Thread by @healthy_scept

🧵 To conclude our celebration of #AudreLorde’s 87th birthday we are now tweeting excerpts about her #livedexperience with and politics on metastatic #breastcancer fom “A Burst of Light” (1988). #bcsm #bccww #histmed #twitterstorians #BlackHistoryMonth #lgbthistory

“A Burst of Light: Living with Cancer"

The year I became fifty felt like a great coming together for me. I was very proud of having made it for half a century, and in my own style. “Time for a change,” I thought, “I wonder how I’m going to live the next half.”

On February 1st, two weeks before my fiftieth birthday, I was told by my doctor that I had liver cancer, metastasized from the breast cancer for which I had had a mastectomy six years before.

At first I did not believe it. I continued with my previously planned teaching trip to Europe. As I grew steadily sicker in Berlin, I received medical information about homeopathic alternatives to surgery,

which strengthened my decision to maintain some control over my life for as long as possible. I believe that decision has prolonged my life, together with the loving energies of women who supported me in that decision and in the work which gives that life shape.

The struggle with cancer now informs all my days, but it is only another face of that continuing battle for self-determination and survival that Black women fight daily, often in triumph.

The following excerpts are from journals kept during my first three years of living with cancer.

March 18, 1984 En Route to St. Croix, Virgin Island
I’ve written nothing of the intensity with which I’ve lived the last few weeks. The hepatologist who tried to frighten me into an immediate liver biopsy without even listening to my objections and questions.

Seeing the growth in my liver on the CAT scan, doing a face-off with death, again. Not again, just escalated. This mass in my liver is not a primary liver tumor, so if it is malignant, it’s most likely metastasized breast cancer. Not curable. Arrestable, not curable.

This is a very bad dream, and I’m the only person who can wake myself up. I had a talk before I left with Peter, my breast surgeon.

He says that if it is liver cancer, with the standard treatments—surgery, radiation, and chemotherapy—we’re talking four or five years at best. Without treatment, he says, maybe three or four.

In other words, western medicine doesn’t have a very impressive track record with cancer metastasized to the liver.

In the light of those facts, and from all the reading I’ve been doing these past weeks (thank the goddess for Barnes & Noble’s Medical Section), I’ve made up my mind not to have a liver biopsy.

It feels like the only reasonable decision for me. I’m asymptomatic now except for a vicious gallbladder. And I can placate her. […]

If I have this biopsy and it is malignant, then a whole course of action will be established simply by their intrusion into the suspect site.

Yet if this tumor is malignant, I want as much good time as possible, and their treatments aren’t going to make a hell of a lot of difference in terms of extended time. But they’ll make a hell of a lot of difference in terms of my general condition and how I live my life. […]

If this were another breast tumor, I’d go for surgery again, because the organ comes off. But with the tie-in between estrogens, fat cells, and malignancies I’ve been reading about, cutting into my liver seems to me to be too much of a risk for too little return in terms of time.

Twenty-two hours of most days I don’t believe I have liver cancer. Most days. Those other two hours of the day are pure hell, and there’s so much work I have to do in my head in those two hours, too, through all the terror and uncertainties.

I wish I knew a doctor I could really trust to talk it all over with. Am I making the right decision? I know I have to listen to my body.

If there’s one thing I’ve learned from all the work I’ve done since my mastectomy, it’s that I must listen keenly to the messages my body sends. But sometimes they are contradictory. […]

June 1, 1984 Berlin
[…]I can’t eat cooked food and I am getting sicker. My liver is so swollen I can feel it under my ribs. I’ve lost almost fifty pounds. That’s a switch, worrying about losing weight.

My friend Dagmar, who teaches here, has given me the name of a homeopathic doctor specializing in the treatment of cancer, and I’ve made an appointment to see her when I come back from the Feminist Bookfair in London next week.

She’s an anthroposophic doctor, and they believe in surgery only as a last resort.

June 7, 1984. Berlin
Dr. Rosenberg agrees with my decision not to have a biopsy, but she has said I must do something quickly to strengthen my bodily defenses. She’s recommended I begin Iscador injections three times weekly.

Iscador is a biological made from mistletoe which strengthens the natural immune system, and works against the growth of malignant cells. I’ve started the injections, along with two other herbals that stimulate liver function. I feel less weak. […]

June 9, 1984 Berlin
[…]The more clearly I see what I’m up against, the more able I am to fight this process going on in my body that they’re calling liver cancer. And I am determined to fight it even when I am not sure of the terms of the battle nor the face of victory.

I just know I must not surrender my body to others unless I completely understand and agree with what they think should be done to it.

I’ve got to look at all of my options carefully, even the ones I find distasteful. I know I can broaden the definition of winning to the point where I can’t lose.

June 10, 1984 Berlin
Dr. Rosenberg is honest, straightforward, and pretty discouraging. I don’t know what I’d do without Dagmar there to translate all her grim pronouncements for me. She thinks it’s liver cancer, too, but she respects my decision against surgery.

I mustn’t let my unwillingness to accept this diagnosis interfere with getting help. Whatever it is, this seems to be working. We all have to die at least once.

Making that death useful would be winning for me. I wasn’t supposed to exist anyway, not in any meaningful way in this fucked-up whiteboys’ world. I want desperately to live, and I’m ready to fight for that living even if I die shortly.

For the first time I really feel that my writing has a substance and stature that will survive me. […]

August 1, 1984 NYC
Saints be praised! The new CAT scan is unchanged. The tumor has not grown, which means either Iscador is working or the tumor is not malignant! I feel relieved, vindicated, and hopeful.

The pain in my middle is gone, as long as I don’t eat very much and stick to fruits and veggies. That’s livable. I feel like a second chance, for true! […]

November 21, 1985 NYC
It feels like the axe is falling. There it is on the new CAT scan—another mass growing in my liver, and the first one is spreading.

I’ve found an anthroposophic doctor in Spring Valley who suggests I go to the Lukas Klinik, a hospital in Switzerland where they are conducting the primary research on Iscador, as well as diagnosing and treating cancer. […]

I have to consider denial as a possibility in all of my planning, but I also feel that there is absolutely nothing they can do for me at Sloane Kettering except cut me open and then sew me back up with their condemnations inside me.

December 7, 1985 NYC
My stomach x-rays are clear, and the problems in my GI series are all circumstantial. Now that the doctors here have decided I have liver cancer, they insist on reading all their findings as if that were a fait accompli.

They refuse to look for any other reason for the irregularities in the x-rays, and they’re treating my resistance to their diagnosis as a personal affront. But it’s my body and my life and the goddess knows I’m paying enough for all this, I ought to have a say. […]

December 9,1985 NYC
I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do.

I am going to write fire until it comes out my ears, my eyes, my noseholes—everywhere. Until it’s every breath I breathe. I’m going to go out like a fucking meteor!

December 23, 1985, 10:30am Arlesheim
I have cancer of the liver.
Dr. Lorenz just came in and told me. The crystallization test and the liver sonogram are all positive. The two masses in my liver are malignant.

He says I should begin an increased Iscador program and antihormone therapy right away, if I decide that is the way I want to go.

Well. The last possibility of doubt based on belief is gone. I said I’d come to Lukas because I trusted the anthroposophic doctors, and if they said it was malignant then I would accept their diagnosis.

So here it is, and all the yelling and head-banging isn’t going to change it. I guess it helps to finally know. I wish Frances were here.

I cannot afford to waste any more time in doubting, or in fury. The question is what do I do now? Listen to my body, of course, but the messages get dimmer and dimmer. In two weeks I go back home. Iscador or chemotherapy or both? […]

April 20, 1986 St. Croix
[…]And of course cancer is political—look at how many of our comrades have died of it during the last ten years!

As warriors, our job is to actively and consciously survive it for as long as possible, remembering that in order to win, the aggressor must conquer, but the resisters need only survive.

Our battle is to define survival in ways that are acceptable and nourishing to us, meaning with substance and style. Substance. Our work. Style. True to our selves.

What would it be like to be living in a place where the pursuit of definition within this crucial part of our lives was not circumscribed and fractionalized by the economics of disease in America?

Here the first consideration concerning cancer is not what does this mean in my living, but how much is this going to cost? […]

August 12, 1986 NYC
Wonderful news! My liver scan shows both tumors slightly diminished. It feels good to be getting on with my life. I feel vindicated without ever becoming complacent—this is only one victory of a long battle in which I’ve got to expect to win some and lose some

But it does put a different perspective upon things to know that pain can be a sign of a disintegrating tumor. Of course, my oncologist is surprised and puzzled.

He admits he doesn’t understand what is happening, but it is a mark of his good spirit that he is genuinely pleased for me, nonetheless. I’m very pleased for me, too. […]

September 12, 1986 NYC
[…] Making it really means doing it our way for as long as possible, same as crossing a busy avenue or telling unpleasant truths. […]

September 27, 1986 NYC
[…]I much prefer to think about how I’d want to die—given that I don’t want to die at all but will certainly have to—rather than just fall into death any old way, by default, according to somebody else’s rules. […]

November 8, 1986 NYC
If I am to put this all down in a way that is useful, I should start with the beginning of the story.
Sizable tumor in the right lobe of the liver, the doctors said. Lots of blood vessels in it means it’s most likely malignant.

Let’s cut you open right now and see what we can do about it. Wait a minute, I said. I need to feel this thing out and see what’s going on inside myself first, I said, needing some time to absorb the shock, time to assay the situation and not act out of panic.

Not one of them said, I can respect that, but don’t take too long about it.
Instead, that simple claim to my body’s own processes elicited such an attack response from a reputable Specialist In Liver Tumors

that my deepest—if not necessarily most useful—suspicions were totally aroused. What that doctor could have said to me that I would have heard was, “You have a serious condition going on in your body

and whatever you do about it you must not ignore it or delay deciding how you are going to deal with it because it will not go away no matter what you think it is.” Acknowledging my responsibility for my own body.

Instead, what he said to me was, “If you do not do exactly what I tell you to do right now without questions you are going to die a horrible death.” In exactly those words.
I felt the battle lines being drawn up within my own body.

I saw this specialist in liver tumors at a leading cancer hospital in New York City, where I had been referred as an outpatient by my own doctor. […]

From the moment I was ushered into the doctor’s office and he saw my x-rays, he proceeded to infantalize me with an obviously well-practiced technique. When I told him I was having second thoughts about a liver biopsy, he glanced at my chart.

Racism and Sexism joined hands across his table as he saw I taught at a university. “Well, you look like an intelligent girl,” he said, staring at my one breast all the time he was speaking.

“Not to have this biopsy immediately is like sticking your head in the sand.” Then he went on to say that he would not be responsible when I wound up one day screaming in agony in the corner of his office.

I asked this specialist in liver tumors about the dangers of a liver biopsy spreading an existing malignancy, or even encouraging it in a borderline tumor.

He dismissed my concerns with a wave of his hand, saying, instead of answering, that I really did not have any other sensible choice.

I would like to think that this doctor was sincerely motivated by a desire for me to seek what he truly believed to be the only remedy for my sickening body, but my faith in that scenario is considerably diminished by his $250 consultation fee

and his subsequent medical report to my own doctor containing numerous supposedly clinical observations of ‘obese abdomen and remaining pendulous breast’. […]

I made a visit to my breast surgeon, a doctor with whom I have always been able to talk frankly, and it was from him that I got my first trustworthy and objective sense of timing.

It was from him that I learned that the conventional forms of treatment for liver metastases made little more than one year’s difference in the survival rate.

Homeopathic medicine calls cancer the cold disease. I understand that down to my bones that quake sometimes in their need for heat, for the sun, even for just a hot bath.

Part of the way in which I am saving my own life is to refuse to submit my body to cold whenever possible. […]

Epilogue
Living with cancer has forced me to consciously jettison the myth of omnipotence, of believing—or loosely asserting—that I can do anything, along with any dangerous illusion of immortality.

Neither of these unscrutinized defenses is a solid base for either political activism or personal struggle. But in their place, another kind of power is growing, tempered and enduring, grounded within the realities of what I am in fact doing.

An open-eyed assessment and appreciation of what I can and do accomplish, using who I am and who I most wish myself to be.

To stretch as far as I can go and relish what is satisfying rather than what is sad. Building a strong and elegant pathway toward transition. […]"

END