1-31-10 Update – Deep in the Belly of the Beast

It has been a very, very rough week. One of the hardest I’ve had in quite some time. My therapist tells me that this week I have been deep in the belly of the beast of cancer and its modern treatment. I can think of no better way to describe what’s been going on.

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I have been surprised to find that the effects of chemo are so enduring. My hair may be growing back, but certain features in my body continue to give away its presence. Among other things, my fingernails and toenails remain thin and brittle. One toenail, after my bout with Hand-Foot Syndrome, is taking its sweet time about falling off. And in general, my formerly sturdy fingernails flake and peel very easily nowadays.

Of course, I continue to have very, very mild Hand-Foot Syndrome. The tell-tale tingling is there most all the time, especially on the soles of my feet. Just at a very low level. Some of the drugs I will need to take in the years to come to try to keep the cancer at bay (or eliminated) also can produce neuropathy as a side effect, so I may not have seen the end of this.

I note, too, that my memory problems are increasing. Long-term and short-term memory are not what they used to be. I make a lot more mistakes when I type now. I have trouble remembering things that I’ve known forever (like how to write a capital “H”). Taking in new info may be hit or miss. This isn’t a gross problem…but a more subtle one. At least, I think it is! I’m not sure others notice, but I certainly do.

The effects of cancer treatment linger for quite some time, apparently.

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Between the cancer treatment and the diet my nutritionist recommended I follow, I have lost 50 lbs. since last July. This has put me back down in the size range where I can go into thrift stores and hope to find neat stuff that I can wear –– and at bargain prices.

I live in a pretty affluent area, here, and you don’t find many rich women who are heavy and give their cool, unwanted clothes to thrift stores. But as I get thinner, the possibilities are opening up for me. I was thrilled to buy a pair of Levi’s jeans in the exactly the style I like for just $2 right after Christmas. I do love a bargain!

There is another benefit to losing weight that I had failed to fully appreciate until recently. I knew that losing weight was important because the tumor I had was estrogen sensitive, and fatty tissue produces estrogen precursors that your body turns into the estrogen that feeds such tumors. Less fat = less estrogen = a less welcoming internal environment for the cancer.

What I did not realize is that for breast cancer in general, losing weight significantly improves long-term survival no matter what your hormone status.

To me, this means that at least some of the reason my pathology report was so good may have been because of things I did to help myself –– like losing weight (and/or taking nutritional supplements). It was not necessarily just and only the chemo.

It’s a tiny bit empowering, to realize this.

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Early Tuesday morning last week I had an exchange with my radiation oncologist friend, J-Rad, about the treatment plan that Dr. J was re-creating for me. In light of the fact that the revised plan might increase my lung exposure, I asked him about pneumonitis caused by radiation. He responded, as he has in the past, by saying that only 10% of the lung is impacted in a well-designed radiation plan and there is usually no loss of total lung function from that. I responded:

“I saw the pictures yesterday of how much lung was scheduled to be hit in Dr.
J’s original treatment plan, and it was the biggest d*mned 10% I've ever seen! Perhaps in terms of volume, it is about 10%. But judging from the 2-dimensional representation on the page that I saw, it was considerably larger than that.

“And she is adjusting the treatment plan to avoid hitting the axillary area AT ALL, which her original treatment plan failed to accomplish. I understand that the new plan will involve *potentially* hitting the lung more...which of course raises concerns about damage and either short-term or permanent shortness of breath problems. She says she doesn't think it would cause pneumonitis or any breathing problems...but of course the question is....”

A couple of hours later, as I was driving in for my day’s series of medical appointments, I got a call from the radiation planner telling me that Dr. J had decided to give me the day off so that they could thoroughly re-do my treatment plan. She said that we would do both set-up and my first treatment today on Wednesday instead of doing set-up again that day.

I asked her if I was still going to get pictures of where the radiation would hit. She said I’d see where it hits as it shows up on my skin. (Rolling of eyes, here This is exactly what the radiation techs had said the first time I asked them this question, too.) I pointed out that by the time it shows up on my skin, it’s too late to prevent it going someplace I had not wanted it to go.

It is very telling to me that this is everyone’s response to that question. They expect patients to just “wait and see” what has been decided for them, rather than giving them pictorial evidence up-front so that the patient can *really understand* what is *about to* happen -- not what *has just happened* -- to them.

Anyway, then she said yes, I would get pictures, though they wouldn’t be like the pictures that I got on Monday because it’s going to be all low-energy electrons being used and they don’t have to take pictures like that for this kind of administration. But there will be pictures showing me where the rays will hit.

Thinking that J-Rad was gnashing his teeth at how I’m “telling them what to do,” which he has criticized me for doing with Dr. H, I wrote this message to him:

J-Rad,

Sorry if it seems to you, once again, like I'm trying to tell you-all how to do your jobs. I'm really not trying to. But the brutal truth is, I have to live not only with having/having had cancer and what that means, but with the consequences of what you-all do to me. It is a constant balancing act for me, as a patient, to try to figure out what my priorities are in terms of those consequences. If I allow this, that could happen. Can I live with that? If I allow that, this other thing could happen. Can I live with that? How does each option potentially impact my status as a cancer victim now and in the future?

Believe it or not, I'm not trying to tell you-all how to do your jobs. I'm trying to tell you what my priorities are, as a patient, and have productive dialogues with you about how I can satisfy all of my treatment priorities given the medical necessities involved *and* the powers/limitations of the tools at your disposal.

When I feel comfortable (1) that we have balanced all of those things in the best way we can, and (2) that we all feel pretty good about the result, and (3) that we are all on the same page and what we agreed upon really is going to happen (which was not the case with my surgery and which is therefore impacting my approach to rads), then I can proceed with treatment.

Most patients just go along like lemmings with whatever is decided for them. Sorry I can't be more like a lemming.

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Wednesday was the day that it all fell apart for me.

I went in to the hospital very early that day in order to take the next step in a small drug administration clinical trial I’m participating in. After that, I had time to float around in the hospital before my appointment with Dr. J later in the afternoon.

As I sat there eating brunch and making some necessary phone calls, I got more and more distraught. In a few hours I was going to have to go downstairs and do, again, the same thing I’ve had to do before at every step in this hospital encounter: I have to double-check my care providers to make sure that they are doing what we agreed they would do. The sadness that this was causing me became almost unbearable.

I had thought I was swimming in safe waters at last. I had thought that Dr. J was going to be different, because I felt as if I had genuinely connected with her, back last August, and because she knows one of my sons. I had thought that surely with those little personal connections, she would live up to our agreement.

But she hadn’t. And that put me back in the position of having to engage in those self-advocacy, self-protective behaviors that my doctors view as questioning their judgment and thus undesirable. I was going to have to go downstairs, I realized, and make yet another care provider not like me so much because I’m speaking up for myself. I became so despondent, it was all I could do not to cry. Barely.

The trouble is, I realized, this is the fourth time this kind of ignoring of my wishes has happened here. The first time was at diagnosis, about whether or not I would accept a mammogram. The second and third times were at surgery, when the anesthesiologist knocked me out against my will and the surgeon allowed a resident to work on me against my will (very possibly with the result that due to his inexperience, “it was decided” that my Level 3 nodes had to go and I am now totally nodeless in my axilla and at greater risk for lymphedema, though the pathology report does not come remotely close to supporting the judgment that “was made” on this question). Now, the fourth time, with this radiation plan with Dr. J that is just not quite what we had agreed would happen.

Even with my medical oncology team, it had been a struggle to get them to actually *listen* to me and *hear* me. Especially Dr. H. I felt I was constantly being benignly patted on the head and the concerns and issues that I raised were being dismissed. It was only by, figuratively speaking, raising my voice that I was able to make myself heard at all. But raising my voice gave me a reputation as “hyper-vigilant” and “difficult.”

The whole experience of getting treatment has been utterly exhausting. And as I sat there, I realized that I was at the breaking point. “I just can’t do this any more,” I kept thinking tearfully. “I’m so tired. I just can’t do this.”

And I wondered, is it just me? How does anyone get THAT unlucky, to have this happen to them so often? Or is this a reflection of The System of cancer care at the hospital? The philosophy of patient management that is extant there? Is the problem me, or it is systemic?

I am perfectly willing to accept some responsibility for how I have handled the situations I’ve encountered. I might have been able to handle them better, more productively. **But I don’t feel that the fact that these situations have happened is my doing.** I didn’t *cause* them to happen. I may have responded better or worse, at different moments, during this sojourn. But I did not cause these events.

Unless you consider having my own active preferences and needs instead of being passive, as causing it all. If you do, then I’m guilty as charged.

With this insight, my motivation to do something that might be productive was increased. It felt like the right thing to do with my disappointment, frustration and exhaustion. So I decided to talk to the oncology chaplain about what might be done to promote systemic change. I thought I could channel my distress in a productive fashion rather than sitting and crying about it, which was what was going to happen if I just sat there.

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Mary expressed surprise when I told her that I felt I’d been labeled as a “difficult patient” because of my commitment to taking an active and vocal part in my treatment for cancer. She said that what she always hears from the physicians around the hospital is that they wish patients would take more of an active role in their care.

So I told her the story of my attempts to emerge from this experience with the cancer vanquished and WITHOUT my doctors having given me another medical condition to have to deal with for the rest of my life, in return. To emerge, truly, as whole as possible at the end.

I told Mary about my agreement with Dr. J on January 15th and how the radiation plan she came up with didn’t quite live up to what we’d agreed upon. I explained that I was very upset at having to question and check up on my doctors, once again, because I had thought that I was finally swimming in safe waters, down in Radiation Oncology. I explained that this was not the first time I’d had such an experience here, and that my efforts to be heard and have my wishes respected, while sometimes successful and sometimes not, had earned me the label of being a “difficult patient.”

Most of all, I said, I was so, so, so unhappy at knowing that in a few hours I had to go downstairs and engage in those same behaviors again, making yet another caregiver unhappy with me. As I talked, I got more and more upset, until I was sobbing.

Mary asked me what I meant, about this not being the first time. And so I gave her the back story, with much attendant sobbing. She just sat there and shook her head. Then she asked me if I would mind telling my story again to someone else. She wanted a couple of the hospital VPs to hear it. I said I’d be happy to tell it again, if it would help to change the hospital system so that others would not have to go through this.

I wound up talking to one VP and another person from Patient Relations (the folks who inform Legal if they think an unhappy patient might be a legal risk, I assume). The administrator, Mr. I, looked very corporate, very controlled, very distant and dispassionate as I began my narrative again. When he whipped out his pocket notepad to take down names, I protested. “No! No! I don’t want to get anyone in trouble. I just want to see what can be done to change the system around here so that others don’t have to endure this.”

Mary promoted me from time to time, as I forgot story elements that I had related to her earlier. She wanted me to tell him about Dr. H, so I did. I told him about how he came across to me as patronizing and dismissive, although I’m sure that his intent was to be reassuring. I told him about the October 19th question about palliative care versus curative care if I have a recurrence, and how Dr. H had looked at the floor and told me that if I get a recurrence it’s Stage IV cancer, and there is no cure for Stage IV cancer. I told him how I knew then that I had to get rid of H as my physician because he didn’t seem like a fighter, and if I get a recurrence I want to fight, not give up and just make myself comfortable until I die.

I tried to finish up by saying that I’d been thinking that it’s not fair for me to focus only on the things that have not gone well here. That there are some things that have gone very right, and I named some, including Dr. H’s having given me his personal cell phone number, his taking the verbal chastisement on Labor Day weekend, how Susan had been so caring when I became neutropenic and had to go into the hospital, J-Rad’s being a constant source of info for me, etc.

As I talked, I could see Mr. I’s body language relaxing slightly. At one point during the narrative I saw that it was getting close to the time when he was supposed to have another meeting he had to go to, and I said that perhaps I’d better stop now, since I knew he had somewhere else to be. He said no, it was OK. He wanted me to continue. And so I did.

And as I talked, I broke down and sobbed again and again. By the end, I was sobbing, saying, “I don’t think I can do this any more. I know I have to. I can’t in good conscience do anything else. I have to take care of myself in the best way I know how. But that means I have to go downstairs in a little while and engage in the same behaviors that have already earned me a reputation as a difficult patient. The same behaviors that have led Susan and Betsy to quit talking to me. I have to question my doctor, check up on her. And I don’t want to do this. I don’t want to do this. I really wish I didn’t have to do this.”

By this time, I thought I saw his eyes welling up and getting a little bit red. He asked me what he could do to help me right now. I mentioned a couple of ideas, including that it ought to be hospital policy that a surgeon cannot pick up anything sharp near a patient unless they have reviewed the signed consent form –– every page of it –– no more than 24 hours before the scheduled procedure.

Then he told me that I need to do what I had been doing. I need to continue to be a pro-active self-advocate. He told me not to stop and that they wished that more patients would take such an active interest in their own care and treatment.

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Mary had asked me if I would like her to go down with me to see Dr. J and review the new treatment plan. I said yes, if she had the time, I would really like that. I felt so raw, emotionally, that her offer felt like someone throwing a life preserver in my direction.

Dr. J came into the exam room with pictures of the new treatment plan in hand. This time it did, in fact, look like it spared all radiation to the axilla (kind of). It’s very clear that the dosimetrist and Dr. J and goodness knows how many others had worked hard to come up with an alternative that would do nearly the same thing as the first plan, but without even so much as any scatter radiation to my axilla.

I began asking questions about Plan B as compared to Plan A. Specifically, I was questioning whether Plan B really did avoid the axillary area. It came down lower on the side of my chest, but it appeared to still be hitting right over the area where Level 1 nodes had been and the capillaries would be trying to re-grow and recover. I asked her if there weren’t any way to avoid that, and she said possibly, but it would require patching together fields in such a way that it would be more difficult to feather the rays in the way you want to do. She indicated that the overlap area between the fields might be actually dangerous and more difficult to manage.

I asked her some more about this, weighing the possibility of doing that as against the Plan B in front of me and wondering about Plan A as compared to Plan B. I was clearly ambivalent and needing to talk more and weigh options. Suddenly she said, "I'm done here. I have to go to a book reading tonight. My friend's husband has written his memoirs and he's having a book reading. You can talk this over with J-Rad if you want." And she left.

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Since I did in fact feel the need to talk this over in more depth, J-Rad was kind enough to come down and talk to me. He showed me what the graphs accompanying the pictures indicated. While there really isn’t much difference between the two plans in terms of the hit to the lungs, there is a significant difference in the hit to the axilla. I told him that I have an absolute priority of sparing the axilla and avoiding acquiring any more lymphedema risk, second only to my absolute priority of getting rid of the cancer.

He looked at my right hand, compared it to my left, and said I should be wearing a pressure glove. I told him very emphatically that I will not do that. I categorically refuse to wear a glove, because my hands are in and out of water all the time on many days and it would be an impossible situation, to be wearing a glove. Wearing the sleeve is bad enough, I said. No gloves. Ever. Period.

He said, when I pressed him, that he thought Plan B was a very good plan, but not quite as good as Plan A because it doesn't cover quite as much surface area of the skin. When I asked him if we could do anything about that, he said we could improve it a bit by adding an electron patch to certain areas.

Then he said something that made me really doubt myself. He said that the Breast Conference that they have at the hospital each week thought we should radiate the axilla, even though I had such a good pathology report, because they think I could be "cured" if I allowed very wide radiation now.

I said that I was unwilling to assume any further lymphedema risk by scarring what is left of my axillary region with radiation, and J-Rad said that I have more nodes in the axilla than the ones that were taken out. He said there are typically around 40-60 in that region, and not all are taken out during a dissection because if they did, you’d swell up like a balloon. This was rather confusing to me, as I thought I’d had a full axillary dissection.

This information made me begin to question, within myself, whether I am being a total idiot for wanting to protect my axilla so as to avoid increasing my risk of lymphedema. Especially if there are still nodes in that area. Although I was node negative by the time of surgery (and apparently not extremely node positive even at diagnosis), if there were other nodes there that were not removed, could cancer have gotten into them?

But lymphedema is a huge quality of life issue for me. Somehow, I just don't accept that it's OK for my treatment for cancer to leave me with lifelong health conditions in exchange. And everyone who has been even *remotely* connected to my treatment knows this. I’m not bashful about making that clear.

Dr. N certainly knew it! And if she had exercised better judgment at surgery (judgment that had been even *remotely* corroborated by the pathology report) and had not taken the Level 3 nodes, maybe I'd feel differently today about radiating the axilla. I would be a bit less at risk for radiation-induced lymphedema, if I still had my Level 3 nodes.

But then again, maybe I wouldn't feel differently? Or maybe I'd say it was OK to radiate Level 3, to give them some added protection beyond what they received in chemo, but not the Level 1 and Level 2 areas, which had already received both chemo and surgery as protection?

I guess it's no never-mind now, though, because Dr. N took those options away from me when she decided that Level 3 nodes needed to go. I have no axillary nodes. At least, I don’t think I do. That area has received two kinds of treatment already (chemo and surgery), and given how good my pathology report was, I am reluctant to expose the area to any more damage from my treatments.

After quite a bit of time talking with J-Rad about the plans and related matters, he got a page to tend to a patient in crisis, so he had to leave.

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Mary and I talked for a bit about the options in front of me. Should I ask for Plan A with more axillary exposure but a bit more skin coverage and possibly a slight treatment boost for the axilla (if there really were any nodes left in there, as J-Rad had suggested)? Or should I ask for Plan B, which has a bit less skin coverage, but that could be improved somewhat by doing the electron patch J-Rad mentioned?

Mary finally left. It was, after all, well past quitting time for her. And I went over to the linear accelerator to go through set-up for the new plan.

As I laid there on that hard table, scarred chest exposed, my right arm reaching back over my head, with the big machine arm whirring overhead, the weight of the decision I was facing became overwhelming. Lying there on the table with the technicians drawing lines on my chest to show me where each radiation field would fall, I began to cry again. And soon it was wracking sobs.

It felt like I was at a turning point at which my future life or death was at stake. Which plan would give me the best chance of survival? Which plan would give me the best quality of life, assuming survival? The need to balance survival against quality of life.

Look at what the Breast Conference thought -- that I should radiate the hell out of myself all over my entire chest and above my collarbone if I wanted to have a real chance at living. Was it really as stark as all that? Did I really have to make a choice, here, between possible life (do Plan A or something even more aggressive) or what was increasingly sounding to me like probable death (do Plan B)?

And what about the question of whether even Plan B was hitting the area where Level 1 nodes had been removed? It looked like both plans hit the axillary area -- only B hit it lower down. If I chose Plan B, was I still going to be getting my axilla hit, but not as much, and at the same time decreasing our chances of success at local control of any cancer cells that might be remaining in my body?

By the time I got up off the table, I was scared, depressed, and angry.

“Why do you have to hurt me?” I asked the poor, innocent techs vehemently, between sobs. “Why are my only options between letting you hurt me one way or letting you hurt me another way? Or die? I reject that!!! I want none of the above. I want life and I don’t want you to hurt me in the process of helping me have life!!! Why can’t you do that for me?!!!!”

I was, truly, ranting and sobbing now. It was the end of a long, hard day. I hadn’t eaten much for several hours and I was very hungry. I was tired beyond belief. And I had a life-or-death decision to make within the next 24 hours, because I was already at least two weeks late for starting rads (through no fault of my own) and we needed to do *something*.

If they had been telling me that they would give me some degree of lymphedema BUT in exchange they would give me 100% certainty that the cancer would never come back, I'd take them up on their offer. In a heartbeat. I’d accept the lymphedema, no questions asked. OK. Well, maybe a few. I am me, after all. But not many! It wouldn’t take me long to decide.

But that's not what they are promising me. They are telling me that they are most likely going to make my arm swelling problems worse to some degree (especially if they hit axilla at all with radiation), and they *think* and *hope* they can kill the cancer and make it never come back...but they aren't really sure. Especially with something like IBC.

What kind of deal is THAT!??!!!

It's like being beat up by the schoolyard bully. You're taking a whippin' every day, he's slowly killing you, and you need help getting away from him. So this other kid comes up to you and tells you that he thinks he can get the bully to quit beating you, but in exchange you have to let *him* beat you up for awhile.

In the long run, his beatings probably won't hurt you as much as the big bully's beatings. They probably won't kill you. But they stand a good chance of leaving you somewhat maimed for life. If you submit to them, though, then *maybe* the bigger bully will quit beating up on you.

Maybe. Maybe not.

There’s at least a 20% chance (maybe 30%) that the bigger bully will come back and whip you to death, anyway. So you could wind up both maimed for whatever life you have left…and dead anyway.

Is it a deal you take?

And how do you feel, when you realize you have to take it? Are you overjoyed that maybe the big bully will leave you alone? Or are you hopeful that the big bully will leave you alone, but angry that the best help you could find is just a bully with less lofty ambitions than your original tormentor? A bully who puts his skills to use in a more altruistic way, true enough...but a bully nevertheless.

Why can't you find a true protector, in all this? Someone who will help you avoid the big bully without resorting to inflicting his own kind of damage?

Between these two issues of having to be my own self-advocate again and having to decide which form of brutalization I was going to choose, I spent most of Wednesday sobbing my heart out.

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Thursday, as I was driving in to town for my day's round of appointments, I just sat in the car and visualized the two pictures of the two treatment plans. I'd focus on one and then focus on the other, trying to determine which "felt" best.

I realized that the problems J-Rad had indicated with the second plan had nothing to do with axilla. It had to do with coverage of the skin surface. Worries about the axilla were not really on his radar, despite what the Breast Conference had recommended. J-Rad had told me, a couple of weeks ago, that he didn't think it was necessary to radiate the axilla, just as Dr. J had said that same thing to me on January 15th. So why was I worrying about that all over again, I wondered?

I realized I was doing so because J-Rad had brought up the Breast Conference's opinion that I should have axillary radiation now, too. I was second-guessing myself. Which I've been told I should not do, when it comes to my cancer treatment.

So I put that issue in the back of my mind and asked myself what the difference was between the two plans other than axillary coverage. One plan (Plan A) covered a little more skin surface and in doing so tangentially hit a bunch of axillary area. The second plan (Plan B) covers a bit less skin surface area but misses the axilla better. J-Rad had suggested an electron patch to cover a bit more of the skin surface in Plan B -- skin surface that is doesn't cover places where axillary nodes used to be. Adding that would make the second plan just a bit better. Perhaps not as good as the first one, in terms of skin coverage. But still better.

I realized that despite the patch idea, J-Rad was not as happy with Plan B. Why? Because killing the cancer is his only focus. Period. All other considerations- -- and I do mean *ALL* others -- take a far distant second to that. He doesn't seem to appreciate that for the patient, those secondary considerations may not be nearly as far distant. Considering that my priority of saving my axilla as much as possible (to try to avoid increased lymphedema risk) was much more important, it was clear to me that the second plan, with the tweak J-Rad suggested, was the way to go.

I had found peace.

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I had a chance to talk to my lymphedema specialist later that morning and show her the treatment field lines that the rad techs had drawn on me the previous day. She confirmed that the line of Plan A would have hit the axillary area, whereas the line for Plan B did not. I hadn’t been sure about that, but she reassured me that there was no axillary hit. I felt reassured on that score, and more comfortable with Plan B.

Then I spoke with Dr. S, who is a radiation oncologist. She had some other kind of cancer a number of years ago and was treated successfully for it. It never came back. However, the treatments gave her another primary cancer: breast cancer. And her treatment for that didn’t work; it came back, and she is now a Stage IV breast cancer patient. Dr. S knows her way around the human body and the medical field, and she has the added benefit of the tempering of values and judgment that being a cancer patient, yourself, can provide.

I told her my status: IBC, four nodes positive at diagnosis, 0/22 nodes positive upon surgery. Full axillary dissection. They want to radiate the axilla.

I didn’t even get a chance to ask my question.

“If you were node negative, you don’t have to radiate the axilla,” she interrupted me.

“I don’t?” I asked, incredulous that she so quickly volunteered the very info I was going to ask her for.

“No,” she said. “Some doctors seem to think that you do, just to be safe. There’s a real push to radiate more rather than less, especially since XX took over in Radiation Oncology. But there is no scientific evidence that radiating node negative patients provides any survival benefit. And as I’ve said before, I’m data driven. If there were any evidence that it helps, I’d say go for it. Without that evidence, radiating the axilla in node negative people only increases their other health risks.”

“You need a hug for that!” I said, trying to restrain more water-works. And I did. Hug her, that is.

I finally felt really, really at peace with my decision. Plan B it is.

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When I went in for my first radiation treatment later that day, Dr. J wasn’t there. She was out of the clinic. I had questions, one more time, so J-Rad and his nurse, Nancy, came down to talk to me. J-Rad sounded, that day, as if he thought that Plan B was inferior not only because it covers less skin area but also because it doesn’t hit any axillary area. (Which is not the position he’s taken from weeks ago, when I asked him via email about hitting the axilla.)

He explained that we don’t know that the cancer that was in the nodes, at first, didn’t break out of the nodes and into some of the surrounding tissue, where it could be lurking today. Given my node status at the time of surgery and my excellent response to chemo, he said, he didn’t think that had happened. But it might have.

And once again, my conviction began to waver. He indicated that if it were his wife, he would choose Plan A, or even something more.

But once I said that I wanted Plan B, both he and Nancy said that this was a fine choice and the one thing I cannot do is ever look back. I have to make my decision, and move forward.

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As of today, I have taken two radiation treatments. When I got up off the table after the first one, within half an hour I could feel the electron field burning (one electron field, three photon fields) and my skin felt hotter to the touch there than elsewhere on my chest – even hotter than in the fields targeted by photons. That lasted for about 2-3 hours.

Also within half an hour I could feel my bronchi clogging up with phlegm. I needed to clear my throat and try to cough up what was forming down there. That, too, dissipated within about 2 hours.

Before my treatment today, I asked to speak to a nurse about these reactions, and I got Nancy. She said that the burning was not necessarily unusual, even this quickly, and told me to come see her after I had my treatment and she’d give me something to put on my skin. When I asked her about the phlegm in my bronchi, she just shrugged and said that wasn’t caused by the radiation.

Yet when I finished my second treatment, today, I had the same reactions. While the bronchial thing seems to have pretty much resolved itself, the burning and warmth of the skin is starting to stay with me. I anticipate that as treatment progresses, the bronchial stuff may not resolve so quickly, just as the skin stuff is not resolving. But I can hope….

The truth is, though, if I’m experiencing burning sensations at this early point in the process, radiation could turn out to be the hardest part of my cancer treatment. It feels kind of like getting a little sunburn, feeling your skin prickle, and thinking, “Oh, I need to stay out the sun for awhile and let this burn heal up.”

Except that I have to do just the opposite. I have to go in every weekday for the next six weeks and let them burn me again. And again. And again.

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I decided on Thursday not to do the bisphosphonate study. They wanted me to start the trial within 5 days of when I signed up. I have a possible filling to get in, plus a probable root canal and crown. Needless to say, given the risk of ONJ, I wanted to get that work done before I started the drug. But that wasn’t going to happen in such a short time frame.

Plus, I want to only do one thing to my body at a time, as far as treatment goes, unless the treatment itself calls for simultaneous interventions. Taking a bisphos that will do something to my bones at the same time that I am undergoing radiation that is no doubt going to have an effect on my bones…just doesn’t seem smart to me. And the trial would not wait for me to complete radiation.

So I decided not to participate. I can try to take the drug at my own time, under my own control, if I want. I’m not sure how I’ll pay for it, but hopefully I’ll figure something out.

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I had an interesting encounter with the head oncology nurse. On Wednesday I was up in Hematology-Oncology getting my port flushed, and she was the one who finally ushered me into the clinic and got me set up with a nurse who could do it. She seemed genuinely pleased to see me. Stopped and chatted with me. Asked me how I was doing.

I said that I was physically fine. I was eating, I said with a smile. She didn’t seem to remember the allusion, so I reminded her about the whole fasting before chemo thing with the first infusion and how she had called me on that before my second infusion. She smiled and nodded then, remembering.

Thursday, while I was at the hospital talking to the bisphos study coordinator, she came out of Hematology-Oncology and saw us sitting there talking in the waiting area and commented that “There’s my favorite patient!”

Maybe she says that to all her patients? I don’t know. I was surprised at her reaction, though. She gives every appearance of not only knowing who I am, but liking and approving of me. It doesn’t come across as a polite, professional acknowledgement of my continued existence -- as in, I have not succumbed to cancer yet, and that pleases her. It feels more like a genuine recognition of me and who I am.

Kind of like Dr. Z?

I wonder. Dare I think that just as she knew about my fasting for my first chemo not because she had read my chart, but because of the office grapevine, she knows via the office grapevine about other things I do, including my “difficult patient” behaviors? And that she finds them not “difficult” but more along the lines of what she wishes other patients would do? Does she find me interesting and memorable precisely *because* I stand up for myself and speak out and don’t just go along, lemming-like, with the herd, doing whatever the doctor says without voicing my thoughts or opinions?

Dare I hope that there is another medical professional there who truly approves of me?

I guess it doesn’t matter, in the end, as long as I get the treatment I need. But it is nice to be liked and approved of, rather than merely handled or tolerated because it’s the professional thing to do.

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The thought occurred to me today that my good friend J-Rad is very much a man after Dr. H’s own heart. As with H, I like J-Rad. I like him a lot. He’s been a life-saver for me in so many ways. Before Dr. J left me on Wednesday, she said that if I wanted to transfer my care to J-Rad because I felt more comfortable with him, she would not be offended. But I don’t think I could or should ever try to make him my radiation oncologist.

Mary heard Dr. J make the comment, but I told her, later, that I didn’t want to do that because all of my doctors hurt me. That’s what they do, in the name of trying to help me. They hurt me. It’s their business to hurt me. But J-Rad is a friend and a resource for me when I need to understand things. I don’t want to change the nature of that relationship. I want him to be a resource, not one of the people who hurts me.

I realized today, though, that there is another reason, too. And that reason is, his approach to patient empowerment is pretty much the same as Dr. H’s. Why would I want to bring more of that into my life?

When we spoke on Wednesday, after Dr. J had left, I told J-Rad that I just didn’t know what to do, any more. I was so tired. He winked at me and said that I did have an option, and that is to just trust my doctors to do the right thing, for me to do what they say and quit questioning things, quit taking so much responsibility upon myself for my treatment. And he once again used the analogy of an airplane, which is an analogy he’s used before in our email correspondence.

The doctors are like airplane pilots, he says. When I get on an airplane, I don’t presume to tell the pilots how to fly it. Similarly, when I take cancer treatment, I shouldn’t presume to tell the doctors how I want to be treated or question their proposals or ask them to change what they’re doing. That is not my responsibility.

This is just the “After all, Dr. H is the captain of this ship” argument in another guise.

The way J-Rad sees it, getting cancer treatment is like buying an airplane ticket to go to Detroit. You trust the professionals — the pilots — to know how to fly the plane and get you where you need to go. Your job is to board the plane, sit down, and let them do their job. Don’t try to tell them how to fly the plane, because you can’t possibly become an expert in plane-flying in a short period of time, and they are specially trained to do so and have years of experience under their belts.

The way I see it, getting cancer treatment is like me hiring a pilot to fly me to Detroit –– not like buying a commercial ticket. After all, cancer treatment is supposed to be an individually tailored thing, not something that is administered en masse, like a trip to Detroit on a commercial jet.

When I get cancer treatment, I’m hiring a very skilled professional, like a pilot, to take me somewhere. I have to tell him what my priorities are for the trip – not just that I want to take a trip. So I tell him to fly me to Detroit, but I absolutely must stop in Cincinnati along the way because I have business to conduct there. If I don't stop there, I may lose my house (for instance), and it is important for me not to take that risk. As we talk, I may decide that I want to take one route over another route. I may not want to fly in one kind of aircraft, but may prefer another. (Maybe I’ve read reports on the Internet from the National Transportation Safety Board saying that one kind of aircraft has an unusually high mechanical failure rate, leading to crashes and near-crashes.)

The pilot and I discuss all of this, pre-flight. We both agree that this can be done. He agrees that he will do it. And then we board the plane.

I don’t tell him how fast to go to achieve take-off, when to raise or lower the flaps on the plane, when to bank left or right. I assume that, having made my wishes known, he has the expertise to attend to those details of the job and the integrity to live up to our agreement. That’s all I need to know, as a passenger.

So how do I feel if he flies straight to Detroit, anyway, because he thought it was really best to do that?

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J-Rad told me on Thursday that “You have these reactions as every new phase of your treatment begins,” referring to my melt-down on Wednesday, I presume.

This makes it sound like the entire problem with the situation is me. It’s my difficulty adjusting to my cancer diagnosis and my treatment.

I have been saddened to realize that there is no recognition from him that a more fundamental problem *IS* the cancer treatment, itself, and that a good share of my “difficulty adjusting” has to do not with my own psychological peccadilloes but with the brutal world of cancer and its treatment into which I’ve been thrust.

In other words, it’s not *ALL* just inside my noggin’!

If adjusting and NOT having difficulty means losing touch with the reality that modern cancer treatment is brutal, if it means welcoming that brutality into my body without even so much as a whimper of outrage that it must be so…then I hope I never “adjust.”

It makes me both sad and frustrated to know that J-Rad, my friend and my helper, sees the problem as lying totally with me.

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The following is from another of my IBC sisters whom I’ve met on the IBC listserv. We were talking about radiation therapy and how it’s going (three of us on the listserv are currently in rads at about the same time together). What she said, here, struck me as very profound.

“I was thinking about something I have read in several books –– all of our emotions come from either love or fear. Fear of course, gives life to negative emotions. I guess like all of us IBC'ers I am afraid. Of dying, of never having a semblance of a normal life again, of not making it to NED, of making it to NED and not knowing how to live my life without my job etc.

“It has been an overwhelming adjustment for me, and for all of us. I guess the amazing thing is that we continue to fight, adjust (screaming and kicking sometimes) and move forward.”