Mary Ellen: October 10, 1946 - January 10, 2015

Dear Aunt Ginny,

I am writing to inform you of unfortunate news concerning your niece and my mother, Mary Ellen.

On Saturday, December 6th my mother contacted me by phone to tell me that the Sunday family dinner was cancelled because she was sick. I assumed then that she had a cold or the flu, nothing more. I was accustomed to not asking too many questions as she was accustomed to not answering them.

On Wednesday, December 10th I was at my brother Jack’s house helping his nieces Kylee and Kiersten with their math homework. During that time Andrea, their mother, asked me if I had known that my mother was sick. I told her that I did, and she revealed at that time that she had been constipated for over a week. This seemed more serious than I had initially thought. Later that night I contacted my mother.

Mary Ellen informed me that she had gone to a Walgreen’s Healthcare Clinic to get a prescription for a bladder infection that she thought she had. While there, the nurse checked her heart rate and told her that she needed to check herself into a hospital immediately. Following that advice, she went to Anderson Hospital in Maryville, Illinois where they began treating her for atrial fibrillation or irregular heartbeat. The story unfolds from here.

I went to visit Mary Ellen at Anderson that Thursday to see her in the intensive care unit. They had her hooked to several drips, administering drugs for an irregular heart, infection, and dehydration. In treating her constipation my mother had taken a laxative. This resulted in a few days of diarrhea, which had dehydrated her, causing discomfort and pain that she mistook for a bladder infection.

By Saturday, the cardiologist came in and prescribed her a medicine to treat her irregular heartbeat, repeating the exact words from the commercial for the medicine that had just played on the TV in her room a few hours earlier. Are these doctors or 'care' salesmen?

She was beginning to bloat during her stay and the medical staff said that this was caused from the saline drips they had given her and would go away on its own. She was released Saturday evening December 14th from the ICU. I had commented that she was the only one there who would ever walk out of an ICU bed. I kissed her goodbye and she got into the waiting car driven by her boyfriend Bill. She told me that Sunday dinner would be cancelled again. I understood and visited her later in the week.

On Tuesday, December 16th I visited her and Bill. As we sat down for dinner, Mom wasn’t herself. She remained doubled over at the kitchen table with her bottom lip drooping in a look of exhaustion. I asked her if she was in pain. She told me that she wasn’t but that the bloating hadn’t gone down. I asked her if she was going to see her doctor. She had made an appointment for the next week. By Thursday of that week Bill had returned her to Anderson Hospital as her condition hadn’t improved.

Anderson Hospital put her in a room with another woman in a cardiac wing of the building on the third floor overlooking the parking lot. When I went in to see her she was sleeping, but the sight of her made me weep. She looked as if she had aged years. Her weight loss was very visible in her hospital gown. Her arms were nothing but bones. I remember Clarence, her father, telling me that mom was not a pill swallower. Using the pill crusher at her bedside, I crushed one of her heart pills and helped her eat it with some pudding. What bothered me the most during her brief stay there was that a hospital is no place for rest or restoration. It’s a technocratic organization strategically run to avoid malpractice suits. She had a scan tag on her wrist that nurses and technicians scanned at thirty minute intervals to track her ‘care’ and to ensure that she was being given the proper medicine. She could get no sleep nor comfort. The only comfort that came from her stay was that they drained the fluid collecting on her belly. She told me then that she thought she had diverticulitis.

Her stay at Anderson Hospital the second time was longer. The hospital placed her heart condition on a higher treatment protocol than finding the origins of her bloating or her GI issues. They would do a series of X-rays and scans of her gut and chest to see what they could find. After a series of scans they concluded that she had cirrhosis of the liver as the spots they saw were not large enough to be indicative of cancer. That was their explanation for the fluid buildup. The doctor we spoke with told us this during his brief visit. He also indicated that the fluid could be regulated with medication.

Mary Ellen’s diagnosis became more serious on Christmas Eve. The results of her chest scans had arrived. They had found an ‘armature’ on her lung that was leaking fluid into the pericardial sack surrounding her heart. While I never found out for sure, this may have been the reason for her irregular heartbeat. What the doctors could say for sure was that this was cancer. At this point we were told that she had masses on both lungs consistent with cancer and evidence of cirrhosis of her liver. This would, in turn, complicate any treatment. She was released from Anderson the evening of the 24th and was scheduled to see her primary care physician, Doctor Kopjas later in the week. Upon seeing her, Doctor Kopjas told her to return immediately to the hospital. She was admitted to Missouri Baptist on Tuesday December 30th.

At Missouri Baptist the doctors and nurses continued to treat my mom's heart condition and look into the fluid buildup on her stomach. An oncologist reviewed the medical information released from Anderson Hospital and brought a prognosis. She had stage-four lung cancer with metastasis into the peritoneum, which is a membrane that covers the organs. The doctors at Missouri Baptist hadn’t changed the liver diagnosis, but the look on the hospitalist’s face said something other than what they were telling us. My mother’s days were few. Bill and I took shifts in her hospital room trying to catch a doctor charged with her care, especially one of the specialists who could tell us more about her condition. The nurses provided us with little information other than to tell us that her fluid build-up would need to be tapped intermittently and couldn't be regulated with drugs. We met with two of the oncologists charged with her care. Neither would indicate the extent or the severity of her cancer. The best that one doctor gave us was that a patient with stage-four cancer, on average, may live six to twelve months with treatment or half that with no treatment, and given her weakened condition the doctors had determined that she was no candidate for treatment. Once again, doctor-patient communication was reduced to a recitation of statistics, more malpractice avoidance, more obfuscation, no truth, just numbers, averages, bureaucratic language meant to say nothing other than to satisfy for the hospital that something was said but that nothing culpable could be connected to the decision making of the hospital staff. The lawyers were happy. We were not.

A palliative care nurse came in to her room while we were there and asked my mom if she had a religious preference. Mary Ellen told her that she believed in God, and so the nurse arranged for the hospital chaplain to visit her. My mother was released from Missouri Baptist into home hospice care on Tuesday, January 6th.

When I came over to her home the admission nurse for the hospice center was taking down all the necessary information. Soon the ambulance arrived and dropped off my mother. Bill and I had arranged her front room so that her hospice bed and all the necessary equipment would fit amidst all the statues, baskets, wreaths, and rustic flotsam that my mom considered decorative. We sat down on the love seat together, and I asked her if she wanted something to eat. She said that “I guess today is not my day to eat.” She then told me that earlier that morning, before she was released, the oncologist in charge of her at Missouri Baptist had told her that what she had in her stomach was something different. “It’s bad,” she said. I cried. I cannot describe the weight that overcame me as I watched my mother die, how dumb and impotent I felt, how utterly helpless I was at every grimace, twitch, body movement. I felt like I had to hold her through it all, but I was utterly hopeless that first day. We gave her a dose of morphine and an anti-anxiety medicine to keep her in bed, which after weeks of being bedbound had caused increased chafing and discomfort on her body. She was becoming too weak, and with no food, she would only become weaker.

On Wednesday, I walked in to the house to my mother lying on the couch. She said nothing. She just waved. I asked her again if she wanted something to eat. She shook her head “no.” And so I sat there with her in silence. I called my brother, Jack, who was working in Indiana, and told him to come home. I couldn’t stop crying. I couldn’t speak at this point. It was too much to explain what was happening to him. By Thursday, my mom lay in her hospice bed and never got up. As we tried to talk to her, her speech was labored, slurred, and hard to understand. Bill had contacted the hospice nurse charged with her care to come and reassess her condition. At that point, we moved her to a hospice care facility on the evening of Thursday, January 8th in Edwardsville, called Relais Bonne Eau.

Moving her from her bed onto the stretcher was hard to witness. She was disoriented and afraid. "I'm going to fall," she said. "I'm too close to the edge." My brother suggested giving her some morphine for the trip. She hadn't had any all day. The paramedics allowed this, and we got her on the stretcher and they drove her away. Bill sat down and began to cry. I was in a daze. The few brief days I had spent with my mom at home were such a heavy weight. Thirty-seven years of being a son had been reversed so abruptly. My mother had become nothing more than a skeleton in a diaper unable to care for herself who, just a month before, was caring for all of us.

The hospice nurses changed her, cleaned her up, and sat with her until her restlessness subsided. Bill, my brother, and I had a brief moment of respite. Throughout the day Friday most of her friends, co-workers, and family visited her at the hospice facility. She did not speak, and only once did she push herself up briefly and look out from barely open eyes when my girlfriend, Helen, told her goodbye.

Saturday morning my brother and I arranged for her cremation at a mortuary in Lebanon, Illinois. As we finalized the paperwork, my mom’s boyfriend, Bill, called and told us that her breathing was labored. We headed straight to the hospice facility. Upon arrival, I saw Bill and Aunt Jo Nell crying in the hallway outside her room. Bill turned to me and told me, “she’s gone.” Mary Ellen died Saturday, January 10th at 11:18 a.m. She was 68. The cause of her death was stage-four lung cancer with metastasis.

We had few warning signs of her condition. I had given up telling her to stop smoking cigarettes in 2004. I told her that her habit was deadly, and she agreed. But nothing stopped her, except being told that she had lung cancer. That soured the taste for her. About six months prior to her diagnosis she had begun losing weight. It was noticeable. She had also become increasingly irritable. Her boss told us that she stopped doing the work that she was able to do. That began in September. No longer was she walking around the office. Instead, she sat most of the day.

Mary Ellen was headstrong and independent. I had learned as a child not to question anything she did, nor would she let anyone question her. She presented a hard exterior. She offered no hugs. A ritual kiss on the cheek is all she allowed. She had acquired a cough a few years earlier that was characteristic of the “pleural effusion” the doctors had found on her lungs at Anderson Hospital. I noted its occurrence and went about ignoring it just as she did. She had a tendency to hide behind routine and a sense of normalcy that she was adamant to maintain. She had hid her health conditions until her body could no longer keep up with her daily routine. She resigned to lying in bed, asleep, until she was no more.

In sympathy, in hope, in sadness and regret I have recalled everything from my mother’s passing as I remember it. I do it for myself as much to remember as I do it to allow you a moment of remembrance. I know very little of where your relationship with Mary Ellen went, nor is that the issue now. She was family. She was a mother and a grandmother, a daughter and granddaughter, a niece and a cousin. And to everyone else she was a friend. Her soul is gone, and her body is ash. All that remains of her are our memories.


With love and sadness,

Jason Lesko