Seizure

Saturday night I got a call from my dad at about 10pm.

My first thought was: oh shit.

I mean, 10 at night – it’s a little late for my dad to just call to say hello. Nighttime phone calls scare me.

He told me that my mom had had a seizure. I guess at about 7pm, she grabbed her chest and just looked like she was in pain. He asked her if she was hurting, and she said yes, and she kept grabbing her head, and her chest, and just looking horrible.

He called the nurse over, and told her something was wrong with my mom. The nurse agreed. (She’s been with my mom for a few nights over the last week, so she knows what normal looks like. This was not normal.) The nurse called the charge nurse, and the doctor. The charge nurse came, and the doctor called – neither were convinced that something was wrong. Even as my mom is sitting, in pain, unable to do anything about it. They didn’t believe it. Maybe because she couldn’t scream.

My dad thought she might be having another stroke. He said she looked almost the same as when the stroke happened. I can’t imagine how scary that must have been – reliving the worst moment of your life.

The doctor and the charge nurse finally started to think things weren’t normal, and agreed to run some tests, and to do a CT scan, to make sure there wasn’t any more brain bleeding. By the time she came back from the CT scan, she was asleep, but my dad woke her up to see if she was still in pain, and she said she felt better.

The CT scan didn’t show anything, so the doctor decided that it was probably a seizure, which only shows on a CT scan for a little bit of time, and then goes away. There was no more bleeding (thank goodness).

The next day she was feeling a whole lot better. Still tired, but that probably was more from a full week of therapy, rather than the seizure. They increased her anti-seizure medication, too, so hopefully that will keep her from having another one.

I just wish there were no more surprises. I really hoped that during these weeks of therapy, everything would at least be stable, without having to worry about the cancer or anything else for a little while. But I guess things aren’t as stable and predictable and controllable as I was hoping for.  

Communion

Yesterday I went to church, and we took communion. I took the bread, and as I was dipping it in the juice, the communion steward said, “Katye, this is Jesus blood, shed for you.” It was said so tenderly and with such love that I realized that it really was – Jesus’ blood, shed for me.

For me. Not just for us as a church, as a people of God. But for me.

And Jesus loves me. He loves me. I am his beloved. His body and his blood, they are the best reminder of his sacrifice of love for me.

I guess I really, really needed to hear that, to know that again. It’s not that I didn’t know that in my head, or that I ever really doubted it, but I think somewhere in my soul I wondered – with all this happening, all this crappiness, am I really loved? Or has he abandoned me?

But yesterday, through communion, I knew again: I am loved.

And every week, through communion, I can know again: I am loved. 

Nighttime

Why is it that everything hits me at night?

Last night, I had a really hard time falling asleep. I kept reliving everything in my head: waking up in the middle of the night, seeing that my dad had called me at a crazy hour, calling him back, hearing him tell me my mom had had a stroke.

And then, the moment that really sticks, the one that really kept me awake: waking up my roommate in the wee hours of the morning, telling her my mom had a stroke, breaking down, crying in her arms. I think that’s when I finally processed the phone call, when it all became real.

So as I fall asleep, all I can do is picture that moment, over and over again. It makes it hard to sleep in my room, since I can see where I was standing when it happened.

I don’t know why it only hits me at night. Maybe that’s just the time when my mind finally slows down, or maybe its when I can hide from other people the best. Maybe I need to process and deal with that moment, or maybe my mind is just being mean to me. A part of me thinks going through it again might be helpful, trying to see where Jesus is in it, but another part of me never wants to have to feel that way again.

And a part of me just wants someone to put their arms around me and tell me everything’s going to be okay. 

The Laugh

Today I heard my mom laugh. Yes, that’s right folks, I HEARD her laugh. Once more for emphasis: I heard her laugh.

She doesn’t vocalize every time she laughs, but she’s starting to. Every so often, when she’s making one of her faces, or moving her mouth, she’ll make a sound. I think I may have even heard her say “ooh” after we said something ridiculous.

She also sat up in a wheelchair today, without needing any neck support. So that’s good.

And she convinced my dad to sneak her some water (she still can’t swallow consistently, so she’s not supposed to have water, or even ice chips).  My dad said she had been drinking sips of it pretty well until I got there. The few times she tried it while I was there, she started to cough, so no more water for her. We don’t want her to aspirate (get liquid in her lungs, and then possibly get pneumonia). Though I’m sure her throat is super dry, she’ll just have to wait until it’s safe. She’s a little resistant, but I think my dad convinced her.

And tonight, when I said goodnight, she kissed me on the cheek. 

Waves of Grief

I always thought the phrase “waves of grief” was just an artistic way to talk about mourning. It sounds good, it’s descriptive, it’s a little overused. But hey, why not? Cliché or not, it sounds pretty.

But today I learned why people use “waves of grief.” Because they’re real.

I was just sitting, looking out at the grass, and everything slowed down. And then, out of nowhere, this feeling of grief came like a wave –growing bigger and bigger, and then the crest with eyes welling up, and then the slow receding of the tide, of the intensity of the sadness, and then back to normal, back to looking out at the grass.

It felt like a wave. And you know what they say, if it looks like a wave, and walks like a wave, then it must be… a duck! No, a wave, silly.

So, waves of grief. Not just a figure of speech, not simply an artistic phrase. A true way to characterize mourning. 

Silence

Today is the first day since the stroke that I haven’t seen my mom. It’s a little weird, but not as weird as I thought it would be. It actually feels more normal – back to the way things were before.

I’m really glad I decided to stay in Oakland today – not because I don’t want to see my mom, but because I’m tired. And I really wanted to spend the evening with my roommates, just chilling at this adorable house with a backyard and two cats that my roommate is cat-sitting.

I called my dad, just to check in. He was sitting in the hospital room with my mom, so we chatted for a little bit, and then I said “alright, Dad, I’ll see you tomorrow, tell Mama that I love her,” and he said “why don’t you tell her yourself?”

So he put the phone up to her ear, and I told my mom I loved her, and that I would see her tomorrow. And then I waited, awkwardly, in the silence. I tried to say a few other things like “I hope you sleep well” and “I hope therapy went well today” but there wasn’t much I could do to not feel awkward. After awhile I said “Dad?” hoping he would hear and take the phone back.

He did. He said she was blowing kisses in the air to me.

It’s not as big a deal that my mom can’t talk when I’m there in the room with her, able to read her facial expressions, see her nods, and interpret her hand squeezes. But tonight the fact that she can’t speak became real. Tonight I realized what not living at home is going to mean if she can never speak. Tonight I realized how horrible silence can be. 

So, what happened to your mom, anyway?

Short answer: she had a stroke, caused by brain cancer. 

Long answer (watch out, it's really long):

On August 19, 2011, at 1:30 in the morning, my dad heard my mom screaming his name. He was awake, heading to the bathroom, but he says he would have heard her anyway. She screamed, and screamed, and said she was in pain everywhere.

So he called 911, and she started to lose control of her body. After a few minutes, she was slurring her words, and having a hard time swallowing. My dad turned her on her side, so she wouldn’t choke on her own saliva. By the time the EMT’s got there, she had lost consciousness.

As the EMT’s put my mom in an ambulance, my sister came home from her friend’s house. She saw them putting our mom in the back on a gurney. My dad was letting out the dog, from where he had barricaded her so she wouldn’t try to protect my mom, and get in the way of the EMT’s.

Somewhere in this craziness they intubated, putting her on a respirator.

When my mom got to the nearest hospital, with my dad and sister not far behind, they took a CT scan. They looked at the scan, saw the massive bleed in her brain, put her back in the ambulance, and sent her to Redwood City, where the best neurosurgery team is. By the time my dad and sister got the hospital, she was already in surgery.

She got into surgery at about 3:30 or 4:00 in the morning. She got out of surgery at about 8:00am. So four hours, four hours of them operating on her brain.

The surgeon came out to the ICU waiting room after she was in her room, and told us everything. And man, do I mean everything. He gave us details full of medical jargon and somewhat grotesque images. I mean, do you really want to picture a chunk of blood and tissue the size of one and a half fists pushing her brain to the right side of her scull, or think of them putting a piece of scull back onto her head, and then pulling the skin back over the scull, and stapling it all together? (Oops, now you have gross images in your head. Enjoy!)

The surgeon talked with us about her recovery – how we wouldn’t really know for about a week whether she would mentally be there, or whether she would just be a physical shell of herself, a vegetable. My dad said that she didn’t want just survive as a vegetable – if that happened, we were going to pull the plug. (Thank you Jesus, we knew in about a day that she was mentally still there.)

And the surgeon talked with us about why. Why she, a healthy and fit 56-year-old woman, with low blood pressure and absolutely no symptoms, had a stroke. And the only real reason he could give us was a tumor.

And so we waited. We waited for five days, Friday to Tuesday, to find out whether it was cancer or not. We saw her improving, we were excited and amazed with how quickly she was progressing, but we knew we were missing a part of the story, and we could only get so excited until we found out whether there was a tumor, and what kind it was.

And there was. There was a tumor. There is a tumor. And it isn’t benign. It’s cancer – a type of cancer categorized as a Glioblastoma. It’s a type of brain cancer that is really attracted to blood vessels (hence the stroke – the bursting of a blood vessel caused by the cancer) and it never goes away, not even with surgery, chemo and radiation. The average lifespan of someone with this type of cancer, and with chemo and radiation, is one year. Maybe a year and a half. And so my mom is now labeled as “terminal.”

My mom hasn’t decided if she wants the chemo and the radiation yet. She had cancer before, 15 years ago, and the treatment was horrible. She may not want to go through that again. And we’re not sure how much the treatment will affect her quality of life. But she has decided to do rehab, so she can be more mobile, take care of herself a little, and hopefully even speak, or at least be able to express herself more.

And so we wait. We wait, and see what my mom decides about treatment. We wait, and see if she can speak again. We wait, and know the tumors will come back. And so I say my long goodbye, waiting until she’s gone.