My sister-in-law thought she’d beat the odds. She had glioblastoma, an inoperable brain tumor that took the lives of Teddy Kennedy and Beau Biden. If she persevered, she’d live and would be the exception.
She was not.
It all began with a voice message from my brother-in-law. It was on my landline when I returned home to St. Louis from New York City. My late husband’s only sister, with whom he had been extremely close growing up, had fallen and broken her leg.
I called back my brother-in-law. “Where is she?” I asked before he had a chance to speak.
The news is worse, he said. He took a deep breath and proceeded. I asked the doctor why she keeps falling. Her balance was worsening daily. They did an MRI and found two lesions on her brain.
I had trouble wrapping my head around this information. Of course, I immediately went online to see what I could find about brain tumors. Upset, I thought it best just to sleep on it before I paid her a visit the next day. After I caught up with work, email and mail, I jumped in my car and drove to the hospital.
I slowly opened the door to her hospital room. She was fighting with a team of doctors who were suggesting that she have a brain biopsy. What’s the point? she kept saying. I just want to be left alone.
The news was grim. Could be glioblastoma, the doctors said. And then things fell apart. Gradually at first, and then all at once. Physical therapy (PT) for her wasn’t working at all. A new physical therapist encouraged her to stand on her fractured leg, and it shattered into dozens of pieces. Her leg would be useless and never heal.
She was highly sedated and very depressed. Machines were beeping all around her. Ping. Ping. Ping. Beep. Beep. Her foot was encased in a gigantic cast to immobilize it. She had an IV in her arm and oxygen in clear tubes hanging from her nose. And of course, there was the typical whir of activity. Nurses coming and going. A rabbi or other religious person stopping by. Food service. Someone to dump the trash. Sweep the floor. Check her vitals.
The surgeon and his team left. A hospitalist who looked about 40 years old, came into the room next and shook our hands. We hit him with a barrage of questions. “I’m not a neurosurgeon so I can’t answer most of your questions well,” he professed. At least he was honest.
All the anguish I had experienced over a five-year period dealing with my husband’s protracted illness and subsequent death seven years ago came bubbling to the surface. Marcia, if she died, would be the last person in my husband’s immediate family to die. Driving home in rush hour traffic on the highway, I was sobbing and trying to inch over to the right lane to exit. I hit a car that stopped suddenly. The cop called it a fender bender. I was clearly at fault. I’d deal with that the next day. Thank goodness for insurance.
The day of the scheduled biopsy to confirm whether it was a glioblastoma, I received a text from my niece that the procedure was cancelled. Marcia had been moved to a different room. And when I entered a few hours later, the gloom was palpable. What’s going on? I asked.
She had another MRI this morning that confirmed she has a glioblastoma. It’s inoperable. Without treatment, she has about four to six months to live. I broke down. But what about radiation, chemo, clinical trials? My sister-in-law didn’t want to endure treatment that at best would only prolong her life a few months. She just wanted to go home to die. She began to sob softly into her pillow.
Of course, everyone had an opinion. We were all throwing out suggestions like pitches at a baseball game. But Marcia was resistant. STOP. It’s what I want. Not what you want. No treatment.
We were all shell shocked and nervous. And when we’re nervous, we eat. My niece bought several soft pretzels at the coffee bar in the lobby and brought them upstairs. Soon, the floor was covered with salt looking like we had a siege of snow flurries in the room. It gave us some comic relief albeit brief.
When everyone left the room and I was alone with my sister-in- law, she motioned for me to come over to the bed. We had never been particularly close when my husband was alive. However, after he died, she began checking up on me on a regular basis. Our relationship blossomed; it became strong. Perhaps it was because I was the only connection she had to the brother she had lost.
When my husband was sick, he was in denial that cancer would take his life. We weren’t allowed to broach the topic of death. We didn’t plan. There were so many unanswered questions when he died. I have learned so much since then. It’s okay to discuss death. In fact, it’s good to discuss it. To ask the dying person’s wishes. And I did.
I leaned in and she whispered: I think it’s so much better knowing what’s going to happen—even if I’m going to die—than to live in a state of limbo. The idea of a brain biopsy and what it entailed had been eating away at her. She was terrified of chemo and the side effects that she had seen her brother experience. I did assure her that a glioblastoma was nothing like the blood cancer that took her brother’s life. His treatment was different. His end painful. Hers would be peaceful according to doctors.
She asked if I’d help her compile a bucket list—favorite foods, people to see, places to visit. Who knows if she could do any of this but hope and denial are powerful emotions. I thought, “Go along with it. It can’t hurt.” I started scribbling her suggestions in a notebook I keep in my purse.
She kept questioning why this seemingly biblical punishment was raining down on her like a plague. She had never bothered anybody. My sister-in-law was an introvert and a very private person, kind, lovely, and uncomplicated. She just wanted to live her life—wife, mother, grandmother, volunteer, preschool teacher.
Now she had a leg that was unusable and would keep her chained to a bed. My brother-in-law couldn’t care for her at home, so she had to remain in the nursing home where she went for rehab. She was moved to a different floor and hospice was brought in to make her as comfortable as possible. There were no more chirping monitors or IV lines.
As she lay in bed and the two of us talked, I didn’t hesitate to ask about her funeral. Where and how she wanted to be buried. If she had a will and trust. Would she like me to record any sentiments? Any wishes she had after she died that I could fulfill? I let her talk uninterrupted about some unresolved issues. These conversations will remain private. I ended each visit by saying, “I love you” and “You have mattered so much in my life.”
I also found out so much I never knew. She had a collection of luxury stuffed teddy bears and a passion for expensive designer purses of which she had accumulated quite a collection. This surprised me for she never seemed to be materialistic. We told funny stories about her late mother, her brother, her grandparents, uncles, aunts and cousins. She had always been my husband’s family historian. We talked about her pets, schools, jobs, friends, anything to divert her attention away from what loomed.
And then quietly and imperceptibly, a new kind of psychology started to coalesce around her. It kept her alive and meant more to her than the almost daily arrival of flowers, cards, food and candies. Visitors. A cadre of first cousins, former work colleagues and friends were at her beck and call and would sit by her bed and humor her. My brother-in-law came almost every day and would sit for hours. Her daughter who lives in town came every night after work, often with her two children. Marcia’s other daughter made 15 plane trips back and forth from her home in L.A. to St. Louis to be with her mother, some trips with her husband and daughter.
In the end, the speed of Marcia’s unraveling became breathtaking. She fought death and rallied several times. She wasn’t ready to leave so much behind. Several times when she seemed unconscious, her eyes would pop open. Not able to see or to verbalize thoughts coherently, she’d become frustrated and angry. She was terrified of dying. It was agonizing to watch. But eventually—almost seven months from the diagnosis, she fell into a peaceful coma and died a couple days later in her sleep, her restless and damaged body finally at rest.
Good friends but mostly family have made me feel anchored to St. Louis. However, my parents are deceased, my siblings and children are scattered, and now my sister-in-law is gone. Her death is tragic and sad, but for me it's also a sign that it's time to leave St. Louis, time for a new adventure, and I’m excited to see where my life takes me next.