Rae Armantrout: "What is it like then to be told that you have adrenal cortical cancer, a disease so rare you have never heard of it and from which you will probably die?"

Rae Armantrout has written this three part piece about her experience with a rare form of cancer.

Armantrout wrote the piece for Lybba, a "501c3 nonprofit, creating an online and mobile community where patients, clinicians, researchers, and policymakers can develop evidence-based models of care, cultivate community, and drive insights faster to improve the health of individuals."

The essay documents Armantrout's experiences being diagnosed and ultimately overcoming the disease, material that her Pulitzer-prize winning book Versed also explored:

I will be presenting my own case history, both objectively, to the extent that I can, and subjectively. When we think about other people’s subjective experience, we ask ourselves what it’s like to be them. What is it like then to be told that you have adrenal cortical cancer, a disease so rare you have never heard of it and from which you will probably die? What is it like to discover this when you have been feeling no pain, feeling, especially well even? That is the situation I faced in June of 2006. In the months following my diagnosis, I tried to describe the experience, to say what it was like, in poetry which was later published in a book called Versed (sometimes confused with the anesthetic Versed) and now, in a different way, I will try to describe it here.

In the spring of 2006 I started to notice some slightly disconcerting changes in my body. I was growing a little mustache, just stubble above my lip. I was more annoyed than alarmed. I thought, well, this must be one of those things that happen to post-menopausal women. I’d seen women with hair on their faces before. On the other hand, I have never been particularly hirsute. What was even stranger was that, were my eyes deceiving me or did I have more hair under my arms than before? One day my husband said something about the facial hair and I started having electrolysis, trying to deal with the symptom, not the cause. I knew I must have some sort of hormonal imbalance, but I didn’t imagine, consciously anyway, that it could be anything serious.

The reason I say “consciously” is that during that period, I began to have rather ominous dreams. I often write dreams down and sometimes use images from them in my poems. During the months before my diagnosis, I recorded a dream about being presented with a dollar bill for every year I would live and counting the money. I don’t remember reaching the end. I must have woken up. I also had a dream about being towed out to sea in a little boat and left there. Do I believe in precognition? Not really. But I think it’s possible that your body may sometimes know more than your conscious mind does.

Finally I went to my general practitioner hoping that she could prescribe something to rid me of the facial hair. I had another irritating symptom too. My eyes were constantly watery. I’ve never heard that symptom officially associated with my disease, but it disappeared immediately after my surgery and has not come back. To her credit, my GP immediately ordered a blood test. It showed that the DHEAS in my blood, which should top out around 130 was, in fact, at 4000. Clearly, this was very wrong so a CT scan was ordered. My doctor told me not to worry. She suspected I had a benign tumor on my adrenal gland.

After a harrowing trip to a first hospital, Armantrout was told she wasn't in imminent danger, which was good both in the obvious but also in that she was able to find her way towards specialists.

There’s a part of my case history that is particularly unorthodox. Sometime before my appointment with the surgeon, I spoke with an old friend of mine, an emeritus professor in Literature. He told me that a friend of his, who happened to be a radiologist here at the university, was close to an oncologist in private practice, a Dr. Nigourney, who had a clinic in Long Beach. Dr. Nigourney was prescribing chemotherapy based on what’s known, if I remember it right, as “chemical assay.” In other words, Dr. Nigourney was asking patients to send samples of their tumors to his lab, “Rational Therapeutics,” where he presumably cultured them and tested various chemotherapy agents on them to see which drugs, if any, would kill that particular tumor. Now I know that this is not a widely accepted diagnostic technique and I know why. As one oncologist later told me, “If that worked, we’d all be doing it,” which, of course, makes perfect sense. My current oncologist says that cancer is harder to kill in the body than it is in a Petri dish. And that sounds reasonable too.

But my literary friend told me that his friend, the radiologist, was having his own cancer treated with drugs suggested by Dr. Nigourney. Given the very discouraging things I’d read about my cancer on the internet, I was willing to take a chance. The fact that a radiologist apparently vouched for Dr. Nigourney made me feel like this approach couldn’t be a complete hoax. That radiologist, whom I won’t name, has since died – though I’m told he died not of his cancer, but of an infection. Who knows? But I’m getting ahead of myself. I want to tell you first about my experience as a patient.

My husband accompanied me to my appointment with my surgeon. She impressed us as confident, upbeat, almost strangely so. I’d even say that she seemed enthusiastic about my tumor. She pulled up my scan on her computer and asked if I wanted to see it. I declined. I did ask which side of my body it was on because, oddly, I couldn’t feel it at all. I was not in pain and the tumor, which was under my rib cage, couldn’t be palpitated. It was on the left side, too near my heart and my arteries for comfort.

Dr. Salem discussed the difficulty of the operation the way an athlete might discuss a coming tournament. When I asked, wishfully, if it might still turn out to be benign, she said, “It doesn’t matter what it is because I’m going to get it all.” And, amazingly, she seems to have done just that. I asked her whether she would be willing to preserve a slice for Dr. Nigourney’s assay and she said she was willing if that’s what I wanted to do.

And then, post-surgery:

The first thought I remember having when I woke up from surgery was something like, “Oh damn, now I have to die of cancer.” I imagined a drawn out, painful death. At that moment, my surgeon walked in with my husband and son. I asked if she had gotten it all and she said she had. We made arrangements for a friend to drive the tumor slice to the lab in Long Beach on ice.

I was sent to the ICU and I took a notebook with me. Writers write, I told myself. It was a core part of my identity. Of course, I was on heavy pain killers and somehow, too, I had a build up of fluid around my lungs which made it difficult to breathe, but I did take notes. In fact, I started a poem called “Own” there which ended up in my book, Versed. There was plenty of material at hand.

The first section of the poem quotes something I heard. It goes, “Woman in a room near mine moans, “I’m dying. I want/to be fine! It’s my body/Don’t let me! Don’t touch me!” Maybe doctors and nurses hear things like this all the time, but, in my condition, the woman’s irrational desperation resonated through me. I thought that might be me in six months or a year. Of course, I don’t know if she was actually dying or if she was just hysterical. The nurses seemed to find her irritating.

And, then, finally, release from the hospital:

I was released with appointments to see an endocrinologist and an oncologist. The endocrinologist was a nice young resident. I don’t know why I wasn’t referred to a more senior doctor. She seemed to be mainly concerned with monitoring my cortisol level. Meanwhile, I was focused on my first visit with the oncologist and with beginning some sort of chemo regimen. The oncologist, however, explained, on my first visit, that, although it was natural for a person in my position to want to take action, there was really nothing to be done. There is no chemotherapy agent known to treat adrenal cortical cancer. A drug called mitotane is used on the cancer, but it hadn’t been proven effective in an “adjuvent” or preventative setting, he said. I heard “There is nothing I can do” as a death sentence which, of course, I didn’t want to accept.

By this time I had received a written report from Dr. Nigourney’s lab. Apparently Gemzar and Taxoterre had been effective against my tumor cells in the laboratory. But the university oncologist was presenting the mainstream position. Such analyses, he said, might tell you that a drug wouldn’t work, but not that it would. I don’t blame him at all for this, by the way, though it wasn’t what I wanted to hear. Still, I decided to get a second opinion. At the time, I thought this first oncologist was a rather detached, even cold person – but I later learned that such was not the case at all. I asked you at the start of my talk whether you could imagine what it was like to suddenly learn you have a deadly cancer. It turns out I needed to learn more about what it’s like to be an oncologist.

It's fascinating, frightening and well worth your time.
(Sidenote: We're glad you're still here, Rae!)