10-18-09 Update – On Trust

With a shout-out to my cousin Charlotte and my cousin-in-law Cindy, both of whom have been diagnosed with cancer.

I understand that in some native tribes children were taught to swim by taking them to the local watering hole and throwing them in. It was a real sink-or-swim situation…and presumably all of these little aquanauts did in fact quickly learn how to stay afloat.

I feel that this is what Life has done to me. It threw me into the deep end, and I’ve been thrashing about madly ever since, struggling to keep my head above water and not drown. At this point in time, I think I’ve begun to learn how to do a nice doggie paddle. It may not be the most sophisticated way of staying afloat, but it’s more effective than thrashing.

Next step: learn to do the breast stroke. :)

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I have only two more chemo infusions to go. As far as we can tell, I’ve had a good clinical response to chemo. The redness in the breast is less intense and may possibly not reach as far up the breast. Possibly. The node that was palpable (feel-able) in my axilla (armpit) is no longer palpable, and the small tumor that was floating on my chest wall is also no longer palpable.

These are very good signs. But they are not good enough. At least, not in my opinion.

“Response” to treatment is measured in terms of clinical response and pathological response. Clinical response is what you can determine about the cancer just by looking at the signs and symptoms it presents—like redness of the breast or thickening of the skin on the breast or presence of swollen nodes. You can see these signs just with your eyes (like the redness) or your hands (swollen nodes) or with the use of imaging techniques like MRI, PET scans, CT scans, etc. (for skin thickening and nodes).

Pathological response is what you can determine about the cancer when you look at the affected tissues under the microscope. After I have my mastectomy and my nodes are removed, a pathologist will use a microscope to look carefully at “slices” of the removed breast tissue and also at all of the nodes that are removed. Each and every one of them. They will look for signs at the cellular level to see how much cancer is there. If they can’t find abnormal cells anywhere, I will be said to have had a “complete pathological response.”

This is highly desirable. People who have a complete pathological response to treatment tend to have fewer recurrences of the cancer and tend to live cancer-free for a much longer time after treatment is finished. Because IBC is notorious for being an aggressive cancer, recurring both locally (where it originally was in the breast area) and metasticizing readily to other parts of the body, it is especially desirable to have a complete pathological response to the chemo. That’s the goal.

So it would seem logical, once chemo is finished but before you go to surgery, to find out in as much detail as possible how you’ve done with your chemo. This would require more than just visual examination of the breast. And indeed, according to http://www.blogger.com/www.breastcancer.org, for IBC patients an MRI can be done (is often done) after chemo, before surgery, to determine how well the chemo has reduced the “tumor burden” and whether there needs to be more chemo (or radiation therapy) before surgery to achieve a better response.

My oncologist is not planning any imaging after I’ve finished chemo. He is very happy with how good my clinical response has been (as are all of the doctors I’ve consulted—radiation oncologist and surgeons). But he’s not planning any other imaging.

Ever.

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Over the course of the last few weeks I’ve had numerous chances to talk to my oncologist about what the future holds for me in terms of actions we will take, things I need to do, etc. Here is what I’ve found out:

There was a flurry of testing done at the time I was diagnosed. Among the tests was blood work that measured a tumor marker—some component in the blood that, when elevated, indicates there are cancer cells circulating throughout the body. The other tests were imaging tests: an MRI, PET scan, CT scan, and bone scan (to see if the breast cancer had metasticized to bones).

The only tests I’ve had since then are the blood tests every week before I have chemo. These tests do not include the tumor marker test. They are only to make sure that I have enough platelets and white blood cells for it to be safe for me to have chemo again.

I am not scheduled to have any imaging after chemo, before surgery, to see more precisely how well the chemo has done its work and whether or not we need to do more, before surgery, so as to give me the best pathological report possible.

I am not scheduled to have any imaging after chemo, surgery and radiation therapy (active treatment) are finished, to see whether I am then cancer free. My oncologist has assured me that he thinks we can “cure” this cancer—and he does use the word “cure”—but I don’t know how we will ever be able to make that determination if we don’t do any scans after treatment is complete.

After treatment is complete, we enter the surveillance period—a five-year period when I will get regular check-ups to monitor how well I’m doing. To make sure that there are no recurrences of the cancer. For the first year, the check-ups will come every three months. For the second and third year they come every six months. After that they come yearly.

At no time during this period will the check-ups include any blood work or any scans to try to catch a recurrence early—before it can produce symptoms. Check-ups will consist only of a visual examination of my mastectomy scar and a manual examination of my remaining breast. We will only do imaging if this surface-level examination shows problems, or if I come in with symptoms that the cancer may have returned.

Given all of the testing that went on when I was first diagnosed, I’m finding this dearth of planned testing at logical intervals during the treatment process and the surveillance period more than a little odd.

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The rationale for this laisez-faire, que será, será approach to testing during the surveillance period (the Doris Day philosophy of cancer treatment!) is that testing to find possible recurrence or metastasis doesn’t change the outcome. Testing might reveal a recurrence a couple of months earlier than if we’d just waited for me to experience symptoms and then be tested, but knowing earlier won’t give us any advantage in treating the recurrence. If we treat it successfully, it would have been successful no matter when we’d gotten started on treatment. If we don’t treat it successfully, it wouldn’t have been successful no matter when we’d gotten started on treatment. The outcome will be the same, no matter when we find out about the recurrence and begin treating it.

That’s what they say.

I find this quite a curious—and unsettling—position for my oncologist to take. But he is not alone. This is the surveillance protocol that is recommended by his professional organization—the American Society of Clinical Oncologists (ASCO).

However, I note that the protocol is for “breast cancer” patients in general. It does not seem to distinguish between breast cancer patients with slower-growing original cancers and breast cancer patients who presented with more aggressive cancers like IBC. It gives a one-size-fits-all approach to surveillance. My oncologist thinks it is a very good approach. I don’t.

Three times I questioned the “do nothing” surveillance plan he intends for me. Three times he defended his choice. It simply didn’t occur to him to ask me why I kept questioning the plan and what I thought I’d like to see, instead. (Ah, the elusive goal of improved communications!)

Finally I quit waiting for him to ask me what I wanted—that clearly was not going to happen. I told him that I want to open a dialog about what kind of imaging we will do during surveillance because I’m not comfortable with the Doris Day approach. To his credit, he agreed to this.

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I must admit, the medical establishment—or my medical establishment, anyway—is giving me very mixed signals about “early detection.”

There is a whole public awareness campaign about breast cancer that urges women to have regular mammograms because early detection can save lives. One of my oncology nurses used this argument with me just last week when she tried to convince me to have a mammogram of my healthy breast before I go to surgery.

As part of the flurry of testing when I was diagnosed, I had an MRI, CT scan and PET scan of the healthy breast and all of these imaging techniques showed no problems there. But, said my nurse, those techniques cannot pick up small calcifications that could be indicative of early-stage, regular breast cancer. Early detection is key to successful treatment, she said, and if there were any indications that I had such a cancer growing quietly in my non-IBC breast, we could deal with that situation while I am on the table getting my mastectomy. Which is a pretty logical and compelling “early detection” argument.

If early detection is important in regular breast cancer, when it comes to IBC early detection most definitely makes a difference. Because IBC doesn’t show itself until it is, by definition, a late-stage cancer, the earlier you can recognize the signs and symptoms for what they are and then *do* something about it, the better your chances of survival. The cancer may not have had time yet to spread to other parts of your body, which gives you a better chance of eradicating the cancer. That’s the lucky situation that I have found myself in—we found this relatively “early,” as late-stage cancers go. It’s why my oncologist says we can cure it.

But although early detection is key to improved outcomes at the time of original diagnosis, for some reason it ceases to be important when it comes to detecting and treating recurrences. At least, according to ASCO that’s the case. While I can see where that might be true for slower growing tumors that come back, I cannot believe it is true for aggressive, late-stage cancers like IBC.

I want to know as early as possible if this cancer tries to come back, and if it does try to come back, I want to hit it again with the biggest guns we have.

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As I said, I’ve had numerous occasions to talk to my oncologist, over the last twelve weeks, and in those conversations I’ve gotten impressions about things that make me wonder. One of those impressions is that my oncologist is extremely skilled at knowing what standard-of-care protocols (“the box”) say about how to treat certain conditions, and he is quite adept at applying the treatment formula contained in those protocols to his patients. He is a kind, caring person, and he genuinely believes that he is providing the best treatment that there is, when he does so.

I value those who clearly understand what “the box” says about something. I also value those who are able and willing to step outside the box when necessary—those who see the box as the place you may start from, but not necessarily the place where you need to remain at all times.

Over the course of the weeks getting to know my oncologist, I have gotten the distinct impression that he’s a real box kinda guy. And this made me wonder what he’d do if I got a recurrence. Would he be aggressive and try hard to bring it all under control again? Or would he take a more hands-off approach to treatment, just as he has a hands-off approach to imaging during this current treatment and throughout the surveillance period to come?

So I asked him. Four weeks ago I asked him what he would do if I had a recurrence of this cancer. Since it is aggressive and known for its high recurrence rate, it’s a possibility I have to consider. It might happen to me. And if it does, I asked, would he treat me with curative intent, or would he treat me palliatively—just to keep me comfortable until I die?

He looked at the floor and said, “If the cancer comes back, it is stage IV. There is no cure for stage IV cancer.”

I spent the next two weeks in a deepening depression. He will give me up for dead, I thought. That’s what he was saying. There’s nothing he’ll be able to do for me. He’ll treat me minimally—just to keep me comfortable until I die.

And I began to question whether he is a fighter, at heart. I want a fighter on my side, not someone who is so que será, será about early detection after the original diagnostic period and so que será, será about treating me if I have a recurrence.

I prepared myself to have to ask for another oncologist. It was difficult for me, and very emotionally draining. But how could I go on, I wondered, knowing that his philosophy of cancer treatment and mine were so fundamentally different? To stay under his care, I began to think, may jeopardize my life, because he simply is not aggressive enough. He is unwilling to think outside the box.

Before I made so bold as to ask for a different oncologist, I decided to ask him the same question, but in a different way. When I met with him at my last infusion, two weeks ago, I asked him this: If I have a recurrence after I have completed treatment, will you treat me aggressively to bring the cancer under control and, if possible, to bring it into remission again? Or will you treat me just to make me comfortable until I die?

He assured me strongly that of course we would treat aggressively. Of course.

I was relieved to the point of tears. And I felt like a bad little girl for having thought that he would just leave me for dead. I did not ask to have a different oncologist take over my case.

But I find that I am still uncertain about how my treatment is being handled. Without imaging after I finish chemo, how will we know if chemo has done enough to give me the best possible chance at having a complete pathological response? If I insist on imaging after chemo (which I am thinking of doing), what will his response be to the results? If the results are OK but not as good as we had thought based on his clinical exams of me every two weeks, will he be willing to consider delaying surgery and doing more chemo in order to try to get a better result? Given his approach to treatment so far, I’m guessing he wouldn’t. So what do I do, then?

I can evaluate his approach to imaging and say that I want something different, and I can specify what it is, exactly, that I want. I have learned to dog paddle in the deep end well enough, at this point in time, to do that.

But I can never hope to dog paddle well enough to understand how to do chemotherapy—what drugs to use, how much, for how long, and when. I can never hope to attain that level of competence. I have to rely on my oncologist for that.

If he and I have a fundamentally different approach to imaging, is it safe to say that we probably would have a fundamentally different approach to chemotherapy treatment and how it’s done, if I were educated enough to understand it? That if I had that level of education, I’d be able to (and want to) self-advocate for a different treatment protocol, just as I’m self-advocating for a different imaging protocol?

Here is where trust comes in. I need to be able to trust my health care team, trust the treatment protocol I’m on, trust the advice I get from them.

As you can see, I’m having trouble doing that. And at least in part, I think it’s for very good reasons.

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I’ve spent the last couple of months chastising myself for being so anxious about everything that is happening to me. Telling myself that my mistrust of the medical profession in general is based on lessons first learned 50 years ago (and reinforced periodically since then) that no longer serve me well, and I need to chuck that old stuff and develop new ways of engaging with the medical world.

Trust them more, I have kept trying to tell myself. Let down your guard. It’s OK. Relax into their care. “Let them handle all the treatment stuff; you just concentrate on getting well.”

It’s been hard to do that, though. To me, concentrating on getting well means (at least in part) keeping a watchful eye on the treatment stuff. It is time-consuming and can be draining, though. I wish I didn’t feel like I need to do this. There are other healing things I could be doing, instead. But I just don’t know how to ignore my discomfort with the laisez faire imaging protocol or the questions that grow out of that: my questions about whether I’m going to get aggressive enough treatment if I have a recurrence.

As you’ll recall, a few weeks ago I was having nightmares about being denied my chemo. I woke up every time in a panic, my heart racing. Clearly these questions I have are now rooted in my unconscious and bubbling up in my dreamtime as fear. Maybe it’s just a swing of the psychological/coping pendulum? After all, if you’d told me in early July that by the end of September I’d be having nightmares about *not* getting chemo instead of nightmares about getting it, I wouldn’t have believed you!

But how do I know that my concerns can and should be dismissed so easily as just a swing of the pendulum in the process of my coming to terms with having cancer? I don’t know. And I don’t think anyone else does, either. After checking around into standards and practices used in other places by other physicians, I’m not sure they should be dismissed.

There is more than one “right” way to do many things, including cancer treatment. Some of those other ways make more sense to me than what is being planned by my team. What makes it hard is that I have to ferret out these other ways on my own and then approach my team about them, fight to be heard when I propose them (instead of being dismissed), and eventually try to open up a space for dialog on the subject (if it is important enough to me).

My team *never* brings a small selection of options about *any* piece of my treatment plan to me, explains the pros and cons of each one, expresses their preference for how we should proceed, and asks for my input. They *never* ask for my input at all. Instead, *all* aspects of my treatment protocol – even the minor ones that would be most amenable to patient input – are presented to me as statements about what we will do. Period. If I want options, I have to find out for myself what they might be and then fight for them.

I am not treated as a collaborator in the planning and execution of my treatment—a true member of a true team; I am, instead, treated as the subject of a pre-determined treatment protocol. I have to fight to be treated like a collaborator—to have independent ideas, get them heard and be taken seriously. And that makes me seem, to them, to be a very, very difficult patient.

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Last week I had a long, lovely talk with one of my oncology nurses. I’ll call her “Susan.” Early in our conversation, Susan asked me about my constant state of vigilance. It must be exhausting, she said, to feel like I always have to be fighting for my treatment. And she’s right. It is. I don’t really like doing it. That can’t end, though, until I feel more like a true collaborator, rather than the passive subject of others’ decisions and actions.

There are other reasons, though, that I am having trouble relaxing into the care of my treatment team. The reasons boil down to these:

1. The feeling that my health care team and I are not on the same wavelength—do not share similar (or even necessarily compatible) worldviews when it comes to having cancer and treating cancer.

I am far, far less vigilant with my primary care provider (PCP), Anna, who is a family nurse practitioner. I love Anna. I trust her more than any health care provider I’ve been with in many years. Why is this? Because when I went to Anna for the first time, she drew the same conclusions about the cause of my health problem that I had drawn (there’s a medical idiocy saga behind this one, folks), and (this is the important part) she suggested a “cure” for the problem that was easy for me to identify and immediately understand as a cure.

Anna’s cure for my health condition wasn’t toxic to my system. It didn’t involve mutilating my body. It didn’t involve burning me over and over again. It didn’t produce short-term side effects that I could feel in my body today and possible long-term side-effects that I will experience in years to come. It just addressed the problem that presented itself.

I cannot say these things about the “cure” my cancer team has to offer me. While I can now honestly say that I understand and accept that this is the best modern medical science has to offer for cancer patients, and while I am grateful that they are able to offer people like me some hope of living when twenty or thirty years ago there was no hope, what my team has to offer me is still philosophically hard for me to accept as “cure” in the same way I can accept what Anna offers me when I go to her.

To me, cancer treatments are to real “healing” what cancer cells are to healthy cells. Cancer cells are aberrant as compared to normal, healthy cells. The “healing” that is offered in cancer treatments is aberrant as compared to what normally passes for “healing” when we go to our doctors. My health team has been working in Cancer Land for so long that they are no longer able to see this. To them, cancer treatment is “normal.” To me, it’s not. It’s necessary, if I want a chance at survival. But it’s not “normal,” just as cancer cells are not “normal.”

Given this fundamentally different worldview about what is going on, I find it hard to relax unquestioningly into their care. We are not on the same wavelength.

While I have to try to understand things from their point of view, because I now have to live in Cancer Land, where they are, they do not have to try to understand things from my point of view—and indeed, I most often feel that they don’t understand my point of view in any kind of positive, non-pathological way at all. As a friend of mine said, it’s a clash of cultures between us.

You can relax when you know that there is a meeting of the minds, a more or less fundamentally shared worldview between you and the other person. I have yet to achieve this level of comfortable familiarity with my treatment team. They are people who do not think like me, do not appear to appreciate (in any positive way) where I’m coming from, and do not include me in any decision-making whatsoever about my case. It’s totally different when I consult with Anna about other health issues.

With one set of providers, I have trouble relaxing. With the other provider, it’s very easy to relax.

2. A second reason I feel that have to keep fighting for the treatment I want and be vigilant is because in my experience so far, my treatment team has not demonstrated that I *can* safely relax and leave the treatment management questions to them. I have seen this repeatedly when it comes to managing the side effects of treatment.

As you know, cancer treatment has side effects. Not potential side effects. Predictable and very immediate side effects. Two of the most common are well known even outside of Cancer Land: nausea and fatigue. While there is not a lot that can be done about the fatigue, other than counseling patients to rest when they need to, modern cancer treatment has made great strides in reducing the amount of nausea that cancer patients have to endure with their treatments. It’s not perfect; a friend of mine had a great, great deal of trouble with nausea when she was being treated for breast cancer. But for many others, like me, the nausea control meds work pretty well and the side effect becomes manageable.

But these side effects of cancer treatment are just two of approximately 40 that are more or less common. Go to the ASCO site at www.cancer.net, select “All about cancer,” then “Treating cancer,” then “Managing side effects” to see a list of what cancer patients may be expected to endure as a part of their cancer treatments.

I have had several other side effects (besides fatigue and nausea) that became problems that needed to be addressed. One was the neutropenia that kept putting me in the hospital, which Dr. H. finally successfully addressed by putting me on oral antibiotics for a week out of every two-week infusion cycle.

Another was fluid settling in my legs (edema). When my legs began to look like elephant’s legs (enlarged, and with no ankles) instead of human legs, I asked one of my oncology nurses about it. It’s just a side effect of the chemo you’re taking, she said. It will go away when chemo is finished. (There goes that laisez faire treatment philosophy again.) When I persisted, asked her if something could be done, she offered to give me a drug to force my body to expel the excess fluid. I declined, since I’ve heard nasty things about some of those drugs.

So I did a little investigating on my own and realized that chemo is causing my body’s normal electrolyte balance to be out of whack. When your electrolytes are out of balance, it can cause you to retain fluid. Then I remembered that when I was in the hospital the first time, they gave me a pill to take, saying that my blood work was showing I was low in potassium. Potassium is one of the electrolytes. I decided to add potassium iodide to the supplements I take every day, and the edema went away. But I had to find this out for myself. My team didn’t help me.

Another side effect that has caused me severe pain is Hand-Foot Syndrome. It’s caused by the chemo drug leaking out the capillaries in the soles of your feet and the palms of yours hands, burning and inflaming the inner layers of your skin, making your feet turn bright red on the bottom and making it excruciatingly difficult to walk. Meanwhile, the leaking chemo causes the nerve endings in the surface of your skin (on the soles and palms) to go numb. The damaged nerves then send periodic sharp stabs of pain shooting through your feet/hands and up your legs/arms. Eventually the skin on the soles/palms starts to flake and peel off. The worst part of it is, this can become not just a transient side effect of chemo, but a permanent condition that will be with you forever after chemo.

When I asked the oncology nurse about the edema, I had been suffering greatly from H-F Syndrome, too. I was rating my pain level at 85 out of 100, so I asked her what I could do to resolve this very painful, painful side effect. She told me to take Tylenol. She said it would also help address the flu-like muscle and joint pain being caused by my chemo. So I took the Tylenol, but not for very long. It helped the muscle/joint aches somewhat. It did absolutely nothing for the H-F Syndrome.

Once again, I was forced to do some sleuthing on my own. I discovered that taking Vitamins B6, B12 and folic acid along with glutamine powder three times a day should help. I tried it, and within 24 hours the pain had decreased to a 55 or 60 level. Within three days, my pain level was at a very manageable 25-30. Within a week, it was at 15-20. As I have continued to take these vitamins through subsequent chemo infusions, the pain from H-F Syndrome has never risen beyond about a 35-40, and then only right after infusion. When I’m further out from my last infusion, the pain can be as low as a 10-15.

(Interestingly, during that same conversation with that oncology nurse, she commented that my treatment team believes that the reason I am having side effects with my chemo is because of the vitamins I’m taking. I think her rationale is that the vitamins get metabolized in my body using the same pathways that the chemo needs to use, so the chemo winds up staying around for longer and causing problems. I didn’t say anything to this charge; she didn’t give me a chance. However, I thought to myself that it was interesting how if there were any side effects, my vitamins get blamed, but when they see that I’m having an excellent clinical response to chemo and I’m weathering the rigors of chemo reasonably well, my vitamins don’t get any credit.)

If I had rested in my treatment team’s arms, “secure” in the knowledge that they were in charge of managing my treatment and I should just follow their instructions and concentrate on getting well—where would I be today? Would I still be in severe pain? Would I be able to walk without crying? Would I be able to fit into my shoes or wear anything other than sweat pants because of the edema in my legs and feet?

3. This is not to suggest that my treatment team is uncaring. In fact, as I have gotten to know them, they are very nice people who really do care about what they are doing. They are utterly committed to the work that they do, which is not just abstract “cancer treatment” but is also “patient care.” And they have worked hard, within the boundaries of their knowledge and skill (and sometimes stretching those boundaries), to try to help me. The fact that I began this process with huge amounts of psychological baggage to process and the fact that we approach cancer treatment from very different points of view have made their job very challenging.

The “points of view” issue is an ongoing barrier between us, as you can see. The psychological baggage thing, however, has resolved itself to a large extent, in part no doubt because I’ve been able to get to know my team.

Because of my childhood hospitalization experience, it’s very easy for me to demonize my medical caregivers, to expect them to do unpleasant, hurtful things to me while making few attempts to connect with me as a person. But it’s hard to demonize people that you have come to know. Over the weeks, I have come to know my treatment team at least a little. And believe it or not, I do like them. I no longer get dreams in which they are portrayed as thugs out to steal my life force. That’s a good sign from my unconscious.

The truth is, though, that one reason I remain very vigilant is that I do still tend to demonize the medical profession and the people who work within it in inappropriate ways. I have no trouble at all slipping into that frame of mind with regard to others who will be providing care for me, but whom I do not—and cannot hope to—know. In particular, I’m thinking of everyone who will be involved in doing my mastectomy. All of the people who will be in the operating room that day. In my dreams, they come bubbling up out of my unconscious in the guise of butchers.

When Susan and I had our chat, she steered the conversation toward trying to prepare me for the surgery, which is scheduled to happen early in December. I’ve already been thinking about this event, trying to psych myself into positive feelings about losing my breast (hard), about losing my lymph nodes and taking on the risk of lymphedema (more resigned acceptance, now), and about giving up some control by agreeing to have light sedation and a nerve block for the procedure rather than no sedation and a nerve block. I thought I was doing pretty well at pep-talking myself…until I had this dream:

I was at a slaughterhouse where a new crop of butchers-in-training were coming in. They worked hard to learn the different cuts on a cow carcass so that on the assembly line with the slabs of meat they could rapidly identify where the cuts needed to be made and could cut up the carcass appropriately. They were perfectionists. They would catch themselves not knowing where a cut should be made and they would stop and say that they didn’t know, and things would stop on the assembly line while they worked with their teacher to remember where they needed to cut. The last carcass that I saw on the assembly line was a human carcass. The butchers-in-training cut out the muscles on the thighs. I was appalled that they would cut up a human body in that way, just like they did a cow carcass, pulling off parts of the meat like that. I questioned them doing this, and they didn’t seem to think that there was anything wrong with it.

As I’ve said over and over, it’s hard for me to give up control to a group of complete strangers. People whose only way of “knowing” me will be to check my hospital ID bracelet and make sure my name and date of birth match their instructions. People who do not know me and love me and care about me and want to help me because of that. People who are just doing a job. People for whom I will be just another slab of meat on a gurney, waiting for just another procedure.

In such a context, I am supposed to allow them to cut my body open, remove parts of me, put my future health and welfare in question (lymphedema risk), and even assume control of a fundamental bodily process like breathing for me while they’re doing it!

It’s unthinkable. Just unthinkable. The tears gather in my eyes and I’m choking up just writing about it right now. I will totally lose my selfhood, my identity, my personhood in that operating room. I will become just another slab of meat on a gurney, known only by my ID bracelet. I will be at the complete mercy of total strangers.

And I am supposed to subject myself to this willingly—not as an accident victim brought in unconscious on a stretcher and needing emergency surgery, but as a patient voluntarily giving up total control…even to the point of giving up being able to breathe for myself.

I don’t have words to describe how frightening this is to me. How utterly, utterly insane it feels. Yet I have to have the surgery. I have to come to some kind of accommodation because this mastectomy has to happen.

One part of the accommodation is going to have to come from them. I’m not going to do general anesthesia. I will, at the very least, maintain my ability to breathe on my own by having light sedation, instead. The nerve block should take care of deadening the pain around my chest where the surgery will be performed.

I’ve been trying to make the other part of the accommodation for weeks, now. I’ve been pep-talking myself, trying to reach acceptance of the remaining loss of control that I’m going to have to go through. Trying by sheer force of will to convince myself it’s all OK.

Then I had the “butchers” dream.

Clearly, on an unconscious level, it’s not all OK. Not at all. The butchers of my dream were highly skilled butchers, very perfectionistic butchers, very conscientious butchers. But they were butchers nevertheless. They processed slabs of meat with swift skill—even human slabs of meat. And they thought nothing of it. If this isn’t demonization of people who will be a fleeting part of my health care team, I don’t know what is.

Then one day, as I was chasing these thoughts around and around in my head, I had another thought. What if *I* had a job where I worked in an operating room? How would I approach it? Would I be as heartless and cold about my work as I’ve been thinking these people are? As uncaring about the people on the table in front of me? What kind of attitude would I bring to my work?

And I realized that while I might not know the person on the table, in any familiar sense, I would still care about them in the sense of wanting to make sure that what happened to them in the operating room was as positive as possible. I would take some pride in doing my job well, and my job would be to take the best possible care of this person for the few hours that they were under my control. To some extent, even if they were unconscious, I would form a heart-level bond with them while they were under my care.

But that, I thought, is me. I would do that, because that’s the kind of person I am.

And then I thought, “You arrogant bitch. You think you’re that much better than everyone else in the world—particularly those people who work in the OR that you’ll be using? On what grounds do you think you’re that much better than everyone else?”

I couldn’t come up with an answer. In fact, I was able to see that my fears, my projections onto the OR staff, are not logical or fair if I use myself as a gauge of what it means to be human. Assuming they are people much like me, they are not evil people out to butcher me; they are (well, most of them probably are!) people who chose to work in this field because, among other reasons, they wanted to be able to help people, to take care of them.

I am working on getting full conscious buy-in on this. When I get into my “butchers” thought loop, I try to insert the “what is logical and fair to suppose” thought loop, instead. I’m working on it. But I have yet to find out whether my unconscious is buying into it.

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When you talk to cancer care providers, you get this impression that all is lightness and roses in cancer treatment. They project an air of confidence, of quiet faith in the efficacy and benign benevolence of the treatments they have to offer. Your fears, as a patient, are addressed with pithy reassurances. At a time when your world is careening out of control and wobbling on its axis, they play the role of stabilizers. “It’s just a new normal. It’s nothing to be too afraid of. Relax. Undergo the prescribed treatment. We’re here to help you get through this.”

For all that cancer treatment seems “normal” to people who work in that field, when cancer hits them are they as sanguine about it as they appear to be when talking to us patients? After all, with their insider knowledge about cancer and its treatments, you’d think that if anyone had a reason to approach this beast fearlessly, it would be them. They project such calm reassurance to us…when it’s their turn to become patients, surely that calm reassurance becomes the foundation of their reaction, right?

Apparently not.

In my conversation with Susan, she mentioned a surgeon she knows who had a testicular cancer scare. She said that he was immediately “terrified.” And she indicated that she and her co-workers totally sympathized with him.

A friend of mine tells of a physician she knows who contracted an incurable cancer and elected not to have any treatment at all for it—treatment that might have at least prolonged his life a bit. Instead, he played golf every day until he was too sick, and then he died.

If cancer treatment is all that wonderful, all that benignly benevolent, as they keep telling the rest of us who are not cancer specialists, then why these reactions? If having cancer and undergoing treatment for it are just a “new normal,” why can they not maintain that attitude of calm reassurance when the tables are turned and they become the patients?

I think it’s probably because what they project and what they want us, as patients, to believe is not necessarily consistent with everything they know as “insiders” in Cancer Land.

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My neighbors, Rick & Tracy, gave me a necklace last week. The pendant is inscribed with a list of things that cancer cannot do—like suppress memories (!), invade the soul, or kill friendship. I wear it when I go out, along with another necklace I’ve worn from the beginning—one that has a symbol for the throat chakra, which stands for speaking and expressing oneself. That’s another thing cancer cannot do: It cannot silence my voice, cause me to quit questioning, prevent my advocating for myself in the best way I know how. Even if it makes me seem like a difficult patient. A PITA patient: Pain In The Ass.

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I’ve been thinking of going to M.D. Anderson Medical Center in Houston. They have a whole clinic there devoted to treating just IBC. Their physicians are specialists in the kind of cancer I have, and they are involved in cutting edge research and treatment for this disease. I want to unload this burden of vigilance. I want to rest easier about the kind of treatment and surveillance protocols that are being used in my case.

Unfortunately, cost is a factor in whether I could really do this. If I became a patient at MDA, how would I manage to go back for the check-ups that would be involved? I know people do—women from all over the country fly into Houston every three months to check in at the clinic.

An alternative would be to go to MDA and try to get my local oncology team to implement MDA’s treatment protocol. I’ve heard of people doing that, too. This would save trips to MDA, but would my treatment team be willing? Or would they just be offended?

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When I was first diagnosed, I entered into a long period where my world got very still. It became a silent, quiet, death-like world. I quit turning on the radio in the morning and listening to it in the background. I quit turning it on in the car when I was going to work or to doctors’ appointments. For several weeks, I quit watching any TV at all.

I’ve heard of other newly diagnosed cancer patients doing the same thing—ceasing to watch TV shows that they used to enjoy watching every evening with their partners, turning off the TV instead, living in a silence befitting a funeral home.

Or a monastery. I guess it depends on your point of view.

But gradually, the old ways return. In recent weeks, I sometimes turn the radio on in the morning. Friday morning while fixing breakfast, “Ballroom Blitz” came on the air, and I found myself dancing around the kitchen to it.

I ought to listen to the radio more often.

Later, I was working in the kitchen again, cleaning up after breakfast, worrying about whether going to MDA is the right thing for me to do. I had heard from a friend about how the doctors at MDA wanted to treat her when her cancer came back in the skin around her mastectomy scar. I realized I would not have felt comfortable following that recommendation. I would have wanted to do what her local cancer care team advised, instead. Or perhaps I would have wanted to do both—they were not mutually exclusive options.

So should I go to MDA or not? Scary and exhausting though it is, maybe my cancer care really *is* in my hands, no matter where I go, and there is no getting around that? Maybe I just need to stick with my locals, try my best to increase my trust in them, continue to do my research, be the best self-advocate I know how to be (even if it makes me into a PITA), and go from there?

Just then a Bob Marley song came on the radio and the lyrics interrupted my train of thought: “Don’t worry ‘bout a thing. Every little thing’s gonna be alright.”

Gotta love those synchronicities.

I don’t know whether I’ll decide to go to MDA or not. Maybe it doesn’t make any difference whether I do or I don’t, because either way, “every little thing’s gonna be alright.”