Living in the Spaces Between Words: A Cancer Survivor’s Story

It was meant to be a different kind of year. In March 1998 we said our vows, held our dreams. My first marriage at 43.

He was sick. I was well. We had a plan.

We considered and pondered his chronic illness. It was gradually absorbing days and months, but was not usually fatal. At least, not for five to ten years. A large space for us to fill.

And yet … unrelenting tiredness in my body. My blood test results a week after our wedding.

A new word for my life: tumor, then a stream of other unexpected words. On the ovary. Large. Abdominal surgery. Benign or malignant and its first cousin, malignancy. Hysterectomy and oophorectomy.

Cancer arrives with a lot of words ending in the letter y.

But it was a benign cyst. Large.

We celebrated in April. Holding my hand over the freshly healing incision I re-read the initial ultrasound report.

“A large complex cystic and solid mass is seen, deep in the pelvis lying posterior to and to the right of uterus … The mass measures at least 6 x 10 cm in diameter and is rather difficult to measure due to its heterogeneous nature and shape. The uterus is unremarkable. IMPRESSION: Large complex cystic pelvic mass. This could represent a large dermoid cyst.”

May 1998, the blossom trees were like a party on every street. It was before patients could see a digital picture of exactly how the body was attacking itself. Instead, an opaque medical report dotted with the word “large.” I learn that in medical lingo, “unremarkable” is a good thing.

(More than 20 years later, I get out a ruler and look at 10 centimeters and 6 centimeters and imagine that inside my body. I am glad it’s gone.)

June 1998, the longest day of the year arrives. Yet my recovery is sluggish. Trips to another specialist. Then delays.

More unfamiliar words arrive: mammogram, biopsy, false positive, invasive or noninvasive, carcinoma.

A memory emerges of my 40th birthday. A trip to my then-doctor in a different town to say, “Please may I have a mammogram, just to be sure.” “Oh no,” she says, looking over the top of her glasses, holding up three knowing, well-trained fingers and tapping a reason on each one: “You are healthy, you have no family history, there is no need.”

Three years later in July 1998, waiting for results after a startling, burning biopsy. Holding onto those words: healthy, no family history, no need.      

August 1998, when one season begins its slow, subtle flow into another, the words I didn’t want finally arrived. For the second time, a large tumor has appeared.

The surgeon’s call: “Surgery is necessary … breast cancer … a significant bottleneck at the hospital for operating rooms … staffing issues … yours is a priority case … could be two weeks.”

Riding a wave of tears.

Cancer connects and disconnects. Before cell phones, sad words go to my father and stepmother. They temporarily move to our city and stay very near, very present, very careful.

Waking in my hospital bed with tubes and throbbing, my husband is silently holding my hand and the surgeon’s painful words: “very sorry … dark prognosis.” My spouse did not give me those words for some time. In September 1998 as the leaves prepare for descent, he chooses space and grace. Later, he tells me a little, part of the truth. The rest he keeps inside his prayers.

My kind and sturdy oncologist says: “We are going to give you just the right amount of chemo. Not enough to kill you but as close as we can, to reach all the cancer.”

I meet the thoughtfully assertive oncology nurses: “You have to take charge of your health – for the rest of your life. No one can do that like you.”

Then the bright scarlet chemo drugs flowing in and trashing my veins to save my life.

Nurses make me focus on survival, on living beyond the cold ache in my arm, somehow helping me not to notice the hazmat gear they wear when handling the medications.

A card from my best friend. “I know you need help to get through this illness. I am not that person.” Remembering that her mother, with whom she’d had a difficult and unresolved relationship, had died of breast cancer. Like a lunar tide my friend was gone, never to return.

Oh no, please no. My husband and mother now have their own cancer words in October 1998.

Cancer generates schedules. Such as the ideal time for the next chemo treatment, right at the sweet spot between me being too weak to tolerate it and the cancer growing again.

My stylist cuts off a foot of hair to relieve my tender scalp. Then another appointment in a week where in a back room he gently shaves off what is left because my scalp is on fire, quietly handing me tissue after tissue. My husband shaves his head that night.

Time to meet the oncologist, who reviews my blood counts and tweaks chemo to not kill me. After four treatments, she says all too perkily: “We are very pleased with your progress because most patients on this treatment regimen are hospitalized – a lot.” Her words are a surprise.  

Time to see my counselor, to coax me through another week of inner darkness brought on by the drugs. He tells me about a book, Full Catastrophe Living. I wish I was not a candidate for such a title.

My husband’s chemo treatment (in a different city) is timed so that I can be strong enough to accompany him.

When my mother can sit with me during chemo – a difficult companionship at best. When she comes, I am stunned at how tiny she is, how the cancer still growing in her has consumed her body. She flits about like a hummingbird, her words like tiny jabs.

When my father can be with me during chemo – he comes only once because he is fighting desperate tears.

When other loved ones and friends can come and see us – they are unfailingly dumbfounded at my puffy face, my bald head now too sore even for a hat, and my shuffling body.

Cancer pushes and pulls. In the light-filled medication room, a blonde woman probably in her 50s is across from me. Her blue eyes look all around the room of chemo warriors, brimming pools of fear. Nurses try to find one vein in my arm that still functions.

Words swirl in my befogged mind.

My family doctor with her steadfast gaze and healing touch: “Think of the infusions not as your enemy, but as an ally in the battle, defeating an invading army cell by cell.”

All of the clinicians in my circle of care, with skilled words and eyes that urge me to reach, strive, keep trying: “Welcome and work with the drugs.” The drugs … such a horrible feeling in my arm, in my body, my mind.

My counselor Michael, salt and pepper hair, unhurried encouragement: “Own this journey. Walk deliberately down into the dark valley into a place without answers. Carry your peace and your faith.”

The dread on the blonde lady’s face is unnerving. I offer a smile – the only act of kindness I could muster – and she looks away. I feel the pull of her riptide.

Cancer is about numbers. The size of a tumor, in centimeters. How many tumors. How many nodes. What stage. The lower number, the better.

How many lymph nodes were “involved.” To me, “involved” had always enjoyed a warm, personal meaning: she was involved in a book group; he was involved with a new flame; they were involved in volunteer work. Now, contending with my lymph nodes being “involved” with cancer. I think of a better word for medical reports: “invaded.”

The more invaded nodes that are cancerous, the lower the survival rate.

The nodes – my nodes. Many words were shed over my nodes. The surgeon: “Enlarged, at least four, more likely six, could be nine, I am so sorry, this is a very bleak prognosis,” my husband collapsing on the floor of the recovery room. Later, the examining pathologist disagreeing. My oncologist siding with the pathologist. I was rooting for three invaded nodes.

My oncologist: “Let’s not focus on defining the numbers or the stage of cancer but rather on the best possible treatment and recovery.” Yes, lets.    

Summer 1999, I continue surviving. Gathering medical records – a report written by my oncologist:

“Mrs. Hoy is a very pleasant 43-year-old lady with a T2 (2.8 cm) M1 (4/6 notes involved) M0, infiltrating ductal carcinoma of the left breast treated with lumpectomy and axillary dissection in September 1998. Completed six cycles of CEF chemotherapy in April 1999 and current therapy consists of Tamoxifen. Radiation completed on May 19th. Mrs. Hoy was last seen on August 16th and was doing quite well except for some minor arthralgias post-chemotherapy … Socially Mrs. Hoy also has a number of things that are of concern to her and she is seeing Michael Boyle.”

(I get the ruler again and look at 2.8 cm and am glad it too is gone.)

Cancer is about words with unseen poundage.

“Minor arthralgias” …  evolved to nearly crippling joint and muscle pain that lasted several years.

“A number of things that are of concern” … the deteriorating condition of my husband, the terminal prognosis of my mother, and the emptying of savings and retirement accounts.

Other words float in, glimmering feathers. Words of energy and survival, courage and encouragement, optimism and grace, realism and hope.  

From Michael, my counselor, a much-needed source of support and wisdom. With him, navigating tricky emotional waters as my mother and I bridged our long estrangement. He says the valley of despair will be hard, very hard, but I am strong enough for the path across. A powerful listener.

From the many doctors, nurses and other clinicians at the cancer center – magnificent, compassionate professionals, for all they do and say.

From work colleagues, a deep well of kindness, sending me cards and financial help when bankruptcy seemed real.

From friends, earthbound angels. From my sister, angel with a wounded heart. So much given.

Like open fields after a tunnel. Expanding my limited capacity to bear such burdens.

Winter 1999, gardens are settling, quiet, the earth sleeps. We move to a city with better care for my husband. Away from my family, friends, colleagues. His chemo stops working. At the hospital, visits from our new pastor, his face caring, sad. He asks how I am and his words surprise me.

Soon I find a job. My sister calls. “There is no more treatment for mum. She is going into hospice.”

My hair is now three or four inches long. My arms still throb and are hypersensitive to touch. My knees crackle and grind and ache on stairs.  

February 2000, the foamy grey sky of my new city overflows with drizzle. My 45-year-old husband goes into long-term care, because the insurer won’t pay for hospice. His young age animates staff caring for inhabitants draped in years. Many quiet prayers are said. Family comes. Friends join us and sing for him, now in a coma. We sit in the way of sorrow, without words. I stroke his hand.

The impassive supervising physician: “The love we are seeing, we don’t see. People who come here are abandoned. I want you to know we are deeply moved.” His eyes fill. Mine overflow.

Cancer locks and unlocks. My partner of two years is gone that month – the 18th. His last breath faltering, softer, silent. A physical sensation in my chest, a ripping, then a wail that hits the ceiling. A nurse rushing in, grabbing me around the waist, holding tight. The sound, so strange, stops.

Love keeps pouring into my ailing spirit. My hair is longer, but I can’t afford a haircut.  

Late February brings my sister’s birthday then mine.

My sister calls. “Mum is in a coma. She woke up on my birthday and I think she is going to wake up on yours. I think she is waiting for you. Can you come?”

I delay my husband’s memorial. In my car, driving eight hours, so exhausted. The boss not happy about more time off. Seems angry my husband and mother are dying. I want to say, “I didn’t know! I hoped for better!” but I am spent.

Mum wakes up on my birthday. I stroke her soft hair. Her words are garbled, but her lovely green eyes are what I know. I have a few words, not many. They are pulled away into an ocean of unsettled problems. Dwelling in the sadness, I sit. A friend shelters me that night.

Mum is gone the next day, flitting out of her wounded body. My soul feels like cement.

At her memorial in March I talk about her strength, her creativity. Days later at my husband’s memorial I talk about how he loved life. His beautiful music, gifted hands. How darkness can only exist where light allows it to be.

Cancer brought me into the valley. Love brought me out.

I continue to survive in the spaces between the words. The places where life flows completely undeterred by expectations.

About

I'm an author, poet and survivor. A late bloomer, I received my undergraduate degree at 64 and my memoir will meet the world on May 6, 2025, just a couple of months after my 70th birthday. Poetry is often my wayfinding tool through hard experiences. I am a survivor of childhood abuse and of life-threatening illness as an adult. Currently, I live with a chronic condition. You can learn more about me, my book, and my poetry at angelahoywriter.com.