1-10-10 Update – I Become High-Maintenance (and Fuzzy)

At more than 5 weeks post-surgery, I am all healed up—at least, as far as the mastectomy itself goes. Right after Christmas I got the OK from Edith, the surgical nurse practitioner, to quit bandaging the wound, since it had almost completely healed. That meant that I could quit wearing the surgical bra 24/7, too. Ah! What a relief!

Despite the fact that I no longer have to dress a wound every day, I am finding that my body has become a fairly high-maintenance thing. Not only do I have to shower it and feed it, as I have always done, but now twice each day I have to do my post-surgery exercises to strengthen my affected arm and regain my range of motion. This will probably continue for quite some time. (Keep reading.) I also need to do manual lymph massage once or twice a day. And I seem to do better when I spend some time sitting down with my right arm elevated on pillows to allow gravity to help me with lymph drainage. This, of course, means enforced inactivity. Even reading is a problem, because I read non-fiction mostly and I tend to underline and highlight as I read…and I hold these instruments in my right hand, since I’m right dominant.

I have fistfuls of vitamins to get down one way or another. (Nutritional support to prepare for and go through radiation therapy.) And I should be doing some kind of aerobic exercise every day, too. (Working that into my schedule has not yet happened, though I have friends on hand ready to kick my behind on this point if I don’t change soon.)

My stamina isn’t what it used to be, so I spend more time sleeping than I used to. While this can be cozy, especially in this bitterly cold weather we’re having, it makes for a shortened period of productive activity each day. I can push myself a bit to get things done, but when I do, I always pay the price by needing to rest more to make up for it.

Soon the demands on my time will become even greater because my hair is growing back. :) The stuff on my head is already long enough to feel damp after I’ve showered and dried off. I’m very peach fuzzy, now, except for the small place front and center where it’s looking rather bald still. Soon I’ll have to actually spend my customary 30 seconds running my fingers through it to “style” it again! :) Hope I don’t have to grow it extra long to cover up some residual baldness.

I also recently shaved the hair off my legs and from my left armpit for the first time in months. (I’m not allowed to use my blade razor on my right armpit, because it’s my at-risk arm. If I nicked myself shaving with a blade, it would be — as all things are with that arm nowadays — a Big F’ing Deal. I’ll have to buy an electric razor, I guess.)

I’m even starting to get eyebrows! Right now they’re little commas laying on their sides over my eyes, but it’s so nice to see them again. I don’t think I’ve grown any new eyelashes yet. No doubt with more time they will come.

I even think I’m starting to feel those two or three post-menopausal hairs on my chin again. Sigh. If I have residual hair loss, why can’t it be on my chin and upper lip?!!! Ah, the cruel perversity of cancer treatment side effects! :)

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As my surgical wound healed up and I could transition into wearing my regular bras when I went out in public, I became dissatisfied with the gauze and cotton batting that I was using to stuff the mastectomy side. At my age and weight, Mother Nature has endowed me with enough mammary substance that I’m kinda droopy and heavy. Gauze and cotton batting is anything but droopy and heavy, with the result that no matter how much gauze I’d try to stuff in there, I looked very lopsided. The gauze side was high and perky-looking, and the Mother Nature side was, well….

I needed something with more heft to it. So, using instructions gleaned from the inflammatory breast cancer listserv, I made myself a foob — a fake boob — using bird seed and an old knee-high hose. It looked pretty good. At least it rode at about the same level as Mother Nature. But it felt hard as a rock when someone would hug me. No need to guess which was real and which was Memorex!

It had the added disadvantage of being fairly round and compact, instead of nicely spread out and conforming closely to the lines of my chest, with the result that when I leaned over it would tend to fall out the top of my bra. Sometimes it fell out the bottom of my bra when I was just walking around. I resolved that if this ever occurred when I was in a really public area I was just going to kick the foob out of the way as discretely as possible and pretend that nothing had happened, all the while clutching something to my chest to obscure the fact that I was now asymmetrical.

Today, though, I was able to broadcast the contents of my homemade foob in my garden, because yesterday I went and got a professional foob. It was so comfortable that when I got home I found myself walking around with it (and of course my bra) still on, rather than ripping my bra off the minute I got in the door, which has always been my habit. This bodes well for the future!

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I am slowly adjusting to the new shape and feel of my body. This adjustment is not without some hiccups, though.

Last Wednesday I was in the shower when I felt something new: a lump in my remaining breast. I knew that this was something that deserved attention, so I called Edith and left a message asking her whether this was my old fibroadenoma that I’ve had since 2001 (but which I’ve never felt before) or something new.

While I waited for a call-back from her, I realized that I had been having another concerning symptom: my breast was intermittently itchy. Back last July, after I was diagnosed with IBC, I wondered if there had been any really, REALLY early warning signs that I had ignored. My right breast had itched off and on for many months. I’d never paid much attention to it, other than to rub some lotion into my skin there. But in July I learned that an itchy breast can be a symptom of IBC.

The sudden appearance of the lump in my left breast, combined with the itching, made me doubly certain that I needed to get this checked out. I wasn’t freaking out, but I knew that this was something that should not be brushed under the rug. Edith called me later that day and told me to come in to the clinic and let her examine me the next morning.

Wednesday night I woke up in the middle of the night and couldn’t get back to sleep. As I lay there trying not to think, but thinking despite myself, the fear came. Not freaking out. Just a profound sense of dread and sadness. “Oh, no. Here we go again?”

If it was cancer again, would it be the same cancer spread to the left breast, or a totally new cancer? Would it have the same hormone signature as the original cancer, or would it be different now? Sometimes chemo causes the cancer to change its hormone status, after all. And if that had happened, how would I be treated now? Would I have to take more chemo and if so, which agents? Would my radiation be delayed? Would that even matter, if I had a recurrence already? What about my five-year treatment with Femara to lower estrogen levels in my body and make it less susceptible to cancer growth?

I had read about survivorship issues — people feeling that their body has betrayed them once and not knowing which signs and symptoms were irrelevant and which were indicators that real disease could be present again. People running to their doctors with every little thing. I had determined that I would try hard not to be one of those people — nervous about every little thing that happened in my body. Yet here I was, not even finished with one cancer treatment, and I was concerned about having possibly developed another cancer! This survivorship business is harder than I thought!

When I saw Edith, I said that I had also been having itching sensations in my breast and that I was mentioning this because it’s one of the signs and symptoms of IBC. I could see her frown and start to say something, as she was washing her hands to examine me, so I added, “At least, according to the Mayo Clinic.” At that, she shut her mouth, dried her hands, and proceeded to do the exam.

As she felt my breast, her brow furrowed and she asked if she could mark on me. Then she sent me down for an ultrasound with Dr. Z, who was not in the clinic that day but was in the hospital and graciously agreed to do the procedure for me. Dr. Z gave me a quick peek with the imager and asked me if I’d lost weight. I said yes, 50+ lbs. since this all began. She said that the lump I noticed was the same fibroadenoma that I’ve had all along, and it’s the same size and at the same location as it was in mid-November when I was last imaged. I’m just feeling it now because I’m thinner, so it stands out more. And this was apparently the first time I’d actually noticed it. While I had suspected that maybe this could be what I felt, it was nice to have that suspicion confirmed by the experts.

I noted, however, that Edith never did address the itching issue. I am keeping an eye out, though…..

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I no longer know whether to say I have cancer or I have had cancer. I haven’t finished active treatment yet, so it feels kind of premature to say “have had.” The pathology report indicates that my tumor burden after chemo was not very great at all, and surgery took out what was there (and more…). Radiation therapy feels anti-climactic, like an afterthought. A minor mop-up action. So it really does feel as if my “real” cancer treatment is over. And if that is the case, “have had” is the correct way to phrase it. Or maybe even “had.”

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Maybe a hint about how I should refer to all of this is contained in the fact that I lost the pocket angel that my friend sent to me early-on. It seems to have fallen out of my pocket, along with another kind of pocket angel that I myself have had since long before my cancer diagnosis. While I later found my original pocket angel, I have not yet found the one my friend gave me when I got cancer. Maybe it has disappeared because I no longer need it and the person who finds it will need it more?

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The next step is radiation. I’ll meet with my radiation oncologist (rad onc) on Friday this week and after seeing her we’ll do the “simulation.” Simulation is where we all get together and decide on exactly which areas of my body are going to be radiated (I will insist on having a say in that decision), how I will lay on the table, and where the guns will be pointed at me. A form-fitting mold has to be made to help me lay in the exact same position every time I have a treatment, too. I’m told that all of this will take several hours to accomplish. Presumably it will all get done on Friday, and my guess is that on Monday the 18th I’ll begin radiation therapy (rads).

I am getting the impression that while rads are an important piece of breast cancer treatment, not everyone is uniformly convinced that they are a good thing. I’m going to be getting somewhere in the neighborhood of 60 Gray of radiation exposure, which is a whopping amount. Hard to believe that not very long ago I was fussing with my dentist about what I felt were unnecessary screening x-rays of my teeth. And now I’m submitting to this?!!?

Like chemo, rads will damage the good cells just as surely as it damages the cancerous cells that may remain in my chest, where the tumor activity was. The idea is that the good cells know how to repair themselves, while the cancerous cells do not. (I will be taking a revised supplement regimen for as long as I can afford to do so in order to augment the effects of the radiation on the cancer cells while giving my healthy cells some of the things that can help them in their self-repair.)

I finished a book about the history of breast cancer (*Bathsheba’s Breast*) and got the subtle impression from the author that there is some low-level, simmering controversy in the medical world about whether radiation therapy is an unmitigated good in breast cancer treatment or not. Then I went to a New Year’s Eve party with some of my friends and one of them told me that an acupuncturist (I think it was) friend of hers who deals with cancer patients does not recommend radiation and would I like to talk to her?

I don’t think I’ll reject doing rads, but I am seriously thinking of refusing to allow them to radiate my axilla — my right armpit where the surgeon chose to take out so many lymph nodes. Radiation in that area will only make my lymphedema risk worse…and given that my pathology report showed that I was node negative after chemo (no evidence of active cancer in my nodes), I think this approach will be safe.

I’m going to be taking an aromatase inhibitor called Femara for the next five years, which is supposed to control estrogen receptor positive cancer (like the one I have had) by creating an estrogen-deprived environment in my body. I think it makes a great deal of sense to rely on this for control of any micro-disease that may still remain in my axilla.

We’ll see what the rad onc says.

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I had a dream this last week. In it, my father asked a friend of his about who they thought was a very good medical oncologist — a world-class oncologist. The friend said Dr. H, and my father reported this to me. In the dream, I heard this news with interest, but it didn’t change my feelings about him. It was nice to know that he’d worked on my case, but I didn’t feel a longing to go back and receive care from him…although I felt that somehow I should feel that way! I was just relieved that although he may be good, he wasn’t good for me and I no longer had to rely on him.

When I woke up, I wrote Dr. H and my old treatment team a brief thank-you note for helping me to get the very good pathology report that I got after my surgery. I didn’t credit them with “giving” or “getting” me the good report. Only with helping me to get it. After all, I did a few things, too. And in the end, I think it was kind of the luck of the draw — that I have a resilient body that responded well to the treatment they administered and the measures I took.

I hope that is an acceptable level of gratitude.

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Seeing my rad onc and getting simulated is not the only thing that’s going to happen this Friday. Remember my saying I was getting laid off on November 20th? Well, the date on which that was scheduled to happen was pushed back. It’s now going to happen on Friday.

There are a number of things I could say about this and the folks who made that decision (not my old bosses, but a new crew who goose-stepped in and took over), but I won’t say any of them in public just now. I’m filing a formal grievance at the university about the decision, and I have a couple of attorneys who are very interested in my circumstances.

I will say this: I am currently unemployable on any but the most meager of part-time bases. And until I finish my active treatment and regain my strength, I will remain so. I’m not at all sure how this is going to work out in either the short run or the long, long run, but it is not cause for feelings of relief and security and relaxation.

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I have been asked to become an advocate for inflammatory breast cancer. I was recently venting on the IBC listserv about the swelling and dull pain in my at-risk arm (keep reading) and the woman who heads the IBC Foundation asked me if I’d like to turn my anger and frustration to some kind of good purpose by doing public speaking gigs to promote awareness about IBC.

Of course, I said yes. If I’m going to be unemployed, this will give me something worthwhile to focus my attention on — other than being a cancer patient, which I think is a poor focus and source of identity.

Last week I began cleaning out my office, preparatory to being laid off, and I could feel the loss of belongingness and identity getting deeper and deeper with every picture I took off the wall, every box I packed. My work (even if I wasn’t working many hours) and this cancer battle have defined my life for the last 6.5 months. Now my work is being forcibly taken away from me (not unlike the way my health was forcibly taken away from me by the cancer and its treatment…but I digress), leaving me with only the cancer battle as a major focus in my daily life.

But if being a cancer patient is your basic identity, can you afford to give up the cancer that gives you that identity? I think I need something more to do, something meaningful, until I can manage to work full-time again and find another job. In order to become an IBC advocate I will need to try to do some training and improve my level of knowledge, but I look forward to doing this.

I’m already slated to do some volunteer work for my hematologist, who drafted me to help him distribute a newsletter highlighting the link between cancer and blood clotting disorders (which I have). I’m also participating in a clinical trial for him on how my blood thinner (Lovenox) can be effectively administered using a special little port rather than having to give myself a shot every day. I’ll start that on Monday.

Finally, I volunteered this weekend with my hospital’s Patient Resource Center to be a mastectomy model for women who are facing the procedure and would like to see a real mastectomy up close and in person. I would have liked to have seen one, been able to touch one (Who knew that the chest wall would be hard as a rock afterward?!)…. Not to mention seeing a prosthesis and how it fits over a mastectomy. But that’s a very personal thing to ask a woman to show you. And no one ever volunteered.

So I thought I’d volunteer either for individual women who may have an interest or for the class on breast cancer surgery that the Resource Center will have periodically. I’m not sure they’ll take me up on my offer, since I’m a “problem patient” and all. :) I think they’ll probably be scared to death of what I’d say when I was asked questions. But at least I’ve made the effort.

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Being a member of the IBC listserv is a mixed blessing. I have learned a great deal about the experiential realities of undergoing IBC treatment from these women — realities that were never shared with me by my treatment team. (Probably because they don’t know them. For all their theoretical and treatment-oriented knowledge about breast cancer, none of my care providers have ever had it, themselves. They’ve not ever really *lived through* some of the things they say to their patients, never *lived into* the reality of it all, themselves.) And I have gotten useful information from the listserv, like how to make a temporary foob or how to deal with Hand-Foot Syndrome.

But I find that this blessing brings with it a great sadness. Last week we heard about three women who have died from IBC after fighting it for many years. Then it seems there is always someone who has been NED (No Evidence of Disease) for many years who suddenly finds herself with a recurrence and becomes Stage IV. And of course, too often someone joins the list because she has only recently been diagnosed. The latest person is only 33 years old and has two small children — one a newborn.

How can you not want to cry, when you read these things? You want to cry for them, because it is hard to see people lose their battles or be forced to join this one. You want to cry for yourself, because not very long ago you were the one who was forced to join the battle, and one day in the future it may be you who is losing.

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There are not many perks to being a cancer patient, but there are a few odd ones, here and there. Like not having to shave your legs while you’re on chemo. Or the small kindnesses that people do for you when you’re wearing your chemo headwear in public and they realize you’re fighting cancer. Sometimes just connecting with you is kindness enough.

As I was checking out at the grocery store the other day, a young man suddenly appeared at the foot of the counter to push my cart out and help me load my groceries into the car. I was wearing one of my little knit caps that screams “CANCER PATIENT!”, and I supposed that he just felt sorry for me. As we walked out the door, he said, “Are you in remission?”

“Kind of,” I said. “I’m still in treatment, but I just had my surgery and the pathology report was really good.”

“What kind?” he asked.

“Breast cancer,” I replied. “Inflammatory.”

“My grandmother had breast cancer,” he said.

“Oh? How is she doing now?”

“She died,” he said. Then, after a brief pause: “She was Stage IV.”

The things that can make you tear up are not limited to the IBC listserv.

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Another perk of having cancer is a program called Cleaning for a Cause. I signed up when several friends sent me info about it, and I got my first cleaning last Friday. Cleaning for a Cause is a national program whereby local cleaning services can sign up to provide a limited number of free house cleanings to women who have been diagnosed with cancer. They do a good deed and take a tax write-off. Those of us who are not in the position to clean very well for ourselves get some help. Win-win.

Town & Country Services did my work for me, here, and they were wonderful! I mean, even the little doggie nose prints on the windows were scrubbed off, the blinds were dusted, and the fiberglass shower floor was bleached to white again. This was simply wonderful, and I deeply appreciate this program and the women who did a cleaning blitzkrieg on my house.

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My therapist asked me this week where I am now with this cancer battle and its challenges, as compared to where I thought I’d be. It’s an interesting question, because the answer goes back to the events surrounding my surgery.

At the moment I woke up and quickly realized that it was essentially done, the thought that came unbidden to my head was, “Thank God it’s over.” It was accompanied by a feeling of deep inner peace, a strange kind of inner weightlessness.

Even in the week after the surgery (before the pathology report came back) when the knowledge that my surgeon had taken Level 3 nodes seemed to indicate that chemo had not been as effective as we’d hoped — at the core of my being was that unfamiliar weightlessness. That lack of depression and worry. That sense of peace and contentment…that things were just as they were supposed to be, and if they weren’t, I might or might not be able to change them, and either way would be OK in the end.

I can’t explain it. At least, not on a rational level. But an Internet friend of mine named Dick might have an explanation, though it doesn’t exactly qualify as what we would typically think of as “rational.”

Dick has taken a number of workshops from the Monroe Institute and become fairly adept at getting his consciousness to leave his body and access what the Institute calls other focus levels — other levels of reality. He took a trip out into the focus levels while I was on the operating table and said he saw me talking at length to some kind of divine being. “It seemed to be a two-way conversation,” he wrote to me later. “Some give and take, vaguely like bargaining, but from your strong, not helpless state. Perhaps more a Wise Old Woman than a Wise Old Man counseling with you. Quite lovely.”

I’ve thought about that a lot since then. Maybe this is why I woke up from surgery all blissed out and have more or less remained there, at my core, since then? Even though I’ve been situationally discouraged and depressed or frustrated or angry, in the end, the buoyancy reasserts itself. The core of my being is not as heavy as it has always been; it is lighter, easier, more content. There are times that it even seems joyful. It’s been kind of nice, even though mysterious.

I seem to be becoming a friggin’ Julian of Norwich (a medieval mystic). “All will be well, and all will be well, and all manner of things shall be well.” I’ve always admired her buoyant spirit and faith that it will all work out in the end, but I’ve never really understood her attitude. Now look at me! Who would have thought that my inner Tigger was trapped all these years under my right breast?

I really hope this doesn’t go away.

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Despite the above, I have had some problems and some periods of discouragement, depression and anger…about my arm, of course.

On Christmas Day I got a shallow dog bite when one of my dogs and my son’s & daughter-in-law’s dog got into a dispute over a toy. I tried to pull my dog away from theirs using my right arm (not smart, but a reflex action), which put a strain on the arm that it wasn’t ready to take at that stage of my recovery, and I also got bitten on my right thumb. I immediately washed the wound, put tea tree oil on it, and bandaged it. While there was no infection and the wound healed nicely, my hand became a bit swollen as a result and my arm became a bit more swollen than it already was. That’s because lymphatic fluid rushed to the injured site (as it should have), but was not able to work its way out again very readily due to the fact that my lymphatic system that carries the fluid to and from my arm has been seriously disrupted. Gravity helps the fluid get into my arm, but getting it back out again is a bit more of a challenge.

Two days later the kids were out helping me split and stack firewood. As I was putting the protective tarp over the log splitter when we were done, I tripped over the wheel on the base and fell backward onto my rear end and my right arm. Muscle strain in the arm caused lymphatic fluid to move to the injured muscle, which means of course that more swelling ensued.

Needless to say, I was not pleased. I’d been trying desperately hard to keep from developing chronic lymphedema, but here I was injuring myself during my surgery recovery phase. Over and over again!

I saw Edith the next day after the fall and I told her about these two assaults on my arm. She looked appalled that I had already sustained such injuries, and she stared at my slightly puffy hand and at the armpit-to-wrist compression sleeve that I wear (now) every day. It was like she was groping for what to say to me, that I should have sustained such injuries to my at-risk arm so soon after my surgery.

I looked at her, staring at my hand and arm, and I said, “This is my life, Edith. Why do you think I was so frantic back in August and September about wanting to avoid the risk of lymphedema? It’s because these kinds of things happen to me all the time.”

I couldn’t get a lymph massage from my therapist in order to try to drain the excess lymphatic fluid because she was on vacation through the end of the year. So I did my own manual lymph massage at home and, at Edith’s suggestion, sat with my arm elevated on pillows as much as possible, to encourage the lymph to flow out of my arm and into my trunk by using the force of gravity.

A week after the tumble, my arm began to ache. Just a dull, throbbing ache that makes you want to do as little as possible with the arm. I got pretty discouraged. I had woken up from surgery with that same ache, but it had gone away and I thought it was just post-operative pain — not the kind of pain I’d have to learn to live with. Now it’s begun to look as if this is a condition that I will have off and on for the rest of my life.

My father has suggested that the pain may be caused by (or exacerbated by) working for hours at the computer. If that’s the case, I’m in big trouble, because that’s what I do for a living: I write and edit, and that means working on a computer.

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As I’ve been fighting for the health of my at-risk arm, I’ve thought over and over again about why my surgeon decided to take not just Level 1 and Level 2 nodes, but Level 3 nodes as well. I have to be so very, very careful now. For the rest of my life. If she had only taken Level 1 nodes, what happens to my right arm would be a big deal. Cuts, bites (even just mosquito bites, much less animal bites), scrapes, bumps, falls, repetitive motions (like running a vacuum, using a weed eater), muscle strains…. All would be a big deal. If she had taken Level 2 nodes as well, what happens to my arm would be a really big deal. Since she took Level 3 nodes, what happens to my arm is a big f’ing deal.

It is this situation that I wanted very, very much to avoid. And my surgeon knew this. So I don’t understand why she chose to take Level 3 nodes. She promised me she wouldn’t unless it was really, really necessary. So it must’ve been really necessary, right? You’d expect the pathology report to come at least somewhat close to bearing out her judgment on this. You’d expect it to say, “Yup, there was (or had been) cancer in quite a few of these nodes.” Ergo, the nodes needed to come out, in order to give me an improved chance for survival.

Instead, what the pathology report says is that there was no active cancer in ANY of the 22 nodes that were removed, and there was evidence that there HAD BEEN cancer in only four of the nodes. While this is excellent news in terms of my prognosis, it really calls into question my surgeon’s judgment. Just what was it that she thought she felt in the Level 2 nodes that made her feel she had to take Level 3 as well?

Then again, while she certainly directed my surgery, we’ve already established that she didn’t do it alone. I’ve begun to wonder whether the decision to remove Level 3 nodes was made by her, or whether she left that decision to the resident who assisted her.

Dr. N told me on the day after the surgery that he is her best student, so I’m guessing that as his academic mentor she is in the business of building him up as a surgeon. Part of building him up might entail leaving parts of the responsibility for the surgery to him, even though she was ultimately responsible for “directing” and approving what he decided to do, much as I decided peoples’ grades when I was a preceptor in grad school, although the professor was the one who was ultimately responsible for approving the grade I awarded, even though he never saw the students’ work, himself. It may have been the resident’s decision to do a Level 3 dissection, and she may not have questioned his evaluation and decision, just as the professor never questioned my decisions about grades.

I say this because I finally got up my courage and read the surgical report. I may be over-reading it…I don’t know. I put a lot of thought into what I write and how I phrase things. Not everyone necessarily does. So I may be reading things into the report that really aren’t there. But here’s what I noticed:

The report is written in the passive voice. “This was done.” “That was done.” Including the evaluation and decision to take Level 3 nodes. Later the report moves into the active voice: “I did this.” “I did that.” Then it moves into the passive voice again.

The passive voice disguises agency. You don’t know who did something; only that it was done. If the whole report had been written in this voice, it would be one thing. As it is, the change in voice from passive to active and then back to passive again may indicate which parts of the operation were conducted by my surgeon personally and which she left up to the discretion of her student.

When this student (resident) came to talk to me the first time after the surgery, he seemed eager to mention that they had taken the Level 3 nodes and that they had cut the pectoralis muscle in order to do so. I found it curious, at the time, that he had volunteered this info, since his visit didn’t seem to be designed to give me a thorough run-down about the surgery. That would come later, after I had had a chance to rest. I was still groggy from the anesthesia.

But now, after reading the surgical report, I have to wonder all over again…. Why was this uppermost in his mind to tell me just hours after the surgery? Was he delivering a report to me about his own involvement in the procedure — the things he was responsible for doing?

Which makes me wonder whether Dr. N was more focused that day on being a surgeon and giving me the kind of procedure I had asked for, and that she had agreed to provide, or more focused on playing the role of teacher?

I hate teaching hospitals. You can never trust who is actually doing things to you. Especially if you’re unconscious at the time.

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Today I talked with a breast surgeon who works in another state. We were talking about other things, but I mentioned my recent surgery. One thing led to another, and I expressed my puzzlement over why my surgeon had chosen to take my Level 3 lymph nodes.

She said, “I can tell you why. Do you want to know?”

“Sure!” I said. “I’ve been wanting somebody to explain why her decision was justified, given that there is such a great discrepancy between her judgment and the pathology report findings.”

“The reason,” she said, “is habit. Of course, doctors don’t like to call it that. They prefer to call it ‘wisdom.’ But that’s what it really is — habit. We routinely take lymph nodes because that’s the way we’ve always done it. Studies have begun to show that taking lymph nodes has no survival value except in cases where there has been a poor response to chemo. In cases where there has been a good response to chemo, taking the nodes does not improve a patient’s chances of long-term survival.”

“But I was told that this is exactly why I had to have mine removed!” I exclaimed.

“I’m sure,” she said. “But that’s not accurate. If cancer is in your nodes at any time, it is already systemic. Taking the nodes out will not prevent the cancer from becoming systemic, at that point. It’s already floating around microscopically in your body. Taking your nodes out won’t change that.

“If you’ve had a good response to chemo and your nodes are no longer palpable and a PET-CT scan post-chemo shows that there has been a good response, you gain nothing in terms of survival by removing the nodes at that point.”

“Neither my original oncologist nor my surgeon wanted to do any post-chemo imaging,” I interrupted. “They said there was no need.”

She just paused a second, as if she didn’t know what to say. (And she otherwise seemed to be a very talkative person.)

“The only reason to remove the nodes,” she continued, “would be to achieve local control, in cases where chemo alone has not achieved this. There is no survival value in removing them under other circumstances.” And she gave me info on where to find the reports on two clinical studies that support her position.

“It takes time for these kinds of changes to become accepted,” she finished. “It took ages for surgeons to quit doing radical mastectomies and start doing modified radicals, despite the fact that there was ample evidence showing that there was no survival value in doing the more aggressive procedure. It took decades for surgeons to accept that lumpectomies can be done in many cases instead of mastectomies, with equally good survival odds for the patient. It will probably take time for today’s surgeons to get out of the habit of automatically taking nodes and then bragging to their colleagues about how many they managed to remove.”

I found myself getting angry. Where was this information when I was searching so desperately for it last August and September? Why hadn’t I been able to find it, then? Would I have reached some other conclusion about whether or not to allow them to take my nodes, if I’d had this info back then?

But now I’ve made a decision that is irrevocable. My nodes are gone. All three levels of them, thanks to my poor judgment in trusting Dr. N’s judgment.

As I have sat here with my arm aching because of the violence I allowed to be done to it, knowing that that violence may not have been necessary, I have not been a happy camper.