Remembering

My dad forgot it all. Or a lot of it. He showed up at my aunt's house tonight with a yellow legal pad (the same kind he used to record my mom's daily drug intake) to ask my aunt what happened. Each day. Each moment relived. My aunt said they got to Friday and I wanted to ask, "The Friday before or the Friday after?" But the conversation went somewhere else before I had the chance to ask and then the question was gone.

My short term memory is shot. It has been for weeks now. I have this theory that my brain is trying so hard to retain and reflect on my old memories and my strong memories that there's just no space right now for the everyday. These small things that don't matter--they just float through the cracks. And so I don't remember why I opened the refrigerator sometimes. Or I don't remember how I managed to get from point A to point B when the sidewalk was closed. I'm certain I just walked beside the sidewalk, on the street. But it doesn't really matter.

I have glimpses of my mom. Close-ups. Beginning, middle, end. Her yellow eyes, opening. The foam that would spit from her nostrils. Her tongue, rubbing against her teeth, bleeding. Two times, toward the beginning, I walked away from her bed grumbling, "This is ridiculous." It was--the amount of pain she was in and how little I could do to help her. And then more morphine and I didn't leave her side except for trips to the bathroom and to the refrigerator, where we kept the morphine and liquid ativan. I held her left hand all night long, carefully replacing my right with my left, and then my left with my right, when one got tired or cramped. When I had to leave the room, I would slip my hand out of hers and my aunt would slip her hand in. We never wanted her to feel that she was alone. Though what I really hope, sometimes, is that she didn't feel a thing.

Something about the tip of the iceberg. You don't want to share these things because they make you feel guilty, responsible, embarrassed. And you share them because you know there's so much more to it than that. So much more. And you share them because that's what we do to keep going. So you can try to be here with me. And so I can lean on you.

And I wonder what my aunt is telling my dad. What details does she offer? What does she leave out? What does she remember?

The question

Should I make dinner tonight as I had planned (butternut squash and banana kofta curry) or should I just stop somewhere for a bite on my way back home from the video store?

I can always make dinner tomorrow and I have no beer at home ...

Hrmph.

Two weeks, one day

I arrived back in Seattle last night. Things get familiar, sometimes. But there is always something missing. Things look hazy sometimes. And I'm not really all here.

It's coming out in small fragments--those last two nights. In maybe a few months, all the bits and pieces that make up the story will have been shared. I'll throw a party and invite everyone who knows one thing or another and we can take turns with what we know. And then the story will be out. What a depressing party.

The parts that are hardest to talk about--that I haven't talked about--are the physical realities. Respiratory failure. The fluids. The sounds. The suffocation. Touch. Taste. Smell. Sight. Sound. All there. And then nothing but cold, and then colder.

I called my dad tonight and asked him, "How was last night?" He told me that when he got home after having dinner at my aunt's, it felt like everyone was around him. I asked him whether that was a good thing or a bad thing. He said, "Sometimes it's better not to think too much." He took a sleeping pill and fell asleep, he said.

Sand/ashes

I had this dream last night (my head has been full of dreams this past week--my subconscious already busy organizing, prioritizing, reflecting, understanding) in which I was talking to my Austen students about my absence. What I told them was that my mom was still hanging on. I said it proudly, though with some worry that I would have to leave to see her again, soon.

"Hanging on" didn't mean that she was still alive, though. It was a dream, after all, and Sandman doesn't make my dream life so simple (the other night, I had a dream in which I was getting the planned tattoo of my mom's name, only it was embellished with other images [a scene from The Simpsons--Homer's bald head shining--and long lines and weird symbols that ran up and down my arm]).

She had passed as she had in real life--only that hadn't meant she was gone. My dream world could not register her as not. So I was simply waiting to see her again, waiting to be with her again, waiting for her to get well, again. Waking up to a reality in which that dream vision is impossible was cruel, painful, and unfair. I knew this impossibility in the dream (I tend to dream lucidly), but I clung--believing, maybe, maybe, maybe. Just around the corner. Alive.

I was speaking with one of our family friends yesterday. She was telling us about the death of one of her close relatives--how hard it was for her when she was cremated (my mom will be cremated today). The body, no longer. No sign of physical existence--or, I guess, only sign and symbol of physical existence.

4 days later

I had this moment last night, when I was trying to fall asleep. I reached out my hand for the glass of water next to the bed ... and my arm was her arm. I don't think it meant anything ... except that I am here and she is not and people have been assuring me, "She lives in you. She'll never really be gone. You will help keep her memory alive." I took some Tylenol PM (the first time I've needed it) and then fell fast asleep.

I've been okay. As well as can be expected I guess. There is always something to do. Someone is always saying something to you. My brother's kids are here showing me in how many ways life goes on goes on goes on. Bouncing balls that almost knock over the framed photo of my mom, over there, garlanded with red roses and yellow mums. Everyone winces, but no one says anything. What can you say?

All the while, I have images and sounds in my head of that last night--images and sounds I want to keep present and alive as much as I want them to go away. Good as well as bad. Images and sounds. But no words. For now.

There are ants all over the house--stowaways, no doubt, on some bouquet. They crawl over the walls, and photos, and somehow onto your arms. And my nephew sings some superhero song. And my niece practices her arithmetic.

Rest

I'll be ready to write about her passing at some point. But not now. Her death was long and difficult for all involved. The hospice nurse was incredibly helpful, but ultimately, death was long and difficult. My mom knew it would be hard for me. She warned me and tried to protect me.

She waited for my cousin and his fiance to arrive before passing. Forty-two long hours since her body had first decided it was time. I hope she wasn't in pain. I hope she knew we were all there with her. (Is hope here denial, too?) All of the people that meant the most to her were there with her.

Please don't hesitate to check in on me. I love you all.

Rest. It's okay. It's okay. It's okay.

The longest night

Up all night. With her on one side of the bed. My aunt and I curled up on the opposite corners--her at the head, me at the foot. My nani on the couch in the bedroom. My uncle in the bedroom down the hall. My dad on the sofa downstairs, then upstairs wondering why he can't bring her juice as he usually does at midnight; wondering why he can't help her to the bathroom as he usually does at 2:30 a.m.

Her breathing, so light and with a moan on the inhale. Or maybe the exhale. Waiting. I get up. Work. I go back to sleep. And then I think about As I Lay Dying. You think funny thoughts on no sleep. You question whether you're the Bundrens. Your dad is like Anse. My mother is a fish. But everything seems clearer in the morning. Everything seems better in the morning.

Only it's not.

She's aware of us here with her. And I can't tell if we're doing enough to get rid of the pain. She can barely swallow down her pills. She can barely swallow. And we wait. We wait. Til 9 o'clock or hopefully earlier. Til the nurse will come and make something happen better. For us and for her. She still responds to me when I say, "Ma?" She'll say "Mama" (her nickname for me, pronounced Muh-ma).

It's okay. It's okay. It's okay.

Only it's not.

And I pray for deaths that are quick and quiet.

Soon ...

It's time. I'm not sure how much longer. But it's time.

Everything I think to write seems silly right now. Melodramatic. Dumb. That I'm writing at all right now seems like the silliest thing of all. But I needed to tell you because you've been on this journey with me for so long and I need you to be with me as I step forward, now, in some other direction. Dear hearts.

Queasy

And to top it all off, I think I ate some bad Chinese takeout for lunch.

My morning started at 5 o'clock, when I heard my mom at my bedroom door. She was convinced that we were either trying to take her somewhere (the hospital, I think) or that we were locking her in her bedroom. (At 3 a.m. the night before, she was convinced that my dad had bronchitis and needed to sleep downstairs.) By 6 a.m. my dad and I had coaxed her back to bed. She finally fell asleep by 6:30, only to wake up at 7 again. I found her in her bathroom, standing there, in just a t-shirt.

She's been asleep for most of the afternoon, but at around 11:00, after everyone else had left the room, she looked me in the eye and said, "I need to tell you something." She was lucid. "This will be very hard for you," she said in Hindi. And then, in broken words, she talked about money--and the rest of the family. I tried to assure her that everything would be okay. She slipped back into her disoriented state soon after.

I wish I could laugh more at how bizarre it is that there is no immodium in this house. I have my moments, I suppose. My aunt and I crack jokes with each other that no one else here would get. We laughed a couple days ago about how, when this is all over, both of us will be bald (both of us have been losing hair--my shower at home is clogged up). I made fun of her this morning for weighing herself on my mom's scale and misreading the number--worrying about gaining weight. It's all sick humor, really. Inappropriate really. And, really, not unlike the jokes the homecare nurse was making--except that we know our audience. Still, we both laugh loudly and nervously. I'm sure she'll joke about my diarrhea once she gets here with my immodium. I hope she will.

Snail's pace

Another hard, long day. I looked at my watch earlier this evening and was dismayed to see it was only 7:30. It felt like 11:00. And even now, it's only just after 10:00.

My mom grows increasingly disoriented. And it's just, well, a different kind of disorientation than it's been in the past and even than it was just a couple weeks ago. Even that gorilla conversation from before, the one that was so disorienting ... I knew exactly where she was. I could trace the steps she took to get from point A to point Z. Now, she feels so far--like the mom I know is already beginning to fade. She FEELS beyond recovery now. And so I feel like I'm doing what I can to make her comfortable and to make me who knows what and so ...

I'm not sure what else to say right now. More tomorrow.

Friday

Everyone here is shaken inside. And I spent the day thinking about how much I rely on your blog comments, e-mail, text messages, phone messages, phonecalls ... to keep me from tumbling over, flat on my face. Please don't stop. I also realized that my head is still in this place where I wonder what my mom will say about this whole experience once it's over ... what will she remember and what will she forget. And then also, today, I got scared that I would only remember her as she's been during the last six years. I have a hard time, sometimes, picturing her without cancer. Those images feel more like memories than realities. Still, it's a silly thought. My mom is my mom--with cancer or without. Of COURSE recent images are stronger, more present. And who needs the idealizing anyway?

Today was very long ... and though I got out of the house, it didn't do me much good. It's not even that I worried that I should be back with her. I don't know quite what it was, though.

This evening, we had a little birthday party in my mom's bedroom for my cousin. 21. Just my dad, aunt, grandma, uncle, and cousin. My mom seemed to be having such a good time ... but then, toward the end, she began trying to hint everyone out of the room. Brushing her teeth. Asking for help with her pajamas. Saying, "Okay. Bye." No one got the hint until she lay down in bed and turned on her side. When everyone finally left, she told me "Nothing feels good" (in Hindi--which I mention because something feels lost in the translation). I gave her an Ativan and she's resting now.

Blechhhhhhhhhh.

Labels, letters, lame jokes

A "home healthcare" nurse came to visit today. It's our way of easing us all into hospice.

And I just ... I mean, I realize I've been on the inside of this situation and I can't expect everyone to be where we are and to know what we know. But the endless and stupid questions and comments just seem so ... endless and stupid. "You have a lot of hair for having gone through chemo!" "Maybe I should go through chemo so my hair won't be so thin." And then you try to explain, even briefly, what the last six years have been like so they know why you're asking for their help and to explain to them how they can be helpful ... and you get nothing. They can give you nothing, I guess, because they see this all the time. I guess. "You're really lucky. Most people who hire us have no one." And it's not that I don't feel bad for those people. I do. But just because we have each other doesn't make us "lucky."

My mom had to sign six or so forms for the nursing agency. Each time, she signed her name differently . Sometimes, she would add an extra "p"--other times, she added several extra letters to our last name. Another time, she started over from the beginning in the middle. (Earlier in the morning, I sat with her while she "relabeled" all her pill bottles with creatively spelled drug names.) She finally got it right on the last form. The nurse didn't seem to care.

My mom's name (which means "love") in Hindi:

प्रेम

Yellow

The whites of my mom's eyes are completely yellow this morning--and her skin is beginning, slowly, to turn the same. Is itching related to jaundice?

I really believed that the effects of the new blood would last longer ...

Night

It's amazing what two units of clean blood can do for you. My mom isn't well, but she's a lot better than I expected her to be. And, according to my aunt, a lot better than she was a couple days ago. Still, she's in a lot of pain. She looks like she's in a lot of pain. And although she's lucid, you have to repeat what you say to her sometimes. Sometimes it's difficult to follow what she's trying to tell you. Sometimes it takes her a very long time to finish her sentences. Sometimes she doesn't finish them at all. Earlier today she kept on telling me, "That broken rock you gave me ..." and then "You know, the rocks you give me." I finally figured out that she was referring to her pills. I had to split one in half and it was jagged and orange when I gave it to her.

She slept for most of the day today. I made her mashed potatoes and gravy. My aunt made her some panfried fish. And then we all watched Jeopardy together and, I kid you not, one of the categories was PAIN, followed by, IN THE NECK. Both were categories dealing with the body and medical conditions and I just sat there thinking, "How does one get to be Alex Trebek anyway?"

Morning

Sorry for not writing last night. I got in late, spent some time with my mom, and then crashed.

Before leaving the hospital yesterday, my mom received 2 units of blood. The blood gave her enough energy so that, when she came home, she was actually able to climb the stairs up to her bedroom. She still has some energy this morning, but she's very weak. Drawn. Withdrawn.

Her thoughts are clear, though her words are few. Earlier this morning, she asked me, "Are you scared." I said, "A little. Are you?" "I'm okay," she said.

Time

I leave tomorrow for California, two days earlier than planned. I talked to her doctor this morning and his prognosis was "within one, maybe two weeks."

I'm very tired right now, but promise to write more once I get in tomorrow night.

Call, write, send over your warmest, strongest thoughts. (Amy I'll try to give you a call some time this week.)

Drowning

Tonight I'm realizing what a luxury it has been for me to talk about every single aspect of my mom's body. To be so aware of how every single organ is functioning. And, maybe, each time I sit here and write about her heart, her lungs, her liver, her kidneys, her brain, her skin, her breath, her voice--that's me diving inside of her, swimming around, getting to know her. It's the advice I give my students when they're having trouble learning how to closely read a text: dive into the words, swim around them, get to know them. Her body, the text. And I do feel closer to her because of it.

This afternoon when I spoke with her all she wanted was to hold the phone and know that I was on the other end. We didn't say too much to each other--it was hard to understand each other. But what I know is that when my aunt reached out to take the phone from her, she said, "No!" I promised I would call her back again. I did, and she sounded better the second time.

I thought I wasn't going to write for awhile because things have gotten bad. But I've realized that writing about her makes her present to me. Makes her meaningful to me. And she means a lot to me. And I need to know that and believe that--even when she's gone. Even when I don't have this physical, this body, this this this to hold onto.

I might be reticent about talking about things for a little while and I hope you understand. It's just too hard is all. My heart is breaking. But I still need you. I still need you.

Anybody want a peanut?

Piecing together what I learn as the cell phone gets passed from person to person in her hospital room. I spoke with my dad first who told me she isn't well. He gave me many details, but the one that sticks in my mind most is, "Sometimes when she talks, it doesn't sound like her." My mom then got on the phone and told me that she was actually doing fine. I let her humor me. And my aunt told me she would call me later.

Later, my aunt explained that, within the last 24 hours, her face has become sunken and small. Her arms are skin and bones. The bottom of her body remains swollen with fluid. It took my aunt two hours to help my mom go to the bathroom and then put her back in bed. She's spending the night at the hospital with her.

Am I downer or what? To quote from The Princess Bride, "BOOOOooooooooo. BOOOOOOOOOOOOO."

And also (unenthusiastically), "Humperdinck, Humperdinck ... Humperdinck."

Kidney

Kidney, not liver. But how was I supposed to know?

I mean, I should have figured. Plan C, to recall, is dialysis. I should have been able to guess from that that it was kidney, not liver. I think maybe I suspected. But then maybe everything surrounding "liver" (the vocabulary, that is) had become so familiar that I got attached to the idea that the symptoms she was exhibiting had to deal with liver failure. And plus, if it were liver failure, it would have been the fault of the cancer. But kidney failure is the fault of the treatment directed against the cancer. Fuck this disease. Also, fuck reading material on dialysis.

The dialysis machine sucks up your blood, cleans up the impurities, and then sends it back into your body. Blood is life. Blood is life. It's like a goddamn vampire machine.

Currently, my mom has just started Plan B ... meaning that she was admitted to the hospital early this afternoon to begin albumin infusions. Although the lasix helped to take off some of the water, it wasn't nearly enough.

Swollen

My mom has gained about 18 pounds or so in water. She called my aunt yesterday morning to tell her that she doesn't fit into any of her clothes. My aunt went to a sports clothing store and bought her some new sweatpants.

She went to see a nephrologist (my spellcheck doesn't know what a nephrologist is) today and he suggested the following:

Plan A: Up the dose on her lasix in addition to two more diuretics to try to get the fluid out of her system. Monitor her weight daily. If the lasix works, she should lose 2-3 pounds a day.
Plan B: If after 5 days, she doesn't show any improvements, go to the hospital for two days to receive albumen infusions.
Plan C: If plans A and B don't work, she'll have to get dialysis done. Two times a week.

Given that, she sounded good when I spoke with her today. Better than she did the last couple days, anyway. When she laughs, though, it's a heavy laugh. I kept telling her I'll be visiting on the fourth, and she kept saying, "the fourteenth." Finally, she said, "Meh, it doesn't matter. I won't remember anyway. You just come to the airport whenever and give someone a call and someone will pick you up." We also laughed about something but I can't remember what now.

And her oncologist is an asshole.