How Mom Died Part 4

The voice on the answering machine was halting. The message was short. Her messages had been getting more so every time she called. This one was the last.

The doctors had it in mind that they’d move her to Good Samaritan Hospital in Clifton. Different dialysis there – something – it wasn’t altogether clear to me.

“But – it’s probably – not going to work. It’s going too fast.”

I listened to that message several times after Mom’s death. I saved three or more others, too. It was like the friends who would call her machine a week or more after she died just to hear the message, but her voice was stronger on those. Uly likes to play with the machine and deleted these calls months later. Beck felt bad for letting him, but I think he did me a favor. That’s not the moment I’d like to relive, is it?

It was 9 a.m. when I sent the following letter to a handful of friends as a small update on what was going on with Mom. I don’t recall which six, but I guess you know who you are. It was just an hour or so after writing this that I received Mom's last phone call, asking me to come to the hospital.

~ ~ ~

Dear Friends:

This is going out to a handful of folks (like six) that I wanted to keep updated on my mom's condition and what's going on with my family. I thought that I'd keep track of my thoughts on this and share them with you in the email as, I guess, this is a bit too personal for the blog.

Steve

My mom has been looking progressively worse when I've seen her. It's not that there aren't parts of this stream that double back - she was in reasonably good spirits on Saturday night - but it seems to keep moving forward.

Mom - Carol to the rest of you - has stage four adenocarcinoma. Four out of five. I'm making the distinction because it seems that there are two ways of scoring cancer - 0-4 or 1-5 and a bunch of substages within. I don't know which substage her cancer is in. Suffice to say that she's pretty sick and could die tomorrow or could get a few more years. I don't think she'll get another decade, but one can hope. I guess I'll take whatever I can get and she will, too. Right now I'd be really happy if she lives to see Uly's first birthday. She deserves to hear him say, "Grandma."

Mom has been sick now for about a month. Rather, I should say, the cancer has been recognized for that long. She admitted herself to the hospital a month ago because she had a blood clot in her leg. While in the hospital for the clot, the doctors found that her kidneys and liver were operating at about 60 percent capacity. They thought this was due to blood pressure. Mom also had six liters of fluid in her abdomen. This was the reason she had been out of breath and had trouble eating in recent weeks. They drew out the fluid with a needle. (Her friend Mary called this, "Tapping the keg.") The fluid had cancer cells in it.

Mom told me she cried when she first heard the word. It took her several tries to be able to say it and several more days before she would tell me and Becky. "I didn't want to tell you this over the phone..." But, she told us, she was going to do whatever the doctor said and she wasn't afraid to die.

Mom left the hospital last week and had a difficult time at home. A hospital bed in the living room, a new lift chair and help of friends was not enough to keep her at home. She was too weak to get around - even around the house, so she checked herself back into the hospital on Friday.

The cancer is probably ovarian, but testing continues. It is being treated with Taxol, which is the strongest chemotherapy drug they have. She had one treatment on Friday. I went to see her that day and she looked very weak. She couldn't get out of bed. I felt that she might die that day. My feelings may or may not correspond to reality and in this case, they didn't. When I visited her on Saturday she was still very weak, but in reasonably good spirits.

Mom told me that she loved me and Becky and Uly and that, again, she wasn't afraid of death, but wanted to live. She expressed some regret over some of her choices, but overall she was at peace. I spent two hours with her, showing her photos of Uly and telling her stories. She laughed a couple of times. When I left I felt renewed hope. We could hear another patient screaming nearby. My mom told me that she didn't feel that way. She was uncomfortable, but not in pain.

The pain came last night. Becky and I went to see Mom, who hadn't slept since before I saw her on Saturday. It sounded like she'd been up for 36 hours. She was in pain. More fluid in her abdomen, pressing against her ribs, lungs and organs. They finally gave her some morphine and she slept. She's sleeping now. Her blood pressure was low yesterday - 95 over 43 or something like that.

I called this morning. She was stable and asleep, which is why I'm here writing instead of there. More later.

Steve

~ ~ ~

I remember putting my contacts in before I left and taking a shower, trying to look my best. I didn’t want to wear glasses. I wanted to see Mom with my own eyes.

Becky and I went together. It was around 11 in the morning. There’s a lot of this that reminds me of the birth: The labor began early in the morning, too, and we ended up at the hospital, surrounded by doctors, though, ultimately, the events would be decided by Becky’s body, not the medical professionals. That’s kind of what happened with Mom, too. A bunch of us surrounded her and stayed with her through the night as she gave birth to her soul.

When we arrived at Mercy West – it used to be called St. Francis - the task seemed to be mitigating the damage to Mom’s body. But really, it was more of that bargaining down.

Her blood pressure was dangerously low – 60 over 40? – it was something like that. This was only with the help of powerful vasoconstrictors that were wrenching her extremities like vices to force the blood back to the heart. Her kidneys were barely operating – in the time we were with her – more than 17 hours – she may have passed as little as 20 ounces of urine. Maybe less. Her body couldn’t take traditional dialysis and so they could only offer a little bit of traditional dialysis at a time. That was why the doctors wanted to move her to Good Sam. That hospital had a slow dialysis machine that could clean her blood over the course of days. The fluid backed up into her abdomen. I recall hearing someone speculate that she might have 12 liters in her abdomen at that time, which constricted her organs and made it hard to breathe. She also sounded as if she had pneumonia or a bad flu – I think her lungs were hemorrhaging from the fluid backup. I’ll explain why I think this later. When it came down to it, all they could do was administer a morphine drip to dull the building pain and discomfort.

And all of this, I discovered over the course of the day, slowly. I took notes, I asked questions and repeated back what I understood them to say, but it all came down to what one of her doctors, an Asian man with large hands and high cheekbones, told me: “Your mother is very sick. There aren’t good choices, only bad and worse.” He moves his hands while saying this, palms open, one taking while the other gives to illustrate the dilemma of robbing Peter to pay Paul. Her body was bankrupt. There wasn’t anything to move.

Black holes are good pivots in science fiction tales because they’re stand-ins for death. Nothing escapes. Nothing is known about what happens on the other side (if there is another side) The event horizon of Mom’s demise was looming. That’s how it all felt. Walls closing in and all that. It was like the reality of it all was a funnel.

Mom was clear in the head for a while. Most of the day. She welcomed a dozen or more friends who came to visit. She smiled and was happy to see them. Becky noted how hospitable and friendly she was right on through the end. My instinct, when they first came, was to follow along with the doctors, telling them no, I’m sorry, she’s just too weak and tired for visitors. But it was too late for that sentiment. That’s for someone who is trying to recover. That wasn’t what Mom was trying to do.

Our friends in San Francisco lost their friend, Jack, a few years ago. One of them said, quoting Jack, “A peaceful death is highly underrated.” I understand that now.

A kind Sister came and brought Mom her Living Will, naming me as the person to decide her fate, after Grandma. She brought mom a brown prayer shawl and told her that March 19 was the Feast of St. Joseph. Mom was excited in that childlike way.

“It is?!” She smiled. “St. Joseph is going to help me through this.”

The Sister told me that she had never seen anyone so prepared to go as Mom. That her happiness was amazing. This was from someone who watched people die every day.

In more difficult times, Mom repeated, breathlessly, “Lord have mercy, Christ have mercy,” which I took to be moments of excruciating pain – when I might have been cursing. I read later that this is actually a common prayer, one for centering.

The floor we were on was intensive care. We were surrounded by other cells with people dying or nearly so and so many were alone. This struck Becky and me as we were there. I remember an old man moaning one door over.

It became dark and rain was pouring. The finality of the day became clear to me over dinner with Becky. It was so gray in the cafeteria, so dark outside. Beck recently reminded me about the patron saints pictured in that cafeteria. I liked that. Not just some sailboat or barn, but a real picture – one of them was Martin Luther King – the same image that hangs in the kitchen of Emmanuel House in Memphis, the Catholic Worker House I visited in January, when Mom watched Uly for us. So many little strings that connect one time to another.

When we returned to the room the dialysis had begun. They had laced Mom with a half-dozen new wires and tubes and needles pierced her above her right breast, siphoning tainted blood and returning it clean. I remember asking her if she was sure she wanted to do this and she said yes. I thought less of that choice when I saw her there, softly sighing as her blood was pulled like taffy.

Her nurse, when pressed, explained that the best that could be done for Mom was to keep her in a feedback loop. The slow dialysis would extend her life, but what sort of life? One where morphine is needed constantly. She told me, if it were her mom, she’d let her go.

I called Dad, Mom’s best friend Mary, Mom’s brother Mike and Grandma called Mom’s brother Johnny. They raced to get there from Northern Kentucky, Dayton, Kansas and Nevada, respectively. Mary told me to tell Mom that she, “better God damn well not go anywhere until Mary gets there!” And I said this, in front of that kindly Sister and a priest. Mary told me she wanted Mom laughing at this. I think Mom cracked a winced smile. The priest just shrugged.

There was business to be done.

I tried explaining to Grandma what it would mean, withholding the blood pressure drugs and why I thought it was right, but she could only see what I was suggesting as assisted suicide.

“I can’t do that,” she insisted, tears streaming, “I don’t believe in that sort of thing, Stephen.”

And, who could blame her. She was the primary named on the Living Will, but this was also her daughter. There could be no interpretation of Mom’s wishes through the lens of this day, not for Grandma, so I asked Mom next.

I explained it to her – the futility of the treatment – twice. And she said, “I don’t know, Stephen. Ask Grandma. Ask her what to do.”

So, it was down to me, the seed sown to me.

I asked Adam to come to the hospital to help with the baby. The following is his account of what happened next.

~ ~ ~

April 17, 2007
So is Carol Novotni Entitled this way because it is following a piece entitled, “Kurt Vonnegut is Dead”)

Steve asked me to write out my experience of the recent death of his mother, Carol.

I had indicated to him that, on the night before her death, when I was summoned to the hospital to help Uly-wrangle, that I had felt like I was there as a witness. I wasn't quite a participant, but I felt like I saw important things, and said so. Steve wants a record, and not just from his perspective.

I asked how he wanted it written. He said however it felt right to me. So here goes...

9:30 on a Monday night, a couple of weeks ago, the phone rings. Laura's already in bed and I'm just waiting for the laundry to finish so I can get it started drying. Steve's on the phone.

[Background: Carol has been rapidly declining since a diagnosis of cancer only a few weeks before. Steve has been stoic, realistic, worried but focused.]

They're at the hospital and Carol is fast failing. Steve asks me to come help with the baby while they figure out what to do. I tell Laura what's going on and head out. It's a misty, warmish March night and I head for the West Side, wondering distractedly what kind of music is appropriate to listen to on the car stereo. I leave the current mix in and skip the songs that are too upbeat. John Lennon's "Watching the Wheels" and Semisonic's "Closing Time" take me most of the way.

It's past visiting hours, so I have to call Security to be let in through the ER. The guard is very nice and directs me up to ICU.

I can hear Uly wailing when I get off the elevator and follow the noise to the ICU waiting room. When I arrive, Carol's friend Paula is alone with Uly in the waiting room. I quickly introduce myself and take Uly from her and try walking him around. He quiets for a moment as he adjusts to the new person, but decides he's having none of it and resumes his screaming. Paula and I make nervous small talk.

Becky is the first one to come out. She greets me warmly, thanking me for coming, and takes Uly to feed him, which she says is the only way to pacify him (she's right). Carol's best friend Mary and her daughter Jenny arrive shortly thereafter, and then Steve comes out into the waiting room (Paula heads back to be with Carol). I give Steve a big hug and he fills us in on the situation: Carol is failing rapidly. Fluid buildup from the cancer has shut down her kidneys and is smothering her lungs. She's too weak for conventional dialysis - powerful blood pressure medication is the only thing keeping her heart rate up. They could transport her to Good Sam for a super-slow version of dialysis (which would last the whole week), but there's no hope of recovery at this point. Steve feels strongly that since Carol requested that no heroic measures be taken to prolong her life that the time will shortly come to take away the medication and let her pass peacefully. Steve is focused, matter-of-fact. I can practically see the emotion building, like flood water behind a dam, but he is in control. He wants to have a discussion with the principals - he and Becky, Mary, the family pastor and another priest who is a close friend of the family, the nurse in charge - with the exception of his grandmother, Carol's mother. In other words, he wants everyone to be clear and agreed about the course of action before taking it to Hazel, so as to avoid hurtful misunderstandings.

Uly mercifully falls asleep. We find a relatively shadowy part of the waiting room to place him in his car seat. I position my body to block the light from his face. Everyone else (with the exception of Jenny, who also keeps herself removed) gathers on the far side of the waiting room to discuss the situation. What follows looks and feels so much like a stage play that I catch myself framing it in that context, observing the blocking, the lighting, the language. I actively try to suppress this feeling, because I don't want to keep it at arm's length through this metaphor. I want to be as present as possible to witness what is transpiring. And a witness, in the formal, almost legal sense, is what I feel like.

The discussion is lengthy and detailed. Everyone seems hyper-articulate, carefully choosing words. Everyone is like Steve, clinging to a desperate kind of control. But they aren't in denial, they don't seem to be avoiding the emotions so much as delaying them while they talk. Steve is like a president or head-of-state, consulting his advisors. He has a difficult decision before him, he knows what is at stake. He has a position, but wants all possible input before acting.

It is quickly clear that everyone is in basic agreement - Carol's life is over. There is no hope of recovery, only of extension. But her quality of life has no hope of improvement from her current state. After a great deal of discussion about what constitues "heroic measures" and whether the blood pressure medication actually fits in this definition, Steve, Becky, Mary and the two clergymen come to the same reluctant position: the medication should be ceased, and Carol should be allowed to die in peace, with dignity, surrounded by her loved ones. They will hold off only a few hours to allow Carol's brother to arrive.

Once the decision is made, the eerie formality largely melts away and for a moment, everyone sags under the weight of the moment. Then everyone begins to move back into their individual paths, some going back into be with Carol, some preparing to talk to Hazel, some going on their way. The baby awakens, and needs to be changed and fed again. Steve needs his own blood pressure medication from the car. I linger, unsure of what to do. Steve asks me my opinion on the situation, and I hesitate. I am the Witness. It doesn't feel like my role to take an active part in the decision. I simply say that I don't feel I can add anything new to what has already been said. I try to provide some reassurance that I feel they have made the right choice. I don't know if I succeed.

There is one more awkward moment for me when Steve asks if I would like to go in to see Carol. I really don't want to. I'm scared of the ICU and the gravity of the moment. I'm scared to see her like that. I don't want to remember her in her final throes of pain. So I don't.

By this time, it's about midnight. I have to work the next day. Everything is under control, Becky and Steve have Uly covered. So I head for home.

~ ~ ~

I waited as long as I could, until half an hour after midnight, half and hour after Mom’s brother Mike arrived. The pollution in Mom’s blood and the Morphine muddled her thinking, she was barely conscious and I don’t know to what degree she recognized Mike, Mary, my Dad and the others, but I’m glad they were. I gave the nurse the order, finally, to pull the medicine and go on just a morphine drip.

By this time, Mom had already said, “I love you” to me many times and had asked for the foam sponge on the stick so that she could brush her teeth. “I prayed to God to let me leave this world with my mind and my teeth.” And she got both of those requests granted. She also became delirious and unsettled at points; At one time she started yelling, “I have to get out of here!” and ripped her hospital gown off. It was the only time in my adult life that I’ve seen my Mother nude. She was a pitiful sight, her body wrecked. She hadn’t the strength to go anywhere at all.

Her blood pressure and heart rate were clocked on a monitor overhead and the nurse turned it towards the wall so we didn’t have to watch, but, after a while, I turned it back. I wanted to see what it said. This, too, echoed the birth monitor that gauged Becky and Uly as she pushed and he was constricted.

My mind wandered through many things. I was exhausted, mourning, sympathetic, and part of me also wanted it to be over and I selfishly thought of my own discomfort and holding Mom’s hand became a weight in my palm. Becky shared the burden with me and that helped. I kept thinking of that scene in the Lord of the Rings where they form the fellowship to get the job done with that ring, the bit in Blade Runner where Ford’s character talks about his job, retiring the replicants just as I was retiring my own Mother, and, more than any other image, I kept seeing the last scene from Jesus Christ Superstar, at the end, where, after Jesus dies, they all get on the bus and leave town.

Prayers over her all night, from Paula and Caroline, Fathers Bader and Umberg, Deacon Tom. All through the night. We were with her.

At half past 6 a.m. or so, her breathing slowed to one or two a minute. Every one I thought might be the last. The blood pressure was barely registering. And then she gasped once more and thick, red phlegm came up and out of her mouth. That was what she had been choking on. It was done.

I felt, for some time after, like a specter myself, moving aimlessly from room to room in her shell of a house, the shell of her life. I felt religious ecstasy at the funeral, the way Bernini showed in St. Theresa’s eyes. Mom told Becky (and sometimes me) that she had regrets about the way I came into the world. Likewise, I have regrets about the way I helped her out of the world, though, most of all, I wanted to tell the story one last time and end it in my heart as well as in hers.

- Steve Carter-Novotni, July 25, 2007

It's been a while

Uly's almost one.

Becky, Uly and I went on a vacation to SF and spent time with some new and some old loved ones.

I realized (thanks, Z) that all of my humor revolves around objectification (making fun of it) and that, we don't have to give up our biases and prejudice. All we must do are two things: Don't objectify people and don't exploit and oppress them.

Further, the lens of history that I prefer is the one that seeks the knowledge of people's deep, interior lives. The unconscious selves that are secret, even to them. Those are the stories I like to tell.

More on that and part 4 of the story about mom to come.

You can read my daily, professional blogging here at CityBeat.

Steve