Wednesday, August 28, 2013

Waking Up


It's all there is, all that I'm aware of.

The insides of my eyes are a wall of red and I feel like I'm spinning. There is no sense of head or back or arms or legs. There is everything and everything is raging, throbbing, searing.


Slowly, I break back through the surface of consciousness and my mouth begins to work.

"I'm in so much pain," I groan with a stinging, swollen throat.

"My name is Pam," a voice answers. "I'm your nurse."

My eyes fly open. She keeps talking, she's saying more words at me but I can't hear them. They don't register because in that moment the pain has been chased away by the relief of awareness that I have communicated with someone.

I spoke to her and she understood me. She spoke to me and I understood her.

My brain is working. I can think.

I am me.

*    *    *    *    *

I have a degree in psychology. Once upon a time, back in college, I knew the central nervous system inside and out. I could have drawn you a picture of the human brain, labeled each section, and explained the function of each part.

Here's your frontal lobe.

You, in the sense of your personality, with all of the incredible and maddening things that make you YOU, are born from your frontal lobe. It's the room where your memories live, your compassion swells, your despair bleeds. This part of your brain is your heart and soul.

Over here in the brain stem is the medulla oblongata.

The medulla oblongata controls your basic functions, things like your breathing and heart rate, things that your body just does because it's a body.

See how they are not the same? See how they are two different places?

But that's my college self, with her textbook and her studying and her grades. My 38 year old self tells her, You don't know this yet, but there's a tumor growing in your brain stem. Eventually, it will grow large enough to push on your 6th cranial nerve and cause you to see double. Three neurosurgeons will work to get it out. 

You're going to be afraid of waking up as someone you do not recognize, someone who is flat and emotionless. 

You're going to be afraid that YOU will be lost. 

My college self shakes her head. You're not looking at the science. The tumor isn't near the frontal lobe. Your surgeons won't be poking around there. Your personality, your memories, YOU will be safe. 

All the science says so.

*    *    *    *    *

My friends are here.

Pam The Nurse has blonde hair. Sascha has blonde hair. Dana has brown hair.

This is Dana standing on my right, rubbing my leg. The right side of the room is almost nonexistent because I can't hear out of my right ear and my right eye is covered so that I don't see double. But I feel the warmth and pressure and love from her hand, through the blankets, as she rubs my leg for me.

CONNECTION: I know you. I love you. Look at me, Dana, I didn't die today. Thank you for being here, thank you for rubbing my leg. 

I am me.

This is Sascha, standing on my left, holding my hand. I'm babbling, telling her I'm proud of myself and proud of her as the nurse laughs and says that this is common in surgical patients, it's known as post-surgery euphoria.

CONNECTION: I know you. I love you. Look at me, Sascha, I didn't die today. Thank you for being here, thank you for holding my hand.

I am me.

Soon I'm telling Pam again about the pain. They cut a muscle from in front of my ear and used it as a patch in my skull. From my jaw down through my neck, and spreading out into my shoulder, my muscles are screaming.

Pain. Pain. Pain.

Gratitude. Relief. Joy.

I can think. I can feel. I can speak.

I am me.

Thursday, August 8, 2013

The Scary Part

It's been a long day. It's Monday and I've been at the hospital for blood work, an EKG, and my preoperative physical. It's rainy, I'm tired, and I need this to be over. Surgery is on Wednesday.

I'm trying not cry. I've been positive and focused on all the love and support surrounding me since Diagnosis Day. But now it's time to say goodbye to my sons. I won't see them again until after the surgery.

I hug them. I kiss them. I tell them I'll call them tomorrow.

I tell them I love them.

And then I wonder if I will see them again.

*     *     *     *

People don't like to talk about death or dying or the fact that you might be afraid. Mostly what they want you to do is to Stay Positive! Because Everything Is Going To Be Okay! They will remind you that You Can't Think That Way! Everything's Going To Be Just Fine!

(Spoiler Alert: this is bullshit and I thank God that I've surrounded myself with people who believe in letting you cry your ugly cry and say whatever the hell you need to say, people who will stand there and hug you while you have a cry, even if you're in the middle of a very large seating area in a very large hospital where a number of doctors are sitting checking their phones but neither of you cares about them because you are a real, live woman and anyone who is uncomfortable with crying or feelings can just go fuck themselves anyway because who gives a shit what anyone else even thinks when there's a tumor in your head and it's kissing the part of your brain that controls your breathing?)

Doctors are different. Doctors lay it all out there for you, they make sure they are clear and that you understand the risks involved. You will sign paper after paper saying that you understand and agree to and accept the risks involved.

Death. Stroke. Right side facial paralysis.

Do you understand? Do you?

Stay Positive! 

Sign here.
*     *     *     *

His name is Dr. Matt. He has a last name and it begins with a V, but I can't remember what it is. I remember only that he introduced himself in the ER the first night as Dr. Matt.

"What day is it?"

I know the answer this time. It's Wednesday, June 12th, 2013. It's 9:30 in the morning and my two friends have just been ushered out of the pre-op area because it's time. They'll start IVs, they'll put me to sleep, they'll put in the breathing tube, they'll put the lumbar drain into my lower back to drain cerebrospinal fluid off my brain, they'll pad my body, they'll secure my head, they'll shave my hair, they'll cut through my skin and muscle and skull and remove part of the bone and then lift my brain and try to get to the tumor.

We're done with the baseline neurological exam. This is it. This is happening.

It's go time.

My hands are trembling, but I'm not crying. Dr. Matt puts a hand on mine and says this is a big surgery. He tells me that it's normal to be nervous.

But to prove it, to prove he's right, to prove that it really is okay to be nervous, I feel the need to run down the risks again. I start with the general: death, stroke, right side facial paralysis. Then, I piece together tidbits from various conversations with various doctors over the last week:

-it's in a difficult spot to get to
-it's wrapped around the part of your brain that controls breathing
-we might not be able to get it all
-there's a major artery right here

Does this warrant being afraid? Does this finally warrant it being okay to say, "Not to be overly dramatic here, but this is serious shit and it has shaken me to my core, and while I no longer doubt my own personal strength, I am afraid of having my head cut open and I am afraid that I just hugged my best friend goodbye, and I am afraid I won't see my boys again, and I am afraid that I am going to die today and I am afraid that this is it, that all of these 38 years have led me here and I am afraid that this is how my story ends. I thought I had more time. I thought I'd be a wife again. I thought I'd write a book someday. I thought I'd be a grandmother..."

The anesthesiologist is pretty. She tells me she's a mother, too. She tells me to lie back and relax. I focus on my hand as she puts something into my IV.

Dear Dad, please be with me.

Dear God, thank you for every person I have ever loved, for every thing I have ever felt, for every thing I have ever done. Thank you for such beautiful sons. 

Thank you for this life.

 And then, I am out. 

Thursday, August 1, 2013

Five Free Freebies From the Not Free Hospital

While being diagnosed with a brain tumor is no one's idea of a good time, it helps if you can keep your eyes open to the perks of spending time at the hospital. Here are 5 freebies I walked away with:

1) SNACKS! I sat in the ER of my local hospital for a few hours before getting the news that there was something in my head that shouldn't be there. It was around 4 in the afternoon and I hadn't eaten since breakfast. As soon as they told me the results of the CT scan, suddenly I had all the crackers and juice I could want. This experience taught me a valuable lesson: in a hospital setting, you don't know when you'll encounter food again, so horde the snacks you can. Just shove them all into your purse. Who cares? You have a brain tumor.

2) JEWELRY! Not only does the hospital give you free bracelets, they even personalize them with your name, birth date, and patient ID number! Where else can you get free engraving like that?

3) CLOTHES! Even though I brought my own socks, the hospital gifted me these. While they are a bit limiting in that they only come in blue, they are warm and comfy. The downside is that they have white traction stuff on the bottom to keep you from falling down, so if the ability to moon-walk across the kitchen floor or do that Tom-Cruise-Risky-Business-sliding-in-your-underwear thing is important to you, you might inquire about exchanging these for the mesh underwear that the maternity unit gives away.

4) A NOTE THAT GETS YOU LITTLE BROWN BOTTLES WITH WHITE CAPS!  These speak for themselves. Initially, they are filled with fun and/or awful medication (many of the ones shown here will keep you from throwing up...this qualifies as 'fun' at this point). Once they're empty, you have lots of little brown bottles for holding stuff! And little white caps! For capping stuff!

5) THIS THING THAT LOOKS LIKE GIANT BIRTH CONTROL! While this appears to be a giant condom, the hospital does not actually endorse this as a reliable method of birth control. Rather, this is for throwing up into should the stuff in the brown bottles and white caps not do their job. I keep this in my purse. It's a great conversation starter.

Complain about rising health care costs all you want, if it's paying for freebies like these, I'm on board.