Get Up, Stand Up

I should have been suspicious of Tressie’s sudden fondness for me. My cancer diagnosis seemed to have made her forget her nasty voicemail threatening to make my life hell, her over-the-top reaction to the Certified Letter I had sent everyone, my extended absence from the family.

When Tressie announced she would visit me, I felt surprised since I had neither invited her nor asked for her help getting through cancer. I wonder now whether she worried that she would have looked like a bad sister if I had died without mending our relationship. But my medical prognosis and treatments did not interest her, nor would she discuss any issues leading to my estrangement from the family. Maybe I should have listened more carefully to the forced cheerfulness in her voice when she persisted in promoting happy memories of growing up together.

Maybe I should have questioned her motives for suddenly showering sisterly affection upon me, but I was overloaded enough already. Learning the ropes of a new job, living apart from Dave, revising a rejected dissertation, and tending to the demands for research projects all demanded tremendous energy. Juggling them all at once while battling breast cancer seemed a new level of crazy, even for me. My reserves were too depleted to interrogate Tressie about re-entering my life.

Looking back, I wish I had stopped myself from sacrificing two weekends worth of rest to fulfill what seemed like my sister’s frenetic agenda to Have Fun As Sisters. Weekends were crucial times for me to collapse, catch up on sleep, regain strength. My doctors ordered me to do as little as possible on weekends, sleep, and minimize exposure to public places that would further weaken my immune system. Seeming to override that advice, Tressie pushed me to exercise and go out for meals so that we could bond.

Tressie’s second visit was, ostensibly, meant to celebrate my birthday. I should have stood my ground for wanting a quiet weekend with Dave. Instead, I gave over my power to her agenda for a non-stop weekend of birthday fun. After she finally left, the stress of acquiescing to her emotional demands landed me in the Emergency Room for exhaustion.

This Little Light of Mine

I have since learned what “gaslighting” means. It aptly describes my experience of feeling passively bullied by Tressie during visits and phone chats. Similar to my mother’s oppositional mirroring during molestation episodes, my sister’s oppositional mirroring stoked my self-doubt. She seemed to need acknowledgement as vital, loving, and the-very-best-ever-sister. This created an intense sonic jamming of my sense of self, to the point that I regressed back into my childhood role with her. Dimming my light so that she could shine, I thanked her profusely for anything and everything to prioritize her needs over mine.

By contrast, the love that Dave’s mom and sister poured into me when they visited was restorative. And lots more fun. They rolled with whatever happened in the moment. I didn’t have to spend energy trying to figure out how to please them. I wasn’t afraid of them.

Dave called his mom and sister for help with my next chemo treatment. He needed to present his research at a conference in Toronto; could they come and take care of me during the treatment and afterward? Of course they could, they both replied. They flew into town with bit of time to visit with Dave before he flew out to his conference. His mother reassured him, “We’ll have a great girls weekend, everything will go along without a hitch.”

The hitches soon came rolling.

The next day, Kathi came with me to chemo. We were sitting in the consulting room waiting for my oncologist when Julie  burst in with all her amazing energy, plus a gag gift. “I found the cutest little zen fountain kit to calm you down!” She availed herself of the sink and towels as though she owned the place, filling the tiny airpump with water and placing the stones into their teeny cardboard box. Intoning dramatically, “Stand back and BE calmness,” Julie pressed the pump. A trickle of water squirted over the stones. We all rolled with laughter.

As quickly as she entered, Julie left us to continue waiting. We were still playing with her gift when my oncologist arrived. He sat down with a very serious expression, waiting for us to stop. “Chemo isn’t happening today. Your blood counts are too low, so I’m sending you home. You need sleep, rest, food, and no drama.” I pressed the airpump hard, squirting water everywhere, saying nothing. The doctor looked to Kathi for confirmation that she at least understood his instructions, answered a few of her questions, then sent us to reception to re-schedule.

It was a wise call to cancel chemo, not just because of the blood counts but because of my deep exhaustion. All I wanted was sleep. Handing over my car keys, I gave verbal directions to Kathi and Mom on how to get to the grocery store up the hill. “Don’t worry, we’ll take good care of you!” Mom said as she tucked me into bed.

While I slept, they learned many new things: My car was a stick shift; our street was on a very steep hill; the streets were layered with winter ice; and Duluth drivers blare their horns when out-of-towners stall at intersections on hills. Also, verbal directions don’t help much in Duluth if you don’t live there.

Two hours later, I awoke to a quiet house, dogs still sound asleep. Cell phones were not yet a thing, and the land line ringer had been silenced so I could sleep. I sat in the window seat, watching for my car to appear on the street and turn into the parking spot.

Into the spot pulled an unfamiliar car. The doors opened, and Kathi and Mom got out, laughing as they lugged bags of groceries up the steps and into the house. “Oh honey, I wanna tell you, we had quite the adventure out there!” Mom said as she went on into the kitchen.

“We got lost big time,” said Kathi. “But then, I get lost all the time even at home, but you know Mom never gets lost.”

“That was after we kept stalling at the top of your street here; we keptsliding back into a truck, I finally told Kathi get out and tell the driver to back off.”

“I didn’t get that far. He blared his horn and just pulled around us.”

I dug through the grocery bags and found chips to snack on while they unpacked things. The dogs swirled around our feet, begging for food. I filled their supper dishes and put them down by the back door, letting them tuck into their meal before asking the question:

“So, what’s with the car out there? Did you wreck mine?”

“Oh no, not at all. It’s at the rental place. We figured if we have to drive to City for acupuncture with Dr. Lee, we’d need a car we can actually drive. This winter driving on hills is ridiculous.”

“I gave you directions to the store. Wait, that’s a rental care? How did you find a rental car?”

“We got so lost. I can’t even begin to explain where we went, no idea. Anyway, we wound up near the airport, and I remembered yesterday when we came in from our flight that there was a rental car place. We drove right by it, and I backed up the car and drove in. We talked to a nice man there who rented us a car with automatic transmission, and snow tires.”

“He also gave us a map of Duluth. And drew on it exactly how to get to the grocery and back here.”

I sat in the kitchen, listening to the two of them recount their escapades, marveling at how mother and daughter could be such friends with each other. I marveled, too, that I was seen in this family as true daughter and sister. We munched on snacks from the grocery bags and laughed at all the mishaps they’d encountered in just two hours.

“Oh my gosh I’m so glad you are here, you two. I love you.”

“Right back at ya, sis. What else can we do to entertain you? Mom’s going to make supper, anything you need from me?”

“Well, Kath…”

“Come on, spit it out, what do you need?”

I led Kathi into the bathroom and looked in the mirror as I pulled on my hair. Out came clumps. Within a day I would look like a stray dog with mange. Having seen Kathi give haircuts to her boys and to Joe and even Dave, I pulled out the electric clippers and handed them to her.

“Can you do this for me? I’m scared.”

“I’m scared too. But yes, I can do this. Let’s do it.”

And with that, Kathi carefully cut off my hair and shaved my head. We both cried a bit and made jokes to get through it. When we emerged from the bathroom, we both got big hugs from mom. During supper, we received a call that a family friend had finally succumbed to his long battle with cancer. His suffering over, we resolved to carry on with optimism, for my cancer had a much better prognosis.

The next day, I stretched out in the back seat of the rental car and slept while the other two took turns driving down to the city. I was due at Dr. Lee’s by late afternoon. He noted my bald head as I introduced to him Dave’s mom and sister. He took my pulse, then studied my oncologist’s lab notes. “So, blood is weak. You missed chemo?” I nodded. Dr. Lee motioned me into the treatment room. There was room for only one chair, and so Mom elected to come and sit with me. We both slept while the needles did their medicine.

As usual, I arose from the acupuncture table with energy and a ravenous appetite. Dinner out, I chose a place that served steak and salmon and yummy desserts. We got to the rental house with a bag full of leftovers and time to watch some TV. The house was cold as usual, and took over an hour to feel any heat. We kept warm by making up makeshift beds for Mom and Kathi in the living room. They convinced me to call the landlord and ask him to check the furnace.

It was so cold the next morning that I had to turn on the oven and all the burners on the stove. By the time the landlord arrived, it was comfortable in the kitchen. “Seems okay in here today, what’s the problem?” he grinned at us. Not charmed at all, Kathi and Mom stood in the doorway and pointed to the oven. “Do you think it appropriate that my daughter, who has cancer, should be turning on an oven to stay warm in the winter?” The landlord sheepishly brought his tools into the basement and began tinkering.

The furnace had been malfunctioning with a broken fan pump the entire time I’d been renting. The landlord repaired the furnace and quickly left, cowed by my mother-in-law’s steely blue gaze she kept on him the entire time. “Never cross Mama Jo,” Kathi said after he left. She has the same eyes; I certainly wouldn’t cross either of them.

Dave flew to the city from the conference so that he could join the three of us. The house was now warm, as was my heart from all the comforting care I had received. I felt energized, buoyed by the light that Kathi and Mom brought to share with me. We really did have a great girls weekend.

Supper among the four of us was an improvised feast. Dave fashioned a dining room table from a cardboard box that we placed on the floor of the living room. The restaurant leftovers had to be extended to feed four with the meager kitchen reserves. In the refrigerator was lemon yogurt, bread, and butter. In the pantry were canned peas, canned peaches, a bag of wild rice, dried mushrooms, balsamic vinegar, and various savory spices. “Let’s do some magic with this,” Mom said as she made salmon patties and beef stroganoff out of the restaurant leftovers. She also dreamed up a flavorful dish of creamed peas with mushrooms, and spruced up the canned fruit with the dessert leftovers.

To this joyous banquet I contributed piece I had recently discovered and planned to work into a class lecture. The tune, “Long as You’re Livin'” traditionally evokes its cool jazz provenance with the rhythm section setting up an uneven quintuple meter. The recording I found featured jazz vocalist Karrin Allyson singing the lyrics, but Abby Lincoln’s earlier recording is often credited with making the tune famous.

The lyrics deliver a gentle admonishment about making the most of life. Cancer can bring people to face a reckoning with the prospect of foreshortened future, and I was certainly in agreement with the first verse:

Long as you’re livin’, always remember
Time is for spendin’, but there’s an endin’
While you are sleepin’, life is a creepin’
Wake up and taste it, foolish to waste it
Sample and savor all of its flavor
Long as you’re livin’

We swayed with the beat as we listened to it over dessert. The penultimate verse hit home especially for me. Once suicidal, now I felt a keen gratitude for the chance to keep living. Beyond simply living, I wanted a live that cultivated love and opportunities to heal from my wounds.

Long as you’re livin’, always remember
You’ll never beat life, don’t try to cheat life
Sisters and brothers, do onto others
Love’s for enjoying, hate’s for destroying
Never forget it or you’ll regret it
Long as you’re livin’

The song is catchy for its uneven quintuple meter, which lumbers along an awkward gait of three beat groupings followed by two beat groupings. It felt like a metaphor for how I was stumbling along through a new job, toward a PhD, cancer, and an uncertain reconciliation with my past.

This tune has become an anthem for me, affirming that I can stand in my life, in my livingness, no matter how uneven the beat of my steps. Whether that beat thumped through cancer or an unknown territory of ongoing healing from trauma, I would keep searching for all that rang good and true for my soul.

A Cancer Warrior’s Horn Call

Cancer kicked my hyper-vigilant survival skills into high gear. Informing my dissertation committee of my diagnosis, I requested expediency and clarity in their critique of my writing issues. We agreed that I would submit a single revised version of the whole document, not (as my advisor wished) and not a chapter-by-chapter reckoning of every thought and sentence. A May deadline would suffice to get everything done for them.

My oncologist in Duluth respected my ambition. He. too, had earned a PhD and understood my dissertation woes combined with the challenges of a new university job. He scheduled chemotherapy for Thursday afternoons, so that I could finish teaching for the week and then drive to Duluth time for treatment. That gave me the weekend to recover from the side effects (Fridays were godawful) and then drive back to the city on Sunday night. I spent a couple hours each weekend revising the dissertation prose.

Walking into the classroom again on Monday, I powered through my lectures for the day and then headed to Dr. Lee’s office with my oncologist’s reports on my blood counts and status. The acupuncture restored my energy and appetite, and I headed to Good Earth restaurant. I gobbled two meals and a protein shake before heading back to the rental house.

As is customary for new music faculty, I presented a faculty recital. But the two cancer surgeries in the fall made that impossible during the first term, and the very first chemotherapy provided brand new meaning of “hitting a wall.” Dave suggested I modify my repertoire from solo to chamber pieces. Further, that I should sit instead of stand, and select tuneful over technical works. My oncologist re-scheduled chemo so that I could perform, on condition that I would report to the hospital first thing the next morning for my poison.

Surrounded by friends and my beloved David on stage, I drew from the wellsprings of my singing soul for that recital. This was my ultimate warrior call, directed at the cancer to blow it out of existence. I would beat it come hell or high water, and I had fine people helping me. My final piece, “You Must Believe in Spring” was an ode to my former suicidal self. Dave had once printed out the words years ago as one of my thirtieth birthday gifts. Then, it was an encouragement to keep choosing life. Now, I was certain that I wanted life.

The recital went well; I had prevailed. In the car afterward, I collapsed happily in the comfort of my soulmate’s tender care as he drove us northward. Chemo the next day was certain to slam me down again, I would hold on to this evening to get through it. To relish in being a musician again was to bring the fight to another day.

Spring term brought six weeks of daily radiation at a hospital in the cities. The oncologist at that clinic thought it absurd that I was working or revising my dissertation during my illness. When he opined to Dave that I seemed awfully willful and headstrong, my dear spouse smiled and replied “yup, that’s what’s gonna get her through this.”

Daily radiation depleted my energy reserves to the point where I had to be driven to the daily treatments. Dr. Lee noted that my skin could not hold the acupuncture needles in some places. I needed two to three naps during the day, which I took in my office under my desk. Dr. Lee gave me an acupuncture treatment that temporarily super-charged my energy so that I could stay awake for two days of interviewing for re-appointment. The crash afterward was hellacious but worth it; I was offered a tenure-track appointment that I accepted.

By the time of my dissertation defense, I had my first publication in a peer-reviewed journal plus an additional published review essay of an encyclopedia series. I also had a promising lead to publish an essay on my discovery of an opera manuscript by Shirley Graham DuBois. Cancer would not stop me, nor would my doctoral committee. They relinquished control over me and approved my dissertation for the PhD in musicology.

Radiation’s long journey ended with the final week of the spring term. I packed up and moved out of the rental house, happy to be back home in Duluth with Dave. The summer season with the Lake Superior Chamber Orchestra beckoned two weeks away, and I promised to resume my chair as Principal. But first, one more surgery.

The cancer had thrived on estrogen, and I decided to take away its food by having my ovaries removed. The post-operative pain from the final surgery – an endoscopic procedure – was intense.  The incisions pulled across my gut where I anchored my breath support to play horn. I could not possibly play the first concert with the chamber orchestra.

Fortunately, my longtime colleague and friend Mina was the other hornist in the orchestra. They had anticipated my need for more recovery time and stepped in to play the lead part that first week. The principal cello contacted me with helpful advice. Her recent caesarean childbirth caused a similar compromise to the abdominal support she needed to play her instrument. What helped her was a trip to Victoria’s Secret for a girdle.

I was scrawny and in no need of slimming, but the girdle provided just the right amount of support to my abdominal core. Trussed up, downy towhead blonde hair tufting (most of) my head, I relished my return to the orchestra as a survivor of many things.