2-28-10 Update – Consenting is Process, Not a Single Act

It’s been a long time since I’ve blogged, I know. I’ve begun getting inquiries from friends and family, who haven’t heard from me in awhile. Part of the reason for my silence is that I’m just so busy, going to treatment every day, now. Radiation therapy is very, very busy work. Another part of the reason is my increasing need to focus on my grievance hearing regarding being laid off at the University. But probably the biggest reason is that it’s just so hard to know where to start, in telling about what’s been happening….

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I began to see wrinkles on the back of my right hand about a week and a half or two weeks ago. Now, for most people that would not necessarily be a reason to celebrate. In my case, however, it was great good news. :) It meant that the slight edema in my right hand, which went along with the slight edema in my right arm, was decreasing.

All in all, I’m doing well on the lymphedema front. I wear my compression sleeve religiously. I do manual lymph drainage once a day –– and again after I’ve been doing any kind of physical activity that involves a lot of use of the right arm. I get a professional (much more thorough) manual lymph massage once a week.

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My skin is holding up well to radiation therapy. I do little stretching exercises throughout the day to try to keep the skin on my chest supple and free of adhesions to my chest wall. And I slather on a cream called “Self Heal” after each treatment and a couple of other times each day, to try to help the skin endure what it’s being subjected to. I’m also taking a new supplement regimen designed to support radiation therapy and support my body as it struggles to heal itself after each assault from the radiation.

Dr. J, my radiation oncologist, told me when I saw her on February 22nd that my skin was looking good and not getting very red due to my treatments.

“That’s because I’m fighting you every step of the way!” I said, and she just smiled. “I attribute it to my magic cream and a naturally strong constitution. You fry me, and after each treatment I go into the changing room and slather on my magic cream!”

She said she thought we’d increase the dosage to the skin by using a bolus every day for treatment from here on out, rather than just 2 out of 3 days. Since IBC tends to come back in the skin, especially along the scar line, she feels that it’s hard to over-treat the skin, if a patient’s skin can withstand it.

I told her to go ahead and do it, if that’s what she feels needs to be done. As long as it doesn’t change the treatment fields (meaning changing the hit to the axilla) or increase the hit to my increasingly damaged right lung (keep reading), she should do whatever she feels is necessary.

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My thanks to everyone for their suggestions for my special CD that I burned to listen to while I’m getting burned. My “Burn” burn. I’m actually in the treatment room for just a few minutes each day, so didn’t have room for too many songs on the CD. This is what I wound up with:

(Come On, Baby) Light My Fire – The Doors

Ring of Fire – Johnny Cash

Do That To Me One More Time (Once Is Never Enough) – Captain & Tennille

[in recognition of the daily nature of rad therapy]

Burning Love – Elvis Presley

Disco Inferno – Tina Turner

Hot, Hot, Hot – Buster Poindexter

Winning – Santana

[The chorus goes, “I’m winning, I’m winning, I’m winning, and I don’t intend on

losing again…,” which seems very hopeful and inspirational.]

Most of the time all of this is too long. I don’t get to hear every cut. I’m not on the table long enough.

Some days I haven’t wanted to listen to it. I haven’t been in a psychological place where I could try to have a little fun with what I have been going through. Some days, it’s all I can do to show up and do this to myself one more time….

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There is one big difference between radiation therapy (RT) and chemotherapy (CT), I have realized. With CT, you are told that there are usually short-term, transient side effects (like nausea) that can be managed with proper medications. You are also told that there *may* be long-term side effects.

As a patient, you have the option to engage in behaviors now and for the rest of your life that may help to reduce your risk of acquiring those long-term side effects. Like improving your diet, taking nutritional supplements designed to support those body systems most at risk for the long-term effects, wearing a compression sleeve, doing manual lymph drainage, etc.

For breast cancer patients taking RT, you are told that there are a few short-term side effects that can usually be successfully managed, like burning and blistering of the skin where you’re getting your treatments.

But more importantly, there *are* long-term, permanent side effects that cannot be managed or avoided. There *is* permanent damage that will be done to healthy parts of you –– to healthy tissue. There is no avoiding it.

You are quickly reassured that this damage is not likely to be noticeable or to have any real impact on your day-to-day functioning either now or in the future. But it is there. The damage is most assuredly there as a consequence of your having had RT. And when pressed, they reluctantly admit that there is a tiny chance that it could affect your functioning at some time in the future.

This damage is “frying a tiny rind” of my lung amounting to about 10% of my lung capacity. That’s how they described it to me. Very much minimizing the fact that we are permanently damaging healthy tissue. Minimizing how much is getting damaged. Just a “rind” that amounts to about 10% of my lung. I’ll never miss it.

No prob, right?

Well, come to find out, after multiple talks during the last 3 weeks with my radiation oncologist (Dr. J), my rad onc friend (J-Rad), the head of Radiation Oncology at my hospital (Dr. L) and the radiation physicist who helped design my treatment plan (“Caitlyn”), that rind is not really like an orange rind. It’s more like a watermelon rind.

And it’s not 10% of my “lung” (singular) capacity. It’s 10% of the capacity of both lungs combined. For my right lung alone, which is the one being incidentally hit by the radiation meant for my chest wall and the lymph nodes in my chest and above my collarbone, the amount of lung being scarred and rendered permanently useless is something like 20-23%. That’s 1/5 to 1/4 of my right lung that will never again be available for me to breathe with.

It’s taken me a long time to become at all comfortable with what I’m doing to myself –– what I’m letting them do to me –– every day. It’s a big reason for my silence on this blog site. I’ve been so overwhelmed with anger and grief about this.

I wasn’t wrong, when I had my melt-down before I began RT. With RT, you *do* have to agree to let them hurt you. Not just temporarily, to try to get the cancer under control, but permanently. And you hope that you’ll never actually *experience* the functional fallout from the damage that they will do.

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During my entire cancer treatment, I have labored under the feeling that I ought to be able to be treated for this cancer and emerge on the other side healthy and whole, restored to the health status I enjoyed before I got sick.

But that is not what cancer treatment does.

Cancer treatment promises to *try* to save my life. In exchange for that, I agree to give up being healthy and whole any more. I agree to never be as I once was, but to accept some degree of diminishment of my over-all health status, the exact degree of which cannot be known in advance.

I lose body parts. I take on permanent health risks (lymphedema, congestive heart failure, secondary cancers). And I permanently damage healthy tissues and render them inoperable (whole chunks of my lungs).

And somehow, I’m supposed to be OK with this.

The truth is, though, that I’m not OK with this. Not at all.

But I’m also not OK with dying. And that seems to be the deal. It’s this, or die for sure.

And I may die of this anyway, in the end.

It’s a Faustian bargain you strike, when you enter into cancer treatment. But nobody explains it to you like this up front. You have to come to that realization on your own.

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As has so often been the case in my cancer treatment, the worst thing about discovering the fuller truth about what rads are doing to my body is (A) that I had to “discover” it by bits and pieces, at all, and (B) that my care team is so blithely unconcerned about what they are doing to me.

My cancer care team is so accustomed to accepting the risks of cancer treatment as foregone conclusions –– pesky but necessary impediments to the goal of killing the cancer –– that they fail to even *see* those risks for what they are from a patient’s point of view. They thus tend to underplay them, leaving the cancer patient to press for more information and the fuller understanding that comes when you get that “more.”

The total and complete focus of the care providers in Cancer Land is on killing the cancer. The impact of their treatments on the patient’s short-term and long-term quality of life…well, that’s something that occupies a lot less of their immediate attention. In fact, they are so focused on killing the cancer that they have long ago ceased to be horrified by what killing the cancer does to the patient (if they ever were, being non-patients). And they are nonplussed by patients like myself who have trouble accepting those risks so blithely and who voice their concerns so pointedly.

Because of this, I *never* walk into the Cancer Hospital and feel safe. I never feel protected. I never feel secure. I feel ignored, to one degree or another. Not on the same wavelength with those who are trying to help me, to one degree or another. I always feel assaulted, to one degree or another.

It’s an assault that is delivered with the best of intentions. It’s an assault that I must submit to, or risk dying of this cancer. But just because I submit, it doesn’t mean I *won’t* die of cancer. It only means that I *might not*.

If they could 99% guarantee me that I would never see this cancer again if I let them give me some of these long-term health conditions, I would probably take them up on most of them and consider it a bargain.

But they can’t make this guarantee. They know this, and I know it.

I remain horrified by this bargain I must strike in order to try to live; they remain pretty largely unperturbed by it. **Their inability to be horrified along with me, even for a few moments when I come in for treatment, horrifies me even more. It makes everything so much worse.**
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I would be much more reassured, and would feel much safer in the Cancer Hospital, if they were a little less upbeat and excited about what they have to offer me in the way of treatment, and a little more humble about it, given its limitations and its risks. Instead, as a patient, you get bright-sided by them.

“Bright-sided” is a term invented by Barbara Ehrenreich, who has written a book by that name about the cult of positive thinking in America. She had breast cancer, herself, and found the “positive attitude” = survival idea to be a lot of bull excrement. It may make you easier for others to be around, but it does nothing to improve your chances of surviving cancer.

It strikes me that doctors’ (and other cancer caregivers’) insistence on downplaying the risks of their treatments and emphasizing only what they hope the treatments can do to help you, is a professionalized form of bright-siding. It’s something that you are hit with on your very first day after diagnosis, and it remains the theme of all patient contacts after that:

“Yes, you have a deadly disease. But we can help you. You’ll take chemo, then have surgery (sorry, you have to have a mastectomy; no options, in your case), then you’ll have radiation. After that, you’ll be on hormones for five years. We know this will be tough, but we’re all here to help you.”

Maybe it’s what they need to say and do, for their own sakes, in order to administer these harsh treatments to people every day. They need to look waaaayyyy past the negative health impacts that their treatments are having *and will continue to have* on the people they are trying to help, and focus only on the good they hope the treatments will do.

But for me, their inability to join me in horror –– daily, if need be, for as long as it takes –– until I have walked through that place of horror and come to a place of acceptance that I can then share with them…that is a real limiting factor in my health care.

Instead, they wait for me in a place of acceptance. They are not very good at coming out of that place and getting me, then being fully with me where I am in horror at what they are doing to me, and gently walking with me on the journey through horror until I get to a place of peace.

When they do recognize that the patient is living in horror, they make a second-level bright-siding mistake. They say it’s because “patient is having a hard time adjusting to her diagnosis.” They utterly fail to distinguish between horror at having cancer, and horror at the cancer treatments and what they do to your body –– all for the chance, just a chance, mind you, that you won’t die of the cancer.

Which shows that they just don’t get it. Not from a patient’s point of view. They think they do…but they don’t.

What I should have heard on Day One and throughout my cancer treatment experience, over and over again from every health provider, is this:

“Yes, you have a deadly disease. If you do not get treatment for it, you will die from it before very long. But we are here to help you. We want you to take chemo, then have surgery (sorry, you have to have a mastectomy; no options, in your case), then you’ll have radiation. After that, you’ll be on hormones for five years.

“These treatments are the very best we have for your kind of cancer. Unfortunately, they will cost you. Not just in terms of dollars, but in terms of your long-term health status, because these treatments have side effects and some of them are long-term and permanent. **We can help you fight and possibly defeat this cancer, but we cannot return you to the health status that you enjoyed before you got this.**

“We will work together with you to try to mitigate these side effects, where possible. In many cases, it is possible. In some cases, it just won’t be possible. We wish it were otherwise, but it’s not. It’s the state of modern cancer treatment today.

“All this said, we’re really pleased that we have something to offer you that will hopefully defeat the cancer. We can discuss the details of all of this in your later visits with us. In fact, we will discuss this again and again over the coming weeks and months.

“In the meantime, please know that these next few months will be tough for you, but we’re all here to help you get through it. When you emerge on the other side, you won’t be the same person. You won’t have quite the same health status that you used to have; you probably will be subtly different in psychological and emotional ways, too. But we have reason to believe that you will not have cancer any more and you will have a long and productive life ahead of you. And we’re really pleased about that.”

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I have to remind myself, as a consolation (small though it is), that I go to the hospital to get treatment, not understanding. Except for those rare individuals, most of whom are those whose job it is to understand me, like the oncology psychiatrist or the oncology chaplain, I seldom feel that I am connecting completely and genuinely with most of the care providers at the hospital. Though they are very nice people, they seem to understand (much less appreciate) my point of view not one bit. And I cannot join them in “Happy About Cancer Treatment Land,” either.

I’m told that this is different among physicians who have undergone serious cancer treatment, themselves. However, I have never met any of those physicians, except for Dr. S, who has Stage IV breast cancer that was caused by (successful) treatments she had for another kind of cancer several years ago. And I don’t know how she feels about all of this. She’s never spoken about it, and I don’t know her well enough to pry.

I go to the Cancer Hospital to get treatment for the cancer, not understanding of the person who has the cancer. Sad. But true, I guess.

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Still, I have gotten tired of not seeing myself fully reflected in the clinic notes that my caregivers write about me. I have gotten tired of always hearing them talk so lightly about side-effects, as if they didn’t really matter much. Of always hearing them elide the impact that their treatments are going to have on whatever is left of my life.

So I asked them to insert something into my chart. To insert *me* into my chart:
“I would very much appreciate your inserting this in the clinic notes that you write up,” I wrote to them not long ago.

“Call this the patient's statement of her concerns, unfiltered by your own interpretations, however experienced and knowledgeable those interpretations may be:

“’We are doing known, for-sure, permanent damage to healthy tissue. My other treatments have done *possible* permanent damage to healthy tissues—and because of this, I could take steps to try to minimize the chances of that occurring. That gave me some sense, however small, of having some measure of control over what was happening to me.

“’In the case of RT, we are doing known, certain, permanent damage to healthy tissue. And there appears to be nothing I can do to minimize its occurring. I am totally out of control, here. Yet I must submit or risk dying.

“’At the core of my psyche, at the seat of my soul, I am profoundly, profoundly uncomfortable about doing this. All of cancer treatment is a Faustian bargain –– and none of it more than radiotherapy.’”

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Fifty years ago I was at death's door. Medical science gave me life, and gave it to me in such a way that for the following 50 years I had exactly zero after-effects to deal with. I emerged on the other side, healthy and whole.

Now I am at death's door and medical science is attempting to give me life, but is giving it to me in such a way that for however many years I have left to live, I will have to deal with the after-effects of the treatments they are giving me. I may emerge on the other side, but I will never be healthy and whole again. That ship has sailed. And I am not unhealthy and unwhole because of the cancer, but because of the cancer treatments I had to take to deal with the cancer.

Somehow, I'm supposed to be OK with this rather than thinking that it is wrong, wrong, wrong.

It is a necessary evil…but that does not make it any less an evil.

My point is that I don’t want to eschew treatment. I want treatment. I want life. AND I want no secondary health issues because of my treatments.

This does not seem like an unreasonable expectation, on my part. It may be something that modern medical science cannot yet give me. But that doesn’t mean that my expectation is therefore unreasonable.

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I am now 22 days into my 30 days of radiation treatment.

A day or so after I began RT, I started going to the hospital’s meditation room to listen to a radiation support CD before going downstairs to Radiation Oncology for my treatments. What I heard, the first day I listened to the CD, rather surprised me.

Right after the first of the New Year, I bought a hat. It’s a black cap with tucks and gathers in it, and with silvery, prismatic sequins glued all over it. When I’m in any kind of light, my head sparkles all over and lights up with the colors of the rainbow. It’s kinda funky. I wear it everywhere, and I get compliments on it wherever I go. (Except from my son and daughter-in-law, who said they thought it made me look like I ought to be getting out of the back seat of a clown car!) Anyway, for weeks when people compliment me on my hat, I’ve been thanking them and saying it makes me feel all sparkly.

Well, when I sat down to listen to the CD, that first day, I was quite surprised to hear the voice suggest that I imagine the radiation as sparkling energy showering down all around me, making me whole and healthy again. I took it as a good omen. (But I admit that I’m having a lot of trouble believing in the high expectations suggested by that omen.)

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Five days a week, my life is shaped by going to the hospital to receive RT. Because you go in so often, they have curbside parking for RT patients. You can’t go in and park and be at the hospital for hours, with the parking pass. But you can be there long enough to do some meditation, have your treatment, and meet with someone afterward for a check-in or, in my case, for ongoing patient education…the latter given with greater or lesser enthusiasm (keep reading).

After I’ve done my meditation, I go downstairs and automatically check in (thereby signing in to be billed for each visit!) by swiping my hospital patient ID card past a little scanner. It beeps, and I move on through the larger lobby, where other patients are waiting, and go directly to the women’s changing area. I strip off everything above the waist and put on a hospital gown. Locking my purse and my clothes in a locker, I then wrap my coat around me (for warmth!) and go sit in the smaller women’s waiting room just outside the treatment rooms.

Most of the time the radiation techs are more or less on schedule. Some evenings they’ve run as much as an hour or more late, so you sit and wait. There’s the ubiquitous TV there in the waiting room, so you can slouch down in the chair and watch the local news or a Cheers re-run, or take a little snooze, or chat with the other women waiting for their turn on one of the three linear accelerators.

I’m on Linac 1. Another “Brenda” who gets her rads at about the same time of day as me is on Linac 2. At first I was a little worried that they might get their Brenda’s confused and wind up giving me the wrong treatment, but that’s really not likely. There are three computer monitors mounted high on the walls in the treatment rooms, and one of those three has information (too small for me to read) plus my photograph on it. So I know they’ve got my data up and running.

When they’re ready for you, they come and escort you to the treatment room. I give them my “Burn” CD to put into their player, take my coat off (brrrr!!!), undo the tie on my hospital gown, slip my right arm out of the gown, and lie down on a sheet covering that hard, hard table. Then I reach up and grope around for the handle to the right above my head and hold on for dear life for the next 15-20 minutes.

Putting my arm up over my head is not a problem now, thanks to weeks of twice daily exercises and the treatments of my lymph nymph, Val, but I found at first that keeping it in that position for that long was making my arm hurt. I worried that despite our best efforts, we were frying the axilla and that was what was causing the ache. But as the days passed my endurance grew and the ache subsided.

After you’re lying in approximately the right position, they do the rest of the positioning by tugging on the sheet to nudge you this way and that. Your job is to lie perfectly still and not help them. Just let them do it. They draw little cross-hatch marks on your skin, using the dot tattoos to guide them, and in some way they seem to be lining up these marks on my body with some marks shining down from the overhead arm of the linac and from laser lights shining across the room. It’s the way they make sure that I’m lying in pretty much the same position every time I get a treatment and that the treatment goes to pretty much the same areas every time.

The linac itself is shaped like a giant U that rotates around you, with your head in the bowl of the U. Where the arms of the U are in relation to your body depends on the angle they need in order to deliver your dose of rads.

The aperture on one arm of the linac, through which the beams come, is a kind of screen (behind thick glass) composed of many tiny metal fingers that come from each side and converge in the middle. These fingers are pulled back to one side or pushed forward to create the various treatment field shapes that they need for your particular treatment. During the treatment to any given field, the radiation beam may be on, go off while the fingers re-arrange themselves, then go on again. The actual time that the beam is on, for each field, is less than a minute.

I have four treatment fields –– two to the chest wall (with photons), one to the supra-clavicular nodes (with photons), and one to the internal mammary nodes just underneath the sternum (with electrons). This means that the rad techs come into the treatment room, dim the room lights so they can see the laser line-up lights and the linac lights, line me and the linac arm up with one another for the next treatment field to be administered, leave the room and take refuge in the safety of their concrete-protected bunker outside, turn up the room lights so they can see me on their monitors, and then zap me. The lights go down as they enter the room again, and we do it all over.

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Arriving at a treatment plan for me, as you will recall, has not been without some challenges. I questioned the conventional way of doing things, which was very hard for me to do. But the result was that I got an alternative that no one had ever thought of doing, before. One that really does spare the axilla from any significant hit.

When I saw Dr. J the first time after all of this had been settled, she was cool, distant, didn’t make much eye contact. She breezed into the room, began studying my treatment notes on the computer, and said that she didn’t have time for many questions. I told her that I didn’t have many. Just four. And one of those was simply a note to say thanks for everyone re-working my treatment plan. She smiled slightly and nodded, but that was it. Didn’t break her gaze from the computer.

I told her that I had asked J-Rad about the quality of the second plan as compared to the original one and what he thought would make it better. He had told me that he’d like it better if there were a little patch added to the electron field, to treat an area of skin that was not being hit. Since IBC tends to travel through the skin, hitting as much of it as possible with radiation seemed prudent, to him.

She responded, while still studying the computer screen, that she thought I should see someone else. I ignored her. Instead, I just showed her the picture that showed where J-Rad had suggested adding the patch. I said that I would leave the decision about doing it up to her, but I just wanted to mention it, as I had promised J-Rad that I would. She said it didn’t seem unreasonable. I asked to see the pictures of what the adjusted treatment field will look like, if she does decide to do it.

We talked about a few other things, but her attitude and her comment made me wonder if I’d offended her. As she was leaving, I said that I wanted to explain that I talk to J-Rad as a friend and have been talking to him, learning from him, sometimes arguing with him, since before I was diagnosed. With her hand on the door, looking at her reflection in the mirror on the wall behind the door, she said that J-Rad and she are old buds.

And then she left.

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I thought about it. Dr. J has a reputation for being a “straight shooter,” so I decided to shoot just as straight with her. I asked her point-blank in an email if she wanted me to transfer my care. I said that I would prefer not to, as I had thought from the first time I met her that I could work with her. I had liked the fact that she admitted that the side effects from her multiple sclerosis treatments are not leaving her with secondary health conditions to battle for the rest of her life, like my cancer treatments are leaving me with. From that moment, I said, I had felt that she understood me, appreciated where I was coming from, and that I would be able to work with her.

But if she was not comfortable treating me, I said, I would transfer my care. I would not leave the hospital, I said, but I would not choose J-Rad to provide that care, either, as he is a friend and I do not want to change the nature of our relationship. Instead, I would transfer to another provider in the hospital if she wished.

She said no, that she had just been having a bad day that day.

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Later I spoke with Louise, one of the patient advocates at the hospital. She said that to her knowledge no physicians at UNC have ever expressed the desire that I move my care elsewhere, but there has been a question about why I don’t go somewhere else if I’m not happy at UNC.

She asked me what had prompted the question. I told her about Dr. C suggesting I see Dr. M, before I had my surgery, and then being so pleased when I reported that I really liked how he handled our consult. She asked if I’d be moving my care to him, then, and I said no, I was staying at this hospital. Then I told Louise about Dr. J saying that she thinks I should see someone else.

Louise said that as far as Dr. C’s reaction goes, people at UNC are not very territorial. They realize that there may be a better fit between one doctor and patient and another doctor and that same patient. It happens, and that’s OK.

It’s what she said next really hit me between the eyes.

She said that sometimes patients come in with preferences for the doctors they want to work with, because they’ve gotten referrals to them, and that’s OK. If patients don’t come in with preferences, she said, they are assigned to physicians depending on whose case load needs to be filled.

My ears perked up at this. I said that I think this is what happened to me.

I told her that I was not allowed to choose my oncologist when I came in. I was assigned to Dr. H and when I expressed a preference for Dr. C or another doctor, based on recommendations from friends, I was told that neither of them were taking new patients. I was forced to take Dr. H, and I’d always thought it was because he was so new here, then, and they were trying to fill up his case load.

She just nodded.

But, I said, Dr. H was obviously not a good fit. I said that I like him, personally. That he is a sweet man. She smiled and nodded again. But professionally we don’t work well as doctor and patient. And I was never given a choice. I should have been. But I was not.

I admitted that even if I’d had a choice, some of the things that happened would not have changed, because I brought a certain amount of baggage into this experience. It’s not like I think that if I had been allowed to choose my oncologist from the outset, my trip through cancer treatment would have been a walk in the park. But some things, at least, would not have been so difficult. Some things would have been different.

She seemed to agree with me.

I noted that Louise had nothing to say about Dr. J’s comment to me.

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In the midst of all this, I got a pleasant call from “Denise,” Dr. C’s nurse navigator. She said she was filling out paperwork for prescription drug financial assistance for another patient today and she wondered if I’d approached these people, myself, since she’s filled out one set of paperwork for me already.

I said that yes, I had heard of them and had contacted them, but I’d have to consult my notes to see what the result of that conversation had been. I said that I’ve got half a dozen other applications for assistance that I’m filling out, and she will no doubt get more of them to do for me.

She laughed and said that’s OK, that’s why she gets paid the big bucks. I chuckled and said, “I’ll bet you do” in a tone of voice indicating that I clearly don’t believe it.

She laughed in return and said she wondered if I’d get that.

I thanked her for thinking of me. She said thanks for the nice notes I wrote. She appreciated them. So I guess she must be referring to the note to my old treatment team (thanking them for their part in getting me my good pathology report) and the note I wrote to Dr. C. (thanking her for taking me on as a patient).

How nice. If everyone there hated me, this would not have happened.

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As you can tell, I’m having more trouble with rads than with chemo or surgery, I think. That trouble is both physical and psychological. Although I have consented to radiation treatment with my intellect, I’ve had a hard time getting my heart there. And that’s not a good place to be when you’re this far into a treatment. “Consent” is definitely an on-going process, for me. Not a one-time thing.

Physically, I am more tired now than I’ve been in many years. If 100 = I can’t get out of bed, then I’ve been hovering at around 75-85 for most of this treatment. The situation was not helped by the radiation techs telling me that I “shouldn’t” be this tired this soon. That most people being treated for breast cancer don’t really start to get tired until the next to last or last week of radiation.

Early-on I was so tired, I was walking around near tears, so I decided to ask the nurses about it. I spoke to Nancy, J-Rad’s nurse. She told me that most breast patients don’t get this tired this soon, but it does vary from person to person.

When I asked to understand more about the mechanism that is causing the tiredness –– what is going on in my body at the cellular level that makes it so tired –– my actual question was not addressed. I was told that needed to do some aerobic exercise for 20 minutes three times a day, eat well, take naps when I need to, maybe talk to the oncology psychiatrist to relieve the stress I feel about having cancer, which can be quite stressful….Stress and fear, she said, can really contribute to fatigue.

(There we go again, I thought, with care providers living in “Happy Cancer Treatment Land” and assuming that all patient problems are problems with adjustment to the cancer, not the cancer treatment. I find this so offensive, it’s hard for me to express my distaste strongly enough. This is precisely why I feel ignored and not on the same wavelength as my care providers. And therefore not safe. This is an excellent example.)

I thanked Nancy for her suggestions, telling her that my diet is quite good now and that I have been in weekly counseling almost since this all began and that my fatigue is NOT all in my head. It’s a very real physical response that is quite independent of my psychological state at any given time. Even when I’m quite happy about something, I’m very, very tired. I had my little freak-out about treatment a couple of weeks before, I said, and that is done now. This fatigue is not caused by poor adjustment. She backpedaled then, saying that she didn’t mean it was.

I asked Nancy if my blood counts were alright (hinting that a blood test might be in order, as it has been a long time since I’ve had my counts checked). She looked at the palms of my hands and assured me that they probably are. Blood counts seldom get low in people receiving radiation for breast cancer, and my palms look nice and pink, she said, so I’m probably fine.

I pushed, then, for a fuller understanding of what is happening to me at a cellular level. I wanted to know *why* this is happening. What is the biological mechanism? (If I know what the mechanism is, maybe I can do something that will “feed” myself at the cellular level and help improve things.)

She didn’t know, she said. I’d have to talk to a physician about that. So I said fine, I’d like to do that. They called Dr. L, the head of Radiation Oncology, and we had a nice chat.

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Dr. L first tried the general “radiation makes you tired” thing and suggested that stress and anxiety and fear could cause fatigue. It’s scary to receive radiation and that big machine is rotating all around you, he said, smiling….

(Again, “Happy Cancer Treatment Land” and patient adjustment to cancer….)

I looked him straight in the eye and said, “It’s not scary. It’s tedious, coming in here every day. But there’s nothing scary about it. I had my melt-down over this. I’m fine now. What I want to understand is why this extreme fatigue is happening to me.”

Then he said asked when I had my last blood counts checked. I said it was sometime around early December when I had my surgery. He looked at my chart and said I’d been a little anemic then, so we could check them again now, which seemed to me like a good idea.

But, I persisted, I wanted to know why this was happening to me. How does radiation work, when it hits the cells, and why does it cause fatigue?

Dr. L said that they don’t really know why it causes fatigue. There’s a lot they don’t know about how radiation works, he admitted, but there’s a lot they don’t know about how chemo works, either. I just laughed ruefully and said, “I know that for sure!”

Then he explained that as far as they know, radiation works by causing damage to the DNA in the nucleus of the cells. (They don’t know what it does to the DNA in the mitochondria, the cell’s powerhouses, which are not in the nucleus.) In most cases, the damage it causes is repaired within mere minutes –– or less –– of its happening. Our bodies, he repeated a couple of times, have evolved into very resilient things. In some cases, it takes longer for the repairs to be effected –– a few hours. That’s why, when they do rads twice a day, they wait at least six hours between treatments, so the body has a chance to do this “long-term” repair.

I asked him if the damage was limited to that time frame, or if some didn’t linger for longer, since I’ve been told that the effects of rads can be felt for some time after you finish treatment.

He said that yes, some repair takes longer, but they don’t know what kind of repairs or exactly how long they take. He said that if you take an animal that can be killed by, for instance, 6,000 rads, and you irradiate that animal with 5800 rads –– a barely sub-lethal dose –– and then wait for two years, you can give that animal another very heavy dose of rads and it will survive because by that time about 75% of the damage caused by the first round of rads has been repaired by the body. So while the tolerance for the rads the second time around is not as great, it’s still more than you’d think, because of the body’s ability to repair itself.

I realized that this is why Dr. J had told me recently that rads were not necessarily off the table if I got a recurrence in the future, depending on when it happened, where the recurrence was, etc. Because in the intervening period of time, my body will have had a chance to repair some of the damage that radiation is causing me today. So while I’m getting a heavy dose, this current dose doesn’t eliminate rads from our arsenal in the future, if need be. (Though given the way I feel about rads, this is not necessarily a cheery thought.)

I asked Dr. L what kind of damage is done to the DNA. He said there are three main kinds of damage. First is outright cell death, or apoptosis (a term I know already), through destruction of both strands of the DNA chain. Second is damage to one strand of the DNA chain. That kind of damage may be repaired fairly quickly by the cells, as he said above. In which case the cells continue along doing their thing.

Or, alternatively (and third in the list), that kind of damage may incapacitate the cells, so that they do their thing, but not very efficiently. They limp along like that until the time comes to divide (mitosis), but they can’t divide because of the unrepaired DNA damage they have sustained, and so they die at that point.

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Dr. L invited me to contact him again if I had further questions, so I did. It occurred to me, when I got home, that the two pieces of what he had said (or what I had heard!) didn’t make sense to me. On the one hand, he had said that most of the damage from any given radiation treatment was repaired within about six hours.

On the other hand, he had used an example of irradiating an animal to within inches of its life, and how it takes two years for the animal’s body to repair itself enough so that it can survive receiving another very strong dose of radiation (up to about 75% of what would be a lethal dose).

How can both of these things be true? Hours to effect repairs versus years?

The next day he explained via email:

“The body repairs most of the DNA damage almost immediately, within fractions of a second. The remaining DNA breaks cause the clinical injuries we see in patients and in animals. This small fraction of residual DNA damage causes the clinical [tissue] injury.

“There must be some tissue remodeling, recruitment of new stem cells, or other mechanisms that account for the ‘slower repair,’ or maybe more accurately stated ‘the increased amount of normal tissue tolerance that is gained over time.’ [BRD notes: Whatever that means!] So the residual injury is healed, or there is some level of healing, that allows the body to take additional radiation that is manifest as a ‘75% repair.’ Whether those actual DNA breaks are healed, or whether there is regrowth of stem cells, etc., is really unknown. In practical terms, I am not sure it really matters.

“Just to clarify, the study that was done in the animals looked at spinal cord injury, and not whole body irradiation. So, it was the spinal cord showing the repair over 2 years. We do not know if this applies to other organs.”

Later, I asked him the same question in person and he gave basically the same explanation. But he added a little, based on my prompting.

What is accomplished within six hours, he said, is not really damage repair, but the cell’s ability to regroup and resume its “normal” and reparative activities. It has regrouped enough, six hours later, that it can handle another small hit of radiation.

If you gave the cell another small hit before that six hours was finished, it would not have had time to re-gather and re-group, and the hit could swamp its little boat and kill it. If it’s not a cancer cell, you don’t want to do this. (If it is a cancer cell, it’s not as “organized” as a healthy cell, and it doesn’t tend to be able to re-gather and re-group within those six hours...or even at all. So it dies, and that is fine.) But by six hours, the healthy cell has wandered around (as it were) in a daze for a bit, recovered its bearings, and begun to resume its normal processes and also begun any necessary repair processes.

Hitting the cell in this way can’t go on indefinitely, which is why the total dose of radiation a cell receives has to be limited. The miraculous part is, though, that the repairs happen so well. They may take quite some time to effect completely –– even years. And we don’t know yet what actually happens during the healing process. But when it is done, the cell (or its offspring/replacements) is able to withstand another round of radiation, if necessary. Not as much as the original, untreated cell was able to withstand –– only about 75% of what it could stand originally. But that’s still a lot of radiation.

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I told Dr. L that I was asking all of these questions because I want to understand what is going on with my body, taking in all this radiation, and what I can do to support it in recovering from it. How I can help my healthy tissues and mitigate the negative effects of the radiation.

He just shrugged and said, “Nothing, really. Eat right, wear your seat belt, don’t smoke….”

Happy Cancer Treatment Land, where side effects don’t mean a thing….

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In making all of these inquiries, at one point I got the feeling from Dr. L that I had been peering into his little black box from which he pulls all of his “treatment tricks,” and he was uncomfortable with having explained to me how much they don’t know. How uncertain the practice of medicine is.

It’s not just that the practice of medicine is uncertain because you never know how any individual physical body is going to react to the treatments it receives, so you can never know whether the treatments you provide will work. It’s uncertain because of the nature of those treatments, themselves. They don’t always know exactly how the treatments work. They only know that they do work. Sometimes. To some extent.

In this, it seems to me, the practice of conventional cancer treatment is different from nutritional integrative therapies only in degree, not in kind. Of course, you’d never know it, if you read the American Cancer Society’s manual on complementary medicine. That fine reference manual is chock full of warnings about how much is not known about various integrative nutritional measures that have been used for a long, long time to treat cancer or have shown promise in the labs but are untested on humans. Yet to some extent, the same thing appears to be true of conventional medicine.

The only difference is that there are bigger bucks to be made in conventional medicine, which is patentable, so there are more research dollars devoted to understanding the mechanisms of the drugs we now have and finding ever better and ever newer such medicines for the future. As a result, there is relatively more known about them than about integrative approaches.

But that “more” is not an absolute “more.” It is only a relative “more.”

In the end, the uncertainty in medicine lies in both things: the individual body being treated and the treatments being used. Whether those treatments are conventional, patented, high-dollar medicines or integrative, non-patentable, lower-cost nutritional measures.

It’s certainly reasonable to rely primarily on those treatments that we know more about, but it’s not like you’re entering a world of “knowns” when you do so. Care providers might not like to erode the veneer of certainty that they have learned to project, by admitting this too readily. But it’s true.

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In my quest for a fuller understanding of what I’m doing to myself, when I receive radiation, I also spoke with Caitlin, a nuclear physicist who works in Radiation Oncology and helped plan my treatment.

Most of the damage done by radiation (about 75%), she explained, happens indirectly. The radiation hits water molecules in the cells, liberating electrons from them which go on to damage the DNA. Only some of the damage (about 25% of it) is caused by the direct action of the rays themselves on DNA.

Different kinds of rays have the ability to penetrate to different depths in the body. Electrons don’t penetrate very far and once they do penetrate, their energy is rapidly spent, which means the surface where they hit gets a large dose and it’s more difficult to get dose to underlying tissues.

Photons, on the other hand, penetrate more deeply. Once they encounter an obstacle (like skin) they begin to react with the tissue and lose their energy (deliver dose), but in a less precipitous manner, meaning that they are more effective at depositing deep doses of energy that liberate the electrons from cellular water molecules to do their DNA-damaging work.

I asked Caitlyn why we don’t just use all electrons, if we want to treat my skin (IBC propagating through the skin’s lymphatic system, after all), since they don’t penetrate very deeply, instead of photons, which do penetrate and hit things like my lungs.

She said that, first of all, we do want to hit deeper structures like my chest wall, the supraclavicular nodes and the inframammary nodes. I had kinda forgotten this.

Second of all, electrons, when they hit an obstruction like skin, very quickly build up to a certain level of dose/energy (because of knocking off electrons and causing indirect damage) and then immediately lose a great deal of that energy into the surrounding tissue before it’s traveled very far. You wind up getting a lot of energy deposited very, very close to the surface of the skin, missing the deeper layers of the skin, and having trouble feathering out the dose for more even coverage, thus risking creating “hot spots” where there is a lot of energy deposited. Because of all of this, electrons are very hard on your skin. They tend to cause it to peel and slough off more, because they’ve burned closer to the surface layer of skin.

Photons, on the other hand, take a bit longer to build up that “dose” level of energy, when they hit the skin. Because they are higher energy than electrons, they are able to travel deeper into the skin and other tissues, and they distribute this dose of energy as they travel along. As they distribute it, it’s a more gradual distribution, rather than the precipitous distribution curve made by the electrons. This means that you get fewer hot spots, can more easily feather out the distribution patterns caused by the various beam angles, and get more reliable and deeper coverage.

We spent a lot of time discussing how much of my lung is getting fried. Caitlyn said that the “rind” analogy may have suggested an orange rind, to me, but in reality it’s more like a watermelon rind. While that amount may seem huge to me, because it’s my lung, she said, it’s really not very great.

For lung cancer patients, they want to irradiate a minimum of 35% of the lung volume to something like a minimum of 2000 cGy (centiGray), and they can do that safely, with minimal chance of causing short- or long-term lung problems. (What “minimal” is was left undefined; I find it’s a moving target, depending on who you’re talking to, what you’re talking about, what phase the moon is in at the time of the conversation, whether a butterfly is disturbing the air somewhere in South America….)

In my case, only about 12% of my right lung volume is getting hit with 2000 cGy (40% of the dose); 35% of my lung volume is getting about 250 cGy (5% of the dose) or less. This is an extremely small amount.

I asked why we don’t use electrons to treat rather than photons, if electrons don’t penetrate as far and we (I, anyway!) want to minimize lung hit. She said it’s because electrons don’t penetrate far enough. They fail to get far enough to reach through the skin and into the chest wall, which we need to treat because we have to presume that rogue cancer cells traveled there and have been trying to set up camp.

I asked her to explain the pictures of my lung hit that Dr. J gave me earlier, and I exclaimed at how much of the lung is getting hit –– how it looks like so much more than what she was describing. So she showed me the 3D pictures of my lungs, on her computer, and how the various treatment fields strike the lungs. While it does look like a lot of hit, when you look at one single plane of the lung, as you move through the planes before and after the “big hit” one, you can see that the hit drops off rapidly to nothing.

I suspect, though did not ask, that the pictures Dr. J gave me show the point/plane of lung where the hit is greatest for any given view or any given treatment angle. So of course it looks very large, at that point. But while they are all used to visualizing this in 3D, and understand the big drop-off that comes in the slices immediately adjacent to the slice in the view, most people like me aren’t used to visualizing in this way. So it can look alarming, if you’re wanting to understand what’s happening and see those pictures.

I asked Caitlyn why we don’t use shielding for patients during treatment (like the lead aprons used in dentists’ offices), so that healthy tissues don’t get bombarded with the radiation and only the affected areas get hit. She said it’s because of a phenomenon called “bremsstrahlung” (which actually has nothing to do with lungs!).

Dentists use very, very low-energy beams. When any of those beams scatter and hit the lead apron, they are effectively stopped. But because of the bremmstrahlung phenomenon (German for “braking radiation”), trying to shield the non-targeted areas of a radiotherapy patient’s body from the high-energy beams used in treatment would likely result in their receiving more radiation rather than less. Why?

As I understand it (a combination of Caitlyn and Wikipedia), to brake high-energy beams the way they do low-energy beams in dentists’ offices, it would take a ton of lead. Almost literally. It would be a crushing amount that the human body could not support. There are about 10 feet of concrete between the radiation techs who give me my treatments every day and me. That’s how much shielding it takes to protect them from exposure. They can’t create that much shielding for every non-treatment body part of every patient that comes in.

To use less shielding than that (as in a lead apron for the patient, like at the dentist’s office) would not only be ineffective, it would be downright dangerous. As the high-energy beams would hit the lead in the apron, they would be suddenly and precipitously slowed down (braked), giving up their kinetic energy and producing, in the process, a great deal of that secondary radiation that does most of the treatment-damage. The physical characteristics of these secondary rads (shorter wavelengths, higher frequency) would make them very penetrating to the human body…apparently more penetrating and damage-causing than the original radiation if it is allowed to just pass through your body.

They target the radiation beams in treatment so that most of it goes to the intended treatment site and does the intended damage in that area. But if they tried to block the scatter radiation that hits the other parts of your body, they would just slow it down and cause it to do you more harm rather than less.

On the other hand, I think they use the bremsstrahlung phenomenon to advantage during treatment. According to Wikipedia, using lower-density materials to brake the treatment beams (like Plexiglass, wood, or water) slows down the original rays less precipitously, producing secondary radiation that is not as energetic (has longer wavelengths and lower frequency), which means it doesn’t penetrate whatever it hits as deeply. On some treatment days they use a bolus on me. The bolus appears to be made of some kind of gel. Caitlyn says the function of the bolus is to slow down the treatment beam and cause it to give off its DNA-damaging radiation closer to the surface of my body –– more in the skin and the chest wall, etc., than in the deeper structures. This sounds like the application of the bremsstrahlung phenomenon, if I have understood it correctly.

So, odd as it sounds, I am actually being bombarded with high-dose radiation throughout my body, when I’m receiving a treatment. Most of it is targeted closely enough that it hits the intended treatment area, but some of it bounces around the room and hits all of the rest of me, too. If we tried to stop that from happening, due to the bremsstrahlung phenomenon it would actually be more dangerous for me than just letting the rays bounce around and do their thing. I imagine that they don’t bounce for very long. As soon as they hit those 10-foot-thick concrete walls, they are effectively stopped.

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I got all of this info across a number of days, as I was simultaneously, with great trepidation, submitting myself for radiation treatment every day. Often I have laid down on the table and had to fight (more or less successfully) to keep tears from my eyes, knowing that I was lying there deliberately killing healthy lung tissue and only hopefully killing cancerous tissue. It has been an exercise in intellectual determination, to go through with this. My heart has been very difficult to convince that this has been the right thing to do.

The info Dr. J and J-Rad gave me to explain what they were doing in my radiation therapy included verbal statements (“rind,” and “10%”), a graph showing the hit to my lungs and pictures of the hit to my right lung. All of these things combined led me to think that their frame of reference was my right lung. It was certainly *my* frame of reference!

What I finally realized, after days of talks with Caitlyn and with Dr. L, is that this was not so. When they created a picture of the radiation fields, they pictured the one lung being hit by the rads (my right lung). When they talked about a “rind” of lung being rendered permanently scarred and useless, they talked about the right lung. But when they put numbers on the damage they were doing, they were talking about the capacity of both lungs considered together. The numbers look worse when you only consider the lung being hit with radiation.

Since their original graph showing what percentage of my lung was getting what percentage of the radiation hit reflected the capacity of both lungs together, rather than the effects on the one lung actually being hit, I requested that they give me a graph showing the radiation hit for my right lung alone. As Monk might say, here’s what’s really happening:

(1) It turns out that 80% of my right lung volume is getting *at least* about 2% of the total treatment (Tx) dose; 70% of the right lung volume is getting *at least* 3-4% of the total Tx dose; 40% is getting at least 11-12% of the total dose; down to 10% of the volume getting about 70% of the total dose; with a tiny, tiny fraction of the volume (maybe 1%) getting the full Tx dose.

(2) OK. Now visualize what this looks like, using a model of a lung. My original mental image, when I was told "a rind" would be fried and that this amounted to "about 10%" of "the lung" volume, was of an orange.

If the lung is an orange, you'd cut off about 10% of the volume of the orange, hold that chunk in your right hand (for me, the side being hit by the rads), and the rest of the orange far out to the left, in your left hand. The rind in your right hand represents the amount of lung that is being hit and scarred beyond repair by the radiation. The rest of the orange, way off over there in your left hand, represents the rest of the volume of the right lung, which is untouched by the radiation.

But this is not an accurate image.

A more accurate image would be of a holographic, 3-D right lung, hanging there in the air before me. Say it's a bright pink color. About 80% of the volume of that lung would have a very fine white mist in it, representing about 2% of the total treatment dose of rads. That mist would be distributed throughout the lung in a pattern consistent with the pattern/direction of hit from the radiation beam(s). At 80% of the volume, it would be pretty diffuse throughout the lung, obscuring the pink color only very, very slightly.

A bit more of the white mist would appear in 70% of the lung volume, reflecting places where the lung was getting at least a 3-4% total dose. Again, at this level of dose, the whiteness wouldn't obscure the pink too much, but just a very little bit. Then 60% of the lung volume (distributed in a pattern consistent with the direction of the treatment beams) would be a bit more muted with white mist, as the hit for 60% is about 5% of the total Tx dose. And so on through the lung volumes.

There would be 10% of the volume of the (right) lung that looks only somewhat pink and is getting close to being totally white, because that 10% is getting fried with about 70% of the total Tx dose. And 5% of the lung volume would be almost totally white, because it's getting 80% of the total rad dose...while a very tiny 2-3% of the lung volume would be virtually totally white, because it's absorbing almost the entire Tx dose.

In other words, there is almost none of the right lung that is NOT getting hit to some degree by the radiation. Most of the hit the lung is taking is a very, very small portion of the total dose...but it is nevertheless getting some dose.

(3) We would expect tissue damage to occur in the places on the model where the lung looks very, very white, reflecting places that are receiving the highest proportion of the Tx doses. No question.

There is progressively less damage in areas of the lung that are more pinkish and far less white. At a certain point there is virtually no damage, despite the presence of some misty white color, because radiation at that dose does not tend to cause any appreciable damage (so they say).

To conceptualize this damage, we could imagine the lung tissue as being like bunches of clusters of grapes. In areas that were colored almost totally white in our holographic model, most of the clusters of grapes in that area are toast. Fried. Gone. Dead. Scarred beyond use. It's not just that there are grapes within the clusters that are toast. Entire clusters are toast.

But in areas that are somewhat more faintly white, more of the clusters of grapes in that area are in good shape. Fewer are permanently fried.

And in areas that are only very faintly white, there may be a very few rotten grapes scattered throughout some of the clusters, but not very many. Most of the clusters are in pretty good shape and are chugging along doing their oxygen/CO2 thing, unimpaired by the radiation hit that a few of the grapes in their cluster may have absorbed.

The "rotten" grapes (or in the whiter areas, the rotten clusters) will never repair themselves. They are permanently killed. Out of action. But in the end, if you could sort out the grapes from all of the individual clusters and put them into two piles –– one pile of dead, useless grapes (which in some cases would be entire clusters) and another pile of live, healthy grapes –– the pile of dead, useless grapes would be about 20-23% of the entire original volume of the one (right) lung and the pile of live, healthy grapes would be about 80% of the original volume.

When you dilute this picture by including all of the live, healthy "grapes" from the left, non-irradiated lung (in my case), you come up with the "about 10%" figure that I was quoted originally.

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It’s taken me awhile to get my visualization skills up to speed so that I can kind of see what I think my treatment team is seeing, as they have devised a treatment plan for me. As I learn about this stuff and come to see it more as they do, I find myself getting excited. It seems kinda neat. Kinda cool. And I now understand that the term for what I have been wanting to know about is “radiobiology.”

But while it is exciting to learn new things and understand this, it remains a fundamental fact that subjecting my body to all of this high-dose radiation is very counterintuitive.

A little voice inside me says, “Isn’t damaged DNA what got you into this mess? And now you’re trying to treat the consequences of having damaged DNA by damaging more DNA?”

I tried to explain to Caitlyn how there are no everyday analogs for receiving radiation treatment. We take OTC medicines all the time; chemo is just a very powerful (and toxic) version of taking medicines. We pull splinters out of our fingers or get casts put on broken limbs all the time; surgery to have a breast removed is (an extreme) case of other kinds of “operations” that we encounter in normal daily life.

But there is no normal daily-life analog for receiving therapeutic radiation, so there is no framework for easily viewing it as “OK.” The only everyday analog we have when it comes to radiation is getting diagnostic x-rays, and that is not really a true analog. They are diagnostic, after all, and not therapeutic.

Even worse, the public is always cautioned about not allowing themselves to get too much radiation. Not too much sun. Not too many diagnostic x-rays in any given year. The public health message is “Be careful about radiation exposure!”

But if we get cancer, we are expected to just blithely forget about all of those public health messages and submit ourselves to massive doses of radiation. And be OK with it.

Most people just shrug and say that they guess their doctors know what they are doing.

I can’t shrug. I need to understand why.

Why should I feel comfortable chucking everything I’ve ever been told for my whole life about radiation exposure? Especially when radiation damages DNA and I have a major health problem caused by damaged DNA?

Everything I’ve learned so far has been useful to know, but it does not yet address this question in a way that makes my heart be at peace.

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It’s been a hard, hard four weeks. The fatigue combined with the anger, the pure rage and grief, I have felt at having to deliberately hurt my healthy lung tissue in the name of hoping to kill stray cancer cells –– it has been substantial.

I’ve been aware for a few years now of having tapped somehow into a well of anger that is deep and potent. I have no idea where it came from, but I’ve been aware for some time that it’s there. My work on the Employee Forum helped to tap it, but was not the source of it. I had thought that perhaps my experience with cancer would help me resolve it, but so far that has not been happening.

In fact, the experiences I’ve had in the course of my treatment have only served to reinforce it. I want so much to just relax, be a patient, and let others take care of me. But I can’t. I can’t relax. I can’t quit being my own advocate. I can’t quit trying to watch my back. I tried to watch my own back during surgery, but that option was denied to me and look at what happened. If I had not been watching my own back before I started rads, I would have wound up with a treatment plan that didn’t do what we had agreed needed to be done.

I must be wary. I must be cautious. I must watch my own back, because no one will do it for me. And this makes me unbearably sad and angry.

When I talked to Mary, the oncology chaplain, about this a few weeks ago, she loaned me a CD on managing anger. It has a guided meditation on it and a series of affirmations. I’ve been listening to this CD on a continuous loop when I’m in my car. I do a lot of driving around to various appointments, so I get to listen to this CD a lot.

At first, it made me cry a lot. I couldn’t listen to it without crying and crying, my chemo-laden tears leaving red tracks as they ran down my face. But as I have listened again and again, I cry less now.

I hope that’s a sign that it’s working, and not just that I’m becoming inured to it.

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I am not alone. In my darkest moments, I get little signs that I am not alone, and I’m not crazy or bad for feeling the way I do.

When I went to pick up my other foob and one of my mastectomy bras, I got to talking with Darlene, who runs the store. She said that she is starting a new project for women who have completed their cancer treatments. She said that she hears from them all the time about how after treatment they are left with all of these long-term health problems to cope with and psychological issues to deal with…and almost no guidance from the caregivers whose sole focus was to cure their cancer. And they are upset and angry, she said. They need answers, support, and help. So Darlene wants to start something to give them that.

I immediately felt so safe, so normal, so understood. The levels of inner grief and anger and anxiety that plague me when I visit the Cancer Hospital and follow me around in my daily life, vanished in an instant.

And then there was this, from one of the other women on the IBC discussion list who has been getting radiation therapy at the same time as me:

“Fifteen years ago my ex mother-in-law was diagnosed with breast cancer. She went into the hospital, signed a form, and went into surgery knowing she would have a biopsy and depending on the results of the biopsy, would wake up with or without that breast.

“But after that, each step was a choice. If she had chemo, it would improve her survival chances by X%. If she had radiation, it would improve her survival chances by X%. If she took Tamoxifen, it would increase her survival chances by 5% (for some reason I remember that stat –– odd).

“Nowhere in this treatment has anyone ever offered me a choice. Six cycles of FEC then surgery (I guess single or double boob removal was a choice). Oh, bad path report –– we must start carboplatin/gemzar. Carboplatin/gemzar about killing you? Well, we must give you blood/platelet transfusions and carry on. Okay, now we must change to Taxotere. And now you must do radiation. Ooops, you need to do more radiation (We kinda forgot to tell you that).

“So yea, no choices for us. I think, in talking to other breast cancer patients, they get choices. But with IBC we just don't get options. Other than opting to refuse treatments, and then we are reminded how aggressive IBC is.....

“Anyway, I know what you mean, we get no options. And it frustrates me too.”

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Brian Stabler, a retired psychology professor at UNC, gave a talk last week at the New Life After Cancer group that Dr. S is starting. He was diagnosed with Stage IV non-Hodgkins lymphoma 20 years ago and has been alive and doing well since he underwent what was then an experimental stem cell transplant (autologous) that his physicians here at UNC advised him against doing. (The fact that he is a 20-year, disease-free survivor of Stage IV cancer reminded me yet again of Dr. H’s comment to me: “If you get a recurrence, it’s Stage IV. There is no cure for Stage IV cancer.”)

Stabler made the comment that probabilities are defined by p-values and close off the future, while possibilities lead everywhere and are open all the time.

I need to learn to live in possibilities. Not the probabilities that this cancer will return, but the always-open possibilities that it will not.