12-2-09 Update – Countdown to Surgery – T-1: Choice Vs. Resignation

Tomorrow (Thursday the 3rd) I have surgery at 9:00 a.m. I have not exactly chosen to have this surgery at this time. It’s more like I am resigned to doing so. Why “resigned?”

First, because everyone has made me terrified of my gut instincts, which say that since I’ve tolerated chemo well so far and have had a good response to it, it’s too early to stop. We need to do more.

Second, because the only alternative to chemo would be to do radiation. My surgeon called me this morning, at my request, and suggested to me that if I don’t want to go to surgery now, we could do rads, instead. She made it sound like it was my choice. But really, it’s not much of a choice at all, at this point in time. It’s been 4.5 weeks since I’ve had my last chemo. That’s 4.5 weeks that I have gone without any kind of medical protection against this cancer. It would take another week or two to get set up to take radiation, which would mean two more weeks of no protection. What choice would *you* have made, under those conditions? Of course, I “chose” surgery.

The real bottom line is, if my first oncology team had given me choices for what we could do instead of declarations about what we were going to do, I might have made different choices and might not be going to surgery right now. Then again, I might have made the choices they advised, and would be going to surgery now anyway. The most important thing is, I would have felt as if I really *did* play a role in the course of my treatment, instead of feeling backed into a corner, like I do today. And that corner was created by the dictatorial management of my case by my old oncology team.

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It was really amazing to talk to Dr. M on Monday. He walked into the room, examined me, then sat down and laid out three different courses of action we could take in my treatment.

He said that he assumed that my team had gone over all of these with me. I told him no, that my team had never presented me with options like this. Never.

He said that he assumed they must have at least talked them over among themselves in their weekly “breast conference.” I said that might be, but they sure as hell never talked them over with the patient!

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The “choices” I am being presented with now are “after the fact” choices that don’t really amount to much. I should have been presented with ALL of these upcoming choices within the first month after I’d started chemo. I should have been educated about what the choices were, what the advantages and disadvantages of each were, and what one they were leaning toward doing…and then told that I have time to think it over, ask more questions, etc., before we have to decide which route to take.

Now THAT would have been truly patient-centered medicine!

Too bad you can’t get that at the NC Cancer Hospital at UNC-Chapel Hill.

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I predict that in 5-10 years, there will be a new standard of care for IBC patients. It will include the very kinds of pre-surgery treatment that I have been trying to get, today, and have been unable to get in a way and in a time frame that makes it a rational choice.

And if I am still alive then, I’ll wager that not one of these medical professionals will come back to me and say, “We were wrong not to be more open from the outset to your ideas. Clearly you were on the right track. We’re sorry we made it so difficult for you to get the kind of treatment you wanted. We’re sorry we scared you to death and made you feel like your ideas were death-traps. We’re sorry we stalled and delayed and dragged our feet before finally making you feel that you had any choices at all—with the result that because of the timing, by then, you really didn’t have many choices.”

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So the process is on, today, to have surgery tomorrow. I’m glad it will soon be over. I have been so terrified. Yesterday I had to fight the feeling all day that I was going to throw up. In order to get some sleep last night, I took a “happy pill.” I often have to fight the temptation to break down in sobs. You can only cry so many tears, after all, before it just hurts too much to keep crying.

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I can’t believe we’re going to cut off my breast. By this time tomorrow, something irrevocable will have been done to my body. It’s so final.

I’ve been hyper-aware of my breast for the last few days. Every sensation of every nerve that runs through it registers in my consciousness. It is unbearably sad. These are the breasts that I grew from nothing. These are the breasts that fed my babies. And soon one of them will be gone, relegated to a tray in a pathology lab.

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When I spoke with Dr. M on Monday, I asked him about the pathology report that I’ll get after my surgery. I explained to him that I feel that anything less than a report that says there was a complete response to chemo (a pathological complete response, or pCR) is a long-term death sentence. Like all other medical providers, he tried to assure me that this is not so.

I had already asked my new oncologist, Dr. C, to quantify this for me, but she would not. She said we have to wait until we get the report in order to quantify how much “worse” my report is as compared to a pCR. So on Monday I asked Dr. M the same thing.

Essentially he said that a pCR is the best *single* predictor of a patient having a long and disease-free life. HOWEVER, he said, a patient who did not have a pCR but who did go on, after surgery, to have more chemo, radiation therapy, and then hormone therapy could have AN EQUALLY GOOD CHANCE of having a long and disease-free life.

As long as I wind up with **the same** prognosis, when treatment is over, as someone who had a pCR at the time of surgery, I will be content.

How we will KNOW that I have this same prognosis is a bit of a problem, however.

As Dr. M said, the pathology report is our “grade card.” It tells us how our treatment has been working so far. But we only get one grade card. After surgery, there is no more tissue to take out and examine under a microscope. So we really have no way of knowing how effective our post-surgery treatment has been, other than to wait and see if the cancer comes back.

This seems very indefinite and wishy-washy to me. I have some difficulty understanding how THIS can be as good as getting a pCR, after which you *know* that your prognosis is very good.

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Buddha discovered the Four Noble Truths. I am somewhat less enlightened than the Buddha, I’m afraid, so I have only discovered the Three Ignoble Insights:

1. I do not want to know what my pathology report says, because they going to say to me the same things they said on June 30th and July 1st of this year: You have cancer in your body.

Who in their right mind would want to live through that awful, awful experience again?

The only thing I want them to come to me and say is, “We got it all with chemo. The pathology report shows that there is no more cancer in your body.”

2. When I agreed to do chemo, I took full responsibility for what happened as a result. When I had febrile neutropenia and wound up in the hospital—twice!—I didn’t get upset at anyone. It just happened. It was one of the risks I assumed. Same with the Hand-Foot Syndrome. That hurt like hades, but I took responsibility for it. Same when we thought I’d had a heart attack. All just consequences of taking chemo. No sweat.

Well, not having a pathological complete response to chemo is also one of the consequences of chemo. But unlike with the neutropenia or the Hand-Foot Syndrome, I have not been willing to accept this. I’ve been fighting it and saying we can and should do more treatment (before surgery) in order to try to get a different result.

If I really meant it, when I said that I accepted the consequences of taking chemo, whatever those consequences turned out to be, then I need to make my peace with the fact that I am not likely to get a pCR.

3. I have had a lot of trouble with my treatment team treating me as if I were a statistic. When I was diagnosed and learned that the survival odds were not good for my kind of cancer, I was reassured that those were just the statistics and that I, as an individual, am not a statistic.

Yet when it comes to designing a treatment plan for me, I have been treated as if I were a statistic. The treatment I am getting is not designed for me, as an individual. It is designed on the basis of what has been shown to work, statistically, for the majority of people. I am presumed to be a data point on the peak of the bell curve that defines “standard of care” treatment for the kind of cancer I have.

And that p*sses me off. Especially when I, myself, have other ideas about what might be good for me and those ideas are dismissed out of hand (as my old treatment team did) or are made to become moot because of the time constraints that the dismissal caused, making execution of alternative plans at a later, delayed date an unwise choice.

Yet it would appear that I have been treating myself as if I were a statistic, just as surely as my treatment team has been/did.

The data on longevity for people who get pCRs is just that – statistical data. I have been insisting that I MUST get a pCR and that nothing else is worth having, because nothing else offers the same statistical chance of a long and disease-free life.

So when it doesn’t suit me, I don’t want to be just a statistic. But when it does suit me, I will fight tooth and nail to try to be one.

At least, that’s what it looks like to me.

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A friend did a meditation for me and came up with the insight that it might work, curatively, for me to “love” this cancer. That “love” might be the answer. I thought he was just a New Age nut-case. The whole idea made no sense to me.

But just now, as I was typing up the last of my Three Ignoble Insights, I realized that he may have been right.

This cancer is not some foreign invader. It is me. It is my cells, my body, gone bad. Gone awry.

To love the cancer is not to say it’s a good thing or a desirable thing. It is only to say that I tenderly recognize it as a part of me. A part that must go. A part that must be killed or removed…or those cells must revert to being once more an orderly part of the system that makes up my body.

But even if it is killed or removed…it is still a part of me that is being killed or removed. It is not some foreign, evil thing. It is only me, gone awry.