 |
| October 28, 1967, 3:45 PM |
September 24, 2001
[Cleveland Heights OH]
Dear Aunt Mildred,
[Anoka MN]
Sorry to break it off like that but I had to pull an all-nighter to complete my work for church.
That Sunday, August 5, Jean had a variety of visitors who had heard Peter's prayer request in church earlier that morning. My sister-in-law Ilona and her daughter Jennifer, who actually has an apartment on the campus-hospital grounds, came to see her while I was back home obtaining copies of her living will and durable power of attorney.
It was during their visit that a team of doctors came through and began talking about Jean's case to each other as if neither Jean nor her visitors were in the room. Jean found this most troubling as they dropped the bombshell about her condition being terminal and inoperable. Jennifer, despite her twenty-two years and a college graduate in biology, became very upset. She had simply expected to see her Aunt Jean who was sick, not dying.
The doctors behaved like asses to be sure but Andy told me the one who actually let out the news was under the impression Jean had already been told by her own physician earlier that day. He was, Andy assured me, the surgeon who would be operating on Jean if it ever came to that, and, Andy assured me again, that while he was not Doctor Tact, he was indeed the best surgeon for the job.
Of course it would never come to that. Jean was a Class III risk for anesthesia: with her hampered breath, her diabetes, the impossibility of her lying on her back and getting sufficient oxygen, she would likely fail from the stress of surgery.
On my way back to the hospital I encountered a car whose driver wanted me to pull over. It turned out to be some women friends of Jean from church who told me they had heard Peter say Jean was in the hospital. They wanted to visit if she were up to it. They had no idea how seriously ill she was, they only remembered that Peter had been in the hospital several weeks earlier and we seemed to be having very bad luck. I told them they could come Monday morning since Jean was so ill and might want to stop visitations soon. They were dumbstruck. Jean couldn't be that sick. They had just seen her recently and she was fine. I told them a lot had changed in just two days.
When I came back Jennifer and Ilona had left and Jean filled me in on the doctors' gaffe. She was shocked both that the doctor would behave so badly and that Jennifer had reacted so strangely and leave. Jean would be sleeping for short periods after the morphine kicked in and roused as it wore off, the discomfort returning. As she slept I tried to read a book but had great difficulty concentrating as the extreme seriousness came to settle on me.
The days of this time were generally bright with sunshine and blue skies. Outside was humid but inside the hospital air conditioning kept things comfortable. I could very easily fall asleep since I stayed in the room through the night despite being frequently awakened when nurses came to perform tests or take blood samples. And of course there was also the need to move Jean from one side to the other or help her to the bathroom and back. By now she was attached to a traveling intravenous tower and her oxygen had to be disconnected and reattached as she went to the bathroom.
She was producing an ever-diminishing output of urine and had no bowel movements since entering the hospital. Since she hadn't eaten anything, that was to be expected. Tommy Thomas, a retired Presbyterian minister, who had joined our church and with whose family we became friends, had visited Jean several times since our regular pastor was away on vacation with his wife's family in Minneapolis, and left a small book of prayers.
I asked her if she wanted to pray and she seemed to nod affirmatively. I started out saying something about not wanting to lose this woman on whom so many depended and broke into tears for the first and only time that week, and sobbed loudly, my insides aching from my toes to my head. Jean cried a little too and shortly fell asleep.
When she woke next we discussed the visitor situation and concluded she really didn't want anybody to visit--she was too uncomfortable, too drugged, and plainly too sick. Visitors made her feel worse rather than better. I explained about talking to Nan and Joyce, the two ladies who stopped my car, and saying they could come Monday morning. I said I would call the church and tell them to discourage visitors if people asked.
We had just rented Andy's and Emily's rooms to new students whom Jean had met a month earlier when she was considerably better when the leases were signed. Now they were moving in and couldn't believe she had become so ill so fast. Ms Park, a medical technician from Korea came to see Jean and she broke into tears after visiting briefly. Like Jennifer Ms. Park came to the hospital thinking she would see someone only ill rather than dying. She tried her best to urge us to be positive and think only the best things. She was sweet but shocked.
All Monday we waited for more news about the nature of the "anomalous cells" that had been found in the sample of the ascitic fluid. The results did not come in that Monday. The swelling continued. Jean was kind of up for the visit with Joyce and Nan, not "up" physically, but she was conscious and responsive and confessed to them her fear of death. The ladies were shaken to see her so swollen, so drugged, and struggling for air. They left soon after. Later that evening Ann Williams, Jean's diabetic consultant, came to visit and Jean said it would be ok since they had been so close. Ann would stay while I ran home to get some house duties done. They spoke only a little; Ann stayed by her side saying a comforting word when Jean would waken.
Andy and I decided there was no more point in waiting to let Emily and Nat know that Jean was so seriously ill. We had spoken to each of them by phone the day she'd been admitted, but the question now was when to tell them to come home. I called each and told them to call Mom in the hospital room that same night, and not wait another day to return to Cleveland.
We did not see Peter all that Monday and we were fearful that he was greatly distressed by the turn of events. Deaths seemed to affect him more than the rest of us. There was enough to do besides worry about Peter though. Jean who had appeared exhausted when she first entered the hospital looked even more drained in appearance now. The shifting of her body in the night, which had been every hour or so, grew shorter to every twenty minutes.
She began to complain she was terribly thirsty and very warm. All the ice chips she took by mouth and the intravenous fluids were still collecting in the tumors and throwing her electrolytes off. The essential imbalance of salts and water in her body was jacking up her blood pressure to dangerous levels. She could easily stroke. They took her off all intravenous fluids to get the blood pressure to reasonable levels. For a while it worked. However she was cold and clammy to the touch and was constantly thirsty for water which never reduced her feeling of burning up.
Nat and Emily called Monday night and spoke very briefly with Jean--I think Emily got twenty seconds and Nat about ten. Andy, who had been working an acting internship in orthopedics at UH all those days, would drop by whenever he was between classes or in the area. I suspected he knew more than he could tell us. I thought he'd rather let the physicians in charge do the telling.
What I had gleaned here and there was that Jean's problem with her back could have been early signs of ovarian cancer and that medical students knew this as a classic feature of the syndrome. Had Andy known about this all along? What a burden! When I asked him he would defer to the doctors in charge and say, "We really don't know anything for sure yet; wait until the lab results come in."
Monday night was a bad one but compared to Tuesday it was a dream. Jean began to talk as I helped her on on her trips to the bathroom. "I'm really dying?" she asked, I think hoping I would tell her everything would be all right. "You're dying," I answered. "This isn't just a very bad dream?" she went on. "Am I going to wake up and my back will not hurt and this giant belly shrink?" The question hurt. Everything hurt. She was turning blue and the night nurse would frequently check her blood oxygen levels. She boosted the flow on the nasal oxygen tubes a couple notches. We'd move her from side to side in the bed more frequently and varied it with trips to her chair or to the bathroom.
Tuesday the results came in. Ultrasound scans had found a large unidentified mass in her abdomen. The cells' category: adenocarcinoma. This removed whatever doubt remained. I had talked to John Roisum [her brother] on Sunday and advised him of all the possibilities and we left it that he would fly up once notified that Jean had died since that seemed so certain. Nat said he could come home by Greyhound and would be here Wednesday evening. Emily said her flight might have her in town before supper on Wednesday.
People started calling the house to get information. I wrote e-mails to a group of people from church to relay status messages which we had set up when Peter was so sick. Friends forwarded the messages across the country. Soon old friends from our adoption work in the '70s were sending us e-mail inquiries about Jean. No one could believe anyone could die from cancer this fast.
Sorry, Mildred, I got things a little confused there. When I checked my notes I realized Jean's first parascentesis was Saturday not Friday as I first wrote. Tuesday was the second parascentesis during which they removed the larger amount of fluid--the 1.25 liters. Jean felt great relief as they took it. She asked them to go in again and take more until she was back to normal. But by supper she had regained all that she had lost.
Peter finally showed up with his girl friend Rita so I ran home to duties: review mail, feed the doggies (we had assumed care of some friends' dog while they were on vacation before things went south). John Lentz, the pastor of our church, called and he spoke to Jean only a few seconds.
She was in a fog of drugs and barely recalled what he said. She hallucinated. She answered questions inappropriately. She was ponderous now beyond belief. It took two nurses and me to move her from one side to the other or to get her from the chair to the bed. Nurses at her head and feet, I lifted her bottom as we struggled to get her into bed. She winked at me and slyly said, "You'd do anything to grab my ass."
She told the rounds doctor she was George Bush when he asked her name. Her speech became harder and harder to understand--as if she were calling through a tunnel and her lips couldn't form the words that started in her brain. We played a guessing game of what she wanted. I couldn't keep up with every request. I remember waking up when the room lights were on. The nurses were doing something with Jean. I couldn't get up to help I was so tired.
We had been waiting for Dr. Thompson, Jean's personal physician, to accompany the morning rounds doctors and speak to her but for some reason he did not appear. We dealt with doctors and nurses all so busy but there was little to learn. Jean had so much trouble speaking and breathing I just read and watched her try to sleep in between the punctures and probes. Andy came by a while so I took the opportunity to go home for fresh clothes. When I came back that afternoon they were preparing her for a special test to determine whether a blood clot was impairing her lung function. I accompanied her to the Nuclear Medicine Lab, Room 900, in the basement of the hospital. She was blue. She gasped for air. She wanted a drink of water. Below I have added what I wrote in an e-mail to friends later that night:
"Fortunately I accompanied her down to the lab. She would have had to lie flat in the device for twenty minutes and couldn't assume any position that would let her breathe. She begged to let her sit upright while the staff debated her ability to undergo the exam. She asked for some water which a tech gave her. Her hand couldn't hold it and it spilled over her gown and the sliding table on which she sat.
"While I reached around her neck to tie a fresh dry gown at her back, I squeezed her lightly and said, 'I love you.' Her arms were around my neck and as she returned the squeeze I heard her answer, 'I love you too.' When I looked up from the knot her head had slumped to the side and her eyes stared outward unblinking.
"The tech yelled, 'Mrs. Manista! Mrs. Manista! Wake up! Wake up!' Another nurse ran for a doctor who tried to rouse her and seconds later called a code (cardiac arrest--assemble teams) and commanded a crash cart. The room quickly filled with equipment and staff. The exam chief guided me to a waiting room from which I had Andy paged to tell him that his mom had coded."
I glanced at my watch as in something of a stupor I sat down in the waiting room--it was 1:58 PM. I realized finally I had to page Andy so I went to the nearest office and called. He rang back and I told him the code was for Jean. He began running down to the lab from wherever he was with all the other techs streaming into the Nuclear Medicine area. As soon as I saw him I told him he could go in as he was a medical student but they wanted me to wait outside. He went in, stayed only a minute, and came out again to sit near me. Medical people were still coming in from everywhere.
Andy sank to the floor on his haunches and beat his forehead with his fists--he could not help. The inevitable had finally happened and now there was really nothing anybody could do. All of his medical training and he couldn't change what happened.
**************
We waited what seemed like forever. Eventually he came up from the floor and sat next to me. We hugged each other and sobbed. I asked him if he knew what happened. He said no but speculated that Jean was likely to throw a blood clot either to her lungs or to her heart. It was about two thirty when they emerged and said they had restored her pulse and put her on a ventilator. They told us they would move her to the medical-surgical Intensive Care Unit where we could see her next. Andy knew that being without a pulse for over twenty minutes was an extremely bad event.
I think we then went up to the ICU waiting room and decided it was time to notify Jean's brother John. Nat and Emily were already on their way. Andy left a message for Peter at his work that he should leave as soon as he could and come to the hospital. People started to show up. First were the nurses who had taken care of Jean at Lakeside 40 (the same floor where Peter had been taken for his kidney problem weeks before). They were very upset. As soon as the decision was made to take her to the ICU an aide went in to bag up all her belongings, flowers, cards, personal items (as if she'd be using her toothbrush again) and brought it to us in the waiting area.
Peter came directly to the ICU and found the nurses cleaning Jean up from the code efforts. Somehow he had missed the section where he had to sign in first. The nurses told him to leave and go to the ICU waiting area. At that point we were being told we could go in to see Jean and we met Peter at the doorway and showed him where we had situated to gather as a family.
By the time Andy and I got to Jean the nurses had finished. She was breathing with the regularity that only the ventilator could provide. Peaks on the oscilloscope were marching in unison. Her heart rate varied along with her blood pressure. The tube from the ventilator was joined to a tracheal tube and blocked open only one side of her mouth. There was no brain activity they said but we addressed her as Jean or Mom and spoke to her gently as if she could actually hear us.
Rita was to pick up Emily from the airport. The two stopped first at Lakeside and were told that Jean had been moved to ICU. Meanwhile I really had nothing to do and, irritated that I had left my coffee mug back at Lakeside, I walked over there only to find the room had been cleared of all Jean's stuff which they sent over in sacks. I asked at the central floor desk if anyone had found my cup. Not either time, they answered. Apparently after Jean had left the room, they placed another patient there. After half an hour he also had been taken to ICU. So the room was cleaned again. The nurses we met in ICU had not come just to see Jean but the other patient also.
When we notified the church the secretary informed us that a committee had been set up to bring food in for us that night for supper. Someone left it with a neighbor as we stayed at the hospital until 7 PM the ICU's regular closing time. Of course, if you wanted, family could still get in there any time of day or night, but they might ask you to wait on doctors' or nurses' procedures.
Andrew called John Roisum from the waiting room to tell him what had happened. He said he understood all that had occurred and told us to call him again when Jean finally failed. He would then make arrangements to fly in. Emily and Rita picked up Nat at the bus station. After his visit we all went home to get beds set up for Nat and Emily and to catch up with all the phone calls and e-mail.
Bill and Kris Fay and their daughter Katy, friends from church, had early on asked us to sit their beautiful golden retriever Betsie while they took their customary upper Michigan family vacation. We took her in days before Jean was admitted. Besides being beautiful, Betsie was an active, playful dog who thought nothing of crawling into bed and sleeping right next to you with her long lower jaw stretched across your throat so you could feel each other's pulse and breathe in unison. She stayed with me the whole night.
Sam tolerated her but wouldn't play with her. Sam chased only sticks; Betsie chased both balls and Sam but took no interest in sticks. But they did eat each other's food. So while I walked them whenever I was home, I hadn't slept there in six nights. I was looking forward to a comfy bed and a cuddly dog. Everybody knew what lay ahead--the decision of when to take Jean off the supports. Instead of talking about that we all just tried to get some rest.
Sorry I can't finish this letter right now.
Love,
Jim
No comments:
Post a Comment