Winter 2025 - Vol. 22, Issue 1

"Something is not quite right" became impossible to ignore, a dripping faucet in the back of my consciousness, a bullhorn blaring while I worked or cooked or wrote or tried to fall asleep. It never let up, growing ever louder. So strange; I have had excellent health my whole life. But here I sat on an exam table. It was just the beginning.

***

Monitor beeps, voices, footsteps penetrated the fog and I realized the procedure was over. I inventoried my body, noting the IV still in my arm, relieved to feel no pain. I tried to see, but my eyes wanted to stay closed. Coaxing them open, I was surprised to see the surgeon peering between his green cap and white mask, appraising me as I swam back to consciousness.

The plan had been an in-depth examination and removal of the offending lump of excess flesh that had already been identified. I would recover, go home, and re-enter my life.

I heard my own voice. "Did you get it all?"

I felt him pat my knee, then heard a response that made no sense: "We’ll talk when you wake up a little more." Because of hospital's COVID-19 protocol, I was left all alone to process his words.

I was about to be dragged to a strange land where I did not want to travel. Down this rabbit-hole, nothing made sense.

For the next eight days, “I’m sure it’s nothing” was my mantra, an incantation to ward off evil. I repeated it often. It did not work. The biopsy result was not good news.

I was about to become a cancer patient.

***

'Informed consent' is fiction. The requirement for a signature on a form is fact. No signature, no treatment.

Descriptions of possible complications or long-term issues are confusing and inconclusive, with clear information and straight-forward warnings hidden or understated. Yes, there could be lasting effects, some of them serious. But, “Each patient is different. No one can predict your individual outcomes" wards off liability if the worst happens. So much for 'informed.'

Anyway, for most patients side effects are manageable, minor, may not even occur. Why worry about them when you have no real choice? Don’t agree to the risks, move from curable Stage II to Stage III, then Stage IV, and I will die. Oh, right, this could happen anyway; that caveat is hidden in plain sight among the verbiage of that signed 'consent' form. And while I stand vigil for the recurrence of the cancer, I will get to live with residue from treatment.

Did I give informed consent? I signed the form, of course. Considering my emotional state when I was making so-called reasoned decisions about my care? Sure. In medical records, documentation is reality.

***

I have a bone-level, childhood-conditioned reluctance to talking about my body or having it examined. Imagine my dread of discussing internal functions and undergoing prodding inspections by myriad doctors who now inhabit my personal space. This is the stuff of nightmares. While the physical intrusion is unpleasant, painful, and frightening, the psychological invasion is horrendous.

Excising my dignity was among the first procedures performed. It turns out that self-conscious modesty has no survival value.

***

I met my medical oncologist and my radiologist on separate appointments two weeks apart. They had to coordinate their complementary contributions, as chemotherapy enhances the tumor-destroying silver bullet of radiation. Sounds uber-efficient, but no. The two practices cohabit; chemotherapy is on the right side of the building, radiation on the left. Their receptionists literally sit beside each other. Patients in the waiting areas can see each other and share toilets and drinking fountains. As for service coordination and communication, though, the clinics might as well be on different continents, with distinct intake processes, forms, labs, billing, everything.

My treatments started on a Monday. I was in the far-right portion of the building hooked to an IV receiving my first infusion, running late for my first radiation treatment. The radiation technician came to the infusion area to check on me, telling me to come to the radiation room as soon as I was released by the chemo nurse. Then, my cell phone rang. The caller was the receptionist in the radiation department reminding me of my appointment on the other side of the building.

I was falling deeper into the rabbit-hole. In the ensuing weeks, none of my life made sense; my body misbehaved, people were strange and said preposterous, inappropriate, personal things, and my long-established rules and expectations were upended and irrelevant. How could I know that some of this nonsense would be redefined, post-chemoradiation, as normal?

***

Every tragic movie on the big or small screen features a character dying of something appalling. The more awful the illness is, the more likely it is to be 'the Big C.' Ideologies and opinions are called 'malignant.'  Every third television ad is for either a new, improved, cancer treatment wonder-drug or else a miracle cure for some other condition carrying a potential 'increased risk of cancer’ as a side effect. When someone dies, cause of death is rarely mentioned unless it is a bloody accident, murder, or, of course, cancer, and when cause of death is unknown, cancer is often named as a suspect.

B. C. (Before Cancer), such utterances blew by me. Now, warning sirens blare. If a speaker realizes the C-word just came into the conversation or a companion recognizes a disease-themed movie or some other invocation of the specter has been witnessed by me, a victim/patient/sufferer/survivor, the awkwardness is palpable. Think of walking in on someone you never meant to see naked—not pleasant for either party, right? In that case, it helps you both save face if you turn your head, scramble away, shut the door, pretend you didn’t see a thing, and never speak of it again. Let it go.

And so: When you stumble head-long into the cancer trope, treat it as the non-event it is. A lingering apology will only make it worse for everyone. And please don’t avoid being a friend and doing normal things like watching movies or talking about whatever is on your mind for fear of a slip!

***

When a string of medical professionals told me chemoradiation therapy was the protocol for my diagnosis, I balked, terrified of radiation treatments. I told every doctor of my fear. When each asked me why, I tried to explain. People I love have not fared well, I told them.  First-hand experiences are hard to ignore.

My impression formed two decades ago when my uncle had lung cancer. Radiation took such a toll that the schedule was disrupted, appointments postponed so he could recover a bit before facing more. Sick, weak, fatigued, anorexic, and burned, he suffered through his final months. More than once, he told his family he was sorry he had ever started treatments. He died before the course was completed.

The next close encounter deepened my dread. My doctoral mentor was diagnosed with uterine cancer and her treatments prevented her from attending my graduation hooding ceremony. She seemed to be responding well and planned to return to teaching winter semester. In weeks, she was dead of what was described as “radiation flu.”

So, I had gut-level, full-on “fight-or-flight” reaction to the idea of this ordeal. Every internal alarm system responded “Code Red”. Each white-coated expert brushed aside my fears with various forms of ‘Things have changed. There is nothing to worry about.’  Their reassurances sounded like my grandmother’s ‘Now, hush, Baby, you’re okay’ of childhood.

Looking back, my trip may have been down the rabbit-hole or through the looking-glass, but I found more 'Valley of the Shadow of Death' than 'Wonderland.'

***

My cancer required radiation to my most sensitive body parts. I am now an authority on how debilitating a pain in the area can be. I also have a keen understanding of just how much torture this tender region, along with its neighbor, can inflict. I have birthed two babies without anesthesia, so I thought I knew. No. Let me assure you, childbirth is a walk in the park compared to radiation burns.

My husband has long had a saying he pulls out when someone is going through a rough patch. "Look down. Are you currently on fire? No? Then it could get worse’." Second- and third-degree radiation burns are not technically 'on fire,' but they certainly are as close as I ever want to get. And no, I was not aflame, and yes, it could have gotten worse.

The take-away: Sometimes, a 'pain in the ass' is more than an inconvenience. If you know, you know. If you don’t know, you don’t want to know.

***

Seven months post-treatment,  my husband and I took our annual autumn road-trip to the Appalachian foothills. I am used to traveling light, usually with one small suitcase. This trip, I had a separate bag filled with medicines, comfort items, and therapy devices. I rode on a cushion to reduce pressure on my nether region. I kept a fleece blanket and a knit cap at the ready.

Two months earlier, my accoutrements had been even more cumbersome. I had to be prepared for a sitz bath, a necessity for surviving. Thank God I no longer need them. For the uninitiated, let me explain the sitz bath. It is a flat bowl designed to fit in the toilet, with drain slots to prevent spills. It is filled with warm water and attached to a reservoir positioned to gravity feed hot water through a tube into the basin, maintaining a comfortable temperature without allowing back flow contamination. No moving parts. Low tech genius.

When radiation started, I was instructed to shower, forgoing tub-baths as the pooled water might harbor problematic substances that could enter burn-induced wounds, and to avoid hot or cold water or compresses as I could not trust my senses to detect if, by seeking relief, I was inflicting additional damage to already compromised flesh.

The first week of treatment consisted of ninety-six hours of chemotherapy infusion overlaid with daily radiation treatments. Chemo was unpleasant, but radiation had no appreciable effects. The next four weeks brought more discomfort as the 'good poison' of chemotherapy did its work. Daily radiation changed my skin’s appearance, texture, and sensitivity.

"I’m okay," I responded to the doctors’ inquiries. And overall, I was. I found it hard to concentrate, my energy was low, I had to rest and wear loose-fitting clothes and stay in one spot on my sofa, for the most part, but I was okay through the first three weeks. In week four, the radiation dose was 'boosted,' focused on a smaller area. I was constantly uncomfortable by that time, and pain ramped up quickly. The original plan called for twenty-five visits; with that schedule, week five, augmented by another four-day chemo infusion, would have been the finale. I was convinced I could endure it.

Chemotherapy proceeded as scheduled. As expected, I felt quite ill the second time. To my distress, the team decided to add another week of radiation. The burns worsened. I had trouble sleeping, sitting, walking. I got a stronger prescription for pain pills and a lecture directing me to take them, not to let the pain “get ahead” of me, as though hurting was my own fault. The next week, I tried to explain my distress to a nurse, who said, "Oh, yes, I had hemorrhoids after my daughter was born. I know just how you feel." I responded, "I would consider hemorrhoids, or childbirth itself, a day at the beach in comparison." She laughed. I did not. The doctor followed up by giving me over-the-counter moisturizing gel, nothing more, and chose not to do the weekly physical exam that day.  He added three more sessions to my treatment, the maximum allowed by my insurance. Pure coincidence, no doubt.

Reduced to whining and begging by the next check-up, I earned sulfa ointment and cortisone suppositories, neither of which seemed to help in the slightest. Oh! And the suppositories! Bullet-shaped in the front, they featured a wince-producing blade-like sharpness on the back end that brought tears. Warming them in my hand and rounding off the knife-edge helped, but I learned to dread them.

At times, I could not bear to eat. On such days, I felt weak and lethargic, but otherwise well enough. At least I was spared from digestion and its by-products. Other days, all I could do was prepare for, endure, and recover from trips to the bathroom which were nothing short of excruciating. So, when at last the doctor recommended the sitz bath, it changed my life. Why, oh why did it take so long?

***

One year out, my looking-glass showed a stranger resembling me. My shoulder-length straight brown hair was inch-and-a-half-long gray curls. My skin was splotchy, and my face, round since infancy, featured prominent cheekbones rather than a double chin. Where did the crepey neck skin and sand-papery arms come from? I had lost twenty pounds, but my body was saggy, not at all fit.

People who knew me said I looked good as new as — better than—ever. Lord, how I hope not. Most especially, they LOVED my hair, they said. Somehow, we always landed on the hair. It looked like my mother’s.

I was under no illusion that nothing changed, but at times, I forgot how much.

One Saturday morning, an acquaintance of my husband’s rang the doorbell. As their brief conversation was ending, he nodded my way and asked, ‘Is this your mother, Bob?’ Thanks for the reality check, big guy.

That same day, my five-year-old granddaughter told me that when she looked right at my eyes, she knew who I was. I was in an unfamiliar shell, but I was still hers. With that, she made the whole experience begin to make sense. Thanks for the reality check, sweet girl.