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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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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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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