8-31-09 Update –

This has been a quiet week in terms of external events. Weeks with chemo days usually are, since chemo administration—so far—has been pretty unremarkable. This week was no exception…other than the fact that I got to have my first infusion in the new cancer hospital. My medicine woman, Marianne, went with me this time as my chemo-sitter and was just as impressed as I have been by the new facility.

Four years ago, when the ground was broken for the hospital, I pretty much ignored the event because I figured *I* would never need to use the hospital. I couldn’t conceive of getting cancer, and if I did, I reasoned, I would probably not go the traditional treatment route. I would explore alternative treatments, instead.

I never imagined that not only would I get cancer, but it would be an aggressive cancer that is only discovered when it is late-stage. I never imagined that when I really looked closely at the proven success rate of non-traditional treatments, I would find such disappointing evidence. I never imagined that I would need a good cancer hospital.

But I was wrong. And today I find that I am grateful to the citizens of North Carolina who have footed the bill for this facility.

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The other major external event this week was getting my wig—a mitzvah from my friend Alice. A couple of weeks ago we went to a wig shop in Cary that specializes in fitting women undergoing cancer treatment. The proprietor, Darlene, has been doing this for more than three decades, and she knows her stuff. Alice and I picked out a style that we thought was close to my usual way of wearing my hair, and Darlene agreed that our choice was good. She measured my head, puzzled for awhile over the right color to get….and then we waited.

Well, this week the order came in and I must say, Alice, Darlene and I did a great job of choosing! In fact, when I wear the wig I look better than I did before I got sick! The color is just right. And the style looks better than my natural hair—primarily because my own hair is wavier than the wig, so my own hair, when it gets longer, won’t do what the wig does. The wig, on the other hand, is nice and straight—the hair I’ve wanted since I was a teen-ager!

I’m going to have to be careful where I wear this, or no one will believe that I’m really a sick puppy!

Darlene also has a little room in the shop where she fits breast prostheses. I will have to be visiting her again in a couple of months. I know I’m in good hands, when the time comes.

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Most of what has been happening this week has been internal. The continuing collapse of my old idealism has been the central event. Unlike the previous weekend, when the first stages of that collapse were accompanied by much sobbing and affect, it’s been a pretty quiet week emotionally. But no less important, for all that.

The worldview I'm losing is a life-long quest to find that perfect world, that perfect place, where all is fair and just and beautiful and peaceful. Where there is no suffering, no want, no privation. Even to find just a piece of the world where this is true....even if it is just a piece that I can manage to create around me, in some small, insignificant way.

The truth is, I meet with lack of success in this endeavor no matter how hard I try. Hell, I can't even produce a perfect, peaceful, fair and just ME. Much less a little microcosm around me!

This confrontation with extreme idealism was well under way before I even got my diagnosis. With the diagnosis I have been hit full in the face with the fact that to save my life, I *MUST* submit to a medical treatment protocol that carries a whole big list of short-term side effects and potentially very significant long-term side effects that I’ll have to live with for the rest of my life...if the protocol is lucky enough to actually give me a life. I keep trying to figure out how to manage the situation. To make the big, bad, scary reality seem more manageable.

With regard to chemo, I have researched a bunch of nutritional things I can do to support my healthy cells as they try to come back from the assaults of chemo. One or two are specifically targeted to help protect my heart from the potential long-term effects of Adriamycin. At least, insofar as that can be done. I don't know if it's working, though. I can't sweep my sidewalk without getting winded now and having to sit down and rest.

And clearly my bone marrow is getting hit hard by the chemo. Does this mean that it's being damaged in a long-term way that is going to make me more prone to getting a secondary cancer (probably a blood cancer) later on? No one really knows, because apparently no one has ever looked to see if there’s a significant correlation between those who get febrile neutropenia and later health outcomes for that group of people. I just hope the supplements I'm taking now and will continue to take for years into the future will help to offset that risk.

What precipitated my last big emotional crisis is that I can't figure out what to do to avoid the risk of getting lymphedema, which is a considerably higher risk than getting heart disease from Adriamycin or blood cancer from Cytoxan. That is, I can’t figure out what to do other than refusing to let them take out my nodes.

I do not have as much confidence in the post-facto management techniques that are supposed to mitigate lymphedema—not sure they're the kinds of things that I can live comfortably with: long sleeves when outside, constrictive pressure sleeves, and **especially** the need to live my life worried about what my animals may do to me if they jump up on me and hit that arm or scratch me as they're getting off my lap or trying to play with me.

One woman I know who had IBC and now has lymphedema says that she is frequently on antibiotics because of getting even just tiny scratches on the affected limb. I can’t imagine this. To be constantly on antibiotics is not good for the human body. It goes against every principle by which I’ve tried to live my life since I became an adult: minimize the use of pharmaceuticals (over-the-counter or prescription) and rely on more natural healing methods whenever possible.

It would seem that having cancer is forcibly shifting that approach to life. The shift is a violation of everything I have believed and most of how I’ve behaved for decades.

I’ve been watching this week to see just how often I really do get scratches on my arms from my animals. I’m not imagining it—I really do get them all the time. Most of the time I don’t notice them when they happen. I only notice them later, when I see a little streak of dried blood where I got scratched. If that happened when I had lymphedema, it could be very dangerous. Any wounds to the affected arm need to be cleaned out and disinfected at once, in order to minimize the risk of a serious infection setting in.

So what is going to become of me, with these constant assaults on my arms? How do I manage that, other than to get rid of all of my animals? Is this yet another thing that cancer is going to strip away from me—my companions?

And then, when it comes to my trying to manage this evil world into which I’ve fallen, there is the general anesthesia during the mastectomy surgery.....I can't even fathom it. That much loss of control. That much allowing them to treat me like a thing while I’m on the operating table, because they don't know *me*. They don't know my values, my desires, my wants. I'm just another patient on the slab, getting another procedure. That bothers me, about giving up that kind of control.

Or maybe it’s my personhood that I feel I’m giving up—not control. To them, I won’t be a person. I’ll be a human body in need of a procedure. I don’t like that, but I don’t know what I can do about it. Other than to refuse to allow myself to become a “thing” in need of a procedure and insist upon remaining a “person” with a consciousness that they have to take account of because it’s right there, lying on the table in front of them, in their face.

And I haven't even gotten around to thinking much about the radiation yet.

In short, my entry into Cancer Land seems to be the last stand for my "search for the ideal world" orientation toward life. I feel like it's being bulldozed mercilessly out of me, every time I turn around. Every time.

Is all of this due to the cancer, or due to the cancer treatment? From my health team’s point of view, it’s me having trouble coping with my cancer diagnosis. From my point of view, I’m having such trouble coping with my cancer diagnosis precisely because of the cancer treatment. The cancer itself is so frightening because the cancer treatment is so very toxic, so very dangerous, and carries so many more risks than treatments for a wide variety of other illnesses. The bargain you have to strike with cancer therapy is that it will try to give you your physical life, but it runs a good chance of leaving you with other health problems that you never would have had if the therapy had been less toxic, less damaging, less mutilating.

My team refuses to see this, and that depresses me. Instead, they just see me as not coping, and they appear to be willing to change their impression of me only when I can enthusiastically embrace the treatments—not as necessary evils, but as unmitigated goods. We may never be able to see eye-to-eye on this question. Which I think is terribly sad.

I have hit the immovable wall. If I want to live, I don't just have to **passively** put up with an imperfect world, which in itself makes me angry from time to time. I have to **actively** embrace an imperfect—a very, very imperfect—world. Cancer World. With its dangerous, imperfect, toxic treatments.

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As I’ve been mulling these thoughts, this past week, I’ve also been experiencing new and further side effects from the chemo.

While I’ve had excellent nausea control this week, the cumulative effect of the fatigue from chemo has really hit me. An “outing” to work or to the wig shop that lasts just a few hours can require many hours of sleep once I get home just to re-group. Days when I go to work, I wind up coming home and having to take a short nap before I can even muster the energy to feed my animals—much less warm up something to feed myself.

In the days immediately after chemo, I began to develop the same ultra-sensitive skin that I had during my first hospitalization for neutropenia. It’s kind of like when you have the flu and you ache all over and your skin hurts just to the touch—only in this case it’s multiplied by about 3x in intensity. Back during my first hospitalization we attributed it to muscle strain and stress, because I was so keyed up at being hospitalized.

But when it happened this time, I was under no particular stress. In fact, I was kind of chilled out, so I couldn’t figure out what was going on. Within a few hours it had gone from being localized around my jaw, near my ears and down my neck, to around the base of my neck in back, to my shoulders, and then dropping down to about a third of the way down my chest and around my back.


My onc nurse said she had no idea what was causing it, but she wasn’t very concerned about it, either. She said it would be safe for me to take a Tylenol, which I did. But 1,000 mg. didn’t even touch it. So I got on line to the IBC support group I joined and I asked them what this was all about.

The women there said that this kind of skin sensitivity is a well known chemo side effect when taking the taxanes. This kind of explained things, but kind of didn’t. The description of the symptom sounded exactly correct; the problem is that I’m not taking taxanes yet. I will be in 4 weeks, but I’m not right now. So if I’m getting this odd side-effect with drugs that are not typically known to produce the effect, what’s going to happen when I really do start taking Taxol?

My taste buds have pretty much died as a result of the chemo, too. Most stuff tastes like cardboard to me, but it took me awhile to realize what was going on. It just seemed like I couldn’t taste my food, and I was piling on the salt, then getting very, very thirsty. When I realized what I was doing, I of course quit with the salt and began to recognize the real nature of my problem. Sadly, there isn’t much that can be done about it. My sense of taste should come back when I’m finished with chemo. But until then…..

I did discover one thing I could taste, though. Hot sauce! Really, really hot hot sauce! Ah, what a glorious thing it was, to eat something that had a taste! Of course, I found a few hours later that I had blisters in my mouth from eating it, which is not a good thing. But it was glorious to actually taste something!

Not all of my blisters are hot-sauced induced, though. I have found, with each of my previous forays into neutropenia, that as my white cell count dips, my mouth starts to get sores in it. I can now use that as a kind of rough gauge of what my white blood cell counts are. In the last 24 hours I’ve begun to get more mouth sores, which sounds about right.

Today is Day 7 post-chemo, and tomorrow is the dreaded 8th day, when I tend to go to the hospital because I get neutropenic and febrile. My onc and I are working a plan to try to keep me out of the hospital this time—we’ll just have to wait and see how successful we are.

In the meantime, my neighbor has written to observe the 8th Day Taboo, telling me that I look just awful. :) I responded with the appropriate ritual response, “I feel awful, too.” That, an oral antibiotic, and avoiding crowds for a few days may just do the trick this time!

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For all these side-effects, though, the truth of the matter is that I am weathering chemo pretty darned well so far. It could be so much worse.

Maybe it’s my experiment this last week in thinking about chemo for one hour a day in less negative ways, but I have realized something this week that may sound odd (probably patently obvious, to those of you who are not going through cancer, yourselves), but is true:

I don’t know what it feels like to have cancer. I had no symptoms with my IBC other than the visual ones. No pain. Nothing. I felt perfectly fine—which of course was one reason entering into cancer treatment was so hard to contemplate. It meant willingly giving up that feeling of health and vitality that I was enjoying.

The thing is, my health team is doing their best to make sure I never find out what it feels like to have cancer. They are trying to make sure that I only know what it feels like to undergo cancer treatment. And they do what they can to make that as unproblematic for me as possible.

Hopefully, with or without short-term and long-term side effects of cancer treatment, I will never know what it feels like to have cancer. I will only know what it feels like to have (a successful) cancer treatment.

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As I have come to this place of—what shall we call it? “Acceptance” might be too strong a word. Accommodation, maybe?

As I have come to this place of accommodation with cancer treatment, this week, a new issue has emerged for me. For the first time, I think I’ve begun to face the raw fact that I have cancer. It’s not the cancer treatments that are causing me agony and angst. It’s just the pure, simple fact that I have cancer at all.

How that changes everything.

It seems like a 500 ton elephant sitting in the path of my life. There is no way around or through this elephant. It is just there, blocking everything, dominating the road ahead of me. And my reaction to this elephant, right now, is numb shock mixed with profound sadness.

There is no growing old and dying of natural causes at an advanced old age. There is no living my life by putting a minimal number of potentially dangerous pharmaceuticals into my body. There is only knowing that I might die younger than I had hoped. That I might die of cancer. That I will have to engage with the pharmaceutical industry much more intimately for the rest of my life than I had ever wanted to do, even if I do live for many years to come. This is not the life I had planned.

I am going into regular therapy to try to help me make the psychological, spiritual and emotional progress I need to make with my situation. Blogging has been a great outlet, and it has been very gratifying to know that you all care about me and read what I write—but there are things I cannot say in public, to you, yet. I can only say them to myself and in private conversations. I need to have a trained cancer counselor to help me think them through.

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In writing what I just did, I can hear a couple of my long-time friends moaning and bewailing my fate. Not because they are afraid of the cancer, but because they are totally against submitting to modern cancer treatment. Both lost their husbands to cancer. Both think that I should quit conventional treatment and totally embrace alternative methods.

One of these friends told me, a couple of weeks ago, that the hospital where I am receiving my care killed her husband, but if I wanted to undergo traditional cancer therapy, that was my decision. The tone of disapproval and pained resignation in her voice was unmistakable.

Last weekend I talked with her briefly. It was a strained conversation. She wanted to know how I was doing, and I suggested she read my blogs to keep up with the details. She said she won’t read them, so we had a very superficial conversation, as I was not about to try to share everything with her on the phone. It was very clear to me, as we talked, that she thinks she is talking to a dead woman.

The other friend doesn’t communicate directly with me. She contacts mutual friends, instead, to see how I’m doing. She has basically told these mutual friends (who then told me) that she wishes I’d quit conventional treatment and do purely alternative methods.

I’ve been thinking about what I would say to her, if she ever expresses such ideas to me. In fact, I’ve been thinking about what I would say to both of these friends, if the situation ever arose. And this is it:

I know that you believe passionately in using alternative methods to treat cancer. You don’t seem to distinguish between kinds of cancers, or how fast they are growing, or at what stage they are discovered. All of these details don’t matter to you, and you are convinced that a purely alternative approach will produce not just an improved quality of life until death from cancer, but a complete cure of the cancer. You believe this very strongly, and you are clearly disappointed with the choice I have made to undergo conventional cancer treatment.

So what I wish for you is the opportunity to show me how wrong I am. I wish for you the opportunity to have an aggressive, late-stage cancer that you can then treat exclusively with alternative methods and show me—and the rest of the world—how it’s done.

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One of the most curious things about these two friends of mine—these alternative-only crusaders—is that they think of themselves as very spiritual people. Very “in tune” with the cosmos, the earth, the Creator, etc. Yet when it comes to cancer, they fall exclusively into a frame of reference that is purely and exclusively materialistic and all their vaunted metaphysics seem to go flying out the window.

For them, it all becomes about the physical effort to achieve physical healing. There is virtually no recognition that cancer may be more than a physical disease; it may be a journey. And there is virtually no recognition that there may be more than one way to undertake that journey.

To them, there is only one proper path to make the journey: alternative treatment, whose goal is physical healing. The psychological and spiritual aspects of making that journey become completely obscured in the mad rush to achieve physical healing using just this one path, and one path only.

I keep wanting to ask them, “But don’t you think that maybe there may be some meaning to be found in having cancer? Some personal growth? Some valuable learning? And isn’t that possible no matter what method you choose to try to treat the physical aspects of the disease?”

Of course, I think that if I put it to them that way, they’d probably say, “Well, of course.” But their words, their attitudes, do not indicate that they have this approach. Much less do they have an approach of truly, unconditionally supporting me no matter which path toward physical health I choose to pursue.

These two friends make me feel very sad…but also make me look at all of my friends (and family) who might choose differently than me, but who nevertheless support me totally in the choices I make as I am taking this journey. I am grateful for these people…more than words can say.

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Remember me mentioning my wise cousin Gayle last time? Well, she sent me a book that I’ve begun reading: Bernie Siegel’s *Love, Medicine and Miracles*. The sub-title says that the book is about what he learned about “exceptional patients.” Given the difficulties I’ve had in coming to terms with cancer treatment, I dreaded reading the book. I figured that I’d be shown to be one of the kinds of patients whose attitude and outlook gave them the poorest prospects for recovery.

Turns out, I was wrong!

Siegel writes that there are three main types of patients. About 15-20% are those who really are wanting to die, whether consciously or unconsciously. They show no signs of stress when they get their diagnosis. Clearly this wasn’t me!

The middle group are the 60-70% who are the “doctor-pleasers”—who act as if they are auditioning for a part, expect the doctor to make them well, never question what is happening to them. Clearly that is not me, either.

The exceptional patients, says Siegel, are those 15-20% who refuse to be just “victims” in a treatment scenario in which things get done to them. “They educate themselves and become specialists in their own care. They question the doctor because they want to understand their treatment and participate in it. They demand dignity, personhood, and control, no matter what the course of the disease….Exceptional patients want to know every detail….Physicians must realize that the patients they consider difficult or uncooperative are those who are most likely to get well” (p. 24-5).

Bingo! If that doesn’t describe what I’ve been doing for the last 8 weeks—in fact, my whole personality—I don’t know what does!

Siegel writes about research done at Yale with breast cancer patients. The researcher found that patients who he called “defensive repressors”—people who smile and refuse to acknowledge their desperation, who say “I’m fine” when everything in their life is collapsing around them—tend to die faster than patients with a more realistic outlook (p. 80). In the margin I wrote, “I’ll live forever!!” :)

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It’s been a quiet week at H.E.R.S. (what I call my property). The August heat and humidity has not been as bad as it usually is. Today, it rained and the temperature was wonderfully cool. The plants are grateful. The animals have been loving it.

There is a young buck with a nice little rack that wanders into my 4 fenced acres on a regular basis. I think he’s pleased that I put the fence up because it helps to keep my dogs from chasing him very far when he jumps across it to see if there are any tomatoes or zucchini left to eat from my garden.

Yesterday my smaller cat, Bitsy, was outside as the buck wandered into the front yard. You could almost feel her excitement as she assumed a low crouch and crawled hurriedly to within a few feet of him, tail twitching. He looked up from his grazing to see what the movement was, and just stared at her. She stared back. Clearly, this encounter was not going anywhere very important!

But suddenly there was a rush from the side of the yard and my Sheltie mix, Foster, was running and leaping like a gazelle (seriously!) toward the buck. The danger was only slightly more pressing. The buck bounded off into the woods a little ways, then stopped. Foster leaped after him for a bit, then decided that he had performed his sentry duty sufficiently well.

Is it any wonder I can’t grow a tomato?!!

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Like the little girl who was an incurable optimist even when she received a big pile of manure for Christmas, I have been shoveling. I have not yet discovered any ponies in my pile of manure. But I am exploring the options for using the manure to nurture and grow some things. And maybe that’s enough, for right now.