Drowning on dry land

A couple of months ago the antidepressant I take started to quit working for me. My prescriber upped the dose once and then, a few weeks later, a second time. A few weeks after that, it became clear that it wasn’t just the dose that wasn’t working, but the medication itself.

Depression, in my case, is a nonstop inner dialogue about how awful and worthless I am and how much better my family and friends would be without me and hey, why don’t we cry about it for about eight hours a day and just sleep the other sixteen? And also, wouldn’t it be fun to obsess about regular everyday things that are not at all scary but have them ruin my every waking hour? No? Let’s do it anyway.

Fortunately, for people like me, there are a lot of medicines that help. Unfortunately, they take a while to work so increasingly, for the last few weeks, depression has been kicking my ass. Everything I do takes great effort even — or maybe especially — breathing. More than once, I have thought to myself, “If I could just stop breathing and close my eyes, it would all be so much better.” What helps is telling myself that the new medicine might work if I just give it time, if I just keep breathing.

So, I breathe and I move through life because I have kids who need me to keep moving. I cry, but not in front of them. I ask Eric constantly if he wants a divorce because I just know he’s stayed married to me out of duty and not because he loves me because he’s a good guy like that. Later, he assures me he’s not that good of a guy which makes me laugh a little and makes the next breath easier.

And then tonight, there was a breakthrough. While I was lying in my sleeping bag at family camp searching Reddit for “depression,” (not the best idea) someone who didn’t know any of this reached out to say impossibly kind things to me, among them how proud my mom would be of me and a part of me believed him. For a moment, I didn’t feel like an imposter.

All this is to say, if you’re suffering, you’re not alone. Please don’t give up, just keep breathing. Find a person or a medicine or something. There is help.

And if you have something kind to say, do it. You have no idea what a difference it might make to someone. (But not to me, because I will know you’re just trying to make me feel better, but for sure you should say nice things to other people.)

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I don’t cry.

I mean I cry all the time at commercials and viral videos and meaningless stuff like that. But the big, real stuff doesn’t usually make me cry. Last week, I met with my oncologist to discuss beginning chemo. There was blood work, a somewhat nauseating talk with the chemo pharmacist about the side effects, and MRI scans set up for today. None of that, including talking about losing my hair (or my lunch on a regular basis) made me cry.

But this morning, I am crying.

My kids, Claudia especially, are having a hard time lately. At nine, she is grappling with what it might be like to lose a parent (not that I plan to be lost). She lies in bed suddenly feeling that she is “really here” and imagining what death will feel like. She is teary all the time and wants to fall asleep next to us like she did as a toddler.

So we talk. A lot.

We talk about fears and medicine and statistics and death. We talk about all the people who love her and our plans for the summer. We run fast trying to fill our time with cones on “free ice cream day” and family movie nights in hopes that the good things will crowd out the bad stuff. We make calls to teachers and therapists and we hug. We hug a lot.

And then, after they’ve all gone to school for the day, I sit on the couch, bring up some internet video, and cry for a minute because I can’t fix this for them and because later, when I’m in the MRI, and tomorrow, when I head to oncology, I will be brave. I will push through. And I will not cry.

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When the real fun began

Things are not going well.

After surgery, which lasts almost eight hours, I am in recovery alone for another sixty minutes or so before being moved to my room.  When I get there, there is no sign of Eric. For some reason, despite organization and technology, no one at the hospital ever told him to come to me.

I ask the nurse to let my husband know how to find me and he returns to tell me that Eric is nowhere to be found.  I am surprised but drowsy and I figure that Eric will come in any minute.  He does not.

Two hours go by and I call to the nurse again. “He’s not in the waiting room?” It is evening by this time and we have been apart for almost twelve hours.  I can’t imagine where he would have gone to since, even under the worst circumstances, he must have assumed that the surgery would be done by then.

Panicked, lonely, and in pain, I start to realize that something else is wrong: for the first time in six surgeries I have awakened unable to move my legs.

I try to remain calm and ask the nurse to call Eric on my cell phone, which he had because of course you are not allowed to take cell phones with you to surgery. So, although I could fix all of this in a heartbeat if I just had that tiny computer in my hand, I am instead lying helpless in bed three hundred miles from home.

The only possible silver lining is that Eric has my phone. Because his phone wouldn’t text in Chicago and he needed to let people know once surgery was over, I know that he has mine on and with him rather than it sitting in the bottom of my purse somewhere.  Sadly, I have a vivid flashback of turning the phone to silent and handing it to him that morning and now I realize that unless he is looking right at the phone when it rings, he’ll never see that someone was trying to reach him.  Add to that the fact that my own phone number is the only one I know by heart and the panic sets in again.

I ask the nurse to try to call Eric (since I cannot make long distance phone calls from my room) and blurt out a series of numbers that I hope will lead to my husband.  The nurse returns and tells me they do not and that maybe ten hours after I last saw him, Eric has gone out for coffee.

I am still druggy post anesthesia and I begin to imagine that he is hurt or dead.  He is missing in a strange city and that I am lying in a hospital bed paralyzed and unable to get to him. I cannot recall a single person’s phone number and the few local numbers I can pull from my brain belong to businesses that are closed now. It is after five and I realize that I will have to wait until morning and then call Eric’s office back home to start getting help.  It is the absolute worst feeling I have ever had.

On another floor, Eric starts to wonder what is taking so long.  He was told hours ago that I was out of surgery and that he could see me soon.  Within a half an hour he asks a woman in the waiting room (where he had been without even a bathroom break for more than twelve hours) when he might see me and she sends him in the right direction.

And suddenly, once I hear his voice come into my room, I know the worst was over.  Tied in tubes and unable to move I call out to him from the hospital bed, “I’m so glad you’re not dead!”

“Thank you?  Why would I be dead?” He asks and I begin rambling about how long the last few hours felt, how I worried that he’s been shot or in a car accident. “Funny you should say that.  Someone did crash into our car in the parking ramp, but I’m fine.  How are you?” he asks.

“Funny you should ask.” I take a deep breath. “I can’t move my legs.”

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The night before

5697632_origAfter an hour of talking to the neurosurgeon about how the surgery will go one thing is clear: it will be hard.

There’s a chance they will open me up, look at how the tumor is wrapped around the nerves, decide there’s nothing they can do surgically, and close me back up.

There’s a chance because they’ve done this so many times before, and because I’ve had radiation in that spot, that things might end badly (everything from spinal fluid leaks and infection to not being able to walk.)

He assured me that I wouldn’t die on the table and that having the surgery wouldn’t cause me to be in tremendous pain from here on out and that’s good enough for me. I’m pretty easy going and if need to be easy-going in a wheelchair or after a much longer stay in the hospital, then that’s what I’ll do.

In the meantime, I’m ignoring the fact that I have a 4:30am wake-up call and am instead enjoying this beautiful view from the balcony!

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Because I am my own worst enemy

I am scared, scared beyond reason these days. This part of the journey, this surgery, should be an easy part and yet I can’t stop voice in my head that follows my everywhere, running my brain in endless circles and stealing my breath.

Eleven years ago, a doctor told me I had, maybe, two years left. Friends cried, but not me. I didn’t cry because I didn’t believe him. I had a new baby and plans for more. I was 29 then: young, brave, stupid.

Now, no one makes proclamations about expiration dates because we’ve been through harder stuff than this.  This tumor acted in the performance of our worst case scenario when it took up residence in my brain five years ago and I faced the radiosurgery with only a moment of tears as I lay, literally screwed, to the radiation table.  There was none of this pre-procedure drama.

Now my friends are the ones who can’t imagine me gone, but I can. I can see it as clearly as I saw my future all those years ago.  Right now, I am just three years younger now than my mom was when she died. I can no more see myself at my children’s graduation that I saw her at mine, except that this is different.  I will be fine. There is no reason to think that the surgery will be anything but fine. Difficult perhaps, but fine. 

But some part of me refuses to believe it.  My brain will not turn off now.  It is a tornado swirl of disaster and the most unlikely of scenarios.  Each morning I sit on my front step and weep quietly.  I call or text friends to virtually hold my hand through it, but it’s really only after a half an hour of tear-stained cheeks that I begin to feel like I can face the day.

At night I do crazy math.  The surgeon I have sought out–who has successfully performed this surgery on me four times before– is also the one who signed my mother’s death certificate, not that I realized that until years later.  Before I saw  his name at the bottom of that form in some burst of short-lived curiosity about genealogy, the actor of that role in my head was just a shadow person.  What he said was burned in me forever, but his face was lost to time and shock.

But now, that signature means he isn’t lost at all.  It means my doctor was the one to lead me, my two-years-younger- brother, and my grandfather back to some hidden part of the hospital, the ICU maybe, to show us a wall of illuminated scans.  That means it was his voice that narrated the story of her death to us: the exploded aneurysm, the brain full of blood, the hopelessness of it all. It also means that he has been the one to cut me open four times, remove the tumors, and put me back together again.

In bed, unable to sleep, I Google him and find that he graduated medical school in 1983, the year I would turn ten, seven years before my mom would die.  Eric lies next to me in the dark, blissfully unaware of my mania until my voice cuts through the silence, “How long is medical school?” I ask my lawyer husband, as if this is something he might have studied.  “I have no idea,” he answers, and if he is growing tired of these late night quizzes, his even voice doesn’t betray it. 

I Google the length of medical school and do crazy math: graduation in 1983 means birth in 1956 or so, which means he walked my seventeen–year-old self past those scans at, what, 35? Thirty-five? My god, he was a baby then!

He would have been, maybe 42 at my first surgery?  That means he is maybe 58, just a decade older than the poor man that lies next to me trying to sleep, while his crazy wife hunts for details that mean nothing.  It seems like the people who do things like cut into your spinal cord or drain the blood from your mother’s shattered brain should be so much older or be super heroes, or something.  They shouldn’t just be, you know, regular people.

The math doesn’t help because it changes nothing. There is nothing I can do.  The date is set, the details figured out, and yet, because my brain needs a problem to be solved it is creating its own pointless worries with worthless answers.  It will be alright, or it won’t.

And it will. I know that somewhere, deep down. If I didn’t I could never make myself get on that operating table.  Unfortunately, that part is small and still and easily overtaken my fears.

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Ah, This day!

Today I showered by myself after a long night where I couldn’t get comfortable and, eventually, ended up sleeping on the couch. (I might have to stop telling Eric how much I hate that stupid couch if it’s the only place I can get comfortable enough to sleep… maybe. I still hate it.)
I worked for the first time since I was in the hospital. Sure, my job is posting content to a blog so it isn’t like I was out digging ditches or anything, but still, it was a step back.

Also, my network of people who I’ve set up to remind me that I am NOT going to die during surgery (which is an irrational fear, yes, but try telling my stupid brain that) are doing a great job of texting me randomly to let me know it’s all going to be fine.

And the most amazing breeze is blowing through the open window next to me reminding me that even if I do die during surgery (which I won’t) I have a perfectly wonderful life which is more than I ever deserved and if it ends tomorrow or August 26 (which it won’t) I have nothing to complain about. (Except that stupid couch.) Lucky, lucky me!

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Here we go again

I will be having surgery on my spine to remove two lesions on August 26th in Chicago. The reason for the long wait is that I really wanted this specific neurosurgeon. I have had five surgeries to remove tumors from my spinal cord in the past. Four, all with this neurosurgeon, went well. The one with a different neurosurgeon that I picked out because the location was conveint, was not great.

The problem is my surgeon spends a great deal of his time traveling and giving talks now, so he’s gone a lot. He felt that because this surgery would be more difficult (since part of it would be opening up a section of the spinal cord that has been operated on three previous times and has had radiation therapy all of which has caused scar tissue) he wanted to not just do the surgery, but be in town and available for the week after, while I am in the hospital, in case there were complications.

Right now, I am doing well at home. I’m frustrated by my limitations, but am able to do most things, at least for a small amount of time.

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While you were sleeping

So much is a fog of pain and then pain killers and then pain again and on it went. I can remember little of the hospitals and the ambulance transfer, which is strange to say the least.

My favorite story that has made its way back to me is this: the amount of pain medicine needed to control the pain of the tumors impinging on the nerves of my spine was also enough to slow my breathing. While in the hospital with my friend, Megan, from time to time the pulse oximeter would beep to let them know that the oxygen saturation of my blood was too low and I needed to breathe more deeply. Apparently, every time it would ring out I would grumble, “I’m breathing!” Sweet Megan would brush my hair back and say kindly, “I know, honey, but I need you to take some deep breaths now.” To which I would reply angrily, “I think I know how to breathe!”

Nice to know that one of the first things to go is my manners. Well, you know, and breathing.

In better sleeping news, this adorable sleepover happened while I was out!

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