Archive for February, 2012

posted by Amy on Feb 25

A little over a year ago I began to notice some breast changes. There was a small, flaky lesion on my nipple. Then I began to have some discomfort which I blamed on the underwire of my bra. I actually threw away one bra, thinking it was the cause of the pain. Then I noticed that the left breast was slightly larger than the right breast. That scared me, and I wrote about it in my journal, but it took awhile to pick up the phone and make an appointment. There was no lump.

By the time I got into a doctor’s office I had decided the flakiness might be eczema. I get it on the palms of my hands, so I know what it looks like. In fact, the PA gave me a referral to a dermatologist, who told me that was what it was and gave me medicine that cleared it up in a few days. But she also said I should go in for a diagnostic mammogram, and I scheduled that for April 5. That is a three-step process, involving a set of pictures with the regular paddles, another one with smaller paddles and more compression, and ultrasound. They found a “mass” in the left breast, one lymph node in my left armpit that the radiologist said was “a little too fat,” and calcifications in the right breast. They scheduled me for biopsies two days later.

The radiologist (the same one who had done the ultrasound) was now calling the “mass” a “tumor,” and told me I’d be getting surgery. I asked how big it was and she said “about one inch.” At that point I knew it was cancer. I was numb. It seemed unreal. I had to wait a week before I could go sit down across from my primary care doctor at BU Student Health and hear the words “invasive ductal carcinoma” and “atypical dysplasia.” The one “fat” lymph node also had cancer cells in it.

My doctor was very sympathetic. She told me she had been through it herself, and had had a bilateral mastectomy. You can’t help it. Someone tells you that, and you glance down at her chest. She had breasts, or appeared to. She said, “You have a fight ahead of you” and gave me a card for the BU “behavioral health” department. She also gave me a pamphlet about taking a leave of absence from school.

Somehow my mind had made room for other possibilities, though I could not imagine what they might be. Yes, it was cancer. Cancer. That was April 19. I had my first meeting with the breast cancer “team” at my hospital a few days later. Getting a diagnosis was surprisingly unhelpful. So was meeting the “team.” There would be more tests to complete the “staging,” then chemo, surgery, and maybe radiation. I got a book and a folder full of pamphlets. I was barely processing what I heard.

After a breast MRI and CT scan I was called in again in early May, this time to meet just with the breast surgeon. She said the bone scan was clear, but there were a “couple” of spots on my liver and lungs. They’d need to biopsy the liver, and if that was benign or inconclusive then they’d biopsy my lungs. She tried to talk me out of taking a trip out of town that she had previously said I could take. The liver biopsy was scheduled for May 17, after I got back.

The radiologist who did the liver biopsy said the lesions had shrunk. He even asked me if I had started being treated. He said the target was so small he wasn’t sure he had gotten a good sample. That made me feel a lot better. Surely it couldn’t be cancer if it was healing on its own.

A week later I called to get the results. My oncologist asked me if I could come in the next day to talk about it. I was in DC for my daughter Lily’s graduation from Georgetown, so no, I couldn’t be there the next day, but I could be there in two days. I asked her to tell me what the test showed. She hesitated, then said there were cancer cells in my liver, but that the cancer would be “very manageable.” Another shock. Stage IV. All I knew about Stage IV was from a drawing in the book the hospital had given me. It said breast cancer can spread anywhere, but especially to the bones, brain, liver and lungs. It showed the outline of a woman with ugly black blobs in those areas.

When I met with the oncologist she told me my cancer was HER-2 positive, and that there’s a medication called Herceptin that uses a monoclonal antibody that can help my body fight the disease. Then she talked about various other drugs we could use along with the Herceptin. I opted for Taxol, a harsh but potentially effective cytotoxin. I figured it was my best chance to knock the cancer back. She told me we’d be trying for “permanent remission, normal lifespan.” I liked the sound of that. She said I’d do twelve weeks of Taxol and Herceptin every week, then get just Herceptin every three weeks until it had been a year.

I just saw my oncologist last Wednesday. She left it up to me to decide when to get another scan. My cancer doesn’t put out tumor markers, so scans are the only sure way to monitor my progress. I said I’ll wait until May. She examined me and said everything looks good. I knew that. I feel fine. I have plenty of energy. My brain is working fine. I am sleeping well. My vital signs are good. I have no complaints.

As I was leaving I said, “If I didn’t know better I’d swear I was in perfect health.” She said, “You might be in perfect health.”

I know this: my wholeness goes beyond my physical condition. My life is meaningful, good and full no matter how many more years I get to live. Healing in the sense of peace, acceptance, and feeling held securely in God’s hands does not depend on my being disease-free. There is freedom in that. It is a strange freedom, but quite real. No one wants to die, but we all will. I know more now than I did a year ago about the likely path my last years will take, though I don’t know when that phase will start. Apparently I have knocked the cancer back. It could even be permanent, though it’s too soon to tell. So cancer rides around on my shoulder. Like all the other demons I’ve faced down, I’m trying to make friends with it and find out what it has to teach me. Anything you put energy into opposing directly can end up owning you. It can deprive you of the joy of living without laying a finger on you. Rehearsing all the possible outcomes or recollecting past trauma can be a kind of living death. I don’t want that.

Last Friday I learned that I have been accepted into the ThD program at Boston University School of Theology. I am waiting to hear from two other programs, though I’m pretty sure this is the offer I will accept. I’m going to study social ethics. If I do the ThD through the seminary I will minor in evangelism. I want to teach pastors, social workers, teachers and others who work in under-resourced neighborhoods how to be change agents.

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