out whether we really had miscommunicated, I later went home and listened to the recording of that pre-op consultation with her. Sure enough. I asked her about “cutting” muscles, and her response was framed in terms of “taking” muscles. We were talking right past one another, and neither one of us realized it at the time.
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She then said she wanted to talk about the resident cutting on me. She said that, frankly, she had forgotten what I had said about not wanting a student to cut on me, and she apologized for allowing it.
I teared up, because I had said that I wanted an apology. And here it was. So easily and quickly given. I suspected that she had been coached to say this, but she swore (or would have sworn, if she could, but since she was a Christian she could not) that she had *not* been told to say that. It was a sincere apology, given freely.
She then went on to say that on the day of my surgery she had told the resident that he could leave and send in an intern, instead, because she, Dr. N., would be “taking this case.” But the resident stayed.
I asked her how she could remember that I wanted only her to do the procedure (since she told the resident she would take this case) and yet allow him to cut on me, nevertheless (which was against what I asked her to do).
She put her hand out to touch my leg and said, “I know that to you that’s what you meant, but that wasn’t what I understood. I apologize for that. I should not have allowed him to cut on you. I’m sorry for that.”
So I read through each of the statements in the operative report, detailing what was done. She admitted that she drew the lines on my body to show where the initial incisions needed to be made, but she let the resident make that initial incision.
She claimed, though, that for *every* cut that was made after that, she had done the cutting. Every internal cut, she did. Then they both closed, starting from the middle of the incision and working out. And while he put in the drains, she scrubbed out and went to help the nurse mark the tissue specimens to be sent to pathology for examination.
I couldn’t quite make sense of it all. She remembered, but she also forgot? She remembered what I wanted well enough that she told the resident she was going to “take this case,” but she forgot to the extent that she allowed him to cut on me at all? How can both of these things be true?
As for the drains, I noted three things: First, putting in the drains required cutting on me, so the resident did more than just the initial incision that she claimed he did. Second, her saying that she wasn’t there while they were put in contradicted what was written in the surgical report, where it says that she put them in. Third, I had trouble with the drains after the operation because the incision was so large that the drains wouldn’t hold a vacuum so that they could suck out the fluid building up under my skin at the surgical sites. This fluid needs to be kept out, or I could have gotten a seroma –– an undesirable complication of surgery. It took some management of the drains to get them to do their job, after surgery. It was this kind of student ineptness that I had wanted to avoid when I told her that I didn’t want students working on me.
To try to figure out what went on, I decided to listen to the recording(s) of the conferences I had with the resident (and Dr. N and the anesthesiologist) on the day after my surgery. In that recording, the resident said he had cut on me because Dr. N was “setting tissue planes,” and she couldn’t do that and safely cut as well, so, he said, “I assisted Dr. N.”
It seemed to me that the information I was getting was not adding up. Her own words were that she had remembered but forgotten — both at the same time, on the same day. Confusing. The resident’s words on the day after surgery indicated that he had done a lot more cutting than just the initial incision that Dr. N said he did.
The contradictions were filling me with massive levels of increasing anxiety. Instead of a coherent narrative about what had happened, I was getting an increasingly jumbled one. All of the evidence didn’t fit.
So on Friday I asked her again about what had happened, explaining that the stories didn’t all match up to make a logical, coherent narrative. These discrepancies were making me increasingly anxious, rather than decreasing my anxiety levels.
She explained that during a surgery like this, you have to take an instrument and separate out the breast and node tissue from structures like veins, arteries, and nerves. You carefully run an instrument along the length of the artery or vein (or nerve) to separate out the tissue, then you have to hold the tissue up a bit so that it can be cut and removed safely without risking the structures that you want to preserve. You need more than two hands to do this.
The actual cutting of the tissue, once it has been lifted away from the veins/arteries/nerves, is small potatoes. It’s not the most skillful part of the surgery –– that particular act of cutting. It’s the preparation of the tissues so that they can be cut and removed –– that’s what takes the skill.
And yes, the resident had made the cuts after she had separated out the breast and lymphatic tissue from the surrounding structures that needed to be preserved and protected. (This, of course, contradicted what she had told me at the previous meeting –– that the resident had made none of the internal cuts in my body.)
I asked her what would have happened if the resident *had* left and sent in an intern when she told him he could do so. “Then the intern would have made those cuts.”
“And if there were no students in the OR at all?” I asked. “Then a surgical nurse would have made the cuts,” she said.
Dr. N., in effect, drew invisible lines, internally, by separating out tissues in certain ways and telling the resident to “cut here” along those invisible lines. (Invisible because they were not drawn on in ink, but defined by how she divided and held the tissues, and referenced –– no doubt –– by anatomical name. “Now cut the left lateral gizmadoodle two centimeters from the anterior flap” –– and the resident or intern or surgical nurse would know exactly where to cut.)
It did sound like a reasonable explanation of what is really involved in doing a surgery and how it might be that she “did” the surgery, yet did not always have the scalpel or cautery in her own hand. It might explain how she could feel, in all honesty, that she had honored my wishes for her and her alone to do this surgery, and yet (as it turns out) not honored them because she allowed someone who was not her to use sharp objects on my flesh.
I asked her what such a surgery would look like if the patient had not made the kind of request I did –– if it was just a normal mastectomy. She said that it was her chief resident there with her, and with his level of skill he very well could have drawn the lines for the surgical field and he very well could have been separating the breast tissue and lymphatic tissue from the veins/arteries/nerves, and *she* would have been assisting *him* by doing the cutting of the tissue planes that he had defined. Although, of course, as the attending physician she would have been evaluating his judgment and actions and correcting him (or taking over total control), if need be. Because her name went on the final line of the surgical report.
It began to sound as if, once again, there had been a fundamental failure to communicate. When I talked to her about this in our pre-op consultations, I was very, very, excruciatingly clear about not wanting any sharp instrument to be used on my body unless she used it. She indicated that she understood what I wanted and would comply.
But in her own mind, “doing” the surgery was not just about personally holding any cutting instrument that was used. It was about other things that needed to be done, and holding a cutting instrument was not necessarily the most important thing at all moments.
Although she promised me very clearly that only she would cut on me, she didn’t understand the term “cut” in the same way I did. To her, “cutting” in the context of a surgery is a whole set of actions, not just the holding of a scalpel or cautery. She didn’t really realize (God knows why! I was certainly explicit enough!) that to me “cutting” is exactly that – wielding something sharp against my skin –– and nothing more. She didn’t realize that I meant quite literally what I said.
But the “nothing more” that I didn’t understand or account for, in my mental image of what would happen during surgery –– that turns out to be crucial.
So in the end, she wound up promising something to me that she could not deliver in its literal letter. As she said to me on Tuesday and again on Friday, she understood now that to me, who held the scalpel or cautery WAS the most important factor, and she was sorry that she had not complied with what I had wanted.
What seems possible to me, however, is that by not getting what I literally wanted, I may have gotten what I really wanted. She appears to have worked hard to comply with the spirit of what I asked of her, if not the letter. To-wit:
At no point did she leave the operating room and let the resident do the surgery (except for putting in the drains afterward, which, I note again, was not a good job). She either held the scalpel or the cautery in her own hand and made the various cuts on my body, or else she set the tissue planes (a more sophisticated skill) so that others could make the necessary cuts (a lesser skill). She was intimately involved in what happened to me –– not just supervising from a distance.
Just about the time that my anxiety starts to lessen and my heart rate goes down, because it seems that I understand now why things happened the way they did…another thought occurs to me:
This holding of the tissues and stuff –– that’s **exactly** what she told me that she needed her *assistants* to do, so that she could cut. Back when we talked on November 4th, when I told her that I wanted her and only her to do the surgery, her and only her to wield sharp instruments against my body, she protested. She said she needed help. I asked her what kind of help. She said she needed people to hold back skin flaps, hold my arm up for the axillary dissection, pull tissues away….
Isn’t this just exactly the stuff that has been presented to me, now, as the “most skillful” part of the surgery that it’s best that she did, herself, leaving others to do the cutting?
I remain confused and anxious. I’m not quite sure where to find trust in all this. How to keep this from adding fuel to the fire of the trauma I’ve been stuffing for 50 years.
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Our final topic of conversation was the issue of why she decided that I had to have all three levels of underarm (axillary) nodes removed. In order to get increased clarity on this issue, I had re-read the path report, myself, and tried to understand it. There were some terms I wasn’t quite sure about, and I didn’t find them well-defined on the Internet, so I decided to call Pathology and talk to a doctor there for an interpretation of the terms.
The reaction was most interesting. The attending physician who had done the work on my specimen no longer works at my hospital, and there was lots of foot-dragging in hooking me up with another physician, while the hospital’s “Risk Management” team was notified and got involved.
The secretary of the department promised me that I would be able to talk to someone by the end of the day (so I would be prepared to talk to Dr. N in an informed way at our meeting the day after that), but when the end of the day approached and nothing had happened, I called her back. She said she hadn’t heard back from Risk Management yet. So I waited about half an hour longer and called back again –– apparently a couple of minutes past quitting time, as I was transferred to voice mail rather than getting a person.
The voice mail gave me the number of the pathology resident on call, so I called her. She wasn’t able to talk to me, but she gave me the number of an attending pathologist who she thought might be able to answer my questions. I called her right away (hoping she hadn’t gone home yet), and we talked for some time about what these terms meant in the path report. In the end, she suggested that I talk to the resident who had done most of the actual gross pathology work on my tissue sample. She still works at the hospital. I decided that I might try to do that the next day.
The next day, Tuesday, about an hour and a half before I was going to meet with Dr. N for the first time, I got a call from the secretary at Pathology, wanting to know if all of my questions had been answered the night before by the attending pathologist. (Word gets around!). I said that I thought so, but I could use an opportunity to talk one more time to someone, and I was wondering if the resident who actually handled my specimen could speak with me.
The secretary said she couldn’t, because she was, at that moment, talking to Risk Management! (Curious, no?) I asked if the resident could please call me as soon as she was finished talking to Risk Management, and within 15 minutes, she did. I went over what I thought I understood from talking to the attending the night before, and I got what I thought was some further clarity. With all of this homework behind me, I thought I was in good shape to talk to Dr. N about her judgment in taking Level 3 nodes.
I explained to her that the pathology report indicates that I only had four nodes that showed signs of having had cancer in them, and it appeared that those nodes were in the first level –– not anywhere near the third level. So why did she take the Level 3 nodes and increase my lymphedema risk?
She knew that I was pathologically fearful of getting lymphedema and violently opposed to taking on even the *risk* of getting lymphedema. I had considered not even allowing her to take any nodes, period, but decided that this was unwise if I wanted to get all of the cancer out. She promised me that she would only take Level 3 nodes if she felt the Level 2 nodes and they seemed off to her. Enlarged. Grainy. Not right. When I woke up (!) from the surgery and found out that she had taken them all, I was a bit depressed for a week, as I contemplated what that meant about how far the cancer had spread.
Imagine my surprise to learn, a few days later, that in fact there was only one micro-met (two cells) of cancer in *one* node, evidence of there having been cancer in only four nodes, and no evidence of cancer in any other nodes. I had expected a closer correspondence between her judgment at the time of the surgery and the pathology report. So I asked her about this.
I asked her if the path report saying there were multiple nodes with fibrotic changes and necrotizing granulomas meant that there were a bunch of nodes throughout my axillary area that felt funny. She said yes. And I asked her if that is why she decided that Level 3 nodes had to be taken, and she said yes again.
She explained that when you talk about Level 1 and Level 2, and so on, you are talking about an anatomical position in the body –– not about a schematic for how the lymph fluid flows through the axillary system. The key node that is the “gatekeeper” for lymphatic flow from the breast into the axilla could lie not in Level 1, but in Level 2. And the lymph fluid might flow from there into both other Level 2 nodes and Level 1 nodes. So no, lymph fluid does not flow from Level 1 and then into Level 2. It can vary.
This means that you can be fairly clear in Level 1 nodes but have gross abnormalities in Level 2 nodes that have to be checked out under a microscope. And when that happens, you have to take Level 3 nodes, to check them out, too, so that you know whether the cancer has spread outside of the local area of the breast…and to help you feel more assured that you have gotten it all (locally) by removing the breast and nodes.
I told her, then, that I felt I owed her an apology because I’d been walking around for months questioning her judgment and feeling angry and betrayed, because I thought that the path report didn’t support her decision to take Level 3 nodes. But if that was what that section of the path report meant, then I was wrong. It did support her decision.
Dr. N then explained the pathology report in more detail, focusing on other parts of the report. Or she tried to. And that’s when the trouble started all over again.
She said that the resident physician (not attending physician) in pathology who did the gross physical examination of the tissue specimen from surgery was wrong in assigning presumed levels to the nodes she was examining. The pathology report says that the enlarged, grainy nodes were closer to the breast and thus presumably Level 1 nodes (because Level 1 is closer to the breast), while the smaller nodes were further from the breast and thus presumably Level 2 nodes (Level 2 being further away). There is no question about the Level 3 nodes, because Dr. N marked those at the time of surgery. (They are the furthest of all from the breast.)
Dr. N said that because she had not marked the Level 1 and Level 2 nodes at the time of surgery, there was no way the resident pathologist could know which nodes were from which level. She pointed out the word “presumed” in the report. She said that the pathologist’s presumptions were wrong. She (Dr. N) had palpated enlarged nodes at Level 2 during surgery, and because of that she decided that Level 3 needed to come out.
I said, “Yes, but I needed to see that in the pathology report. I needed to see your judgment corroborated there. Where is it reflected there?”
She said, “Right here, where it talks about the fibrotic changes.”
“Yes,” I agreed. “But the path report also says that these grossly positive lymph nodes were closer to the breast, and over here in this other place you just pointed out, it says that the nodes showing the most suspicious changes were closer to the breast and thus presumably Level 1 nodes…not Level 2 nodes, as you claim.”
Dr. N said that the pathologist was wrong, because there was no way to know which way was which on the tissue sample. The pathologist could identify nodes, but could not identify what levels they came from because they weren’t marked and she couldn’t see how they had lain in my body, which is what determines where the levels are. Thus her use of the term “presumed” in the path report.
“But,” I said. “According to the path report, the pathologist could identify the axillary tail on the breast. If she could do that and knew that the breast was a right breast (which she did), then she should have been able to lay out the breast and nodes on the table and determine which were closer to the breast and which were further away. And knowing that, and knowing that Level 1 is closer and Level 2 is further, she would know with some certainty which had come from which level.”
I left the discussion that day considerably confused. I wanted to believe that Dr. N’s judgment in taking Level 3 nodes was justified by the path report, but I was again having trouble seeing it in there.
So I went home and decided to look at the results of the imaging that was done on me. Sure enough, on my CT scan taken on July 14th, right after my diagnosis, it says there was an enlarged node under the pectoral muscle. Well, according to what Dr. N wrote to me, under the pectoral muscle is Level 2.
So then I decided to ask Dr. Z, the radiologist, to look at my pre-treatment images and tell me if they indicated that there was involvement of Level 2 nodes. She eventually wrote back to say that she had looked at my case again and yes, there was involvement of both Level 1 and Level 2 nodes, pre-surgery, according to my MRI.
So that was two external pieces of evidence that there was Level 2 involvement.
Meanwhile, Dr. N was contacting the head of Pathology to ask him about my case. She reported that he said the resident pathologist was incorrect to attempt to identify the levels of the nodes, because given how the specimen came to the pathology lab, there was no real way to tell. The only real way to tell, if the nodes were not marked by the surgeon, is to see how they lay in the body. Which of course they cannot do in the path lab. He said that in the future he will instruct his staff not to speculate as to the level of the nodes if they are not marked.
He ultimately also reviewed my case and specified which samples had what kind of effects: exactly which ones had the chemo effect (fibrosis), which ones had the necrotizing granulomas, and which one had the tiny micro-met. If I insisted on trusting what the pathology report said about presumed levels of the nodes, Dr. N said, I should note that one of the nodes that had a chemo effect (indicating it had had cancer in it) was in the “presumed level 2” area.
When we met on Friday, I granted that several lines of independent evidence tend to support the idea that her judgment in taking Level 3 nodes was not in error. That there were reasonable grounds for doing that.
However, I said, I still don’t understand how the pathology report could be so wrong. Thinking that it is just does not inspire confidence!
She tried once again to show me, using a picture I had brought, how the nodes are in the body and why that orientation gets lost when the breast and node tissue is removed from the body. You need to see how it all lies in relationship to the muscle, she said. And if you can’t see that, you don’t know what level the nodes were occupying.
I think maybe the light is dawning. But I’m not sure.
She’s promised we can talk again when she gets back from vacation, if I still am confused.
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Funny thing, these residents. It was a resident who put in my drains that wouldn’t hold a good suction and had to be manipulated to get them to work right. It was a resident who did the gross examination of my tissue specimen and got some things wrong on the pathology report –– things that have made me angry, then anxious and confused.
I think that my instinct to avoid residents is not a bad instinct.
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At the end of our first talk, on Tuesday, I told Dr. N why it was that this information was so important to me. I told her about my hospitalization at the age of 5 and how the trauma from that is emerging like gangbusters. It was bad during treatment, but it’s getting worse now that treatment is over.
I told her how afraid I am of her and every one of my doctors, and how I don’t trust them. How I want to. But I just can’t find it within myself to do so. And how difficult that is for me, and I know it’s difficult for them. And how the uncertainties and failures surrounding my surgery seem to be adding fuel to the trauma fire.
I said that if I have to have another surgery in a few years, I don’t want to be battling the anxiety caused by whatever situation that will be, plus the ancient traumas I’m trying to deal with now, plus the anxieties caused by my mastectomy in December of 2009. I want to at least lay THIS mastectomy trauma to rest.
She listened respectfully to me. She didn’t dismiss or diminish my anguish. She said that it was horrible for a child to have been treated that way, and we would never do such a thing nowadays.
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I am having a lot of trouble with the trauma from what just happened to me, in cancer treatment, added to the post-traumatic stress of what happened to me when I was 5 years old. I’m having a great deal of trouble.
As time has gone on, from my diagnosis, I have slowly come to appreciate more and more how huge a role my early hospitalization has played in everything that I have felt, endured, rejected and hoped for, with this bout with cancer. This is the post-traumatic stress story as I currently understand it:
When I was 5 years old, I began getting sick every morning. I'd get sick, throw up, and by about noon I'd be fine, and I'd go about and play. My father said that if I'd been 15 instead of 5, he'd have sworn that I was pregnant. Morning sickness.
This went on for week and weeks. Finally my mom took me to the doctor. He had me give him a urine sample, and my mom says that when I came out of the bathroom with the cup (she probably helped me and had the cup, herself), the doctor took one look at the black liquid in it and said, "Go to the hospital now. Do not go home and pack. Go straight to the hospital. I'll call ahead and tell them you're coming."
Before I knew it, I was getting some kind of shot in my arm, and then I was in the hospital. I don't remember much after that. Not consciously. Here's what I do remember:
(1) Alone. Always alone. Nobody spent much time with me.
(2) Tormented. They stuck needles in me all the time and hurt me, over and over and over and over again. It never stopped. They wouldn't let me go home with my mommy and daddy. I'd never been away from them before. And now I was in this strange place where they were hurting me all the time, every day, over and over, and I couldn't get away from my tormentors and go home and be with mommy and daddy. I was trapped. Helpless. Powerless. Tortured.
(3) One time a woman dressed funny came into the room and stood between my bed and the window. We watched Truth or Consequences on TV. (Black and white TV.) When I would laugh, the IV needle in my arm would jiggle and hurt, so the funny-dressed woman and I made this conspiracy NOT to laugh at funny things. But of course we would, and the needle would jiggle, and then I'd say ouch. And then we'd laugh a little bit at that and she'd tell me, kindly and with a smile, that we couldn't laugh any more!
(4) One night my room was dark, but there was a small light on and some people were standing in the corner of the room, up to the right of my head. They were huddled and talking. Next thing I knew, I was being wheeled on a stretcher down this very bright corridor and I was taken into a small room. There, they turned me so that my left side was down, and they physically held me down. My little 5-year-old body, and there were these big grown-ups all up and down me, physically restraining me. And as they restrained me, someone else poked something in my side and asked me, over and over and over again, "Does this hurt? Does this hurt? Does this hurt?" It seemed as if they weren't going to be happy until they had hurt me even more than they usually did.
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That's what I remember. Those are the conscious memories. There are oceans of feeling memories that have no visual or cognitive content. Just trauma. Terror. Anger. Loathing. Fear. Trauma. Mistrust. Tons and tons of mistrust, because these people are my tormentors. And when something brings this to the surface (and it doesn't take much, nowadays), I sob like a baby. I feel desolate. Alone. Very, very vulnerable. Unprotected. Like I have to try to protect myself, because there is no one who will protect me.
I am so, so desolate with these memories, and I don't know how to drain them. I don't know how to move on.
I just cry and cry and cry over what happened then, and I am so utterly terrified of the things that have had to happen to me now...or may have to happen in the future. I don't know how to express how terrified I have been. Still am. And just disconsolate. I don't know how to drain this reservoir of grief. It seems sometimes like it will never be drained and I am doomed to live my life like this.
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Here's what 56-year-old Brenda can tell you:
Somehow, no one knows how, I contracted "infectious" hepatitis. By the time my parents took me to the doctor to see why I was getting so sick, I was on death's door. The doctor didn't tell my parents this until much later, but at the time he put me in the hospital, he didn't think I'd emerge alive.
I was put into isolation. I was there for six weeks. My dad was working two jobs. He couldn't sit with me. My mom had an 8-month-old baby at home. She couldn't sit with me. So although they visited, they didn't stay with me. I was alone almost all the time.
Because I was so highly contagious, the nursing staff were afraid of me. They wouldn't answer my call light all the time, when I needed help. Sometimes I couldn't eat my meals because there was no silverware on the tray, and the nurses wouldn't answer the call light so I could tell them I needed silverware.
The only time people came into my room was to hurt me, for the most part. To stick me with needles. To hurt me. And then they'd leave again.
But they never let me leave. I couldn't go home. I was abandoned, there in that hospital. Abandoned among people who just wanted to hurt me, and didn't want much else to do with me.
When my parents found out how much I was being neglected, they complained to the Mother Superior of the hospital. She, herself, then came to see me. That was the woman in the funny dress.
At one point my kidneys shut down. I had to have some kind of procedure because my abdomen was filling up with fluid and I was going to drown in my own body fluids overnight if they weren't drained off. That's when the doctors (my tormentors) took me into the brightly lit room, held me down, and asked me if it hurt.
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The good news is, they saved the patient. Against all odds, they saved the patient. The bad news is, there was tremendous collateral damage.
I have managed that damage all these years by, luckily, remaining pretty healthy. Any health issues I had to deal with only had a small learning curve and I was able to manage my interactions with the medical world pretty neatly.
My innate distrust of the medical world was bolstered by adopting a worldview that is anti-big-business, anti-big-pharma, pro-nutrition, pro-vitamins/herbs, etc. It helped me feel confident that I could manage most health problems that arose. It helped me feel NOT vulnerable. It helped me feel reasonably in control -- at least, reasonably in control of what would happen to me in any given situation.
And in fact, I was in very good control. I took myself from being on the verge of Type II diabetes, to being nowhere near the verge...all by using nutritional supplements. I took my dog, who had hemangiosarcoma and was given a year max to live, and gave him four really good years before I had to put him down. I did it by giving him a certain set of vitamins/herbs every day.
But when I got this cancer, the learning curve was hugely steep. More than I could easily manage in a short amount of time. There was no time to learn and understand enough. Events were moving too quickly. But I knew that not only could I not rely strictly on my traditional ways of dealing with medical issues, I was going to have to engage with the medical community in a much more intimate way than I had for 50 years. And I was going to have to let them do things to me that are absolutely and violently against what I believe in, in terms of how one ideally handles health problems.
I had to let the tormentors back into my life. I had to listen to them say things to me (in cheery, unconcerned voices) that were so very, very wrong, to me, and I was not supposed to get upset by what I was hearing. It didn't work. I got very upset. Over and over again. Because what they were suggesting was violating precepts that I have held almost sacred for a long, long time. In the end, in many regards, most of the time, I had to give in. I had to violate what I have believed in, my worldview.
So I lost on two fronts all at the same time. I had to have intimate dealings with the people who used to hurt me, and I had to violate my values in order to let them do what they needed to do. I've saved my life, but lost my soul.
While I was in active treatment, I could keep the post-traumatic stress a bit under control, because there was the emergency of needing to GET treatment. Decisions had to be made; things had to be accomplished. But now that I'm past active treatment, the post-traumatic stress is mushrooming almost out of control. It emerges around every corner, at unexpected moments. It interferes with a lot. It certainly interferes with my ability to move forward as a cancer survivor. I'm doing my best to deal with it...but it's taking a lot of time and effort. Monumental amounts of time and effort. One way I'm trying to deal with it is to revise my picture of what just happened to me. That takes education and explanation from those who were there. And it takes time.
And you know the funny thing? Because this kind of pain and trauma is different than what people associate with fighting cancer, there isn't as much support for what I'm trying to do. People seem to think that the emergency is over, so it's time to pick up and keep on truckin'. They slowly turn away.
But for me, the emergency is not yet over. It's just shifted focus.
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One final thought: So maybe I won’t get consistent answers to all of these questions I have about what went on surrounding my surgery, and why. And all of the inconsistent answers I get will not fit together to form a unitary narrative of what happened, complete with logical, understandable rationales for actions, so that I have rational, reasonable, iron-clad cause to ramp down the anxiety and fear that is feeding that old trauma.
Still, (a) the engagement of Dr. N with me on this subject is, in itself, an act of good faith. She could have refused to talk to me the first time, or she could have been brusque and off-putting. She has done none of those things with the issues I have raised. (b) Nor did she belittle or pooh-pooh my story of my childhood trauma in the hospital. (c) She has agreed to talk to me a second time. (d) And she has agreed to talk to me a third time after she gets back from her vacation next week, if I am still confused and need to talk. (e) She has also called in another medical expert (from pathology) to try to clarify the information in the pathology report for me.
Even if the story I can weave about what happened surrounding my surgery is not completely coherent due to different narratives not fitting together…the process of discovery and reconstruction that we have just been going through MUST count as a piece of evidence about the good will and trustworthiness of my medical care team.
Are they perfect people who don’t make mistakes? No. Mistakes were made.
Have they tried to honor my requests –– at least in spirit if not always succeeding in the literal letter? Possibly; I think so. The jury is not fully in on that one yet. I still have some doubts and anxieties about what they intend to do, what they will do, no matter what I want.
Are they willing to work with me to try to bring me peace of mind? Yes.
All of this has to count for something on the “trust” side of the ledger. Doesn’t it?
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I’m participating in a program called Get Real & Heel –– a program for breast cancer survivors who have recently finished treatment. Part of the program is to learn to do biofeedback, to calm yourself and produce nice, even patterns in your nervous system. It usually takes new participants a couple of weeks to learn how to get high marks on this biofeedback thing…but I aced it the first time out. (I used the techniques I learned from The Monroe Institute for achieving different states of consciousness.) The trainer was a bit puzzled, not knowing what to do for the next several visits, since I already can do what she was going to teach me to do. This is all part of a research study. I think I must’ve blown their data curve. Damn outliers!
It is very ironic, then, that two days later my therapist strongly urged me to take just a short, short, short course of an anti-anxiety medication, because the PTSD is causing me so much distress right now.
I tried it. Even cutting my dosage way, way down, it makes me so sleepy I can hardly function. The first day on it, I drove under the influence of this stuff and caught myself almost driving off the road a couple of times. I was a danger to myself and others. So I just can’t take it. It’s gotta be cognitive therapy for me. No drugs.
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One more final thought: Suppose I’m right. Suppose I am going to get a recurrence. Suppose I am going to die of this cancer in two or three or five or seven years. What kind of person do I want to be, between now and then? What kind of life do I want to live? Is this anxious and fearful and untrusting and traumatized person the person I want to be? It’s not.
I have to drain this reservoir of trauma. I don’t know how I’m going to do it, but I have to figure it out. Because it is so much me…and yet so not-me.
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