Cicatrízes part 2

The realization that death comes… The pervasive seeping in of darkness through the shattered windows of my soul? That’s the kind of scar that I don’t think there is a fair trade for. I’ve heard that some people are able to get close to God, or are able to live every day like they were dying, or tell people around them that they love them or find a new peace… Resolved longstanding problems. I don’t know. I can’t imagine such a thing. It feels like all I’ve got are scars.

As an aside, there’s a song about someone diagnosed with some terminal condition that they eventually overcame, how they changed by being terminal,“ I went sky diving. I went Rocky-Mountain Climbing. I went 2.7 seconds on a bull named Fu Manchu. Someday I hope you get the chance to live like you were dying”. Personally, I like any song that can work the word Fu Manchu into the lyrics. But it was playing one day while I was driving my mom back from somewhere (and if I was driving, ‘somewhere’ was usually a medical somewhere). But that song was playing and my mom said, “They don’t know. It isn’t like that. Of course you’d do that stuff, but when you’re really dying, you just can’t. You don’t feel good.” Oh my mom, that’s the thing, it wasn’t meaningful. It wasn’t a profound last shot to live with joy and grace. She just died. But I digress.

Anyway, here are my scars, in case anyone cares. Or in case you’ve been there and you want to compare scars, or maybe you haven’t, but you might someday. It’s not altogether bad to have some idea of what you’re in for. On second thought, if you haven’t watched someone die, live without knowing about it. Stop here. It doesn’t add anything good to your life as far as I can see.

I have a scar, a hole shaped like my mom. In my days and all my dreams from now on. Like a cookie cutter shaped like my own mom went beserk through all the calendar days and years, and moments.

Here’s one, In shape of knowing my turn will come, and I won’t be ready. There is no terror like it. A hulking, sweaty suffocating sense of doom.

Then there’s the scar of fearing something is wrong inside me, something killing me. Something I won’t know about until it’s too late.

I have a scar of realizing many people I love will die, and I will be powerless to help them. That, or I’ll die first. No other options.

My soul has been stretched out of shape by watching my mom suffer. It hangs damaged around me. I can gather it up and stuff it into the clothing of my daily life. But naked, it was more beautiful before and I forgot to appreciate it.

Some day that’ll be a poem. What an inadequate consolation prize.

I suppose I will know I am back to my new normal when I can go a day, or a quiet moment without thinking, “My mom died, I lost my mother, Mom’s gone, Susie, She’s gone, that thing happened.” My psyche is working every day, every hour, defining the new normal. Retelling my story. Because I have to keep marching through my days, writing my story. Knowing more and more about what I can survive.

But I tell you what. I sure miss my 17 year old body and my 35 year old soul.

The Big Picture

February 2005

I got the call as I was walking up the back stairs, the caller ID said HCMC (Hennepin County Medical Center). What the Hell? Mom said, “Well…yah, I think you’d better come down here.” Her voice had that no-nonsense, nonchalant tone to it. This was bad. I stopped mid-step. “Where are you?”
“I’m at the hospital, HCMC.” I knew that.
“What’s wrong? Mom, what happened?”
“Well… they don’t know what’s wrong with me. I just had this horrible pain, and my stomach is blown up like a balloon. I thought it was an appendicitis, but it’s not.” The blood drained out of my face. My face and hands went numb, my stomach lurched, I froze.
“Mom, when did you go into the hospital?”
Two days ago,maybe more. “I didn’t know what was wrong, and I didn’t want you to worry for nothing. I didn’t call because I didn’t have anything to tell you until now.” Until now.

I have no idea what I was doing, or how I was able to just drop everything and go there. I remember the sun was shining on my back stairs. Everything stopped. I dropped everything and I went, chastising myself the whole way to Minneapolis about the melodramatic things running through my head: “Cancer, cancer, cancer” I tend towards the melodrama, or I think I do. I leap to the worst conclusions. It’s a kind of magical thinking. If I suspect cancer, it won’t be cancer.

Ramon had been there with her for two days. He begged her to let him call us. When I finally came, he went home for a shower and came right back. He sat quiet, sometimes crying, sometimes smiling, holding my mom’s hand. He was falling apart.

While I was there, doctors came in and started to teach us new words: Ascites, adenocarcinoma, peritoneal wall, transdermal… The realization about what was happening came neither gradually nor suddenly. The nurse was incredibly nice and acted like my mom was the only person in the hospital. She was the same age as my mom, had daughters our age. She’d sit on the bed and chat. She’d sigh and shake her head. My mom made her sad. I think that’s a big deal for a nurse. She called down to the cancer center and made sure her friend, David was the person assigned to my mom’s case.

I called Jenny first. Out in the hall, on the 5th floor at HCMC. My lips weren’t working right. “Um, I’m at the hospital with Mom… I think you better come down here. She’s really sick. They don’t know exactly what’s wrong” “What?! The hospital? Since when? Why didn’t she tell us? You want me to come down now? Tonight?” I was mad that she hemmed and hawed. I did want her to come down right then. I wanted her to already be there. I needed her to come down.

She came. Erin came, too. And while everyone else cried, Erin paced. My mom was worried about her. She told Erin it would be OK to shed a tear. Erin put her chin up, looked at my mom and said, “Somebody’s got to keep it together, here. We can’t all be basketcases.” She resumed pacing.

Mom was in the hospital that time for maybe a week, they struggled to drain fluid off of her abdomen (“ascites, which is usually associated with ovarian cancer” they told us). Someday maybe I’ll tell the story of the interns my mom called ‘The Keystone Cops’ of fluid draining.

We cried, we waivered in and out of the here and now. “Is this how it starts? Is this it? Is this how it happens?” I couldn’t get a good grip on the idea that I was starting on this journey. I hadn’t prepared, none of us had. Ovarian cancer wasn’t even on my radar screen. My mom had too many other things she needed to get straightened out. This couldn’t be happening. But this was how it happened, how it started, and this was it.

They wanted to start chemo immediately and do surgery after 8 courses or so of the chemo. We took shifts and spent nights afterwards to help her. They said she might be weak, nauseated and need some help at home. They didn’t say she might start throwing up two days after chemo and not stop until she went back into the hospital. That happened twice. Everything they predicted went worse than they imagined.

Chemo was hell. The actual 8 hours at the hospital wasn’t too bad. We chatted, we snacked before mom got too sick (the day or two after). We watched the other people and felt sorry for them. Especially if they were alone. We knew their prognosis was bad, but our cancer story was going to be different. Jenny and I, Renee and Ramon were the team, always there, or taking turns. Patrick came by when he was up to it.

Jenny was a relief to have around, because she understood, and we made each other laugh. Renee was a delight because she made my mom smile when she walked in the room,almost always. With her smokey-sweet voice, “Hey girlfriend.” She’d grab mom’s hand or knee and give it a shake. She always brought good snacks. Ramon was a drain because he was heartbroken and bereft from the beginning. And he couldn’t fake it for our or her benefit.

Patrick was good to see because it meant he was up and about, which was a good sign. He is so funny, and when he wasn’t funny, we ruminated and worried about him after he left. It was such a normal way for us to be. Worried about Patrick.

And Erin couldn’t make herself come to chemotherapy. She never did, never could. She simply could not do it. This fact which seems so sad to me now, was at the time, a cause for righteous indignation and analysis. It was so much easier to focus on her and her troubles than on the real deal.

We did the chemo over and over, every three weeks, got through it, barely. Waited to do surgery until her blood numbers were back up. Just like they told us. So she had 8 weeks without chemo, her hair started to come back. Her body seemed relieved and ready to get back on track. She felt good.

She went through the hell of surgery and post surgical complications.

She would have done anything they told her had a good chance of helping her. And she did. They told her to walk, She walked. Walked like a woman possessed. She walked when she couldn’t eat. Walked when she was in pain, walked when she was hooked up to 3 different kinds of IV lines, and there was nowhere to go but up and down the hospital hall.

They told her to drink the high calorie sludge in the cans, she drank it. She hated it with a passion, she was already full of fluid, and nauseated, but she drank the Ensure and the Boost. “I never let it touch my tongue.” Was her mantra.

It wasn’t worth it. All the horrible moments we went through because we thought we had to do it to get to the other side of cancer, we didn’t have to do it. We never got to the other side.

My mom wasn’t ready to die. Not even close. She was scared from the moment she learned she had cancer until she died. She had moments of exhaustion, moments she was miserable and wished it would stop, even some moments of acceptance, but more than anything she was so, so scared. She tried her best. We all did.

By the middle of October she was gone. She was 56.

I Did My Best

I wrote this when my mom was still alive. When we still really thought she might get better. She was at Fairview Southdale:

I am sending this email to all the nice people I can think of who have cared, asked, and listened to how my mom is. It’s not poetry, but it’s reality. If you don’t want to read about my week it’s OK. Just keep being as good as you’ve been.

We had a pretty bad week so far. Fairview Southdale has been a nightmare. The nurse button goes unanswered for 10 minutes or more. Which is one thing when your mom has to pee and doesn’t want you to help her, but she’ll let you if she must. But when she’s got a nasogastric tube in her nose and down her throat and starts to retch and drool into it while you hold the bucket and no one comes, that’s quite another deal. When she’s lying on her side and one little tear wells up on the bridge of her nose because she’s just had enough, and the nurse doesn’t come with her pain meds… It’s like a bad dream.

Sometimes I can’t talk without crying. Frequently I can’t write without crying, but it’s less embarrassing when I cry and write. So I am sending it to you in answer to “how is your mom? ” I’m not the best judge of how she is. It keeps changing, and my heart can only accept so much at a time.

So when you read this and think, ” oh the poor thing, her mom’s dying.” just remember, I’m still thinking she’s going to get better. Even when I hear myself say things I can’t even believe I am saying. Things that, if you were talking about your mom or anyone else you loved, would make me think, “oh the poor thing, s/he hasn’t accepted it yet”. So be gentle about that, OK?

Jenny and Erin are my sisters. We have been taking shifts. My mom keeps telling us to go and stop watching her suffer. We kneel on the floor next to the bed and cry and tell her we can’t go. Cut us some slack, we say. Our mom is sick, and it’s all we can do to bear witness sometimes. She wants us to go home. But she’s too sick to kick our asses, so we stay. And there’s nothing we can do to make this better.

I washed her feet today with a hot wash cloth and rinsed and dried,even between the toes and behind the ankle bone. And rubbed her feet and pinched her calluses. I think it was good for her, I think she liked it. It kept me busy and felt like the right thing to do. I feel inept and clumsy handling her body in ways I never learned how to. I’ll sleep pretty good tonight. We did our best.

She has totally given up her will to live. She’s miserable, humiliated and depressed. But her bowels are functioning today (and people actually helped her empty the colostomy bag, which they didn’t even look at yesterday). Her surgeon is optimistic, and if we can just get her fighting… she won’t even hold my hand. I don’t know how sick she really is. But this isn’t an uncommon complication after surgery. She could get better. The pain management team is on the case. If she dies, she dies. But she can’t die in such pain… It will haunt me.

They did ask us to get them a copy of her living will. Jenny wanted to know what that meant. “What is a living will? Is that what you don’t know?” I asked in the nicest way possible, not wanting her to think I thought she was stupid. “No. What does it mean that they asked for it?” “I don’t know, Jenny, but they probably need to have it on file. ” Between that and them asking if she wanted to see Father Fein…(she didn’t). I am in touch with reality maybe as much as I can be.

She looks like Dachau. And she looks like she could die. I am thinking
of putting up picture of her when she was healthy, so they know that
she was once something other than a cancer patient. That she’s not really a colostomy patient. She had the grandchildren convinced that she didn’t poop at all. That she’s funny. That she’s a good cook. Hospital food makes her cry. She has issues and obligations which have nothing to do with cancer. And she’s not done dealing with them. She used to be strong. She’s real, or she was once. It makes me cry.

That’s how she is, and be careful when you ask, because the answer is so long and complicated… Thanks

Too Hard

Some of these stories just need to be written, I keep trying to think of a good reason to do it, but I can only come back to the fact that I have to write them. Because they were real. Because they were REAL. Because they happened to me and my family. They washed over us, ready or not. And even after my mom has died, they are still real and I need to tell. Thank you for reading,you must be tired of the theme by now. I’m not done yet.

I think the heart of all these stories is this shocker: No matter how dysfunctional your family is, no matter what you’re in the middle of, how alcoholic or mentally ill or immature or arrogant, how brilliant or stupid the people are… Death and dying will come to you, right in the middle of all that. You will never be ready except in the rarest of cases. I don’t know why that was such a surprise to me. But it was.

If you have or haven’t done care for the dying, it might or might not comfort you to know that it isn’t all soft-screened graceful moments of acceptance and bonding. It’s like labor, delivery and a new baby, in that it is natural, normal, inevitable, universal, unavoidable in addition to being much uglier and clumsier than you think it should be. As far as I can tell, helping my mom die is the only thing I’ve ever done that felt as important as helping my kids to live. And I wish I’d known in advance that people make mistakes, no matter how hard they try.

Some of these stories would be embarrassing to my mom in her live version of herself. I like to think what’s left of her loves her as much as I do and did, and can see beyond things like pride and shame. The following vignette is one I tell as confession, I must tell it. I don’t want to, my cheeks burn when I think of it, and I feel pity and some sort of compassion for myself. It was just a tiny little moment.

We’d been in the hospital for a while, maybe 5 days, maybe more. My mom had bad days and really bad days. OK moments and moments of despair. She and I had been chatting and the nurse came in to check on her. She seemed ok to me. But when the nurse asked about how she was feeling, her face crumpled, her voice cracked and she started to cry, the cry of a tired, beaten and hopless and begging woman, high and sad “I just feel like I’m going to explode. And I’m so thirsty, but nothing will go down, nothing fits. I want to drink all the water and orange juice in the world, but I will hurt more and then throw it back up”

My mom’s cancer had caused a complete bowel obstruction. Nothing was moving through her system. It got as far as her stomach and then sat there. It trickled out, about a dropper-full in a day. The cancer in her abdomen was weeping fluid which was also filling her abdomen and pushing on all of her organs. She had IV fluids to help with dehydration and a TPN line to give her some calories, but what we were really hoping for was that her guts would start to work again so she could get strong enough for chemotherapy to shrink those tumors.

I am hardwired (is everyone?) to cry whenever I see my mom cry. There is no getting around it or growing out of it. So now you have myself and my mom crying, while the nurse tries to find something that will help. But nothing will help, and I suspect most of the staff knew my mom was never going to feel better again. But they tried.

My mom took the last refuge of the miserable, she put her pillow down at the foot of her bed and lay there. Curled on her side, rocking and crying because her tummy was just so bloated. She was literally skeletal, but her tummy looked like she was six months pregnant. It was rock hard. And wrong. Sometimes rubbing it felt good to her, she didn’t know why, but we did it.

She’s rocking, I’m rubbing, and the nurse is talking about heating pads or cool pads or different things that make a person feel better. My mom is weeping and talking about how she just “can’t do this anymore, it hurts, I can’t…too hard” I’ve got my head hanging down and I’m crying and saying “I’m sorry, I know it’s too hard”. She continues to cry and says twice more that it’s just too hard. “ I know, mom.”

She turned her head and said to me, through tears except there were no tears because she just didn’t have them anymore, “No. You’re rubbing too hard.” I am so haunted by my own ineptitude. I’m not sure I’ll ever get over it.

Salt

Abbot Northwestern is nothing like HCMC. The entrance looks like a hotel; a really expensive hotel. The lobby is huge with open escalators and walkways to the second floor. Little shops line the walkways. Little clusters of furniture are arranged around the open atrium. Each cluster has some combination of chairs, sofas, lamps and coffee tables. The colors are rich and dark. It’s a beautiful place. There’s a huge salt lamp against one of the pillars.

A salt lamp looks like a huge chunk of rose quartz glowing from the center. This one is the size of a 5 gallon bucket. I knew what it was only because I saw one like it in a catalog. Well that, and it had a little plaque talking about whoever donated it and how wonderful salt lamps are. When I told Jenny what it was, she didn’t believe me. We waited in the lobby for Patrick, so he wouldn’t have to find his way up to my mom’s room by himself. He’s pathologically disoriented.

Things to talk about are at a premium when you are dealing with a serious illness. They were with my family, anyway. We told Patrick he had to see this salt lamp. He looked at it and said, “It’s cool, but it isn’t really salt. They probably mean like mineral or something, not like a real block of salt.” I shared my extensive knowledge of the negative ionizing properties of salt lamps, and said it must be a Real Live Salt Lamp or they wouldn’t say it was.

Jenny’s very sensible. Sometimes overly so. She can remember the price of anything she’s ever bought. She’s also very proper. She almost never talks too loud or dresses out of style. She’s the only white sheep in our whole family. So when we headed for the elevators and she ran back and licked the salt block, Patrick and I almost wet ourselves laughing. Then we remembered we were in a hospital and got thoroughly grossed out.

She says they’re made of real salt.
Things are funnier when you’ve been worrying all day.

My mom went in for Surgery early in the morning. I got there about 8am. Erin was there, Renee was there, Jenny was there, Ramon was there. Patrick , Tim, Martha, Bart and whoever else showed up later in the day. The surgery was supposed to be done by 1pm. They give the family blinking, vibrating beepers to keep in touch. If there’s a development, they alert you.

About noon they beeped us and the surgeon came out to give us an update.

He had good news and bad news (but you knew that, right?). The bad news was that they had to give my mom a colostomy. This had been a possibility but not a certainty. It was one more thing to have to deal with emotionally, physically and logistically. But we steeled ourselves, we’d just deal with it.

My mom’s life philosophy was, “You just do.” How do you deal with 4 kids under the age of 7? How do you make all your meals from scratch? How do you clean up a mess like that? You just do. We would just do. How do you handle losing everything piece by piece, all at once? You just do.

Saying there was good news was stretching the concept of good news if you ask me; but we take what we can get. The good news was that they had removed much, much more tumor material, more cancer, than they thought they would be able to. Because she had much more than they thought. She only weighed around 112 and he said he removed about 5 pounds of tumors. The reason they never saw actual tumors on the scans and X-rays is because there was so much that it appeared to be background.

He described it as a “carpet of tumors across her abdomen” and masses of tumors around her intestines and organs. But not in any organs. Good news, Bad news.

He drew pictures and answered questions. He would have to go back in and actually hook up the colostomy, so it would be a couple more hours of surgery. People in my clan were starting to wilt. We had brought water and power bars. But they were talking hours more. I for one, kept comparing my suffering to my mom’s. Such a ridiculous response, so pointless. I could stand a couple hours of low blood sugar if she could handle chemotherapy and surgery and everything else.

But when they told us she was out of surgery and would not be allowed to see anyone for at least a couple of hours, and when one of the nurses told us to go and get something to eat for gosh sakes, we decided to do it. Jenny went home and Ramon, Erin, Tom and I went to go get some food. We were exhausted, hungry and overwhelmed.

We sat somewhere that wasn’t a hospital, ate decent food, stared into space and made small talk. It was nice. But the heaviest burden for me was always the feeling that no matter what I was doing, I should be with my mom. It was a constant nagging that was only quiet when I was with her or on my way to be with her. It started whenever I left and got more persistent by the hour.

We got back to the hospital and they said she had already been moved to a room. It wasn’t a cancer ward. It was a back pain ward, but it was available, so they put her there. When we, en masse hit the 8th floor at Abbott, I could hear her. She was angry and loud. She was clearly in pain. But she was also very upset and irrational.

The head nurse might not have actually been a nun, but that had to be due to an error in processing early on. She should have been a nun. Big old glasses, shaped like a tank with breasts, short gray hair and sensible shoes. A complete lack of empathy and love for authority, the whole nun yards.

“Where were you?” “Are you the family?” “We’ve been paging you for over an hour, we did overhead pages twice.” That was the nurse.

“They’re lying! They said they paged you, but they didn’t. I want to go home. I don’t want to do this anymore. They won’t give me pain meds. I’m going home, where I can take my own meds. I can take as much as I want. This is bullshit. If they paged you, you would have come, you were here all day. Ramon, take me home. ” People descended on her as she tried to get up. No way could she get up.

First I listened to the lecture from the nurse-nun about how she would get pain meds as soon as they were approved. “She’s not due for painkillers for another hour. We can’t give her more than that without approval from her doctor. We are trying to reach him now.” “Isn’t there someone here on the floor who can approve it now?”
“No, the doctors on this floor are not oncologists, they’re blah, blah, blah…” Meanwhile my mom is getting ramped up, crazy, recently sliced from stem to stern, and obviously in incredible pain. I told her I was sorry, I didn’t know they had moved her. I would take care of it.

Imagine my whole family- my mom’s whole family standing around while the nurse and nurse’s assistants are talking in code to each other about boluses and bumps and overrides. Then sister Hairy Phyllis leaned against a wall, crossed her arms and addressed my family, “I just gave her some blah blah and it should kick in pretty soon here, but if she doesn’t calm down it will not be able to work. So I need every one here to just stop asking questions and be quiet and think nice thoughts for a couple minutes. Just think quiet, happy thoughts.” She dropped her arms and looked at the floor.

I thought happy thoughts for about 0 seconds and then I broke. I was pissed. “Ahhh, excuse me. I don’t want to think happy thoughts. The only thing I want to think about is getting my mom’s pain controlled. Maybe you and I can go outside and talk about this while every one else thinks happy thoughts. The only thing that will make me happy is getting something done. Now.”

Battle Axe breathed in through her happy thinking nose and we stepped into the hall. No amount of my trembling, inarticulate anger could get anything done. I had to know that. But goddammit! How could it be impossible to get pain control for a cancer patient? In 2005, when the people on the radio tell you that there have been ‘great strides in pain control’ and ‘no one should have to be in pain while they are in the hospital’, how could this be? With people who loved her and would fight for her, how could my mom be in this situation? In the most elegant hospital, where the elevators are lined in cherry and brass, how is it that this woman is in misery and no one can do anything? They had the cabinet and the key and the medicine. And they couldn’t break it out until they heard from one guy who was incommunicado. How could this happen?

The answer, unbidden and unwelcome, filled me with shame, with guilt, with anger and with sadness. It happened because we left. It happened because we weren’t there to make sure everything was in place before they moved her to this purgatory of a room, where there weren’t cancer specialists or cancer nurses. It happened because for an hour or more, there was no one to stand up and demand that she get what she needed. We were all gone.

She had needed us, asked for us, demanded to see us, asked them to page us on the PA and we weren’t there. We had sat useless for 8 hours while they cut her up, but when she came to, came fully out of the anesthesia, none of us were there. I took a big breath. I covered my mouth and nose, started to cry and walked away from the nurse. It’s hard to find a place to cry in a hospital.

I walked into the hospital room, my mom was starting to get some relief from whatever they could give her. I walked in and my mom saw my face and said, “Honey, what? What’s wrong?”. I put my hand on her leg and fell to my knees. My stupid, hungry, tired, selfish, worthless, bony, sad, overwhelmed, eating-in-restaurant, leaving-the-hospital, all-about-me, completely powerless knees, on the hospital floor. My tired,hot, heavy, salty, tear-streaked head on the hospital covers against my mom’s leg. I wailed. “Mom, I’m so-o-o, so sorry” She laid her hand, heavy on my head, and scratched my scalp a little, “Honey, don’t…”

Nurse wicked got the call she was waiting for and my mom got a bucket full of morphine with an Ativan booster. She begged forgiveness from the nursing staff once she felt better.

I am traumatized to this day. I know it wasn’t my fault. Part of me knows. Right?

Renee

This is a woman, who when she had her energy audit, had the NSP guy stop dead in his tracks the minute he walked through the door. “Is this what your house looks like all the time?” Yes, in fact it was. “ I can tell you without going any further why your bills are high. To keep a house looking like this, you have to use a lot of energy.”

Renee thinks it’s time to vacuum when the vacuum tread marks are gone from the carpet. Vacuuming is not to remove particles. There are no particles in Renee’s house. Vacuuming is to groom the carpet. She has no pets, they make dirt. She will wet her pants rather than use a unisex bathroom(” because men splash, I can’t even think about that”).

Renee is a little woman from an Italian family. Short, short hair, mostly black, although it is starting go gray. A super-cute snub nose, brown eyes and medium skin. Her make-up is classic upper-end suburban. A touch of dark red blush, some mascara and a nice red lipstick, BAM. Done. She’s always stylishly dressed, conservative, but cute. God, she’s cute.

My favorite thing about Renee is her voice. Renee’s voice is a mom voice, smokey sweet from years of smoking (she still has one cigarette every night with her husband). She always sounds like she’s about to tell you about the cross-dressing music director at church, even if she’s just going to tell you where the bathroom is. Every conversation with Renee has potential.

We were shunted directly into the emergency room next-door. Stuck in ER limbo, my mom was way too sick to be in the waiting room, but not allowed in an examining room yet. She was laying on a gurney along the wall, we stood at either end. Mom, Renee and me in the hallway sneaking mom sips of water because some Nurse Ratched had taken away her cup of icy cold water. It was the best water she ever had in her life. She said so. She was dehydrated and not processing the way she should have been. They had good reasons, I know, for not wanting her to have water. But capers like this were all we had any control over. We couldn’t bring but the tiniest little lights into her life. And we’d do anything to turn up the corners of her mouth, even just a little.

When they wheeled us into the examining room, we had a little privacy. We made small talk, complained about the wait, the surly nurses, the reputation of the hospital. There was a moment where we were all quiet and my mom looked over at Renee, her voice quavering, “I thought we were gonna grow old together.” Something must have hit her then and there about how serious this was. It wasn’t just a post surgical complication.

Renee broke; I shouldn’t even have been there. This was between them. They had been friends, out like clockwork every Friday night for 20 years or more. Through husbands, infidelities, through Renee’s breast cancer, through my scandalous pregnancy, through multiple jobs and a million small acts of espionage, they bickered like an old married couple, and talked like teenage best friends.
“I thought so, too”. Renee got teary eyed, they held hands. I left the room.

.

The work of dying

Martha called in the morning to say, “Lisa, she’s doing really bad.” She seemed to choke on her words. I never knew what “choke on the words” meant until that minute. She told me my mom had been vomiting over and over since some time in the night. The hospice workers told us she was “actively dying”.

Watching my mom throw up was pretty much the worst. Even when I thought her throwing up was just a necessary part of getting better (chemo sickness). Why did it have to be so goddamned wretched? There was the chemo vomiting, the pain med vomiting, the bowel obstruction vomiting, oh my god, it was hell. There are words that only rarely deserve to be used. They are overused, and so people don’t really hear them. Wretched is one. But I mean it in all its skeletal misery. My mom’s death was wretched. But they told us she was “active”. And they told each other. “She’s active.” It seems like dying shouldn’t be active. It should just happen. What business does a body have of setting up a process for dying? What could go wrong?

So we all got together, had the whole entourage come through, called grandpa, he came down. And we all stayed. I think it was a Sunday. We stayed, all 4 kids, plus Tom. Trevor and Andy coming by. She didn’t die on Sunday, not on Monday. Tuesday night we had to start sleeping in shifts. At one point it was Jenny and me, mom with her death rattle. That raspy breathing which went on for about 5 days, I made it into background noise.

We hadn’t slept really in days. We took turns climbing into bed with my mom, to… I don’t know what. It always seemed to make her feel better. She was so hot, breathing loud. Mouth hanging open. Like a dying person. We didn’t touch her stomach or her sides, because she was so full of fluid and in so much pain there. Just cuddled up, spoon style, to her back.

I think Jenny came after her kids were in bed, just to keep me company, we’d made Erin go lay down and Ramon and Patrick, too. We both had that ringing fog in our heads from lack of sleep, but it was so quiet, just this rhythmic breathing that we were waiting to hear stop. You sort of imagine, or hear about it just getting slower or intermittent and then no more.

We sat in the quiet, doing the drudgery of birthing a death. Swab out her mouth. Hit the pain med bump, turn her over, change the fluid bags, dose her with anti-nausea. It was awful.

And sometime around 3 or so in the morning, I was in a chair next to the bed, and I think Jenny was actually in bed with her. Her breathing got to be so shallow. Just a little inhalation, then exhale, then nothing for 5 or 10 seconds. Then this little inhale, then nothing for 20 seconds. Then 10 second gaps, then 20 second gaps. And each breath was just so little, so shallow. I knew Jenny was awake, she knew I was awake. But we didn’t speak. I was thinking “That isn’t enough breath. She can’t possibly live breathing like that.” And thinking, waves of a strange calm panic hitting me in the stomach and face, “This is how it happens. Oh my god. Is this how it is? This is. Oh god, I’m here, and it’s happening. How will I know? Is it OK to not breathe like that? No, she doesn’t need to breathe. She needs to die. That’s what we’re here for. This is how it happens. It is happening.”

I felt rooted to that spot, but floating in black space. Completely in that moment, in that place, but also totally detached. And then I had these moments of certainty that she was going to die, in that place, in that time.

But she didn’t die. She lived all the next day and died early the following morning, I think. They only fell asleep for a few minutes, switched off the lamp for less than an hour. They woke up and she was quiet.