My flight leaves tomorrow morning at 7:30.
I have so much to say that I don't have anything to say ... and plus, wow, it's like my family is a crap magnet. I'm taking my big boots because I think I need to kick some serious ass ... or, you know, at least have proper foot protection for plodding through the crap. And my cat seems to have finally forgiven me for being away.
I need a mantra. And it shouldn't be "You go girl" or "Things could be worse."
Southerly's "Cold Caller" featured on NPR's "Song of the Day"!!
And you can also listen to "Close to the Crime" (which is awesome) here.
Hooray Greyday (where you can also purchase the album--hint hint hint hint shameless plug shameless plug shameless plug).
I haven’t been keeping up on the news for the last month. True ... while I was at my parents’ home last week, my brother and I would catch the 8 o’clock repeat of The Daily Show. But I didn’t learn much about the world. Without concrete knowledge of recent events, what I saw didn’t do much but produce a shallow laugh. My brother laughed louder ... he’s been keeping up. But I’ve been avoiding that kind of concrete knowledge. My world is tiny right now. Perhaps repressive. Perhaps self-aggrandizing. Perhaps naive. But it is what it is.
Today, though, I turned on the TV and Katie Couric informed me about the London terror plot and how I should beware of suspicious looking vehicles. She also told me that we can look forward to increasingly segregated classrooms. And she finally told me that Joel Siegel died of colon cancer (I wondered if she would mention her husband and tell us to ask our doctors about colon health ... but she didn’t). I never watch Katie Couric--but I’m glad that hers was the news I caught today. She enabled me to justify hiding my head in the sand a little bit longer.
But the problem is that I do well when I have concrete THINGS to deal with--known quantities, entities, issues. The abstract and unknown make me nervous. Don’t get me wrong ... I love change. But that anticipation before the change, I HATE that. And where I am right now feels so unpredictable. The only thing I know, in fact, is that I'll be left with an incredible void in my life. I don’t mean to wax existential (I’m in the middle of reading Alison Bechdel’s Fun Home and I’m certain some of her Camus-inspired musings are coloring my thoughts), but I don’t like the way things are right now. And I feel helpless to do anything about them.
But there are the small things, I guess, I do for myself and the people I love. And I guess I need to remind myself that that’s where life really is ... where it counts ... and what I can hold so tightly and close to me. My drunken e-mail to you, the promise of her secret, his lunchtime joke falling flat, her eyes that hug, a shallow complaint made again, and again, and again, and someone so amazing to whom to make it. The big ideas?--they can suck my ass-stick.
And I’m pretty sure that that’s the dumbed down and personalized version of Camusian absurdity ... and, man, that’s annoying as hell.
So the nice lady on the phone told me I should write to British Airways Customer Relations. And I wrote a first draft of a letter this afternoon. And it's impossible and disgusting to have to write this letter and explain to them why they should give me my money back because my mom is sick. I had all these parantheticals in the letter (insert ticket information) to remind myself of what I should include in the letter (insert dates of travel)--all embedded in discussions of why I can't leave the country right now. And it's gross. And the question of whether I've written a "good" letter is gross. And the question of whether they'll read the letter and think, "We should reimburse her," is gross. And the thought of, "If you need to see evidence of my mother's condition," is not only gross, but ridiculous, and embarrasing, and stupid, and what-is-wrong-with-me? Which itself is also gross.
Sorry no updates last night.
Everything is pretty okay right now ... regular, even. My mom's continuing to do well (though her liver mets were bothering her again). I'm eating fish tacos (well, not this very moment). And I feel inspired to get some work done.
This morning I will attempt to take on British Airways. And then I will attempt to take on my book orders. Both while spinning plates on my nose and fire-hula-hooping on a highwire fastened just above a tank of hungry sharks. And then I'll eat sushi, which, HOORAY for little pieces of raw fish wrapped up in rice with all manner of other good things.
Remember how, before, it was all about go go go go. Now it's all about don't go don't go don't go don't go. Today, my mom took my hand in hers and said, "I'm not going to say anything. I'm not going to say anything about how you're leaving tomorrow." I tried to convince her (and myself, really) that Sunday really isn't that far away. But these days are so long. These days are so long.
We've grown accustomed to each other. We've developed habits--how she'll rest and how I'll rest with her. I've been the one bringing her her lunch and dinner plates--just so much, just so much. She'll say my name with that certain look and I'll say, "Ativan?" She'll nod and I'll go get her pill. You become attuned to the bodies that are close to yours. Their needs.
So why am I going back? I don't know. I have my reasons, I suppose ... but they just don't feel like very good ones right now. To get away? Relax? Pay bills? Remind myself of the other life?
Well, they're okay reasons. And important. I guess they just feel a little selfish. A little indulgent.
But I wouldn't go if I didn't feel like she was doing well, all things considered. She still has some pain that breaks through the meds--but she seems to be in such a better place than she was just a few days ago. I worry about what Wednesday's chemo treatment might do ... but they're starting her off with a very low dose (which, well ... if you haven't got anything nice to say?). And, plus, her grandchildren will be arriving in a couple days.
So--it should be okay, right?
Transformers anyone?
EDIT: Awww. It doesn't come out til after I leave Seattle again ...
The plan, as of now, is to return to Seattle on Tuesday and to come back here on Sunday.
Her energy level is good ... though that "sick feeling" has returned. She's supposed to go in for a chemo treatment on Wednesday. I have no idea. I have no idea.
I mean--if the toxins are what have caused a lot of her recent problems ... then, um ...
And her liver mets are starting to bother her once again.
If it's not this, it's that. If it's not that, it's this.
I feel like I've gotten so accustomed to the ups and downs that I'm not the best judge of how she's doing right now. You fall for it ... the hope. It's so easy to fall for it. She was absolutely convinced she wouldn't start chemo again, but her oncologist was SO incredibly encouraging that how could she say no? Still, he looks at me disappointedly with this "you know too much" look.
Well, this sucks. I've had chest pains all day. They're kind of like the ones I would get in grad school from stress. Kinda heartburny. As I haven't had them in years ... I'll chalk it up to a combination of stress and too much of my nani's cooking, and I'll assume they'll be gone by tomorrow.
I spent the afternoon hanging photos in the hallways with my brother. My parents moved into this smaller house a couple years back and never found the time or energy to hang the family photos. My brother was careful to keep our worst eighties photos off the walls. And we got excited together over a couple of really old ones of my mom and dad--and one of the two of us, when I was a few months old and he was three, and we were sitting in my dad's big, black, vinyl office chair.
And some of you wanted to see photos of my mom and so here's one from way back when. 1976, I believe ... 
The shit hit the fan today. My mom is doing relatively okay. Her liver mets are starting to give her some pain ... but not so bad that she needs to take extra doses of pain meds. Her energy level has been better ... she's been holding longer conversations and cracking jokes. Her temperature has been running between 99 and 102 ... but it immediately responds to advil. I still worry about her lungs--her breath was crackling when I watched her sleep today. But she's doing okay.
The shit on the fan has to deal with other family problems that I can't talk about here. I want to assure you that none of it is immediately related to me. I'm okay. You know, considering. Details in private.
I'm still considering the possibility of coming back to Seattle on Tuesday, as scheduled. But I have no idea whether that's possible right now. Will let you know. Because, my god, I'd kill for time spent with you. Today was one of those days when I had to step back and consider that all this is REALLY happening. Most days, you just go with it. There's always something to do. Even when you're just sitting there, there's always something to pay attention to--the time, the breathing, where the sunlight hits her bed. Today was the same--but my head would get clouded and I had to catch myself and say, "Stay with this. Stay with this." And if not that, then the pounding at the back of my head--when I wanted to cry to her, "Don't leave me."
And P.S. I'd kill for time spent in ANY of those cities where you live, not just Seattle and Tacoma. Teleportation, anyone? Laurie ... pod system?
Today I began to wonder if the reason no one says anything about my mom's elephant is because we're all a bunch of monkeys. Dumb monkeys. Yesterday, I had this gigantic stick up my ass and I tried, today, to pull it out ... but it turns out it's pretty happy right where it is. I feel like such a dick. I'm crabby. I'm ungrateful. I'm mean. I'm territorial. I'm easily annoyed. Certainly, I'm annoying as well. I know I need to allow myself these days. But, god, I need to get over myself.
And I also need to learn that I can only do so much ... I can only take on so much.
It's fairly clear to us now that my mom had pneumonia ... a mild case of it. She seems to be doing somewhat better--especially with her breathing. Her lungs have cleared up quite a bit in the last couple days--and the albuterol they gave her seems to be helping her when she does feel short of breath. And she's got a lot more energy, too. Her sense of humor has even returned. But then she pushes it--like she spent a good portion of today out of bed and then wound up with a fever. And then when the fever broke, she got out of bed AGAIN, and then later her temperature went up again. She also needs to be really careful with how much work she's making her heart and lungs do ... but then I feel like such an ass when I say stuff like, "Are you SURE you want to go downstairs?" "Are you sure you want to leave your bed?" "Are you sure you want to pretend that you're not sick?" And of course, I would never ask anything like that last question ... but that's what I feel like I'm insinuating sometimes. And why shouldn't my mom be able to get up and go downstairs and hang out for awhile if she's feeling well enough at the time? But how do you enjoy those moments when you're feeling better when that enjoyment just makes you feel worse later? So what do you do?
And my mom knows all this. We talk about it--how frustrating it is for her because she does one thing, and then another thing happens. And then she tries to make that better, and that makes something else worse. The albuterol helps, but she shouldn't take too much because it can increase her heart rate. She needs to eat and gain weight to get energy, but she needs to be careful not to eat too much because any sudden weight gain will be hard on her heart. She needs to do this, but she needs to do that. Turn left--NO WAIT, turn right! Stop, slow, fast, go. I do not like green eggs and ham, I do not like them, Sam I am.
I'm taking a bit of a break right now because I'm so tired that I'm useless. And I keep snapping at people. And, plus, some rest is a good idea because I need to pick my brother up from the airport at 11:00 tonight (LAX is about a forty minute drive away). Also, by the time I get back, I'll probably be too tired to blog. The big news is that my mom was just informed that she's getting released from the hospital later this afternoon. She's a bit surprised--i.e. not ready. And I'm not quite sure of what to expect because we were never really told anything definitive about anything. So, maybe I too am a bit surprised--i.e. not ready.
So how's about I slip into denial mode and share a bit of my dreamscape from the other night?
Part of it involved Sylvester Stallone, of all people. I NEVER think about Stallone. I've seen the Rocky films, though never Rambo. I don't find him the least bit attractive. But in my dream, we were married (????) and we were madly in love with each other (?????).
We were on the phone. I was at home (our very, VERY big home with walnut cabinets and wainscoting), wearing a blue suit with my hair all up. And he was at work (but I don't think on the set ... I don't think he was even really an actor in the dream). And we were talking about how I would be going out of town and how he would be coming home soon to say goodbye and I think we were talking dirty to each other (!!!!!). I tend to dream lucidly, and I remember thinking, "Really?!! Sylvester Stallone???" But then we were clearly in love, and so I said, "Well, okay."
And then the dream changed and I was working for this covert animal rescue team. We were busting into this lab to rescue the animals. There was this evil scientist, who OF COURSE shared a striking resemblance to my mom's oncologist, holding a giant syringe. And I think I was in love with someone here, too--a fellow rescuer. And he was all cute with his khaki jacket and animal activism. And we rescued the animals--ferrets and kittens, I think.
I'm not sure which version of life I prefer. But I do wish that real life ran more like narrative life ... at least at this present moment. Narrative life, I understand and can make sense of--even at its most nonsensical. Real life, I have no idea--and I feel a little helpless and a lot like I'm just waiting for things to happen rather than being able to do anything about them. And mainly I just want it to all go away.
I'm eating blueberry ice cream instead of drinking wine right now. The wine will come later. A couple hours ago, when I showed up at home with some take-out pizza, my dad said, "Shall I get some cold beer to go with it?" And he took out a six-pack of Bud and I smiled inside.
Today was a very long day, largely spent at the hospital. My mom's oncologist suggested what I had thought--that, maybe, the mets in my mom's lungs are making it difficult for her to breathe. Of course, he danced around the subject ... and ended with a "CHEMO, CHEMO, CHEMO" cheer.
About an hour later, a pulmonologist came by and explained that it's not just her lungs, but something is happening with her heart. Because my mom has no history of cardiovascular problems whatsoever, his theory is that the toxins from the chemo (recent or six years' worth, who knows ...) have damaged her heart. You hear that a lot, right?--if the cancer doesn't get you, the chemo will.
They've given her an inhaler to help open up her bronchial passages whenever she feels short of breath. And, likely, when they send her home next time (we're not sure, yet, when), it will be with an oxygen tank. The word "pneumonia" also came up today ... in passing ... and, I think, in a precautionary kind of way. The nurses are monitoring her vitals very closely.
It feels, lately, like too much talk. Too much talk. Was it just a couple weeks ago that I was writing about her liver and her albumin levels? NONE of that has come up. NONE of it. When I was sitting with my mom today, she said, "They all said that the liver would get worse before the lungs."
My aunt told me that when my mom went to the ER the time before this (when I was back in Seattle), they ran into the husband of one of my mom's former patients--a fireman--at the entrance. My mom hid her face--embarrassed by the way she looked. But he said to her, "How are you, gorgeous?" (Apparently, he always called her and my aunt "the two gorgeouses.") And my mom started crying, and he started crying, and he pulled out photos of his children from his wallet to show to the nurses and said, "She delivered all of my children."
And I don't know what to do about the fact that I'm wishing for things that can NEVER happen anymore. Like even one more trip to the fucking zoo. And so we move onto the wine.
The breathing got really bad again today. She's back in the hospital.
It's still too early to tell what the problem is. The ER doctor said something about a possible blood clot in her lungs ... in which case they'll give her a blood thinner. The thing is that they did all the scans in the world the last two times she was in the hospital to test for blood clots--and nothing showed up. My best guess is that her lung mets are the culprit. You hear people talking about lungs rattling, but actually hearing them rattle is a whole different thing. We take for granted how easy it is to breathe. To breathe deeply.
The thing is that only one of the several doctors that have seen her in the last few weeks have openly associated any of her health problems with her cancer. And I, for the life of me, cannot figure out what they're trying to accomplish in doing so. It's like her cancer is the elephant in the room--the elephant in her body. I mean, I get that all they can do right now is to try to balance out her body so that it's functioning okay. And I'm happy that they're doing everything they can. But all this talk about heart failure, and high blood pressure, and panic, and and and and--making it seem like it's her body that's failing her when it's actually this fucked up disease that's the problem. Take another Ativan and you'll calm down. Did you take your Laxipro? Oh it's nothing. Oh it's nothing. Fuck you.
I'm exhausted.
I owe all of you e-mail and phone calls ... and promise to get to that soon. Really quickly, though, thank you SOOOO much for the photos, the bedside bottles, and all the other distractions and kindnesses of all varieties. All of it means worlds to me ... and is what pulls me through the days. Thank you, dear hearts.
I wonder whether posting in the morning would be better than posting at night. Yesterday, I was thinking about how, much like when I'm sick, I wake up in the morning and feel like things are okay. The house is quiet. And my bed is like comfortable armor. But then I get up, brush my teeth, take a shower, and something lingers. And then it's there, in my face. But these moments, awake, in bed ...
Sure, there's denial in there. But we need a little denial to help face the day.
Yesterday was largely ... well, I'm trying really hard not to measure things in terms of bad and good anymore. It's impossible ... right now anyway. But I wonder if would be just a little bit easier to deal with my mom's illness if we didn't have to measure everything in terms of bad and good? It just becomes so painful when you have a little bit of hope, or maybe normalcy, and then you get it ripped away from you. But I don't know how else to do it right now.
But yesterday was largely good. My aunt and I went grocery shopping at a persian market that serves fresh-made gelato. And my mom was good throughout the day. But so good that she pushed herself to the point of exhaustion. We know better, now, what to do ... and what not to do. Hopefully. Hopefully.
Keep the good thoughts coming. This armor is warm and soft.
Which makes me think ... when I was in India, I noticed this habit that families and friends have of all amassing on someone's bed (the beds in India are HUGE) during the afternoon (or, really, whenever there was free time and everyone was around) and gossiping, chatting, laughing, etc. I like that idea very much right now. Party in Mita's bed! Umm ... I mean ...
Watching her sleep today was hard.
She was up all night last night from a pain in her neck muscles that extended all the way up through her head. I slept soundly through the entire night. How dare I?
So she slept through much of the day today. Her sleep is uncomfortable. She grinds her teeth. Her face twitches. Uncomfortable sounds escape from her mouth from time to time. My dad uses that phrase a lot ... "time to time." Whereas we say "sometimes," my dad says, "time to time." He also says "shall" instead of "will." "I shall go to the store." "I shall check the mail." "I shall take care of it."
My nani and I watch her sleep. And she whispers to me her regrets. "I knew she was sick. Her body was purple. And I knew she was sick." I can't imagine. She lost her husband when my mom was 16 ... from leukemia. This watching is hard work. If she skips just one breath, you start to panic. Not yet. Not yet. Not yet. And she always breathes again.
And it's strange, the things you become comfortable talking about with each other. Like bowel movements. And how, when she was in the hospital, my dad asked me if she would need more panties. My mom is unashamed of her distended belly. Could give a rat's ass about the grey in her hair. We trim her nails for practical reasons.
We all sat around the dinner table tonight and watched Family Feud. One of the questions was, "What was Paris Hilton's first word as a baby?" And my mom and I agreed on "Drink," which wasn't one of the answers. We laughed. It's hard for her to keep her head up. She falls asleep so quickly. She went up to bed soon after.
I don't want her to go.
And I miss you all so much and would give anything for an hour at Guadalajara or at Liberty for drinks or spent on late night Buffy watching or just, just, just, an hour that would remind me of everything that's going to make this, eventually, okay. My aunt and I have planned a short outing for tomorrow, just the two us, to get away, if it all seems okay.
(Thanks for the distraction, TG.)
The zombies have finally made it past the security gate (ah, yes ... California tract house living). I figure it will be another couple hours before they actually make their way down the street to my parents' house (slow, zombies are SLLOOOWW). By then, National Zombie Awareness Day (I got that wrong, didn't I ...) will be over and I think the zombies will all just *poof* go away. And that's good--because apparently this house has no intention of facing death just yet. Not even the metaphorical kind. But, to play along, if the zombies do make it here in time to eat me, or they don't *poof* go away come midnight, I have my trusty bedspread here to hide under.
Believe it or not (well, no, I can't say I'm "walking on air" exactly--whatever happened to William Katt anyway?), my mom came home from the hospital today. Both her pulmonologist and her oncologist signed her release papers and she arrived this morning at about 11:00. My nani (mom's mom) and I changed the sheets on her bed ... and then we went out back where she prepared lunch and I pruned my mom's rose garden (I can't grow a garden very well, but I'm an expert pruner/hedger/cutter-upper). *insert Alison's comment about my office plants*
And all day, she's been relatively good. She's been eating well. She's had minimal pain. No sign of the panic attacks she's been having (my aunt seems somewhat understandably traumatized by the two nights she spent in the hospital comforting my mom). Looks like the doctors were finally able to achieve some kind of balance in her body. Either that, or the Lexapro they prescibed for her is making her feel so optimistic that she doesn't register any of the crap. Probably a little bit of both? Plus the blood pressure medication. Plus the lasix finally started working. Whatever the case, we're all very glad she's home, resting in her own bed. Even if this is just a short respite of ups before another round of downs (we know too much about what's happening to her body, now, to be too optimistic), we'll take it. And enjoy it.
And life besides is still moving forward in its own sad, unfair, and heartbroken way ...
No movie-viewing tonight. My aunt is spending the night in the hospital with my mom. She's been anxious--and the meds aren't helping too much. She needs someone to sit with her ... and she's chosen my aunt to be that person. Which is fine--in many ways, she's exactly the right person.
But I feel very distant--in part because I didn't go to the hospital today. I woke up this morning with a scratchy throat--something that I felt coming on for a couple days. I decided I couldn't risk taking whatever it is that I have to the hospital with me. I think I'm feeling better now, but we'll see in the morning.
But I also feel distant because, today, that's how my body is deciding to cope. I don't like it.
My mom thinks that I stayed away from the hospital today because it's been too much for me to handle. She said on the phone to me that I need to face facts. Something like that--except not as mean sounding. I tried to reassure her that I really do have a sore throat. And it all reminded me of times in the past when we just didn't get each other. Unintentionally hurtful times.
I spent the day with my grandma, though, taking naps, telling stories, and watching game shows. I had no idea that she used to speak Nepalese.
The results of the echocardiogram are in (what, like it's a competition?). The day my mom came to the emergency room (last Thursday), she had mild congestive heart failure. My mom's doctor assured me that "mild" meant mild ... and that she's been steadily improving. And then he told me, "So you REALLY should go to England." I thought, "Screw you."
Today was a rough day ... full of ups and downs. Each time I felt like she was doing better, something happened to suggest otherwise. The biggest problem she seems to be having continues to be her heart--she's having a rough time breathing; she's on oxygen for a good part of the day. The problem seems not to be the lung lesions, but the fluid that's collecting in her body. The lasix is helping to reduce the amount of fluid and salt in her system so her heart won't have to work so hard. And suddenly I'm feeling incredibly guilty for the dinner I brought her tonight--a noodle dish I had made her with probably too much soy sauce in it for someone who recently had mild congestive heart failure.
We had a scary moment this evening when my mom suddenly felt a pang in her chest area and went into panic mode. She looked at me and said my name ... I was sitting at the foot of her bed. My aunt and I rubbed her legs and arms. She held out her hands for us to hold them. My dad took off his glasses and started rubbing his eyes. Slowly, she calmed down.
I'm sorry for making you read all this. I wish I could share thoughts about gumdrops or something. Earlier today I thought it would be nice if I would just write a post about the simple, everyday thoughts I've been having--and the simple, everyday actions I've been doing. They do happen. I promise.
Tomorrow night, there's a good chance that I'll be spending the night at my aunt's house. We might watch a movie (she just got Blood Diamond and The Departed on DVD). So if I don't blog tomorrow night ... that's probably why.
I miss you all.
Her heart seems to be doing better today. They've taken her off of oxygen and her blood pressure has gone down quite a bit (I learned today that when she went to the emergency room on Thursday, her bp was 210 over 100 something). No one has given us the report on the echocardiogram that they did yesterday, though. You try to be patient (no pun intended ... but, yeah)--knowing that they have so many other patients to look after. But then, ugh, would it be that difficult to be a little more efficient?
Or a little quieter?! I swear--all the rolling carts and beeping IV monitors and daughters screaming at their dads, "POP, YOU CAN'T GET UP OR THEY'LL RESTRAIN YOU."
Oh, and also, very hard to get straight answers. The pulmonologist said that her heart was struggling because of all the fluid retention in her body--but he couldn't tell us whether the lung lesions were also causing stress on the heart. And whereas her oncologist wanted her to get a renal ultrasound done because her creatinine levels have been steadily increasing (a sign of kidney failure), the pulmonologist said that the increased level was a side effect of the lasix she's been taking to help get rid of some of the extra fluid in her body. It can't be that much of a guessing game! But it can.
Otherwise, she's been nauseous for the greater part of the day. A little less loopy. And she'll also be getting a blood transfusion tonight--two units--because her hemoglobin count was low again. The order for the transfusion went in at 9 am ... and she still hadn't gotten it by the time we left at 9 pm.
Still--I'm thankful. The hospital is giving her body all those things (albeit slowly) that it doesn't seem to be supplying on its own.
Tired. And there has to be a dignified way to share how my mom's antics with her hospital bed this morning reminded me of that episode of The Simpsons. But, nope, too tired to try.
I went to the hospital immediately upon arriving this evening. My mom had just finished eating some dinner. She looked much better than I thought she would--much less edema in her legs and face. She was sitting up in bed and I sat next to her and we hugged--long and strong, a few times. She kept pulling me back to her giddily--loopy from the pain meds. She remained lucid throughout the visit ... just a little loopy. High. I didn't fight it. I let her pull me back, each time, and laughed with her. It feels good to be back here again.
The news I learned today is that she is now in danger of heart and lung failure. She's been having a hard time breathing, and the sense that we've gotten (her damned doctor just sugarcoats everything and what my aunt was able to learn was largely from the nurses--one who was a former patient of my mom's) is that the tumors in her lungs are growing and are threatening to crowd out her heart. We knew this information earlier, right?--about the tumor close to her heart. But we were so much concentrating on her liver that we let slip her heart and lungs. My mom told my aunt, "Of all the ways that I thought I might die, I never thought it would be from heart failure."
It's strange to be in these hospitals where my mom once worked--where she once brought life into the world. I can't imagine what it's like for her--seeing nurses, former patients, lab technicians. My aunt was telling me that a lab tech went up to her and said, "Is that ... Dr. Mahato?" I think about what my mom use to look like--with her long curls and her silk suits and her doctor's coat. So poised and so proud. Patients would come up to us in malls, restaurants, parking lots, and say to me, "Your mom is so incredible." It's strange to see her so weak. I remember so clearly this one day when she came home from surgery--I must have been thirteen or fourteen--and she showed me, triumphantly, this polaroid of a benign tumor she had just removed from a patient's uterus. She said, "It was the size of a watermelon!"
I feel very far away right now. When I said bye to her on the phone yesterday (last?) evening, we laughed and joked about how we couldn't say bye. No you hang up, no YOU hang up, kind of thing. My dad is staying with her in the hospital tonight.
I thought I would write more, but my words feel very small and trite.
Change in plans. I'll be leaving for California on Saturday instead of Wednesday.
I called this morning and everything seemed okay. She had forgotten that we had spoken yesterday ... her days get confused. You could also tell that she was trying very hard to appear to be okay to me. But, still, she seemed lucid--strong.
But when I called later this evening, my nani picked up the phone and informed me that my dad and my aunt had taken her back to the emergency room. I called my dad's cell phone and learned that she had had a severe panic attack. While I was visiting last week, she had told me that whenever she would nap during the day, she would wake up with this incredible feeling of discomfort--panic. This time, it was worse than it has ever been. So bad that she couldn't breathe.
One of her doctors (the same doctor who takes care of my dad's heart) wanted her to stay at least overnight. Her blood pressure was high (I imagine that the panic does that ... but it doesn't help that high blood pressure is a side effect of Avastin).
I spoke with her and she sounded good--but, of course, my aunt told me later that she was faking it.
So I go back on Saturday not knowing what to expect.
Thank you all for your kind and sweet and patient thoughts. You'll have to forgive me for what I say or fail to say or if I say too much of or don't say enough of right now. And, just thank you.
Not much to say today. She went to her oncologist and received an Avastin infusion in the morning. The doctor would also like her to take oral Xeloda ... but she's not quite convinced that she should do so. My aunt says that her thoughts are still scattered. She was fine all day ... but then this evening, she became confused and anxious.
I'm exhausted.
I also just read some cancer support forums on-line--about people with liver mets and how well they're doing right now. Little bits of hope (however inapplicable) every now and again make it easier.
... As does a cat that follows you around the apartment and falls, kerplunk, at your feet--demanding ear scratches.
She had a fever of 102 today. When I spoke with her, she was trying so hard, so hard, to have a "normal" conversation (whatever the fuck that means) with me. I don't know whether it was the fever, or the morphine, or the liver failure, that made her incoherent at times. She mentioned music she was hearing. And then she also talked about how she would, every now and again, get scared because she thought her bedroom was a hospital room ... and then feel relieved again when she realized it was her bedroom. She mixed up words. She tried so hard to sound "normal." I tried so hard to respond patiently, with understanding, and without pain.
I told her that I would be arriving next Wednesday ... staying until the 26th. She said, "Well, if worse comes to worst, you can leave for England from here." It makes sense, in some ways (the sentiment, not the suggestion). For the last six years, I've prioritized my life and my career over her health. Now, she wants to do everything she can to ensure that I'm doing what, she's come to understand, makes me "happy." I'm not blaming anyone here. It's just the way life has gone forward. And, in many, many ways ... I've followed in her footsteps.
I have one more week, now, til I head back. It feels like a lifetime.
She keeps telling me about how frustrated she is that she's not comfortable anywhere except in her bed. And I keep telling her, "It doesn't matter. Who cares?" It sounds softer in Hindi, for some reason.
I spent the bulk of today rereading Sandman from the beginning.
In #4, "A Hope in Hell," Dream attempts to recover his stolen helmet from a demon named Choronzon. Choronzon challenges him to a game in which each takes turns conjuring up beings or things that might defeat whatever the opponent summoned. If Dream wins (that is, if he conjures something that Choronzon cannot counter), he gets his helmet back; if he loses, he becomes a hell slave.
Choronzon starts with a wolf; Dream answers with a hunter on horseback; next a stinging horsefly to buck the horse and throw the hunter; and then a spider, catching the fly in its web. The battle continues--snake, buffalo, anthrax even--til Dream realizes how to beat Choronzon at his game. He escalates the scale of the battle; it quickly becomes planetary, gallactic, cosmic. Choronzon, in what he believes will be the winning stroke, conjures "anti-life, the beast of judgment ... the dark at the end of everything, the end of the universes, gods, worlds." Dream responds with "hope" ... leaving Choronzon speechless and defeated.
I spoke with my mom on the phone for a good twenty minutes today. It's been a long time since she's been able to hold such a sustained conversation. She usually tires very quickly these days. She exclaimed to me, "I have good news!!!"--and she reported to me that she had finally had a bowel movement. Morphine is painfully constipating and she had been stopped up for days, exacerbating her general discomfort (I'm just short of certain that she would be upset with me for sharing those details).
She also had a doctor's appointment today. She was talked into continuing some of her chemo treatment starting Wednesday. The doctor will lower the dosage, and also is only giving her one of the pair of medicines she had been taking. I asked my mom how she felt about it ... and she said she was okay with it. I think she actually meant it. She says that she's been managing well on the pain medication. And she's been eating fine. The doctor also gave her another prescription to help regulate her blood pressure--and some lasix to help relieve the edema in her feet and thighs. The doctor explained to her that he wants her to go back on treatment to help give her liver a fighting chance--if the liver is just a little better, it will start producing some albumin (which is still very low). All things considered, she seemed to be having a good day. She seemed ... hopeful. A part of me feels that that's ALL the doctor wants to produce in her--a sense of hope.
My dad's blood pressure was up to 200 (systolic) again. He went in to see his doctor, too, who prescribed him another medication in addition to the one he's already been taking.
I just bought a plane ticket for a two week visit that will start on Wednesday, the 13th.
And what I realized today is that hope and sad reality can coexist if you want them to--or maybe because they have to? I know things are bad ... but it was nice to be able to rest in hope for a bit today. Sweet dreams, Sandman.
On my birthday last week, I went for a walk to make some phonecalls (I get little to no reception in my parents' neighborhood). As I walked back to my parents' home, I saw my mom driving toward me. She stopped the car, rolled down the window, and said she would be back soon. I said, "Do you want some company?" She paused and then said, "Oh what the hell. I'm going to get you a cake." And she gestured for me to join her.
I waited in the car while she picked up the cake (that way, I told her, it would still be something like a surprise). And then we went to another store where she got some balloons for me.
This was the first time that my mom had been out of the house (other than trips to the doctor) for over a month. It will likely be the last. It was the day before she went to the emergency room. The short trip exhausted her, but she carefully arranged the balloons above the dining table as soon as we got back. That night, she was in miserable pain, but she sat at the table and, bite by bite, silently, and maybe a little forcibly, indulged in a piece of cake.
It breaks my heart that what may have been one of her final free gestures was all for me. I kick myself when I remember that I thought, however briefly, that this birthday was anything like mediocre.
It hurts to be away from her right now. It's not difficult to move, do things, distract. These things come easily. They have to. But there's a heaviness inside of me that, though shaped differently--as sometimes guilt, sometimes pain, sadness, loneliness, helplessness--is always there. It serves as odd comfort. Something concrete. A reminder.
Rereading the posts I've written thus far about my mom, it strikes me that everything I wrote while I was with her is so visceral. Now, I'm forced to think abstractly about how she is. My aunt tells me she's well. The pain is under control. She's eating what she can. Her blood pressure is high, but not worrisome--same as her temperature. But I can't see her face or touch her skin. And I need to accept that that's precisely what's comforting for her right now--to keep her daughter from pain. And I do accept it. The evening when I talked to her on the phone and she told me, through her sobbing, somehow, about the lesions on her lungs, she also said, "You are my only daughter"--so sad for what she felt she was putting me through.
This process is forever, I think. Thank you, again, so much, for wanting to help me through it.
My first day back and I already feel like a great gulf is between us. Why won't you let me help you?
I talked it over with my aunt today and we decided that it might be best for me to go back NEXT Wednesday instead of this Wednesday. We decided that my mom doesn't want me there right now. It makes her try too hard. She's not at peace ... when I'm around. She doesn't want to see me hurt. I make her want to be better too much ... and she can't be better right now.
I went out tonight. Made jokes. Made laughter. Answered questions about my mom's condition. It was fine. It was fine. I feel like cardboard. And ashamed that I can so easily slip into some semblance of normalcy. I'd rather feel my head exploding and I'm sad that I'm numb and attempting laughter instead. I imagine that every day will bring something different?
So, for now, I lurk. Abstract. Cold. Idiotic.
One thing--on the plane, I sat next to an older man from Edmonton who asked me why I was in California. He told me that his dad died from lung cancer six years ago.
It's hard for my mind to let her be person and not just mother. I feel like such an idiot for feeling so comfortable at home.
I'm drunk and tired so don't know how articulate or detailed this post will be. The tone conveyed in that sentence doesn't quite work, though. Your challenge today: determine my tone. While juggling forty eggs. Or, you know, not. I'm a little tired is all. A lot tired actually.
My mom is home today. It was a long process. Very long. Even reflecting back on today alone feels like I'm reflecting back on an entire week, at least.
We (my aunt, my brother, and I) went to the doctor's office to pick up some prescriptions for her and to ask some questions. The doctor was very enigmatic ... a few weeks, and then some months ... til he finally settled on 6-8 weeks. Engimatic, but blunt. It was needed. The cancer is covering her liver. There are growths on her lungs here, here, here, and here. If not liver failure, then pneumonia or or or. Some chemo might help. If she wants it.
My mom is resting in her bed right now. I asked my dad to change the sheets this morning before we left for the hospital to bring her back. I've been rubbing her back and asking her about the book she's been reading (a copy of Sisterhood of the Traveling Pants that I got for her). I try to give her normalcy.
She paces the halls--a little walking to help the distension in her abdomen. She leans against the wall as she walks. Those slow steps. Huddled. Small. How is she doing this? I massage her feet, her legs, her back ... and she doesn't mind. And then she stops and minds. I let her call the shots.
I'm okay. But I find myself talking myself through my actions. Telling myself I should turn down a street. That I should charge my cell phone. Out loud.
I come back home to Seattle tomorrow--and will likely come back here on Wednesday. She wants me to go back home to Seattle and then proceed to England. Do not pass go. It makes her feel, I think, that I will go on with my life and be everything she wants me to be when she's done. I'm willing to do everything I can to make her believe that--even though I KNOW I'm not going to England. She said she was glad to be back home. She's okay. Okay. It's okay.
I asked my dad to tell me when he wanted me back. He said, "Tomorrow."
