When my mother could no longer lift her arms she sent me to her closet and insisted on her best clothes; bright patterned prairie skirts, silky tops, cashmere sweaters and her scarves from Provence. She gave cancer no purchase, draped her bones in defiance even when I had to pin her clothes to stay on her wasting body and always, every day, she slid stacks of bangles on her spidery wrists and finished with lipstick. When not even a ball gown could change the ending she chose one anyway for her cremation. When I woke up in a hospital bed thirty years later I wished I had asked more questions.

She had been forty-seven years old and newly remarried when a scan revealed that the persistent pain in her side was a stage IV ovarian tumor the size of a grapefruit. As her daughter I had a 98% chance of also developing this cancer, the gene so strong that for decades after her diagnosis and death I was aggressively monitored inside and out with every new medical testing advancement: vaginal wands, chlorinated hydrocarbon blood tests (CSA), ever more concise MRIs and CAT scans until, when my childbearing years were over I had just about outlived the worries. No symptoms, no pain, three healthy adult children and every test possible, I was still advised to remove my ovaries at age fifty-eight  just to be sure.

Turned out I had been focused on the wrong cancer. My ovaries were normal, but the surgeon found a large carcinoid tumor in my slightly ruptured appendix. In the flick of the scalpel my mother’s story and mine became intertwined: her story was my story was our story.

My mother had made dying look good. It was not at all. A week after the surgery I glowered in the mirror remembering those mornings in her closet, furious that the only piece of clothing that could hang free over my distended, stapled belly lay limp in my arms, a designer sack purchased in desperation on a hot day years before. I could not stand up without a pillow pressed to my belly. I lived in limbo about my future: in barely six weeks I would go in again to determine the extent of the malignancy, my lifespan, my well being. I was low, unwashed, and lonely.

How did my mother find wellness when the narrative shifted from healthy-to-patient, from the rest-of-her-life to maybe-not? She wore big picture hats to chemotherapy. As treatment progressed, she still put on low-cut shirts and showcased her assets, not even covering the port implanted in her upper chest to access a major vein for treatments. No wait-and-see for her either: she traveled to Europe five times, bought a farm, produced her art, and planted a garden. Her cancer years were alive. I closed the door tight on my former wardrobe of skinny jeans and underwire bras that now hung slack in the closet, their fit having been dependent on a lifetime of exercise, carb-starves, calorie counting, fat-tabling and sugar tallies. My good clothes mocked my new body truth; I wanted nothing to do with my closet.

So much was starkly different and frighteningly the same. I had moved in with my mother when the cancer took over. At twenty-four years old I was such a life-baby, no clue how to talk to her about the little things that kept her going despite. I could have used every single shred of that information now. Instead I had  hyperfocused on the daily tasks of keeping us all clean, her medicated, my stepfather upright. Who could blame me, mired in grief? Now I wished I had stopped pushing my agenda, like food — I really believed that was love, all that making and baking and feeding — when she could barely eat. Had asked better questions.

More: What do you need me to do for you Mom?

Less: Who gets the opal ring?

Even less: But I made your favorite scones!

Genetic testing taken before I left the hospital determined the relationship between the two types of cancer — ovarian and carcinoid — was inconclusive. I stared in the mirror thinking this sack of a dress had been a lark for heaven’s sake, not intended to be worn for the rest of my life but did I even have one and what the hell did it matter? So I stayed in my bedroom with my dog for company as my family avoided me and the entire subject of my illness.
On my second week post-surgery my husband made me lunch I knew I would not eat, covered it carefully in plastic wrap, and went back to his office. My kids had yet to visit me. The dog would not leave my side. I had just pulled on the  tea-stained oversized shirt from the day before when the surgeon called to review the results.

“Low worry here,” she began.

“Define low worry please?” I countered.

She laid out the facts: ahead of me in the next month would be nine more incisions, a battery of tests, scans, and a special bowel surgeon. He would remove any further cancerous tissue, then re-section my colon and possibly — at the moment a very big possibility if too much bowel needed to be removed — attach a colostomy bag. I could not get my body to connect with my brain. How was it possible to feel low worry about this?

“Carcinoid cancer is not unusual but rare” she clarified and wrapped up the call.

How to not worry about that and also how to go downstairs and be functional. The dog needed to pee. Then, gathering myself to move I swear I heard my mother. Just one word, her favorite retort, the sound drifting through the open window all breath and menace and love.

COPE!

My Scottish terrier pressed into my legs. “Why are you even here, Mom? I put my hands over my face — who talks to their dead mother? Probably time to stop the pain meds. I sat back down on the bed feeling her disapproval radiate around the room. Then I was talking back.

“We aren’t the same people, Mom.”

“I am losing my mind.”

But this scared me enough to jump start me. The puppy could wait. I pulled the rank shirt over my head, avoiding catching my nails in the first set of nine black threaded stitches crisscrossing my belly like alien spiders. The shower water sluiced down the hillocks of flesh, softening the crusty edges around the sutures leaving moon-white lines. I blotted dry, then pulled on another XXL t-shirt. I felt haunted; did hearing her mean I was dying? Before I went downstairs I firmly shut the window.

Later that week I added loose leggings under my saggy dress to meet with my designated gastrointestinal oncologist. My husband drove us silently to the hospital. Pressing the button for the oncology floor my body hummed in a state of anxiety. My husband lowered himself in a chair opposite the exam table and bent to his phone, his detachment feeling like repulsion. I could not stop shivering in the paper examination gown. An unmistakable sound of crying drifted down the hall. Time stalled.

Then, in succession: the oncologist examined me, read his notes, straightened up, and declared “I am cautiously optimistic.”

Was this doctor-speak cheerleading or simply misleading me? I felt myself flush from top to bottom. It was all I could do not to vault off the table, throw my clothes at the two men, shout “what is the caution index here” and “define this please!” and “what for fuck’s sake does optimistic mean — five years or fifty?”

Was I or was I not going to see grandchildren, their first birthday cakes, my children age, my own grey hair, their marriages, the trips I had envisioned — the exact markers my mother had to miss, four years fighting then dying at fifty-one years old? And STOP TYPING! I glared soundlessly at my spouse.

But I bit the words back — I didn’t have all the information yet — and pushed myself upright, the disposable gown ripping in half. I wished I had a hat or a vibrant scarf to throw over my shoulder, some bracelets to rattle or a tube of Chanel Rouge to snap open. I was still here, wasn’t I? If I had followed her example, whisked on more mascara, glammed up now that would show cancer a thing or two, that would look like I had plans and energy and cared for myself. Would the doctor have dropped the caution barrier then, seeing me look the warrior not the deflated woman I was today? I wanted to whip out my phone, too, and start a list of all the DO NOTs for cancer patients.

In the elevator my husband briefly surfaced from his phone screen and said cheerfully, “Look how good your chances are!” Add good chances to that list of language I was supposed to swallow. He tied my shoes before we reached the garage floor. I stayed silent all the way home.

I am a definitive, information-is-power person. I have tied my own damn shoes for over five decades. Once home he went to the study to cut and paste his notes which arrived minutes later in an email, the positive points highlighted in red.

My daughter, her wedding two months away, called to update me on plans, and did not ask about the appointment. I stumbled on scheduling a dress shop excursion. Today seemed to be the last straw for them all:

“But Mom,” she retorted, “ they got it all!”

“Why can’t you see the bright side?” my husband wrote in capitals.

My dead mother whispered in my ear You have to try! As if having cancer and facing the unknown was not hard enough. They were hearing the story that they wanted to hear and disappointed in me for not going along. Fury was building in my chest.

On the other side of the bed now — patient not caregiver — I lay awake apologizing to my mother. Did I wave pompoms in her face too? Tell her empty reassuring platitudes, deliberately edit the reality? After all these years, having cancer attached to my state of being, I finally understood that some behaviors and most wannabe saviors could fail from good intentions.

I pulled out my laptop and replied to my husband’s email.

“Just so you know,” I began, “Fear is irrational and the facts are fearful. Your cheerleading is devoid of compassion and full of self-interest. These are my emotions whether you like them or not.”

I called my daughter back and set up a date weeks away. I put the pillow over my head to stop hearing my mother’s voice. I began that list of DO NOT language:

Low Worry Cautiously Optimistic Good Chances Bright Side Cope Try

Taking care of my mother the last year of her life was a complicated exhausting commitment for a twenty-four-year old. I did not blame my family for being afraid of tackling the hard subjects or not understanding what to say but now as a patient I knew being there for me was not the same as paying attention to me.

I eventually found my strength the day I was to see the next surgeon. When I got up that morning I went into the bathroom and mercilessly yanked out the undissolved stitches with pointy pink tweezers. Beads of blood rose up and spilled down my stomach. “Damn you” I screamed to the bedroom universe. Mad felt good. That needed to be said. And maybe my mother’s voice was just here to help me help myself.

The stitches fell off the tweezers into the waste bin with a whisper. I turned off the bathroom light, the dog close on my heels, and threw the shapeless shirts into the garbage can. How to take ahold of this inertia and move forward?

My mother dabbed perfume on her wrists every day, a light spring-green scent, Balmain’s Vent Vert. I threw open the closet door, pulled that large dress over my head, then added fancy slip-on shoes. Brushed my hair, threaded on bright earrings, spritzed perfume on my wrists from my favorite bottle of Chanel. Paused to face the mirror, to take a few minutes to mourn what might be ahead: chemotherapy hair loss, permanent disfigurement, profound illness. My mother was right though; pulling it together made me feel better, stronger, more in control. I spun around and headed downstairs to the car leaving a trail of scented air.

See Mom, I am coping.

The gastrointestinal oncology surgeon strode into the room with a full head of red hair already talking, his hand outstretched. “Do you know how lucky you are?” We shook hands, hard. Another word for the list: lucky used to be finding a penny on the ground, a four-leaf clover in the field, an ice cream before lunchtime. Lucky meant having good, unexpected sex. Lucky should not be associated with finding cancer.

Low Worry Cautiously Optimistic Good Chances Cope Try Bright Side Lucky.

He spent a lot of time explaining how my belly button would look after two surgeries.

“Not sure you will have one again.”

I waved it off.

“No problem, this body hasn't sported a two-piece for decades!” I said loudly. Because, I realized, vanity could not prevail — I would rather be able to use the toilet than have a bellybutton. And with that, his PA booked the surgery time, handed me the paperwork, and watched me sign off my consent to the unknown.

Two weeks later I guzzled in and pushed out the bowel cleansing solution to prep for the next set of incisions, exploration, and decisions. I could not leave the bathroom, my body stripped of all dignity, gone suddenly unreliable as the solution cleaned me out. That night felt like my lowest point so far, the loss of bodily control, the mess, my sheer exhaustion.

Sitting on the cold tiles I raised my hands in supplication and said aloud: “If my chances are good, the oncologist is cautiously optimistic, the red-headed surgeon believes I have the luck then I will have to trust them and take all the tomorrows any way possible even if this means a plastic bag attached to my body for life.”

My mother dressed as if each day was a party. She beat the ovarian cancer survival statistics by four years. So what if I had to wear loose designer dresses to hide my pouch if that meant I’d win decades more? There was plenty of red lipstick and great shoes and hell, maybe I would bleach my hair blonde. Because, as my mother showed me, we had to kick ass for as long as we could.

I woke from the anesthesia blinking into my surgeon’s face, his bright hair tucked into a surgical cap. Even drugged I knew this moment was where the rest of my life would begin. Holding my hand he smiled.

“Went like clockwork — and I made you a new belly button.”

Two months later I danced at my daughter’s wedding in a curvy midnight blue dress, my arms raised to the sky, twirling, twirling, twirling.