Johanna’s Story: When Breast Cancer Comes Back

Johanna’s Story: When Breast Cancer Comes Back

The first diagnosis is terrible enough.

You are thrown underwater. The words “You have cancer” become a dark sea that tows you down, down, down, until friends or family or a kind doctor or nurse pulls you up for air. At the surface, you gasp for the stage and grade of it, you gasp for the treatment plan. There is no time to float. Then despair might hit, and you’re back under, to be revived again and again, bit by lung-filled bit, as the days and appointments pass.

And at some point the shock fades and the routines of scheduled chemotherapy, or daily radiation, or surgery recovery and physical therapy coat life in a sense of calm. I’m doing something, you might think. We’re taking care of it. Trust the doctors to see a way forward. Trust the nurses to inject the drugs slowly, with such care. And they do. And if you’re like me, after 8 months of this grueling process, your eyes refocus, turning back to the outside world – the landscape of your life – and you consider your return to work, to health, to the life your body used to inhabit.

Yet it’s different after cancer. In my case, my priorities shifted. I loved my job but a new undertow of fear lingered and could not be distinguished from the ground that was there before. Each headache, each back pain quickly spiraled into a vortex of possible lethalities: Is it bone metastases? Has it spread to my brain?

Even so, life eventually settled. I continued on “as if,” each morning’s wary body scan turning slowly into renewed trust. Maybe I’m a lucky one, I’d think to myself. Maybe mine won’t come back. A full year passed with no evidence of disease. Remission. Freedom. I began saving for retirement again. My husband and I planted tulip, daffodil, and paperwhite bulbs for the coming spring.

I returned to running.

A few months went by. And then I began experiencing an odd shoulder pain that lingered for longer and longer durations. It felt odd, nervy somehow, a displaced throb not attributable to muscle or bone strain. I called the oncology nurse to report it, and her first words were worried: “Uh, oh.” My feet returned to water, my arms felt like stones.

My yearly MRI was scheduled. Time turned into fragments.

The phone call came.

We’ve found a mass, said the doctor.

A follow-up CT scan is this week.

The results: 5 cm. Near the right rib, a hair’s breadth away from the original radiation field.

We’ll need a biopsy.

And the results were swift and sure: malignant. Cancer.

The cancer had returned. It had come back. I was barely recovered – a little over one year out – from the previous treatment, and the breast cancer, the same aggressive type (triple negative) had returned.

I felt terror. I felt the camera lens of my life – the aperture – closing for good. I thought: This is it. I’m going to die. My husband and I curled up together in the early mornings and wept quietly so our teen daughter would not hear. Despair sucked each step, each breath into worthlessness. Grief smothered our house.

Being diagnosed with a recurrence was much more difficult for me than the initial diagnosis. For starters, there was no longer the illusion that my treatment was “one and done.” A second incidence of cancer was evidence that the disease was likely here for the long-term, and that the rest of my life would require living with it. Yes, there could be periods of remission, but cancer had now become the baseline to which my body would probably return. In other words: I was now, or likely would be, a chronically ill person, and odds are that I would die of this disease.

The enormity of this understanding is not to be minimized.

This may strike some as a pessimistic view. I do not want to eliminate or rule out the possibility of long-term remissions or lifelong cure. These can, and do happen. Yet I am also a believer in science, in research, and in understanding the real, evidence-based statistics of medicine. And I know my odds aren’t great. This is not as bad as it sounds. Having this information helps me plan and gives me the drive to seek clinical trials and better health.

After the recurrence, I was also less resilient. My enthusiasm to fight was deeply taxed, fatigue from my first treatments still lingered, muscle stiffness from the mastectomy still caused some pain, and friends and family were tapped. The meals, rides, and support from my first diagnosis were wonderful, and so wonderful that I resisted asking again. Caregiver burnout is real. Life had gone on. My husband and I turned inward. We quieted, did not talk much about it. This felt right to us. And given my depression, our silence eased some of the pressure to interact and “stay strong.”

With the recurrence diagnosis, the treatment options narrowed. I’d already taken the chemotherapy “big guns” of Adriamycin, Cyclophosphamide, and Taxol in my first round. I’d already had a mastectomy and 21 lymph nodes removed. I’d already had radiation. It wasn’t possible to radiate this area again, and the original chemo drugs had reached their limit, so a different set of medications (Xeloda and Taxotere) was prescribed.

They worked briefly, shrinking the tumor by 1 cm. Then they stopped working at all.

The last option was surgery.

And the last few months of my life have been spent recovering from it. One rib was removed, a part of my back muscle was taken out, and the loss of mobility is palpable. Daily I pull the red, yellow, and blue bands of physical therapy, press the walls, and stretch and knead my tendons in order to get the strength back. Slowly, my right arm and shoulder are warming to movement. And if some stiffness, some pain is the price I pay for life, it is a cost I gladly pay.

I want to say, “It will be all right.” I want to reassure myself that a recurrence isn’t terrible. But one thing cancer has taught me is to tell the truth. And so I must confess: the recurrence was terrible. My survival odds have gone down. My future feels shadowed. But I also know (as we sisters and brothers on the cancer pendulum know so well), that the same momentum that brought you through cancer the first time can take you to the next, and the next, and the next.

Lebanese poet Khalil Gibran wrote:

Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."

But I say unto you, they are inseparable.

Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

The field of kindness doesn’t die. Summon it. Your strength is deeper than you know.


Johanna, blogger at

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