Can You Ever Leave Cancer Behind?

My nurse came to my desk with information about a new patient. She was waiting in the exam room. Both parents had accompanied her to this appointment. After filling me in on her history, my nurse left, and I reviewed the chart in front of me again.

This woman was just a few years older than me which meant her parents were likely in their seventies and yet they were both present for a consult? Patients often bring a friend, spouse, partner or caregiver, but it is rare for both parents to accompany an adult for a consultation.

As I read through her chart once more, I realized why her parents were there. This was not her first time talking to a radiation oncologist.

Hidden in her medical record was “History of Hodgkin’s Lymphoma.” I dug a little deeper and realized that while I was picking out prom dresses, she was losing her hair. While I had graduated and gone on to college, she had stayed home and finished a long, tough course of treatment. When my parents were decorating my dorm room, hers were sitting anxiously in doctor’s offices, praying that the next scan would be clear.

I entered the exam room and shook hands with my patient and her parents. Rather than starting with the cancer that brought her to see me, I asked them to tell me about her first diagnosis of cancer thirty years ago.

This was a surprisingly simple request. I watched as they easily slipped back into different exam room, in a different hospital, into memories of one of the worst moments in their lives.

Her father told me about a lump on her neck and meetings with doctors and how her oncologist called them in the middle of the night. He proudly shared that his daughter never lost her appetite. Her mother remembered that no one really explained anything. They just did what they were told by the doctors and prayed that everything would work out.

Elliott San

(who I hope returns to writing Good Marrow!) watched his mother care for him during his second stem cell transplant. His parents moved to Los Angeles and stayed in a hospital room adjacent to him for weeks while he recovered:

She wore masks and plastic gowns and plastic gloves and learned all sorts of things about cellular counts and words much longer and more nefarious than “pneumonia”, all in an attempt to try and stay one step ahead of sickness. She crocheted hats for his bald head and invited him over to play cards when he was feeling up for it and braved Los Angeles traffic to drive to and from his apartment to cook meals for him.

Together, her and her husband spent hundreds of hours moving between that single door, from his hospital room to the hospital room that was their home, sitting in different chairs separated by a wall, passing the long hours staring at the same ceiling as their son until he got better.

My patient showed me the thin white scar where an excisional biopsy of a lymph node took place and the jagged tracks of where her porta cath used to be. I asked if she had tattoos, and she raised her shirt. Sure enough, there were two leveling tattoos on her sides and an off-center black mark next to her sternum.

When the patient realized that I was just a few years younger than her, our conversation paused, and the room went silent. For a moment, we all contemplated what cruel twist of fate allowed me to graduate with yearbooks full of pictures and a future bright with possibility while she and her father visited the same diner each day to eat lunch after radiation.

In that silence, I remembered a post that I’d read by

Erin Cummings

. Erin is the Founder and Executive Director of Hodgkin’s International, an organization that supports long term Hodgkin’s Lymphoma survivors, raising awareness about the late effects of treatment.

The post that I remembered read in part:

I do think about the girl that I was before cancer- before I learned life could turn on a dime, and for no reason.

That girl was guileless, intrepid, and hopelessly optimistic. She had great plans for the future. None of them included cancer.

Her body was still whole- no missing parts, no artificial replacements. The only scar she had was a small one, barely visible over her right eyebrow, from falling out of her highchair when she was two.

She had not acquired the zipper from her staging laparotomy, an impressive line resembling a tiny railroad track that ran from her sternum to below her navel.

Or the twin horizontal lines where her nipples used to be. She had yet to lose her hair, her fertility, her breasts, and, at times, her sense of self.

That girl had no idea that she would be tested, time and time again, and for decades. She also could not have known that the challenges of cancer would, ironically, miraculously, make her life richer.

Liz Giel

whose son is completing cancer treatment reflected last week on how she struggles to hold terror and hope at the same time. She experiences panic attacks while she sleeps as her subconscious reminds her that all is not well. She wrote:

But trauma sinks deep into your cells and makes itself at home in your body. It bubbles up in unexpected moments. A cancer diagnosis is a sort of cancer of its own for caregivers. There’s no way of knowing what remedies might cure it.

Experiencing such deep anguish while asleep is a new experience for me. The trauma will live inside me and disrupt my sleep as it chooses. It’s a signal that we are living in a dangerous space, working our way to shelter. It’s closer every day. I choose to believe we will stay there for a very, very long time.

Liz is right that parents and children who experience cancer live with an awareness of the precarity of life for a very, very long time. In my patient’s case, she was already familiar with the lasting impact of treating young people with cancer. She struggled with infertility, was on several medications, and had been told her kidneys were permanently damaged from her treatment. And that was before the radiation she received to her neck, chest and abdomen three decades before caused a cancer that landed her in my office.

At the end of our consultation, I handed her information on Erin’s group and promised to refer her to our long-term survivors’ clinic. Unfortunately, I told her, this was only the beginning of paying the price for those lifesaving treatments thirty plus years ago. She needed to be screened for cardiovascular disease, other cancers, lung damage, and a host of other scary sounding scenarios. I apologized that we had done this to her and promised that our treatments now carried many fewer late effects. She understood although tears filled her eyes.

Her father shook my hand in appreciation, “I’ve learned more from you than I have from any doctor in the past thirty years. I mean that, doc. And just so you know, whatever happens to her now, we’ll be here with her, and it will have been worth it. To get to spend thirty more years with my little girl.”

On my mind…

Mixed reviews on my critique of rom com’s last week. I am very much looking forward to digging in to

Littsburgh

co-founder,

Rachel Ekstrom Courage

’s new cozy mystery, Murder by Cheesecake. Enjoy and let me know what you think!