Emmanuel

Remember how I love Christmas music? Well more specifically, I love Christmas hymns and carols. No, Rudolph the Red Nosed Reindeer and Santa Claus is Coming to Town do not make me smile (unless they’re sung by my adorable four year old neighbor), but things like O Holy Night and O Come, O Come Emmanuel do.

O Come, O Come Emmanuel is my favorite Christmas hymn. It’s a beautiful song – it’s lyrics are amazing, it comes from a beautiful vespers* used the last seven days of advent, and the names of Jesus it describes are all in Isaiah, my favorite prophet in the Bible.

But last night, as I was reading the vesper for December 23rd (O Emmanuel, God with us), and sang the first verse of O Come, O Come Emmanuel to myself I was struck by something, something I knew about the hymn, but had forgotten:

O come, o come Emmanuel
And ransom captive Israel
Who mourns in lonely exile here
Until the Son of God appears

Rejoice! Rejoice! Emmanuel shall come to thee
O Israel

Israel was mourning in lonely exile. They were captives, they were in the middle of really crappy times. But they were waiting for the Son, and rejoicing that he was coming, that he had promised to come. They weren’t denying the fact that times were shitty (hence the mourning) but they realized that God was mourning with them, and that he still had promised that his son, God with Us, would come to them.

I’m mourning now. Maybe not in lonely exile, but I’m mourning. And yet Christmas reminds me that the Son of God appears, he has appeared, and that is something to rejoice in, or at least have hope in. Jesus is with me, he’s with my family, and that promise is renewed at Christmas.

*My favorite thing about the Antiphons? When you take the seven names of Jesus that make up the Antiphons, and line them up backwards and in Latin (the language the Antiphons were written in), the first letter of each name makes an acrostic that spells “ero cras,” which translates to “tomorrow, I will be there.” How cool is that!

Thrifting

A few days ago I walked into an Old Navy.

I haven’t set foot in an Old Navy for six months. Not because I’m boycotting Old Navy specifically, but because in July I decided to only buy thrifted clothing for a year. No new clothes for a year (except for things like underwear, or socks. I will never buy thrifted underwear, that’s just gross), and as little new other stuff as possible.

As I walked around the Old Navy, I realized that I could basically buy anything with very little effort – no searching racks and racks of unorganized jeans, old lady shirts, or 80’s dresses. But I could also buy anything with very little gratification – no discovering hidden gems amid the 80’s dresses, or getting excited about getting a designer pair of jeans for seven dollars.

After my six months of thrifting, shopping at big, regular stores is just too easy. It makes me wonder if shopping for clothes really should be that easy. I like the mystery, the wonder, the effort it takes to thrift. It’s an investment, but it keeps me from buying clothes too easily, which is a good discipline.

How does this connect to my mom? I thrifted her a Ralph Polo Jeans sweater for Christmas. BAM! Connection.

Radiation Update

Last Wednesday my mom finished radiation, and this first round of chemo. She’s so excited to be done with all of that – to not have to go in every day, have them put this weird mask on her face, and zap her head with the radiation thingy.

She’s still missing a lot of hair, and having a hard time speaking. It seems like her speaking has gotten worse in the past few days, and she’s also been feeling more tired. We hope that all of this will regulate when the swelling in her brain caused by the radiation goes down.

Little Things

It’s the little things that catch, that snag, that remind me how different things are now.

Like the fact that when she says “sure” it sounds like “sir.”

Or the fact that her hair isn’t flipped out on the sides anymore. If you know my mom, you know she always liked to look her best – hair, makeup, earrings, the whole deal. So not having her hair all fancy looking is weird.

Or that she can’t say “I love you,” she can only say “I love you too.” And that that is her response to me saying “goodnight,” or me saying “see you tomorrow,” or to anyone saying “goodbye.” She can’t form the words to give any other response. (Granted, it’s not a bad response to have – it’s nice to hear “I love you too” over and over again. But every time I hear it out of place, my reality snags again.)

But it’s also the little things that make me so glad that I can spend time with her.

Like her tenderness, especially as she’s falling asleep. The ways she says “I love you too” and “I’m so glad you’re here.”

Or her laughter. She laughs a lot, and every time it brightens up the room.

Or her sound effects. She makes sound effects when I help her get around – she learned it from my dad, because he says that life is better with sound effects.

It’s the little things.

Pops (or, as you may know him, my dad)

My dad is amazing.

I mean, he’s always been a great dad – always told me I was beautiful, and that he loved me. He always protected me (just ask any of my guy friends in high school who received the super strong I-could-crush-your-skull-with-one-hand handshake) and cared for me like a dad should. But with all of this with my mom, I’m seeing more and more just how great he is.

Like how tender he is with her. How he washes and blow-dries her hair in a certain way every morning so it covers the bald patches. How he puts her in bed every night, and organizes her pillows for her. How he sat in the hospital for hours at a time, just holding her hand and whispering sweet nothings in her ear (granted, I always make a gaggy face when this happens, because it’s my sworn duty as a daughter, but I secretly love to see how much he loves her).

Or how he goes to every radiation appointment with her (she kinda makes him, but even if she didn’t make him, he wouldn’t miss it), how he does her therapy exercises with her every day, how he jumps up to take her to the bathroom, or get her a cup of water, or do anything she asks, no matter what he’s doing when she asks. He even used to basically carry her from chair to wheelchair, until the therapist made him stop, because my mom wouldn’t get stronger if he kept it up.

Or how he bends down and helps her get on her shoes (which certainly isn’t good for his back), or how he stands up and walks much more than he used to (which really increases the pain in his leg and foot), or how stays up late so he can work on his sermon for Sundays (which means he gets even less sleep). Why all the snarky parenthetical statements? My dad has had two herniated discs in his back, numerous surgeries and as a result lost feeling and movement in one leg, and now has chronic pain, which is mostly caused by Stage 3 Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome. He can’t walk very much, and instead uses a scooter. And he hasn’t slept through the night in years.

Taking care of my mom is really physically hard for him. A few days ago we were just sitting and watching TV after a pretty standard day, and his pain on the pain scale was an 8 or a 9. His pain scale, he says, goes up to 12 instead of 10 (please tell me you thought of Spinal Tap when you read that). Which basically means he’s learned to live with an 8 or 9, since his ordinary, lowest pain level is probably a 4.

So he’s taking disability. He’s giving up a job he absolutely loves not because he really wants to, but because he physically can’t take care of my mom and pastor the church at the same time. It’s not that he’s retiring, or taking a leave to take care of my mom. It’s that he physically can’t do both. And though he loves the church, and has so much he still wants to do, my mom comes first. And he can’t take care of her if he is incapacitated with physical pain.

He cares so much for her. He always says he’d do anything for her. They’ve been married for over 30 years, and they really, truly love each other.

He and my mom made a pact not to make each other cry. I mean, with everything going on, they could probably be in tears all day, every day. Instead they make each other laugh.

And so they spend the days together, watching shows, laughing, and just being together. They won’t grow old together, but they still have more time. And my dad will use as much time as they have left to keep loving my mom.

Radiation is...

Radiation is a gift we weren’t sure we’d receive. My mom was barely healed enough to go to rehab, and there was no guarantee that she’d ever be well enough to get radiation. But she improved, and she was healthy enough. And so she gets 30 days of treatment. 30 days that could keep my mom healthier for longer. 30 days that could mean extra time with my mom.

But radiation is also a curse (or whatever that saying is. A curse, something shitty, a lump of coal in your stocking. Whatever the opposite of gift is.) It sucks. Losing chunks of hair at a time, being fatigued, struggling to speak again like she was two months ago. And the trek to the hospital every day, and the whole process of getting in and out of the house, and in and out of the car. Even that basic stuff takes so much longer now than it used to.

And yet radiation is not something to take for granted, both because of its awesomeness and its crappiness. It sucks, so we want it over sooner. But it will keep my mom alive longer, so we want to get as much of it as we can (you know, without overdoing it. Hence 30 days instead of more – there’s only so much your brain can take.)

Are there days we wish we didn’t have the appointment? Days it would be nicer to just stay at home watching The West Wing in the afternoon, instead of going to the doctors? Yes. But would we ever skip the appointment, and lose that chance for as much time together as a family as possible? Absolutely not. Not for anything.

Thankful

This year I’m thankful for…

Food. Glorious food. Especially bacon. Especially bacon wrapped around pork. I mean, how can you go wrong? Pig and pig? It’s just meant to be. But seriously, folks, I’m thankful for scrumptious food. And for the fact that my sister and I are actually pretty great cooks. Her pork was amazing, my piecrust and homemade French bread was divine. Oh, and the boxed Annie's mac and cheese I'm eating right now is super tasty. And you thought I had a refined palate...

Television and children’s books. The stories that keep me laughing, crying, and laughing again. The stories I can get lost in. Comfort shows, comfort books, the characters I know better than real people sometimes. That whole other world I can get lost in.

A car. It’s much nicer to drive than it is to bike from Oakland to San Jose. The freedom it gives me to visit my mom is truly a gift.

My roommates, both current and past. These women keep me sane, and get to see the good, the bad, and they ugly of my life. Without them I’d lose it – they really are my rocks.

My friends and community. I have the best support system I could ever dream of. And they’re hilarious – who else would appreciate the Muppets, or the new version of Footloose, or my need to be ridiculous, and get Frosty’s after a long meeting?

My family. And boy, do we decorate a house for Christmas! It’s always good when we’re together.

But mostly, I’m thankful for my mom. I’m thankful for the fact that she’s still with us this Thanksgiving. More than anything else, I’m thankful that I get to be with her, for as long as we have together.

Coolest Cake Ever (and it was tasty, too!)

We just finished our City Councilman Cake. Yes, that’s right folks, a City Councilman Cake.

No, not made out of City Councilman (eww) or in the shape of a City Councilman (also eww). But given to us by a San Jose City Councilman.

Apparently my dad is famous. Or popular. Or both?

Whichever he is, he warrants a cake from our City Councilman. Not just a cake, actually, a whole meal.

Yah, my dad’s a big deal.

Losing

My mom is losing hair. And losing words. And losing energy. Apparently radiation makes you a loser. (Bad dum, ching! In case you were wondering, that was the drum thing at the end of a punch line. That’s what it sounds like in my head.)

It’s really discouraging to see her losing so much. Especially the speech, which is (probably… hopefully…) a byproduct of losing energy. We can’t have the same level of conversations we had been having. And she gets even more frustrated, since just a few days ago she was able to communicate better. I just miss being able to talk, really talk, with my mom.

And the whole losing fistfuls of hair thing? Kinda gross. I’m just sayin’.

Implode

I told myself the reason I stopped writing blog entries as often was because nothing was new - everything I was thinking and feeling was a repeat of what I’d already thought and felt. I mean, it’s certainly not as dramatic as it was when this all first started.

But really, that’s a lie. I’m just hiding. Hiding from what I’m thinking and feeling.

And I’m just tired. Tired of thinking, tired of feeling, tired of running around each week to get everything done and still get out to San Jose. Tired of feeling transient, especially when I’m sleeping on an air mattress at least two nights out of the week.

Tired, tired, tired. Sometimes I just wish I could be numb. But I’ve been reading Harry Potter recently (Harry Potter and the Order of the Phoenix, book 5 of the series, and yes, I know I’m a nerd) and Dumbledore has some things to say about that. Namely:

“The fact that you can feel pain like this is your greatest strength,” and,

“Harry, suffering like this proves you are still a man! This pain is part of being human –“

(Though, just for integrity’s sake, Harry’s response is “THEN – I – DON’T – WANT – TO – BE – HUMAN!” Sometimes I feel like yelling the same thing.)

Whether I trust Dumbledore or not, I probably can’t keep running from my pain. Not for the long term, anyway.

But if I do sometimes run, please let me, okay? Otherwise I might implode.

Disability (and an update on insurance)

Remember how we were maybe going to have to switch insurance?

Long story short: We’re not going to have to switch insurance. Thank you Jesus.

We’ll be able to stay with Kaiser for a long, long time. It’s actually a better deal for the church conference, and a better deal for us, so it works out well all around.

Another long story short: my dad is going on Disability. He’s been thinking about it for a while, and now with needing to take care of my mom, his pain has increased, and he just doesn’t have enough hours in the day to care for my mom, care for himself, and pastor a church. He still hopes to be involved with the church a bit, but he just can’t do it full time.

So another prayer request: please pray that Kaiser actually accepts his Disability claim. He has the backing of his doctors, but the insurance side of things has to go through. Please pray for favor with the insurance company, and fairness in their dealings with us. Our family’s medical costs are ridiculous (with both my mom and my dad having LOTS of medication, surgeries and doctor’s care) so please pray that that doesn’t count against us.

So, how's your mom doing?

She’s doing well, all things considered. (And no, I don’t mean All Things Considered, the radio show I’ve listened a lot to on my drives between Oakland and San Jose recently.)

Let’s break it down:

Stroke Recovery:

• Her speech is getting better and better. She still slurs her words, and she still has a hard time finding the right words, but after awhile you get used to it, so she becomes easier to understand. It seems that I understand her better than most, so sometimes I act as her translator. She gets frustrated, though, when she can’t explain something she wants to (like the plot of a Gilmore Girls episode that my dad has missed. By the way, they finished the series, and are moving on to The West Wing next. Any other shows ideas for them?) 
• Her right leg is getting stronger and stronger. She still can’t feel it, but she can use it more. She’s able to use it to stand up on her own, so she now stands up as we transfer from chair to wheelchair, or wheelchair to bed. She can also use something called a hemi walker to walk around a bit, but not for very long, and she walks very slowly. 
• Her right arm has almost no motion. (Have I mentioned that we name her right arm Fred? You’ll hear a lot of “don’t forget Fred!” in our house, since she can’t feel it, or see it, with her right side peripheral vision gone.) She can roll her wrist, sometimes, but that’s about all Fred can do. 
• She’s in a little bit of pain. Sometimes she’ll wake up in the middle of the night just aching all over. She started some new medication that seems to help, so hopefully that sticks. Her leg and her hand are also a little swollen, but the doctors seem to think it’s normal-ish. 

Chemo & Radiation:

• She hasn’t been nauseous! That pretty much means she won’t be nauseous for the whole rest of the treatment time, so that’s great. 
• She isn’t fatigued yet. But she just finished her two weeks of treatment, and that’s about when the fatigue and hair loss start. So we have to wait and see if that kicks in or not. 
• She’ll be done with radiation treatments on December 14th. Or maybe the 15th. Either way, it’s just in time for Christmas. 

Overall, she’s in good spirits. She laughs a lot, talks with us a lot, and seems to be doing pretty well, considering everything. My sister’s dog still doesn’t like her (sad) but my mom has gotten used to that. And she’s always happy when I come home.

Autonomy

“Mourning the loss of one’s autonomy is one of the most agonizing tortures there is.”
            - Marie de Hennezel, Intimate Death

My friend leant me this book, Intimate Death. When he first handed it to me, I asked him, “Will I be able to handle this book, or will it just make me cry?” He said he’d thought about that, and he didn’t know. So I decided to give it a shot.

I started reading it tonight. I’ve read thirty pages. And it’s fantastic. (Seriously, book plug: read Intimate Death by Marie de Hennezel. And ignore the fact that I linked to Amazon, and instead buy it at a used or local bookstore, or my mom will make scary faces at you. And not just because she likes to make scary faces, but because she used to work at a local children’s bookstore, Hicklebee’s. Shameless plug for Hicklebee's. And now this is the longest parenthetical phrase I think I’ve ever used. I should have prefaces this with “sidebar,” or “watch out, Katye’s getting on her local and used bookstore soapbox again.” And… DONE!)

Truly, folks, this book is amazing. Marie de Hennezel worked as a psychologist in the first palliative care unit in Paris (read: a Hospice hospital). Her job was to be with people in their last days, months, years. The subtitle of the book is “How the Dying Teach Us How to Live,” and she shares what she’s learned simply by telling stories of her patients, who became her friends and teachers of life as she walked with them towards death.

This quote, this “Mourning the loss of one’s autonomy is one of the most agonizing tortures there is” struck me, in the midst of many other heavy, heartbreaking, and beautiful truths that Marie spoke. (Yes, I will call her Marie. I feel like we have a connection, she and I, and I like to be on a first name basis with my authors. And you think I’m being facetious... now, back to our scheduled programming.)

“Mourning the loss of one’s autonomy is one of the most agonizing tortures there is.”

This quote struck me because I can’t imagine what it’s like, to lose your autonomy.

I can’t imagine what it’s like for my mom to be dependent on other people all the time. To need someone’s help in cutting up her food, in going to the bathroom, in brushing her teeth, in expressing herself. She used to be so independent, and now she literally can’t survive without other people.

And not just to lose your autonomy in the daily things, the basic survival things. But in how long you’re going to live, how much time you have left. I know none of us really have autonomy in how long we’re going to live, but it feels like we do. I feel like I can do whatever I want with my life. I don’t feel like someone has decided my future for me.

But knowing you only have a short time to live – that must feel like all power has been taken from you.

And so “mourning the loss of one’s autonomy is one of the most agonizing tortures there is.” Or so it seems. I’ll have to ask my mom to know for sure.

Christmas Songs

I started listening to Christmas music. Yes, I know it’s only October*. Blame it on the West Wing Christmas episode where the Whiffenpoofs sing “O Holy Night.”

But I love Christmas music. Not the cheesy, “Rudolph the Red-Nosed Reindeer” or “Jingle Bell Rock” kind of Christmas music. But the old hymns, the “O Come, O Come Emmanuel”, and the “O Holy Night”, and the Sojourn album “Advent Songs.”

But listening to Christmas music makes me think of how different this Christmas is going to be. Christmas has always been a time of great tradition for our family – Christmas breakfast is always cinnamon rolls, we have a specific present-opening order, and we have our Christmas Eve church services where we see friends we haven’t seen in a year. But I don’t know what this Christmas is going to look like in comparison. Will we go to the Christmas Eve services? And Christmas is on a Sunday this year, so how will that work? (By the way, Christmas on a Sunday when your father is a pastor is always complicated….) And what will the day look like? I know I’m going to make cinnamon rolls, but will they taste as good as my mom’s?

Really it’s not about Christmas. Really it’s about how much has changed, and how hard that is. Christmas is just an easy yardstick to measure against.

*I do know it's now November, but I wrote this mid-October. I wanted to show my ridiculous love for Christmas songs, and stay as truthful as possible, even with less important details like how inappropriately early I really start listening to seasonal music

Chemo

My mom started chemo today. My mom started chemo today. My mom started chemo today.

I keep repeating these words over and over again in my head, because it’s the only way they’re going to feel real.

Chemo and radiation, actually. Not just chemo.

Six weeks. She should be done December 15. Just in time for Christmas.

And here I am, worried that my sore throat, which in all likelihood is just a little sore for no real reason and probably doesn’t indicate any contagious disease that could be passed to my mom in her weakened-immune-system state, is some ridiculous cold that would keep me from seeing her this weekend. Worried that my roommate who felt really crappy today might pass on whatever bug she has, which would keep me from seeing my mom this weekend. Worried that I’ll have a cold next weekend when my extended family comes to visit, or that I’ll be sniffly on Thanksgiving, or that I’ll have a fever on Christmas.

That is, I’m worried about these things when I actually remember that my mom started chemo today. Chemo and radiation. The rest of the time it just seems unreal.

Forgetting

On Saturday I went wine tasting in Sonoma for my roommate’s birthday. It was a great day – beautiful weather, the start of fall colors, good people, tasty wine, and a bountiful picnic.

But while I was there I forgot that anything was wrong with my mom.

I didn’t totally forget. I mean, we drove past the hospital she stayed in for rehab on the way up. I talked about helping her paint her nails when my friend gave me a manicure kit as a birthday gift. But the whole day I really didn’t talk about her, no one really asked about her, and I tried to just get lost in the moment – in the tasting, the views, and the company.

And it was great. It was a great day. And yet something just felt… off.

When I got home, and settled down into some introverted time, it all hit me again, almost like it was new. Images of my mom flashed in my mind – my mom lying in the hospital bed that my dad put in their room at home; my mom sitting in her wheelchair as she goes from the living room to the bathroom; my mom in yoga pants and tshirts (a very weird image, since she was always so stylish). And then remembering her voice – hearing her slur words, hearing her struggle for the right vocabulary, seeing her crying when she can’t fully express herself.

And because I had forgotten, or avoided, all of this during the day, it came back all the stronger. It was overwhelming, and almost as shocking as if it had just happened. And that off feeling I had felt all day? I realized that was me knowing what I was doing, knowing that I was trying to hide from reality, and knowing that it was all going to come back sooner or later.

How do I find balance? How do I find balance between the part of me that wants to live life as it used to be and the part of me that wants to be ever-present in this new reality for my family? How do I keep myself from forgetting, while keeping myself from being overwhelmed with grief?

All I know is that I don’t want to forget again, because the remembering hurt too much.

Busy

This week’s weekly visit to my parent’s house was not very fulfilling. Not because of any specific event, not as a result of any drama. I was just busy.

There was work, and then a quick lunch, and then a meeting, and stopping at the used book store, and then coming home and fighting to get the new router to work so my parent’s internet jives with my computer. Now that I write it down it doesn’t seem like I did that much, really.

But what I didn’t get to do today was just spend time with my mom. And that’s why it felt like a busy, unfulfilling day.

All I really want to do when I go home is spend time with her. I don’t want to run errands, I don’t want to do dishes, I don’t want to work, or really do anything, other than be with her. So everything else, even if it’s actually really good (work was good, my meeting was good, going to the used book store was good, fighting for internet was not so good), turns into something that just feels busy.

So how do I do what needs to be done, and still be present with my mom? (Seriously, I’m asking, because I have no idea.)

Scrapbook

My mom used to be craftsy. No, not crafty, craftsy. She liked to counter cross-stitch, and scrapbook (yes, all the truly craftsy people use “scrapbook” as a verb).

My friend suggested scrapbooking as an activity that my mom and I could share, now, even with her limitations. I’d do all the cutting, of course, but my mom could pick the colors, and the pictures, and tell me where to put things on the page, and maybe even use the glue. I suggested it to my mom today, and she thought it was a great idea. It’s a perfect combo of therapy and mother-daughter bonding.

After I suggested it, my mom started telling me about this scrapbook she had been making me, before the stroke. She told me that it was almost done, there were just a few things she needed to do, a few pictures and words she needed to add.

That scrapbook was out on the dining room table when I first got to my parents house, after my mom was settled in the ICU on the day of the stroke. It took me a few days to look at it, and realize it was for me. (Like I said, she was crafsty, and always making something or another. I didn’t think anything of having scrapbooking stuff out.)

When I finally sat down and flipped through the pages, and discovered she had put together a whole scrapbook, all about me, with pictures of me at birthday parties and graduations, on family trips and at school events, and all right before she had the stroke, I lost it. I flipped through the pages over and over again, taking in the pictures and memorizing her handwriting, with tears streaming down my face. Of all the amazing gifts she could have given me, this is the best.

I’m glad we still can finish it together. And maybe, if you're lucky, I'll show it to you sometime.

Broken

My mom told me that the other day she was sitting, watching Gilmore Girls, and having a jolly good time (okay, so she didn’t say “jolly good time.” I’m paraphrasing), just watching and laughing, really enjoying herself. And then she looked down – she saw her arm, and her leg, and she remembered she was broken.

That was the word she used: broken.

She said that it feels like everything is different. Almost like she lived one life before the stroke, and is living a different life now.

She said it was nice to forget, for awhile, that everything was different. It was nice to feel, even for a second, that nothing had changed. It was nice to forget, for those few moments, that she was broken.

Half of the time

Half of the time my mom calls me by my name, and half of the time she doesn’t. Most of the time, when she calls me by a different name, she calls me by my sister’s name. And sometime she calls my sister by my name. I always know what she means, but it doesn’t make it less hard.

It’s a short-term memory thing. And the fact that my name is kinda hard to say – hard vowels and hard consonants and all that. But mostly it’s the short-term memory thing. She can’t remember much in the short term; you ask her to remember three words, and she can barely remember them long enough to repeat them. Five minutes later they’re totally gone.

I guess I should be glad that she can say my name at all – and I am. But it would be even nicer if she could call me by my name more than half the time.

50/50

I just watched the movie 50/50. And it was amazing. The perfect mix of hilarity and poignancy. Basically, my friend and I went back and forth between bawling and laughing hysterically.

I feel like the gamut of emotions it provoked are pretty much how I feel on a regular basis. Basically, this movie felt like my life, minus the whole using cancer to get a date thing. (Don’t worry, I didn’t give away any of the plot, that part is all over the previews).

Anyway, a perfect movie for where I am right now. Seriously, I’m still laughing. And I really needed that.

Scared

Today I drove my parents to my mom’s second radiology appointment – the CT scan & mask making appointment.

As we were sitting in the waiting room, my mom looked at us and said, with tears running down her face, “I don’t want to do this. I’m scared.” She sounded so helpless.

So there we sat, in the waiting room, all of us with tears running down our faces. We must have looked so ridiculous, my dad in his scooter, with his cane and his eyepatch covering the eye he just had surgery on, my mom in her wheelchair, in workout clothes, and with a patch of hair that’s shorter and greyer than the rest, from where they shaved her head for her surgery. And all of us crying, and then holding hands, praying together.

It’s really hard to hear your mom say, through tears, “I’m scared.” It’s even harder when she speaks with her slurred words, and looks as innocent and as honest as a little child. I’m glad she told us, and I’m glad I got to be there with her. But it doesn’t make it any easier.

She decided to still go through with the CT scan and the mask, even though we assured her that if she didn’t want to, she didn’t have to. She seemed in better spirits for the rest of the day, after it was over.

But I don’t know if I’ll ever be able to forget that child-like-ness, or that fear, or those tears. I wish I could protect from the pain, as much as she protected me from pain when I was a kid.

Maybe this will just be our weird, somewhat morbid version of Freak Friday.

Please Pray: Health Insurance

So my dad is a pastor in the United Methodist Church (UMC), and he has been for the last 30 years. The UMC conference (that is, area that our church is in) has a health insurance plan that isn’t Kaiser, but it’s more expensive than Kaiser. So for the last 15 years or so, we’ve had Kaiser insurance instead, which our church pays for.

But we might have to change insurance, because of the conference policy, and how all the rules and politics work. We might have to switch off of Kaiser insurance, to the conference policy, in the middle of all of this.

That is crazy. This is crazy. Thinking of having to find new doctors, new specialists, new people who we’d have to tell our story to over and over again, in the midst of my mom’s cancer & stroke recovery, in the midst of my dad’s disability and chronic pain. Having to give up my dad’s amazing pain specialist who understands reflex sympathetic dystrophy (something that few doctors know anything about). Having to give up my mom’s brain cancer specialist, who’s one of the best in the field right now. Having to switch in the midst of all my mom’s medication, and chemo, and all my dad’s pain medication. As if we don’t have enough to deal with.

My dad is going to call people in the conference (the insurance guy, my dad’s supervisor, and other people who can advocate for us) and try to get an exception for our family, so we don’t have to switch insurance, or pay for the Kaiser insurance ourselves. Please, please, please pray that the insurance guy, and everyone else, finds favor for my family, and makes an exception. Please pray that our conference acts as a church, a family, instead of just a business. And please pray that it happens fast, since we have to decide what to do by November 11. Please pray that we get to keep our insurance, without having to pay for it ourselves.

My Dad's Eye Surgery

Went well. (Sorry, this post is about a week late. I forgot to post it earlier.) His eye is doing what it should be doing at this point, which is good. He also doesn’t have to keep his head down anymore (he kept it down all last week), which is nice, because it hurt his back a lot, and it’s hard to do when trying to take care of my mom. He still can’t drive, but lots of people from the church are able to drive my parents around, so it’s alright for now. All in all, a successful surgery, and recovery is going as it should be. Let’s hope he never has to have this surgery again, and that his sight comes back to normal quickly.

Doctor's Appointment, Part 2

I talked to my parents today about the doctor’s appointment yesterday, the one with the radiologist. No, nothing was wrong (my head just likes to think of the worst possible scenarios). Here’s what’s going to be happening over the next few weeks:

There are a series of four appointments before she starts radiation, in the span of about three weeks. Her first appointment, the one that happened yesterday, was the intro appointment, the one that gives all the information, and collects all the information they need from us.

The second appointment is a CT scan, to make a 3D map of the brain. This will tell them where to irradiate – they’ll only be applying radiation to the portion of her brain, where the tumor was, and in decreasing amounts around the tumor. They’ll completely avoid areas of the brain that deal with hearing and vision, and other important things.

In the second appointment, they’ll also make a mold of my mom’s face. This mold will be what holds her head in place during the radiation treatments. They’ll basically place this thing over her face during each radiation, and bolt it to the table that she’ll lie on, so she doesn’t move her head, and so they don’t irradiate the wrong part of the brain.

The third appointment they’ll do an X-ray, with the mold and everything, to make sure that things are where they should be. If all goes well, and if there is enough time, she might be able to start her first radiation treatment at this appointment. But it all depends on time, and on whether she’s started her chemotherapy – she has to start the chemotherapy (in pill form, taken the night before) because it helps the radiation work better.

The fourth appointment is the radiation treatment, if it doesn’t happen at the third appointment. And then we’re off and running with 6 weeks of radiation (Mondays through Fridays), with chemo every day during those 6 weeks.

Doctor's Appointment

I called my dad today, to let him know that I wasn’t going to be going to my parent’s house until tomorrow, instead of tonight, and he said “okay, we can talk about today’s appointment with the radiologist tomorrow, then.”

I forgot about the appointment with the radiologist. So a part of me feels like a horrible daughter for forgetting something so important. I should have remembered, I should have thought about it, prayed about it, written a blog entry to say that it was coming. I should have done something. (Though, don’t worry, the other part of me realizes that I’m not expected to be thinking about my mom and all her appointments every hour of every day, and that it’s okay to be caught up in making pizza, and work, and the other things going on in my life.)

And then he made a point to say we’d talk about it tomorrow. Which makes me nervous. Did something happen? Will she not be able to get radiation? If she does get radiation, will she start soon? Or will she not start for awhile? Does the radiation doctor think it won’t work? Is she not allowed to get more radiation because she had radiation for her breast cancer 15 years ago? AHHHHHHHH!!!!!!!

Stop it, head. Stop guilting me, stop spinning out of control with horrible scenarios. Let me be patient, let me be calm, let me be kind to myself.

Dreams

I dreamed about my mom last night. Nothing spectacular happened, she didn’t say anything profound to me, and there wasn’t anything significant going on. But we were in our old house, and she was walking around, between the kitchen, the dining room, and upstairs, just organizing things, doing stuff around the house.

And it felt so real. It looked exactly like it used to. She looked exactly like she used to. Everything was as it used to be.

It’s not fair. (Okay, I normally don’t say things aren’t fair, because what does fair even mean? But that was my first reaction.) I don’t want to think of my mom like she used to be. It’s too much of a stark contrast to how she is now.

I know someday I’ll need to remember my mom as she was, before all this. Someday I’ll have to hold all my memories of my mom together, without comparing one to the other. But right now I can’t. Right now all I can do is see my mom as she is now. Otherwise it hurts too much.

What do you want?

I met with my spiritual director yesterday at my prayer retreat. Not only is my spiritual director awesome in general, but she has a similar story to mine – her father had a cancer caused “stroke”, and died about two months later.

So she gets it. She gets what it’s like to feel like this, to feel like I might not make it through, to feel like it’s a miracle that I even get out of bed in the morning, to feel helpless and perpetually on edge, to feel unable to make even the simplest of decisions. She knows, and she is able to sit with me in it all, and that is beautiful.

During our time together yesterday, she asked me a simple question: “What do you want?” Now, I’ve been really bad at making decisions, but I’ve actually been pretty good about knowing what I need (chocolate, to just read Harry Potter for hours on end, to watch Gilmore Girls with my mom, etc). So when my spiritual director asked me “What do you want?” I had my answer: I want to be with my mom.

I want to be with my mom. As often as I can, for as long as I can. I want to be with my mom. To be in the same room as her, to laugh with her, and cry with her, and just be silly with her. I want to take care of her – to take her to the bathroom, to make her meals, to get my sister’s dog to love her again.

I want to be with my mom. More than anything else, that’s what I want. I don’t really want anything else.

Gentle

I’m at a prayer retreat with my Servant Partners internship this weekend, and we did a Lectio Divina on Matthew 11:28 – 30:

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden is light”

The word that stuck out to me was the word “gentle.” And after sitting with and asking Jesus about it, I know why: because all this stuff with my mom is anything but gentle.

In fact, all that has happened so far has been really, really violent. The stroke itself was violent, the news of the cancer was violent, and on an on and on. Nothing has come up slowly, or quietly, or easily. It has all come quickly, screaming at us, attacking us with its ugliness.

My soul feels mutilated. My soul feels like its been bruised, and stabbed, and broken. My soul has suffered a lot of trauma.

And so I need the gentleness of Jesus. I need his gentle presence, counteracting and overcoming the mutilation, the trauma, the violence. And I need to be gentle to myself, and find people who will be gentle with me.

Gilmore Girls Addendum

Remember how I said I didn’t think I could watch Gilmore Girls anytime soon?

Well, I found a solution: watch it with my mom.

It works really well – she loves it, she’s got a lot of time on her hands, and it’s a beautiful thing that we can share. My dad even likes it!

I just hope we can make it through all seven seasons together.

"I'm glad I'll have more time with you"

When my mom first said this to me today, after we got home from the oncologist, I thought she meant “I’m glad I got to spend more time with you today.” But she didn’t.

She meant: I’ve chosen to do the treatment (radiation and the chemo) and I’m glad I get to be with you a little longer, before I die.

That’s the first time she and I have really talked about the cancer. We talk all the time about her progress in recovering from the stroke – that’s the obvious, easy stuff to talk about. And I’ve talked with my dad a lot about the cancer, and he’s talked with my mom a lot about the cancer. But I hadn’t talked to her at all about the cancer.

And I know she was trying to protect me by not talking about it – still trying to be my mom, still trying to be strong for my sister and I. (I wrote a post about this earlier.) And I know I was trying to still be her baby daughter, still wanting her to take care of me and coddle me like she used to, protecting me from all the worlds ills, and making everything okay. 

But today, when me, my sister, my dad and my mom were all in the room when the oncologist said that if she did treatment, her median life expectancy was a year, but if she didn’t do treatment, she would probably only live two or three months, that was when she and I realized we couldn’t pretend, couldn’t avoid it anymore.

She chose to do treatment because she wants more time with us. Because if she didn’t, she could be dead by Christmas, and that’s just not enough time.

So instead she will do treatment, radiation & chemo every day for 6 weeks, and then chemo five days a week for the next year. And maybe with treatment she’ll live til next October, or maybe the October after that or maybe… we don’t know. But however long it is, it’s more time.

If the radiation and the chemo make her too sick, though, she’s going to stop. They’re not supposed to be too bad. (“In 99% of cases, so and so was skipping and jumping* with extra energy from the chemo – its very well tolerated” *skipping and jumping is an exaggeration. Do not try this at home.) But in case they are, she needs to be free to choose a good quality of life for her last days, even if she has fewer days left.

But regardless of the chemo, and the radiation, and her quality of life now (I mean, she can’t pee without help. She can’t dress herself without help.), and all the extra craziness of blood clots and seizures, and even my dad’s eye surgery, she still wants more time. She wants more time with us. She wants more time with me. She said it very clearly to me: “I’m glad I’ll have more time with you.”

And I’m glad that I’ll have more time with her, too.

Surgery

But not for my mom. For my dad. And not on his back. On his left eye.

Surgery number two, actually. Apparently his retina is lifting from where it should be, and it has to be lazered, and injected with some air bubble thing to hold the retina down in place as it heals. He has to keep his head down all day for one day, and then on and off every few hours for a week. He can’t look at a computer screen or read for two weeks, and he can’t drive until the bubble eventually dissipates (which took three weeks last time).

This wouldn’t be such a big deal (he’s had it before, it’s a pretty easy surgery to recover from and I’ve already freaked out about this once the first time it happened, so I don’t have to again, right?) except the whole my mom can’t walk, my mom can’t drive, my mom can’t cook, and she can only kinda talk. You know, the usual. And as if he wasn’t in enough pain (exacerbated by standing up a lot to help my mom with things), the whole putting-your-head-down-and-thus-not-putting-your-leg-up thing certainly doesn’t help his back feel any better.

His surgery is happening on Thursday morning. Let’s hope this one sticks, and fixes everything that the last one missed (and anything that the next one might catch). They almost did it today when he went in to get his eye checked. But now he has time to find rides – for him to the doctor’s for the surgery, for him and mom for different doctors appointments throughout the next few weeks. And of course I’ll be on duty if they need anything, even though it takes me 45 minutes to get there.

But yah, so it would be nice if all this stopped. The hospitals, the surgeries. I’d really like this to stop, if that’s okay. I don’t know how much more we can take right now.

Standing!

My mom stood today for the first time since the stroke. She stood for about two minutes, which is amazing.

She can also move her toes and her ankle on her right foot, and can sometimes move her right wrist. Go mom go!

Also, this picture came from my dad. He texted it to me. Isn't he fancy?

Sunflowers

Even though it's now officially fall, and is finally starting to feel like fall, I have one thing to say:

I love sunflowers. The bring sunshine to any room, and make me smile. So here's to sunshine all year round.

Choices

This weekend, I chose to stay in Oakland and have fun instead of going to visit my mom for the weekend. Not that hanging out with my mom isn’t fun – it is. But it’s a different type of fun. This weekend I chose to hang out with friends, and drink good beer, and just do fun, Oakland-y things.

It was a hard decision. And I felt very torn this whole weekend – a part of me wanting to be with my mom, and the other (and overriding part of me) really glad to be staying in Oakland. It was a good decision, and a super fun one, but still hard. It’s hard to choose to care for myself and choose my own enjoyment over caring for my mom.

It was a really fun weekend. (Have you gotten it by now that it was a really fun weekend? Can I say fun a few more times in this post?). On Friday I chilled with friends. On Saturday I went with a friend to Oaktoberfest, and tried tasty homebrews and local beers, watched some street dancers, listened to some Zydeco music, and ate some brats. And people watched – I saw so many different faces of Oakland all in one place. And then Reuben sandwiches and pumpkin pie back at home with roomies and friends.

I’m glad I decided to stay in Oakland. I really had a super fun weekend. (Thanks friends who made it so fun!) I think I needed the break, and I needed the chance to just chill with friends. And I still got to hang out with my mom today for a few hours.

Baby Monitors and Bathrooms

Since my mom is home now, things look a little different than when she was in the hospital. Gone are the days where she presses a button and a nurse comes to her bedside to help her. Instead we use a baby monitor. Gone are the days where the nurse helps her go to the bathroom. Instead I take off her pants and underwear and sit her on the toilet.

And it just feels so weird. She’s not a baby – she’s 56 years old – and yet here we are with a baby monitor. She’s not a child, and yet here we are helping her in the bathroom as if she was being potty trained.

My brain can’t process it, these conflicting age indicators. I can’t make sense of it. I’m stuck in this limbo of “this shouldn’t be happening” and “this is the way it is, so deal with it.” I’ll do anything for her, but it still just feels… weird. 

My Birthday

Next Wednesday I’m turning 25. And it’s going to be a really weird birthday.

Besides the fact that it might be my last birthday with my mom still alive, and the fact that its time for my quarter life crisis, I have to go to an appointment with my mom and my whole family to see the oncologist about her cancer.

A part of me doesn’t mind – I mean, it’s the only day the doctor could do it, it’s a really important appointment, and I would do anything for my mom. But a part of me wants to pretend that I’m three and throw a fit because something so shitty is happening on my special day.

Maybe I’ll just balance it out by having lots of fun surrounding my birthday? Any suggestions?

Back Home Again

My mom is now back home again. The blood-thinner treatment went well, and went quicker than they expected. The clots now seem to be gone, she’s out of pain, and there hasn’t been any extra bleeding in her brain.

She’s really, really glad to be home. Once we got home, she got all dramatic about how long she was in the hospital. “I was there FOR-EV-ER,” and so forth, even though she was only there for two nights. It was pretty entertaining. I bet she likes the hospital even less than I do. 

Blood Clots

My mom went into the ER yesterday. Her right leg (the one that can’t move much) was hurting, and the physical therapist that comes out to our house once a week decided that the pain might indicate a blood clot. So my mom went to the ER to have it checked.

After waiting for hours (as in nine hours), for some sort of scan, and then for the results, they decided that she did have blood clots in her leg. Which isn’t good. If they detach from where they are in her leg, they can make their way up to her heart, her lungs or her brain, and kill her, in a painful kind of way.  

So they had two options: surgically insert a filter into one of the large veins (or arteries, or whatever… I don’t know my anatomy) that goes into the heart, so that any clots that make their way up break apart; or they could pump her full of blood thinner to get rid of the clots immediately. With the filter, she’d still have pain in her leg, until the clots broke off and hit the filter (if they ever did). With the blood thinner, there was a concern that it would make her bleed more, which would be bad, since she already had the bleed in her brain, and because the cancer is very vascular.

They decided to do the blood thinner – her pain was pretty high (a 7 out of 10 on the pain chart. Yes, they really use this chart), and I guess there wasn’t any more of a risk with the blood thinner then there was inherently with the cancer. (Which is actually not reassuring – it just makes me more worried that another vessel is going to burst in her brain, and the slow death from cancer that we’ve been told will eventually come about will actually be a quick stroke-like thing again. I’d rather have slow and painless over quick and ugly.)

So now she’s in the hospital (her 4^th hospital since this started. We’re becoming real hospital connoisseurs) getting a strong Heparin drip, so getting blood thinner for 24 hours. She’s also getting some morphine to help with the pain in her leg. She should be back home again tomorrow night, if all goes well.

I visited her in the hospital today. I didn’t expect to hate going into the hospital as much as I did. I mean, aren’t I a hospital veteran now? Haven’t I seen it all? Aren’t I jaded and completely at ease? The answer to most of those questions is no. No, I’m not really a veteran, no I haven’t seen it all, and yes I am jaded, but I am not completely at ease. I am completely at un-ease. When I went into that hospital, I immediately felt more scared, more tense, and more on the verge of tears than I had been two seconds before when I was standing outside.  And seeing my mom in a hospital bed again, in the gleam of the ugly florescent lights? Fugeddaboutit (yes, I looked this up on Urban Dictionary to make sure I was spelling it right. I’m a nerd).

But the thing that’s even worse than the feeling of stepping foot in another hospital is realizing that things might end sooner than I expect. I mean, even though I know, as in logically know, that things could change in a second, that my mom could be dead in a second, I can’t get the rest of me to realize it. I can’t get the rest of me to stop planning for the next few months with my mom. I can’t get the rest of me to accept that something new and dramatic (as in bad dramatic) could happen each day. Maybe it’s a defense mechanism to keep me from making myself CRAZY with worry. Maybe I’m just in denial. Whatever it is, when something new (as in bad new) happens, its like I’m feeling the shock of the stroke all over again. I’m just never ready for any change (as in bad changes) in what has become the new normal of my life.

I was telling my therapist this today, and she said she thought of the image of me standing on the edge on a teeter-totter, trying to balance, and a big weight falling out of the sky and unbalancing everything. It felt like the most apt description ever. Every new thing (as in bad new) is a weight falling out of the sky, upsetting my very fragile balance that I’m trying desperately to keep. Maybe I need to learn gymnastics.  

A Good Month

Last Monday marked a month since my mom first had her stroke. I said to one of my friends that day “it’s a month today,” and she said “yes, but its been a good month.”

And it has. It has been a good month. It’s been an insane, unbelievable, life-altering month. But it has also been so good.

My mom went from possibly being a vegetable to being home, talking, able to move her right leg a bit, not needing a catheter, and eating real food. She went from understanding us only some of the time and sleeping most of the day to understanding us almost all the time and needing more to do during the day. And over this past month I’ve laughed more with my mom, shared more stories with my mom, and spent more time with my mom than I have in awhile.

And I’ve seen, maybe for the first time, how other people see my mom – how much they love her, how much she has made a quiet (and somewhat sassy!) impact on their lives, how she has loved people in her own way.

So yes, it’s been a good month. So far the hardest month of my life, but still good. 

No, I don't want to hear your "uplifting" stories

When people don’t know what to say about my mom’s cancer, they tell “uplifting” stories of how their daughter’s father’s best friend’s nephew was told he had such and such months to live, and then he lived ten years and is still going strong.

Though I understand how awkward this whole situation is to talk about, and though I know people are just trying to give us hope, those stories really aren’t helpful. More than anything, if I was to believe those stories, they would give me false hope. Yes, there is a possibility that my mom will live more than the year or so they expect her to. But if I hope for ten years instead of one, I’ll drive myself crazy, and fall even harder when she dies.

Instead, I’m happy to treat every day with her as sacred, in full knowledge that it may be my last day with her. And if she lives longer than we expect, then I’ll be thankful to have more sacred days with her. And when she dies, though my heart will break, and though my life will never be the same, and though I’ll be angry, and sad, and a thousand other emotions that words can’t express, I will know that my Jesus has her in his hands. And that is a hope that sustains, more than any uplifting story ever could. 

Home!

My mom is home! She came home on Wednesday. It’s a good thing, I promise – not because of any seizure, or because she wasn’t progressing, but just because her time at rehab was over. So it’s a natural home return.

It’s really nice for her to be home - nice that she’s not interrupted in the middle of the night by nurses taking her vital signs, nice that my dad doesn’t have to travel to see her, nice that she can just be in familiar surroundings, and not a hospital.

Though it’s also more work – there are no nurses to help her to the bathroom, to help her get dressed in the morning, to get her food ready. And it takes a lot of effort to do all those things, especially to get to the bathroom – a transfer from the chair to the wheelchair, wheel the wheelchair to the bathroom, a transfer from the wheelchair to the toilet, and back again. She said to me today, in a joking way, “it would be so much easier if I could do this on my own!” It definitely would.

The one really disappointing thing about being home: my sister’s dog doesn’t recognize her. Now, my mom, before all of this, took care of the dog a lot, when my sister was at work. My mom would pet her for hours, walk her, play with her, and the dog loved my mom. But now the dog just doesn’t realize it’s my mom, which is harder for her than she’ll admit: it’s an ever-constant reminder of how different she seems to other people (or dogs). I just hope the dog can learn to love her again, even if she isn’t the same. 

Therapy

Therapy rocks.

And no, I don’t mean physical, occupational, or speech therapy. I mean the counseling type of therapy. The go see a therapist once a week and talk about life kind of therapy.

I started going to therapy this past December, and it was one of the best decisions I ever made. I went initially to work through some of stuff I had never dealt with when it comes to my dad and his disability and chronic pain.

But I feel that with therapy, more stuff always comes up. So I also dealt with other losses that I’d never fully processed, and lies I had been believing about myself and about God. I slowly became (and I’m still becoming) who the Lord made me to be – I’ve started to find my identity.

Maybe I would have dealt with all my ish and become more me without therapy, but I kinda doubt it.

I know for sure that without therapy, I would be doing so much worse through all this stuff with my mom. One of my best friends said to me the other day “you’re handling this all much better than I expected you to,” and she was right. And the only reason, other than God’s grace, is therapy.

Sometimes I imagine how I would be handling all this with my mom if I hadn’t started going to therapy. I think I might either be (a) pretending it wasn’t happening, and living in denial (not a healthy response) or, (b) hiding in my room crying all the time (also not a healthy response). I know for sure that I wouldn’t feel comfortable enough to write this blog, or to ask my friends to help me pray, or to be in any way vulnerable with anyone else.

So, basically, therapy rocks.

And if you’re looking for a therapist in the East Bay, I know a really great one!

Gilmore Girls

Yes, you heard me right. Gilmore Girls. As in, the television show.

I love Gilmore Girls.

It’s on my all time best television show list, along with Scrubs and the West Wing. Like Scrubs and the West Wing, I can watch Gilmore Girls over and over and over again. It’s a comfort show that I will never grow tired of.

But right now, I don’t know if I’ll be able to watch it. I don’t know if I’ll be able to see Rory interact with her mom Lorelai.

Now, my mother is nothing like Lorelai, and my relationship with my mother is really nothing like Rory and Lorelai’s relationship. But it’s a mother and daughter thing, and I don’t know if I’ll be able to watch it without bawling. Even just the thought of watching it is too much.

I wonder if seeing all mother-daughter relationships is going to be this hard?

My Name

I’m on a work trip in Wisconsin this week, so I won’t be visiting the hospital to see my mom. Even though she really wants me to go off, and have fun this week, I can’t help myself – I need to call at least once a day, just to check in. Even though she doesn’t want me to worry, I think she likes it when I call.

I called my dad last night, and talked to him for awhile, and then had him pass the phone to my mom. We talked for a little bit – she gets clearer every day. This morning when I woke up I realized that last night on the phone, my mom said my name. For the first time since the stroke. My mom said my name.

My name is a little harder to say. Hard consonants, hard vowels. Even though its only two syllables, it takes a lot of effort to get your mouth around. So I wasn’t offended. (How could I be, when she was talking at all? Anything she said was amazing!)

But now my mom can call me by my name. And that is just beautiful.

The Phone

I talked to my mom on the phone today. The last time I did that, all I heard was silence. The last time I did that, she still couldn’t speak.

But today, she could! It was still a little weird – lots of yes or no questions, a few times where I couldn’t really understand what she was saying. She made some comment about pudding that she just couldn’t articulate, and that I couldn’t understand. But I could hear her on the other end, and I could talk with her, and that’s amazing.

And at the end, I distinctly heard her say “I love you, sweetie.” It may have sounded a little run together, and a little short on consonants, but it was beautiful just the same. 

I love you

My mom said, “I love you” today as I was leaving. She said, “I love you.” She said it, and I understood it. I didn’t know if I would ever hear her say that again. Thank you Jesus.

Being Strong

I’ve kinda been wondering why I’ve only really seen the happy side of my mom this whole time. All the time I spend with her she’s laughing, and in a good mood, and its all gravy. But I know she’s having these intense conversations with my dad about the cancer, and treatment, and all this stuff.  I know she cries, and gets overwhelmed, I just haven’t seen it yet.

But today my dad said something offhand, and it clarified things: my mom is being strong for my sister and I.

Even though my mom is lying in a bed all day, and even though I have to help her go to the bathroom, and even though I have to pick her up and move her from place to place, she’s still my mom. She will still always be my mom. She will still protect me, and want to keep me from getting hurt.

And so she will be strong for me and my sister. And I will let her do that, because I still want her to be my mom. 

An Epic Day

Today:

1. I learned how to transfer her from bed to wheelchair, wheelchair to car, basically anywhere to anywhere.
2. My mom can propel herself down the hallway in her wheelchair.
3. My mom moved her right foot during physical therapy.
4. My mom said more than a few words. She said phrases, lots of them.
5. My mom asked to go to the bathroom, and actually went to the bathroom, so far three times.
6. They switched her over to all pills instead of liquid, nasty tasting medicine.
7. The nurses took out the feeding tube!
8. I had my first conversation with my mom since this started.

How did this all happen in one day? I’m not really sure. But today was Family Training Day (Me, my sister and my dad, all being trained so we can take care of her when she gets home, even though we’ll also be hiring an in-home nurse). Maybe she was just trying to show off!  Maybe everything just clicked today. Whatever reason, I’ve been here since 8am this morning, walking with her through all her getting ready, her meals, her therapy sessions, and seeing improvements all day long.

So, how ‘bout I go through, and elaborate a bit, on all that happened?

1.) I learned how transfer her from one place to another. It entails her moving herself as much as she can, and me helping her as she pivots from one place to another. She does most of the work, I’m just there in case she loses her balance, and to guide her as she sits down. All transfers are basically the same, whether from the bed to the wheelchair, from the wheelchair to the car, or back to the bed. It’s even the same for getting on the shower bench she’ll be using.

2.) My mom can get along on her own in her wheelchair. I knew that she could, but I’d never seen it. She uses her left foot to steer herself, and her right hand to roll herself along. Sometimes she just likes to push herself along with her foot, but the physical therapist wants her to use her hand too. It’s not as fun as being pushed by my sister, who likes to make her swerve and goes really fast, but it works!

3.) My mom moved her right foot during physical therapy. Yes, that is the side she lost motion in. Apparently there’s some physical therapy technique where you work the strong side, and then the motion starts to spread to the weak side. And it worked! As they were working out her left leg, her right leg started moving. She was even able to press against a wall with her right foot, and move it up and down at the knee. She’s slowly getting back mobility.

4.) My mom spoke. A lot. “Thank you very much,” “I have to go to the bathroom,” and tons of other things. A lot of “yes,” “no,” and “okay,” too. The speech therapist asked her to use yes and no all the time, instead of just nodding or shaking her head. And she’s been doing it! Though sometimes it takes us asking her to speak so she remembers to vocalize. She rolls her eyes, but it’s worth it.

5.) My mom knew when she needed to go to the bathroom. She hasn’t been able to do that so far, which means she’s had to use diapers and short term catheters instead. Basically, she hasn’t had any control of her bowels up till now. But today, she said, in the middle of breakfast, “I have to go to the bathroom.” She has known that she had to go to the bathroom three times so far, and almost emptied her bladder each time. If she keeps this up, she won’t need any catheters, or suppositories, or anything, which will be great. It will keep her from the chance of infection each time the catheterize her, and will be so much easier when she comes home.

6.) They switched her over to pill forms of all her medication. Thank goodness! The last time she had to drink one of her meds, she almost threw up because of the taste. Since she’s able to swallow, she can do the pills. Thank you Nurse Francis. He was seriously the best nurse ever. He brought us extra juice, so me and my sister could have some. He was also a great teacher. And freaking hilarious.

7.) They took out the feeding tube! She’s been eating enough of her food, and drinking tons of water, so instead of having to put a new one in when hers got a little loose, they just took it out. She can now breathe out her nose, and my dad can kiss her more easily (ewwww, gross!).

8) I had my first conversation with my mom since this started! I mean we both talked to one another. She was able to articulate a question (with me asking a lot of clarifying questions until we got to the right thing) and we talked about stuff! It all started with her saying “men,” and then getting to the fact that she was talking about Francis, our awesome nurse, and finally figuring out that she was wondering about another training thing he had been talking about. It took awhile, and I made some ridiculous guesses about what she was saying, but it all worked out. 

And now, for a funny story: They have this “car” that they use to train people to get in and out of. It basically looks like the front seat of a dune buggy. After she got in and out of it a few times, she started motioning with her hand like she was driving, and making racing or rollercoaster-like noises. My sister, my dad, the physical therapist and I started throwing out guesses as to what she was talking about. We narrowed things down, tried to clarify, and basically settled on her question being “What do I do in the event of a zombie apocalypse?” (Okay, so we really just couldn’t figure it out. But the guessing process was super funny, and we were all laughing a lot.)

Later on, when we were back in her room, she started making the same motion again. So I went back through the possibilities. Yes, she was talking about being in a car. No, it wasn’t parked, but it wasn’t really driving either. And it was like a racecar, or a rollercoaster. A rollercoaster. A rollercoaster that looked like a dune buggy. Indiana Jones! She was talking about the car being like the Indiana Jones ride that we had just been gone on at the end of July in Disneyland! It was pretty hilarious when I finally realized what she was talking about, and it was great that she remembered our trip to Disneyland, and that we had gone on the Indiana Jones ride.

So yes, an epic day. Probably the best day here ever. 

Popular

My mom is super popular. She got SO MANY CARDS today. Probably about 30. I’m not kidding.

It’s pretty cool to see how many people my mom is important to. She’s a very introverted person, and she’s my mom, so I don’t think I ever really knew. But people really like her.

If you’ve sent her a card, or flowers, or a gift, thank you. She really loves to get them, and its beautiful to see how much she is loved. 

Decisions

I am really bad at making decisions.

I was never the biggest fan of making decisions – never wanting to offend, and honestly not caring too strongly about some things. But after everything that’s happened with my mom, I’ve gotten even worse.

Most of the time, they’re small decisions. I balk at choosing coffee shops, or deciding what to eat for lunch. Though of course those big looming decisions (what I’m going to do after my internship, what I want to do with my life) that I’m avoiding aren’t any easier to make either.

So friends, one of the best ways to care for me during this time is to allow me to not make decisions. Just decide for me. If I have a strong opinion about something, I’ll let you know. Otherwise, assume I just don’t have a preference.   

Eating Real Food

For the past two days, my mom has been eating real food. No, they still haven’t taken out the feeding tube. But they haven’t been using it. Instead she’s been eating her meals, by herself, breakfast, lunch and dinner. Yay!

Granted, it’s not the tastiest. Everything is a “soufflé.” Which means ground up and re-formed into a soft mass that she can easily chew. Turkey soufflé, chicken soufflé, who-knows-what-else-is-really-in-the-meat-dish soufflé.

And pureed fruit, and mashed potatoes or yams. And lots of juice, to make the meal bearable. And pudding! Though yesterday they forgot to give her her pudding, which is just a travesty. The pudding is the best part of the meal, and the only thing that makes it worth eating. (I ate her leftover pudding today. Seriously, pudding is one of the best food items in the hospital.)

They should be taking out the feeding tube soon, since she hasn’t been choking on any of the food. She can even drink water on her own (no, we’re not just sneaking it to her anymore).

I just hope they don’t forget the pudding again.

Missing my mom

On Friday I didn’t make the 45 minute drive to Vallejo to visit my mom – I worked a full day (first time in three weeks. My bosses are pretty much awesome), didn’t want to be stuck in traffic and have the 45 minute drive turn into 1.5 hours, and just needed a night off. It was a really fun night too – hanging out with friends, being ridiculous, the usual.

But while I was hanging out with my friends, I realized – I really missed my mom.

Now, I’m not someone who misses her parents very often. Even when I’m out of the country for the summer, I rarely get homesick. And after I left for college, I would talk to my parents about once a week, maybe less, and mostly about random questions I had, things like how to cook a certain dish, or where to get car insurance.

So missing my mom on Friday, when I had just seen her the day before, was a little weird for me.

I don’t know why I miss her so much more now. Maybe its because we only have so much time left together. Maybe its because she just seems so vulnerable, sitting in that hospital bed, unable to speak. Whatever the reason, its not an unwelcome emotion, to miss my mom, just unexpected.

"What was that all about?"

My mom forgot she had cancer.

Or at least she forgot that it was terminal. Some people came in today to talk about different after-rehab options, and specifically Hospice, and after they left, she basically asked my dad “what was that all about.” So he told her, everything, for the second time.

The first time he told her about the cancer, about a week and a half ago, she was just really quiet. This time she cried, and cried, and cried.

I don’t know if she completely forgot she had cancer. We talked to the doctor today, the one in charge of her rehab, and she said that every morning she talks to my mom about her brain tumor, and why they’re doing rehab, and all that stuff. Which is great – she said she does it because we shouldn’t have to be the ones to do it.

But maybe my mom just thought that she could beat this cancer, just like she did her breast cancer. Maybe she thought the tumor was just a benign tumor, that wasn’t really going to affect anything, but just caused a stroke. Or maybe she really did forget.

I just can’t imagine what its like to find out, after a week or so of working hard in rehab, that its not going to be enough to get life back to normal, or even closer to normal. I can’t imagine what its like to find out (again) that you’re not going to grow old with your husband, or see your daughters grow up, and then still work hard at getting better anyway.

I just really hope she remembers this time. She needs to know, and I don’t want my dad to have to go through telling her again. 

Seizure, Part 2

My mom had another seizure yesterday. Or at least we think it was a seizure. We’ll be more sure tomorrow, once we talk to the doctor about her EEG and MRI results. We’re really hoping it’s a seizure (what? Hoping for a seizure?) because if its not, it could be a lot of other things, all which are worse than a seizure. I can’t remember what they are exactly, but they wouldn’t be good.

She had the seizure at about 1:30pm yesterday afternoon. She was on this contraption my dad likes to call the Frankenstein machine – it makes her stand up, and they can wheel her around standing up on it, if they want. They use it to take her to the bathroom and stuff, and it somehow sits her down too, or something. I’ve never seen it, but it sounds a little weird. The nurses sometimes leave her on this contraption in the bathroom for about 10 minutes at a time.

Anyway, she was on the Frankenstein machine, in the bathroom, when the nurse found her, hanging on this contraption by her armpits. The nurse called for help, and my dad was in the room, and rushed to help. Now, if you remember, my dad can’t really walk, and he definitely shouldn’t be lifting things, so that probably didn’t work too well. They were finally able to get another nurse to help get her into a wheelchair, and then back into bed.

When she got into bed, she was non-responsive. So that was scary. Then, she started to look like she was swallowing over and over again, and my dad quickly turned her on her side, and then she vomited. (The number of times my dad’s random nurse-like knowledge that he gained from helping his mom quiz for her RN classes when he was in high school has come in handy is unbelievable.)

They cleaned her up, and took her down for an EEG (though I guess she vomited again either before or after the EEG). She was responsive again when they brought her back up to the room, but super tired.

The doctor says that the seizure was caused by the cancer. Not by the stroke, or the trauma of the bleeding, or even from having her in the Frankenstein machine. The seizure was caused by the cancer. Which means they may just keep coming. And it means that if they do keep coming, she won’t be able to stay in rehab.

We thought we had a little more time, before the cancer really took hold. I guess we don’t.

Cancer Sucks

Cancer sucks.

Cancer runs in my family. Breast cancer especially. My great-aunt, my grandma, my aunt, and my mom all had breast cancer. My aunt died of breast cancer that spread to her bones, a week before I was born. For me, cancer means getting mammograms and wondering who’s next.

But cancer hasn’t only hit my mom’s side of the family. On my dad’s side, my grandma died of colon cancer, and my grandpa died of lung cancer. Even my step-grandma (the lovely woman my grandpa married after my grandma’s death) has cancer – breast cancer.

And my apartment, well, we call ourselves the Library, but sometimes we wonder if we should call ourselves the Cancer Corner. We all have immediate family members who have cancer.

If cancer was a person, I’d punch it in the face. Or dropkick it. Since it’s a disease, all I can say is…

Cancer sucks.

Not a Child

The picture of my mom that keeps sticking in my head, the one that makes me curl up in a ball on the couch, crying my eyes out, is this:

My mom, sitting in her wheelchair, exhausted from a full day of therapy. She looks, with trust and determination, at the speech therapist, who is mouthing out “Row, Row, Row Your Boat.” My mom tries to do the same – her forehead scrunched with effort, though her face still looks simple. She gets out the vowels, vocalized the melody, and tries to correctly form her lips and tongue, but still misses all of the consonants.

She looks like a child, sounds like a child, as if she was first learning to speak, and trying to imitate her mother.

But she’s not a child – she’s 56 years old, and she used to be able to speak.

It shouldn’t be like this. I shouldn’t have to see my mom relearning how to speak, relearning how to sing “Row, Row, Row Your Boat.” I shouldn’t have to see my mom trying so hard to do something that used to be so easy.

She looked so innocent, so earnest. So much like a child, it scared me.

p.s.  I know this post might seem like it contradicts my previous excitement of her singing “Row, Row, Row Your Boat” (which, by the way, needs a way shorter name), but it really doesn’t, at least not in my head. A part of me is really excited that she can sing it, but the other part of me feels like this. Expect more contradictions in the future – I certainly feel like I’m full of them.

The Future

I really don’t know what my future is going to look like.

I mean, I didn’t really before, but now I really don’t. All of my plans, or ideas for plans, or inklings of ideas for plans, have gone out the window.

I thought that after the Servant Partners internship, I would stay in Oakland for a little while, but then soon after I would go work with Servant Partners in a slum community overseas, or move to an inner-city church plant in LA, or something.

But now I don’t even know what this last year of the internship will look like. I keep wondering: how much time will I spend in Oakland? How often with I go back to San Jose to help take care of my mom? How much care will she need when she gets done with rehab?

And: will she decide to do chemo and radiation? Or will she forgo treatment? Will she even be alive a year from now?

What I do know is that I want to be close until she dies. I don’t want to be in another country, or even in another part of the state, until I’ve gotten to spend as much time as I can with my mom.

I really felt Jesus asking me recently, before the stroke: “If all you plans fail – if you never go and work in ministry overseas, if you never get married, will I still be enough? Will my love for you still be enough?” And I’ve been able, with some effort, and some letting go of all my well-crafted plans for myself, to say yes. Yes, Jesus, you are enough. No, my faith and my walk with you do not depend on how well you fulfill the plans I’ve created for myself.

And I still say that now – yes, Jesus, you are enough. I just never expected to have my plans changed like this. 

How is your mom today?

She’s doing well today, thanks for asking.

When I got to the hospital, my dad was still at home, working on finances and things (my mom used to do all the bills and such, so my dad is wading through all her paperwork and trying to figure out her system). So I got to have a couple of hours with just me and my mom.

She actually wasn’t in the room when I got there – she was still at speech therapy. When she came back, the speech therapist told me some of her improvements for the day. Today she:

• ate the first real food she’s had since this started. She ate some banana, some bread, and some pudding. She said the pudding was especially good.
• swallowed small sips of water without coughing.
• learned how to say the vowels “a,” “o” and “e.”
• sang “Row, Row, Row Your Boat.” When I say sang, I mean kinda vocalized the vowels and the melody, and moved her mouth to imitate the speech therapist a little bit.

That is really, really good progress for a day’s work. It also means she might be off the feeding tube and on real food in the next few days, which I know she would absolutely love. Apparently feeding tubes are really uncomfortable. Who knew it wasn’t pleasant to have a tube through your nose and down the back of your throat?

After all of that (and all the physical and occupational therapy she also went through today) she was pretty tired, but I still got to spend a few hours telling her stories. It was fun to just talk with her, to hear her occasionally say words (she said “nice” and “yes” today, and I mean she actually said those words). She also tried to talk a lot more, and kept wanting to say things, but it mostly came out as random vowel sounds. It was great to hear her trying to speak, but also a little hard, for both of us, because I just couldn’t understand her.

I also snuck her some water, and some of my ice cream bar. I blame her – she’s very persuasive when it comes to getting us to break the rules for her. But with both the water and the ice cream, she was able to drink and eat and swallow everything without a problem, which was amazing. And funny – especially since we may have gotten some clandestine ice cream on her blanket… 

A Good Day

Today was a good day.

So good, in fact, that if you had asked me how I was doing, I would have said, “I’m doing well.” I think today is the first day I could honestly say that.

Why was it a good day? I slept in, had a nice, lazy morning with some friends, listened to good music on my drive, visited my mom, told her some stories, read a book, talked with my good friend on the drive back from the hospital, got caught in no traffic, hung out with more friends and watched a good movie.

There was nothing spectacular that happened, no ridiculous antics (well, not too many) and no epic adventures. Just simple, beautiful moments that made me smile.

I thought I would always have this pall over me, the reminder of the stroke, or of the cancer. Almost like a fog, graying out all the color in life.

But one thing my friend said to me, that she learned when her mom first got sick was, “you can’t let cancer dictate how your day is going.”

And that idea, that freedom to be however I want to be, cancer or not, stroke or not, has stuck with me, and allowed me to have a good day today. I am free to be me, Katye, beloved by God. And I’m free to be me, Katye, who loves impromptu breakfast hangouts, sitting around in PJ’s and drinking good coffee. Katye, who loves discovering new music and rocking out as she glides down the freeway. Katye, who can’t resist telling her mom ridiculous stories, and making her mom laugh. Katye, who loves to get lost in a good book. Katye, who has amazing friends who make her laugh, and have the same thoughts as she does. Katye, who is a sucker for a good, cheesy movie. Yes, the cancer is still there. Yes, the stroke still happened. But that doesn’t make the rest of me, the rest of my life, less real, or less wonderful.

And so, I say, I had a good day.  

Prayer Changes Things

My mom has this little notepad that all flowery and petite, and says across the top “Prayer Changes Things.” I used it to write down the messages that had been left on our home phone. I also may have used it to write down directions to somewhere. Whatever I used it for, the somewhat cheesy sentiment stayed in my head.

The second thing I did when I found out my mom had a stroke, after waking up my roommates and crying a bit, was ask them to pray. I certainly couldn’t pray for my mom right then – I was in too much shock. But I asked them to pray, and asked them to tell the rest of my internship team what was going on, so they could pray, too.

And then, on the car ride to the hospital (thanks roomie for driving me!) I called a lot of other close friends to tell them what had happened, and to ask them to pray too, (sorry for waking you all up super early in the morning) and to ask them to pass along what was going on to more people, so more people would be praying. And I kept sending out email updates, with more and more prayer requests.

Most of the time right now, I can barely pray. The only prayers I’ve really been able to handle have been “please” (in other words, please heal my mom), and “thank you Jesus, you are my rock.” I’ve tried “thank you Jesus, you are her healer,” but that prayer has almost felt mocking for the past week or so, so I stopped trying to fake it.

But even though I can barely pray, I know that prayer changes things. Even though my mom’s prognosis seems set and immovable, I know that prayer changes things. And so I have my friends pray for what I just can’t pray for right now, in the hope that things will change.

Thank you, friends, for praying. Please don’t stop.