8-19-09 – Selective Vision, or “The Emperor’s Clothes”

Selective vision. That’s what people who work in the cancer industry (yes, I said it: the cancer industry) have. In fact, it’s probably a job requirement, because to be able and willing to step back and keep in mind the whole picture of what is going on with their patients would be too much for them to handle.

Yesterday my oncologist (whom I love, by the way) visited me in the hospital. He made a comment about in a few years, when this is all behind me, and I thought, “You have no idea, do you?”

He has no idea that this will never be behind me. I will be doing a dance with cancer for the rest of my life, whether that is one year or 30 years. The dance of trying to keep it at bay. The dance of wondering if it’s coming back. The dance of dealing with it if it—or another kind of cancer, for which I am at increased risk because of the treatments I am getting today—appears.

He has no idea that even as I sat there on my hospital bed, talking with him, I am facing financial ruin. Not facing it in an abstract way, but in a very real, tangible way. I cannot pay my medical bills. I will have to take bankruptcy eventually. Again. I probably should sell my property and move closer in to town. But I’ll probably never be able to buy another place because getting a loan will be too hard because my employment prospects look very, very dim. This will mean I’m going to be at the mercy of ever-rising rental prices as my income prospects become very constricted. I am facing a declining quality of life as I age, thanks to this cancer and the costs of fighting it.

In order to do their work, I think, people who work in the cancer industry need to NOT know these things about their patients. It would be too debilitating for them, if they acknowledged these things… if they acknowledged the wholeness of their patients’ lives. Instead, they need to see their patients only in terms of the patient fragment that they, themselves, are trying to manage. And even then, they have to wear blinders.

My oncologist was enthusing yesterday about how far treatment has come for IBC in the last 30 years. Julian has enthused repeatedly to me about what great hope modern cancer treatment offers for someone with IBC as compared to what was available only a few short decades ago. They look to the past and they look at the present and they are proud. They marvel at how far we have come. And they are proud to be a part of that.

I adopt the same perspective-taking tool and come up with a very different picture. I look at my past and I look at my present and I am appalled. I know that in terms of cancer-free survival, my prospects today are much better than they were 30 years ago. I gratefully acknowledge that.

But I also know that just a few short weeks ago I had hair. Now I don’t. A few short weeks ago I had the energy to do what is necessary to maintain my property and do my job. Now I don’t. Even sitting at the computer tires me. A few short weeks ago my feet didn’t hurt when I walked. Now they do. A few short weeks ago my bone marrow wasn’t so compromised that I couldn’t fight off even a simple infection. Now it gets so compromised that I have to be hospitalized. A few short weeks ago, I didn’t get winded and have my heart race when I swept my sidewalk. Now I do. A few short weeks ago, I had no reason to think that I might have serious heart problems as I get older. Now, thanks to the treatments I am getting, that is a possibility for me. A few short weeks ago I had two breasts, a full set of lymph nodes on each side, and no prospects of suffering from lymphedema—or having to work constantly to manage it, or, God forbid, wear a compression sleeve—for the rest of my life. Now I face the certainty of losing a breast and a whole set of lymph nodes and, given the number of lymph nodes I will lose, the very real prospect of having to try to manage a debilitating, chronic condition for the rest of my life. Including the need to wear a damned compression sleeve in a climate like North Carolina’s!

And all of this is caused by the cancer treatment. Not by the cancer.

Oddly enough, none of these things make me happy. Go figure. I just cannot toss these things off as “oh, no big deal”—as sanguinely as my oncologist seems to. As Julian does.

A few short weeks ago if I lost my job, I had every reason to believe I could get another because I was healthy and energetic and could work 40 hours a week or more if necessary. Now I am none of those things and if I lose my job, I am unemployable. A few short weeks ago I thought that the modest property I bought four years ago would be where I would live until I retired and then I eventually died. Now I am contemplating having to sell the property, being unable to buy another because of my compromised employment status, and becoming once again subject to the whims of the rental market at a time when my income status is declining. A few short weeks ago I didn’t have unmanageable medical bills. Now I do.

When I, as a patient, adopt the same “compared to the past” perspective as my health care providers, I have a very different kind of experience than they do. I think they fail to appreciate this about patients.

The one thing that my health care providers (and Julian) and I agree upon is what my future would look like if I did not treat this cancer. I would die. Short of a certifiable miracle, I would die, and die soon.

I am grateful for the chance I have to live. The chance.

But here’s the difference. My health care team (and Julian) looks backward at how far cancer treatment has come and then sees me, as a patient, as someone with the happy chance to live into the future. That’s the end of the story for them. That’s all they can probably afford to see, because the emotional and cognitive cost of seeing any more than that would be too great for them.

I look backward at what I had, and I see—I have to live with—what the cancer treatment is costing me both physically and financially today. Right now. And I look into a personal future that is much, much more nuanced than my health team’s happy-face, monochrome picture of “survival.”

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I am not saying that the Emperor (modern cancer treatment, the American Cancer Society, etc.) has no clothes. I am saying that the Emperor’s clothes are not nearly as fine as he pretends that they are. That the resources he has for taking care of those people who find themselves becoming citizens of his kingdom are not nearly as wonderful as his ministers and deputies want to make the public believe they are.

From a patient’s point of view, it’s like being a citizen in a developing nation where the top people have one view of what it’s like to be a part of that state (“Look at how far we’ve come; we’re not at the bottom of the third-world barrel any more!”), while the masses have another experience entirely (lots of people still having a third-world experience of life in that country).

If you’re going to be a minister, a deputy, then you probably need to believe the things you say. You probably need to have that truncated vision of where your country has come from and where you are at the present, in order to promote your country to the rest of the world and try to garner some international respect. Maybe you need to have that truncated vision because it would be too difficult to see the masses in their individual lives and know what they are having to deal with as citizens of your country.

But this kind of gulf between the rulers and the people is not healthy. At least, not for the people. The current rigors they must endure are not “no big deal,” and what the rigors of today mean for them in terms of the prospects for their individual futures cannot be summed up in the single, global, happy thought of “survival.”

Life is just not that simple. Life with cancer, even less so.