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I still have good days and bad days.  (I suspect I always will.)  The difference between good and bad and better and worse is often one of degrees.  Today my head hurts slightly.  Today I will always know where the excedrin bottle is.  Today I will barely leave the couch.  Today I will only get out of bed.  And similar scales.  Most of my days, thankfully, land on the better and good end of the scale.  I know what it’s like when days tend to land on the other end of the scale.  When the “good” days are the days when you only have to take two naps, one pain pill, can think.   And I know that there are days in the middle days where I don’t want to or don’t have time to or am just sick of talking about being sick and so need to pass as healthy,  as having a good day.  I need to act healthy.  Despite the pain in my head, or my back, or my leg, or whatever.

There’s another time I do this.  I do this after surgery as I become healthy.  It’s actually an important skill then.  Because if I don’t start acting healthy, despite wanting to sit on the couch and sleep, despite better knowing how to be sick, I’ll never really believe that I am healthy.  I’ll never discover that I can make it down the street or up the stairs or do whatever or go where ever.

In the church I think we get caught thinking we are still sick.  Or to put in the terms we use, still dysfunctional, still caught in a prior generation’s way of thinking, still caught up in the way we’ve always done things.  We forget that the world has moved and that we, sometimes, oftentimes, haven’t.  And as this reality catches up with us, we want to take things slow.  To stay on the couch and have committee meetings, to read books, to commission studies, when what we need to do, sometimes, oftentimes, is try getting up and moving across the room.

But sometimes we need to act healthy.  Today.  Even when it seems impossible to believe that it could be true.  Even when our heads hurt or our muscles ache and the people coming to church aren’t the people we thought would come or aren’t coming at all.  Because sometimes when we act healthy we discover that we are better off than we thought we were.  Today.


Last week I went in for my yearly MRI.  My 17th MRI.  In the last 9 years.

Neurosurgeons like to have you do MRI’s for at least 5 years after they remove a tumor from your head.  And I’ve only ever made 3 years….

Every MRI has the potential for great post-teen but still angst ridden writing, and I haven’t done that.  Instead I’ve been caught up balancing my own (inevitable) stress with the also inevitable stress that these put my family through.

My tumors have only presented with symptoms once.  The need for every other surgery has been identified by my yearly MRI.  This, plus some other family history, makes my family a little extra jumpy when I have an MRI, or blood work, or go see a doctor.  Which in turn makes me a little jumpier.

This year I told my doctors they could schedule anything except during the same week as Ash Wednesday.  And I asked for an anti-anxiety pill during the scan.  MRI’s aren’t bad.  I mean they are loud, long, and boring, but they aren’t bad.  It’s me.  It’s that I’ve had to do 17 of these over 9 years.  It’s that this could mean nothing but an annoying hour or so, or it could mean surgery and forever of recovery.  It’s that this never used to happen.

And that whatever my doctor says in a few more days, I’ll be back next year.

Last time it took three years.  Three years to feel like I had my body, my energy, my life back.

This time, it’s been two, mostly.  Two years and a couple of months since my last surgery, which is the date I celebrate, and will continue to celebrate.  But for the marking of how much longer it will be until I might feel like I have my body back, it hasn’t been two years.  After surgery there was the radiation.  And after that there was The Headache.  And recently I’ve discovered that the headaches never really stopped.  So the amount of time since my body has been dealing with a significant health issue?  Well, I’m not really sure.

Two years since surgery.  A year and three quarters since radiation.  A year and a half since The Headache ended.  A quarter year or so since the migraines have been under control.

I don’t know how long it will take this time.  I don’t even know when to start the clock.

Last time it took three years.

I’m mentioning it more often.  It’s not that I ever insist on not talking about my surgeries, it’s just that I also don’t insist on taking about it.  And in the last few weeks I have taken opportunities that I usually would have passed on.  At the slightest opening, I’ve mentioned my surgeries.

It isn’t a mystery to me.  The second anniversary of my third surgery is next week.

My surgeries are on my mind.  I’m trying to figure out what this means.  I’ve survived two years since my last surgery.  And it doesn’t feel like two years.  It feels like one year.  Which, in some ways, it has been.  A month or so ago was the one year anniversary of the end of The Headache.  Which means that it’s only been a year since there wasn’t something significant and negative going on in my body.

Today this is what I know.  Every surgery is different.  Every recovery is different.  And I’m not done talking, speaking, writing about that.

In the New York Times’ Health section this week, Dana Jennings, a prostate cancer survivor who has been writing about his experiences for the NYT, had a piece about recovery.  Recovery, he writes, is more than just getting up out of your bed and resuming your life.

Still haunted and chastened by the Puritan work ethic, our culture doesn’t much believe in convalescing, in full recovery. No matter what happens in our lives — a grave illness, a wrenching divorce, a death in the family — the unspoken understanding is that we should want to rush back into the game. Like an old-time quarterback who has had one concussion too many, we are expected to stagger back onto the field no matter what.

He uses the terms “recovery” and “recuperation” to differentiate between physical healing and regaining a full life.  I’ve written about how long recovery can take a lot, as a quick search of my posts revealed.

And, as we come up on my two year surgery anniversary, recovery is still on my mind.  And I’m sure I will have more to say about recovery.  For now, though, go read what Dana Jennings had to say in it’s entirety.  I’ll close by quoting another part of his article.

After surgery and treatment, my 21st-century synapses and neurons wanted to believe that the cancer had been no more than a bump in the road toward a bright future — just a particularly nasty frost heave.

But the deepest analog part of me understood that having cancer was a life-changing event. As much as I thought I wanted to forge ahead, surge into the whirlwind of dailiness, I needed to slow way down.

The scar on my gut might have faded a bit — I had indeed recuperated — but I still needed to recover.

Life at Camp is busy, fast-paced, and always a little seat-of-our-pants.  We try to plan the heck out of a week.  We go over and over our schedule, we assign staff, we have daily staff meetings.  And still, things change suddenly, staff have unexpected needs that come up.  And our days are just long.  Our programming day starts between 6 and 7 am and lasts until 9 or 10 pm.  Conservatively that’s a 14 hour day or a 70 hour week.

And this year, it’s a little more than I always can do.  I’m just getting up while the rest of Camp is already moving.  I join them for breakfast.  And I’m learning that I often need to duck out of Campfire a little early so I can finish up my last few tasks and get to bed.  So, I’m trying to only work about 60 hours a week.

It used to be different.  I could be up and moving at 6am and the last person to leave the Campfire.  Then I’d finish up my last few tasks and head to bed.  I remember that life.  It’s gone.

It’s not that I’m older.  I’m not that much older than I was before.  It’s that 16 months ago I had brain surgery and 11 months ago I had radiation.  And I’m not back to normal (whatever that will be) yet.  I need every minute of sleep because otherwise I’ll have no energy.  I have very little in reserves–that energy goes toward healing.  And it takes me a little more to do basic things now.  Eventually I hope that this will be different.  That my body will be a little more functional.  A little more healed.  Eventually I will have rebuilt reserves.

But right now I know that this was easier once than it is now.  And that, given a choice, I would be doing nothing else right now.

My keychain looks different this week than it did last week.  And I’m not sure how I feel about that.  I know how I want to feel: happy, relieved, unconcerned.  But I’m not quite there yet.

After surgery#2 there was a period of time when I lived with adrenal insuffiency.  This meant I needed a mid-afternoon dose of corticosteriods.  So I started keeping that dose in keychain medication holder, because then it was easy to have with me.  After surgery #3, I bought another keychain like that so that I could keep pain medications with me.

At first it was just to keep up with normal post-operative pain.  And then the headaches started.  That was when I started keeping ibproufen and excedrin migraine in little bottles (they sell them in little tubes and I refill those) and my prescription pain relievers on  my key chain.  During The Headache this was necessity.  Without medication I couldn’t function.  Afterwards it was precaution.

Last week I took the keychain medication holder off of my keychain.

My headaches have been less frequent and less severe.  So I’m hoping that I will not need that level of medication.  But I’m still scared.  So the keychain with it’s medication is floating in my purse.  My unwillingness to be separated from pain medication tells me just how bad The Headache was.  I have a reason to be afraid of that kind of pain again.  I’ve lived with it once.

So, I’m still scared.  I am concerned about getting caught with a headache and without medication.  But I am also hopeful that when I next clean out my purse I might be willing to take out the prescription pain medications.

Just not today.  You see, I’m still recovering.

The best thing about Tuesday is that it includes the Health and Science section of the New York Times.  As I no longer live in a city where I have easy access to the NYT and I never did make it through the entire paper,  (I consider myself a news junkie, but I don’t have the time for that level.)  I have the headlines delivered to my inbox.  This week it includes an article written by Loren Berlin about life with her chronic illness.  Ms Berlin writes beautifully and the article is worth reading just to enjoy her skill.  I’m mentioning it here because next week is the one year anniversary of my last surgery and Ms Berlin’s article speaks beautifully about much of what I too am feeling.  About being caught living the life you have today and living with the knowledge that life is less certain than we like, that this could, or in her case will, happen again.

This week I was hiking with friends.  It was a beautiful autumn day, cool but warming up, with leaves just beginning to change colors.  The people I was with are great people, each of whom I enjoy spending time with and the conversation was delightful.  It was a nearly perfect time.

It was about 12 months ago that I realized that my legs had equaled out.   They had begun to respond equally to exercise or exertion.  And one of the things I knew about having surgery again is that this would no longer be true.  (I talk more about this here.)  But sometimes I forget.  

I forgot when I agreed to go hiking.  Inclines, you see, are one of those things that are particularly challenging for my leg.  Moving up and down an incline creates a level of demand for the muscles around the graft site that my muscles don’t happily do right now.  But I forgot this.  So it was about half-way through the hike, or at least my portion of it, when I finally had to turn to my companions and say, “I can’t do much more of this.”  They were gracious and I rested at our picnic spot while they made it up to the top.  

I was right.  On the way down, my leg was definitely at its limits.  And it has reminded me of this excursion for several days now.  I’m glad I went.  I’m glad I recognized my limits and lived within them.  I miss how I felt last year.  I miss that freedom.  I miss living without this pain.

It happened before.  It can and will happen again.  That doesn’t mean I’m going to like what is right now.

It was a nearly perfect day.

I woke this morning and
didn’t move my head
I was at just the right
angle to breathe
and resting at the perfect spot
between the pain sites.
And I lay there blinking sleep away,
thinking, “How quickly I learn,
these habits I don’t want.”

written 7-15-08

I’m home.  I’m thoroughly enjoying the pain medication they sent me home with.   The treatments seem to have gone well, but we won’t be able to see any results for several months.   

In the meantime I’m resting (again) and waiting for the pain&medication head fog to clear up.  So, for now I’m sitting on the couch, with a blanket, a couple of books, my laptop, and the TV remote.

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