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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My darling is a darling

1406923371I got to see my lovely Emily (center, sitting on Nana, the dog) perform as Michael Darling in The Iowa River Players Theater production of ‘Peter Pan’ tonight. Everything about it was wonderfully done and I was amazed by Emily’s performance.

She is, unlike her mother, absolutely fearless!

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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!

7069551_orig

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Finally, answers

Thursday night, I was admitted to my hometown hospital in awful pain. After three days and two nights trying to get my pain under control, last night I was transferred by ambulance to the University of Wisconsin Hospital in Madison.

I just got out of a three-hour MRI and, as I returned to my room, I was greeted by my oncologist who told me that the tumor that had been stable while I was on the chemo had grown dramatically in the last seven weeks and now requires surgery (probably before Friday) and then weeks of radiation.

I’m sorry, that’s all I know right now. Thank you from the bottom of my heart for all the good wishes and prayers! They made all of this bearable.

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More than I can take

It’s almost 1am and I can’t sleep; the pain is excruciating. The only relief I’ve been able to get was from an amount of Percocet so high it made me unable to function from exhaustion and nausea.

Claudia sobbed for an hour today when I told her I couldn’t drive her to Ft. Dodge for camp so I’m determined to make it through the night without the Percocet so I’m clearheaded for the drive in the morning. And the oncologist has scheduled an MRI for Monday in Madison which seems both a million years and miles away.

Right now, I could swing being a patient or a mom, but trying to do both is killing me.

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More excitement that I can handle

Two days ago I threw my back out playing Just Dance at a Fourth of July get together because that’s how I roll. The last two days have been painful, but it had been getting better… until tonight.

Moments ago I raised my arm just to waist height while trying to put away leftovers after dinner and was knocked to the floor in tremendous pain. Unable to stand up or even sit, I hunched on all fours on the floor and put the Lamaze breathing I never got to use in my three C-sections to work. Claudia came rushing in and stated, “At safety camp they told us if our mom or dad was on the floor couldn’t get up we should call 911,” which, for some reason, made me laugh, which made the pain shooting through my spine worse.

The moral of the story? I need to find more exciting ways to explain my Gollum-like posture. This throwing-my-back-out-while-sneezing crap is getting old. Who’s up for skydiving? Or toddling with the bulls?

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Independence Day

Fourth of July parade!
6303238_origYou haven’t seen the Fourth of July until you’ve seen a small town do the Fourth! The parade was over an hour long, the kids got pounds of candy, and you know everyone lined up for miles!

8635636_origThe kids and I love Eric very much but even we can’t look at his name on this float. Turn away, Claudia!

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