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.  

The Puzzle

The other day, when my mom moved from the Redwood City hospital to the Vallejo hospital, I had to move my puzzle.

My sister and I, and a few of our friends, had started a puzzle to help pass the time. We would sit in my mom’s hospital room, or out in the waiting area, or even in the hallway, and work on the puzzle.

It’s a cheapo puzzle – less than five dollars at the Kmart across the street, put together on foam board, also from Kmart. But it’s a really pretty puzzle – different scenes from an old magazine, all these men and women of different eras. Lots of colors, lots of pieces (no, it was not just a 300 piece puzzle. I’m not that boring. I promise it was 1000 pieces).

Since I had to move my puzzle from one city to another, I carefully placed it in my backseat, and hoped my driving would keep it from falling apart. When I got to Vallejo, it was still pretty whole – only a few pieces had fallen of the board. So I thought, hey, it made it this far, I won’t have any problem moving it from my car to my mom’s new hospital room.

I carried the puzzle through the parking garage, around a few buildings, an even down some stairs. And when I’m about 25 feet from the hospital entrance, the wind blows and catches my puzzle. I try to hold on to the board, hoping to keep the puzzle intact, but the wind is too strong – about 200 pieces fly off my puzzle board and scatter all over the sidewalk, the driveway, and even in the planter boxes.

I put my puzzle board down (there are probably about 300 pieces still together on the board) and rush to grab the fallen pieces before the fly off into the wind. Not only did I not want to lose them, I didn’t want to just leave them there – that would be littering! As I start to pick up the pieces, I realize (1) I don’t have a bag to put them in, and my pocket space is lacking and (2) the wind has flipped up my puzzle board, dropping the rest of the pieces on the ground, and flinging more of my hours of hard work onto the concrete.

I call my dad – he’s upstairs, and he brings me down a bag, and helps me pick up the runaway pieces. I look ridiculous – stooping over to pick up little pieces of cardboard, as people walk or drive by. People must think I’m crazy.

And as I’m picking up the pieces, I think to myself “There goes 6 hours of my life that I’ll never get back,” and “Do I care enough to put the puzzle back together?” I know puzzles are supposed to be tests of persistence and patience, but this one is just asking too much.

And then I think – well, that’s a metaphor for my life right now. Persistence and patience, but maybe I'm being asked for a little too much of each. Or maybe I’m giving this puzzle way too much significance. 

Distracted

Some of my friends came over today, and it was great to see them (seriously friends, thanks for coming by. It really made my day). But the whole time I was hanging out with them I was looking at the clock, doing things on my computer, estimating the traffic I’d run into when I left for the hospital to visit my mom.  I wanted to spend time with them, I really did, but I couldn’t keep my mind there.

I was just so distracted. And that distraction really isn’t profound (I mean, how often are you thinking ahead to the next thing when you’re in the middle of something else?) but as I was driving I was wondering: why am I distracted, really?

Am I distracted because I really want to see my mom? Because I don’t want her to feel alone in the hospital room, especially since she can’t speak? Or was it just because I was super set on missing traffic?

Am I just worried that I’ll miss something - a new development, an important doctor’s visit, or something worse? Or is it just easier to be at the hospital, where my new reality seems the most real, instead of back at home, where things feel almost normal?

Maybe I’m afraid that if I’m not at the hospital with my mom I’ll be able to forget, pretend this never happened, and just keep living life like it was before, as if things had never changed.

So friends, I’m sorry I wasn’t more present when I was hanging out with you before. I really wanted to be, and I really did value you being there with me. I’ll try to work on living in this tension of life-as-it-was-before, and life-as-it-is-now. And maybe I’ll learn, slowly, how to be present in both worlds. 

Alert

One of the hardest things about sitting with my mom is not knowing when she really gets it or not.

Sometimes she’s alert, and she can respond to what we’re saying, with head nods, hand squeezes and mom looks (yes, she still has the mom look, even with a stroke). She’s even started sticking out her tongue, which is fun to incite.

But sometimes she looks alert, she seems to be tracking, and then we ask her a question, and she doesn’t respond. We ask again, no response. And again, and again. I bet she finds us pretty annoying.

And then we worry. Is she in pain? Is she tired? Is she thinking too much about the cancer? Is she going backwards in her improvement? Will she ever talk again?

I just wish I knew what she was thinking. I just wish I knew how much of what we say really gets through. I just wish I could have a real conversation with my mom.  

So, how's your mom today?

I never know how to answer this question. My sister's subtly evasive response is "she's recovering from her stroke well." Which is true, it just leaves out anything about the cancer. But I'm going to do the same. My subtly evasive response is:

• she's moving to an intensive rehab center today
• she's off the respirator & off the IV
• she's much more responsive - she "laughs" with us, she recognizes people, she can follow conversations if she's not too tired, she can answer yes or no questions
• she still can't speak, read, or write. She probably won't ever be able to read or write again

Considering she had a 6cm wide mass of blood and other things taken out of her brain just 10 days ago, she's recovering remarkably well. The surgeon was very impressed.

Feeding Tube

My mom took out her feeding tube yesterday. No, nurse Mark, she didn’t take it out on accident. No, nurse Sarah, she didn’t do it just because it was uncomfortable. No, nurse May, she won’t do it again just to be ornery. She did it because a part of her wants to die.

Can I blame her? Can I blame her for giving up, knowing that she’s probably going to die within a year anyway? Can I blame her for wanting to just die from lack of food, instead of waiting for the tumor to slowly put her to sleep?

I can’t blame her. But I really don’t want her to give up yet.

The selfish part of me, the part of me that wants my mom to keep fighting, is also the part of me that thinks that if she keeps fighting, she won’t die. Or at least, that if she keeps fighting, it will give us long enough, and I’ll be ready. But will I ever really be ready?

She decided to let them put her feeding tube back in. And I gave a huge sigh of relief. Good. I have longer with my mom.

But any day, she could decide she’s done. Any day, she could decide that it’s too hard to fight, especially when you know you’re going to lose eventually. Yes, she’s going to rehab, for at least 3 weeks. But any day she could decide it’s too hard, too much, and choose to come home and die. And after rehab she could do the chemo and the radiation, or she could decide it’s too much, and choose to come home and die.

And I’m not ready for that. I’m not ready for her to choose to come home and die.

Everyday I think of something new that will be different after she dies.

Sometimes they’re small things. I won’t get a discount at Hicklebee’s when I want to order books. I won’t have my own immediate check-the-publisher-to-see-if-a-specific-book-is-in-print person. My dad will have to do the bills, the laundry, the dishes, the grocery shopping, the cooking by himself (which is hard enough with his back). My sister will have to walk Ruca on her own. Christine and Ben won’t get the needlepoint she was making for baby Miles. Sue won’t have someone to go out to lunch with.

But the big thing, the big thing that will be different is that I won’t have my mom. I won’t have my mom.

I won’t have my mom at my wedding. I won’t have my mom at Christmas. I won’t have my mom to walk me through having a baby. I won’t have my mom to help me raise my kids. I won’t have my mom.

I can’t believe its only been 10 days since everything changed.

What's this blog about, anyway?

This blog is about me. (I mean, really, whose blog isn't about them?) This blog is about me saying goodbye.

Goodbye? Goodbye to what? To whom? And why is it a long goodbye?

On August 19 my mom had a stroke. The stroke was caused by a tumor, which turned out to be brain cancer. This is the type of brain cancer that never goes away. So my mom is terminal. Or, in non-medical and somewhat cathartic terms, my mom is dying. The median lifespan for this type of cancer is one year (hence this being my long goodbye).

I'm not blogging about this so you'll feel sorry for me. I'm not blogging about this just to get attention.

I'm blogging because I think it will help me deal. Writing it down, making it public - I can't pretend it's not happening.

And I'm hoping that somewhere, someone else who's in a situation like mine (or not like mine) will find comfort and support through my process.

So here it goes.


p.s. the name of this blog came as a combination of two of my favorite shows, Scrubs and The West Wing. If you can guess how its related to both, without Google searching for it, you get a gold star and television respect from me.