Monday, November 25, 2013

While I Was Sleeping

A point of fascination for me over the past three years has been how much of my experience hasn't been mine alone. Nothing happens in a vacuum. As much as I've tried to reconcile my own memory of events from September 29, 2010, through early October 2010, it's helpful, upsetting, surreal, and often validating to hear others' accounts.

For eyewitnesses, I have Jamie's blog entries, starting here and running into October 2010. And I have e-mails my mother sent out to a distribution list of friends and family (note the change in font to go with the change in voice):

Out of Surgery
Ken is resting comfortably in the Neurosciences Intensive Care Unit and as Dr Ogilvy, his surgeon, said, we're all cautiously optimistic.  It was tricky surgery and we were concerned about some weakness on his left side initially afterward -- but that has improved dramatically and the doctor is very pleased about that.  Ken spoke to us, squeezed our hands, and passed additional neurological exams for the doctor -- all very exciting for us. So far, so good.

We saw Ken this morning and he had had a restful night after the surgery, spoke to us and seemed okay, but suddenly he developed a weakness on his left side.  Bottom line -- he's back in the OR now because there's a bleed that developed.  We're glad he's here at MGH and in the hands of a wonderful doctor (who has been wonderful to us as well), and are hoping that this is a temporary setback, but we just don't know...

Out of Surgery Again
This time Ken was in the OR almost as long as the first time.  Luckily they found that the bleeding was located between his skull and the brain -- not in his brain.  They were able to stop it and then moved on to addressing the swelling that they think contributed to the weakness he showed earlier.  What they've done is to remove a section of skull temporarily to relieve the pressure.  Believe it or not, this is a fairly common procedure.  So now he's back in the ICU sleeping.  He's on medication to keep him asleep for awhile; we're not sure for how many days.  The surgeon said they'll be monitoring him closely for signs of a stroke.  He'll remain in the ICU for a much longer time than we had anticipated. His vital signs are all strong and we're still grateful that he's in such good hands. Thanks for all your prayers and good wishes.  They're a great comfort to us.

Stable After Another Setback
It's been a roller coaster ride.  Once Ken was back in the ICU after the second surgery yesterday, the MD head of the unit told us Ken had suffered a small heart attack and had no movement on the left side. So we huddled together in despair for several hours.  Then we visited him one more time and got a thumb's up from the resident who was examining him.  In fact, the doctor asked Ken to give us a thumbs' up, which he did -- such a relief.  The doctor explained that the heart attack was mild and not uncommon after brain surgery and that he felt Ken was now showing some progress. 

Today he was stable.  He's sedated most of the time, but they stop the sedation every few hours to check his condition and he continues to squeeze our hands, give us a thumb's up and wiggle his toes when asked -- still only with his right side, unfortunately, but we're hoping that will change.  There was some damage to his heart, but it's pumping strongly and the cardiologist is reassuring.

It was such a help having Lisa and Jeff with us during these trying days and they're ready to head back up if we need them, but at this point their families need them more so they drove home today.  Ken's good friend Jamie (we call him Jamie Boy to avoid confusion with Jamie our daughter-in-law), who lives in Boston, has also been with us much of the time and has been wonderful company. So for now we're camping out each day at the ICU, hoping for more thumb's up moments.

Still Stable
Still stable!  They've cautioned us that Ken might have had a stroke, but the doctors aren't actually sure, though they clearly suspect it.  The edema is clouding up the images, and a stroke creates even more edema -- so if he had one, they have no way of telling how severe it was.  The good news is that his heart is doing well and the cardiologist is very pleased with his progress.  All the doctors are encouraged by his response to commands and the brisk and immediate way he moves his right side when they ask him to.  He's a fighter!

Jamie is on her way home to the boys and to give her mother a much needed break. It will be a good change for Jamie, too, though of course she was very torn about leaving Ken.  She'll return on Tuesday.  We'll be at his side as much as they allow (they kick us out every 2 hours so they can work with him.)

Today’s Progress

Late in the day was encouraging.  They removed Ken's breathing tube, substituting an oxygen mask for now.  What a relief it must be for him and it was wonderful for us to see him have the freedom for some satisfying, big yawns.  And when we left him this evening, the nurse asked him to wave goodbye to us -- which he did, with his right hand.  Otherwise, everything is stable.  We spent much of the day at his bedside -- reading and talking to him and holding his hands. We know he missed Jamie being there, but it was wonderful that she could be home with the boys to reassure them and snuggle them with love.

While I was on some level aware of and living through those traumatic events, sometimes it's entertaining for me to hear from concerned parties not so entrenched in the drama and actually living their own lives (imagine that -- life goes on). I just tried finding The New York Times or Boston Globe front pages from that day, but the best I could do was the Cleveland Plain Dealer (and Bon Jovi still hasn't been inducted into the Rock and Roll Hall of Fame!). For years, my friend Laura has been regaling me with her story of where she was when I was having my head cut open. So I've asked her to put that chronicle in writing (note the new font again):

Have you noticed that it’s been impossible to turn on the television this past week without being confronted with the question, “Where were you when…?”

Of course, people are talking about the 50th anniversary of the Kennedy assassination, but it is always interesting to ask that question and discover how different people experienced a shared event: 
  •          I wasn’t alive during the Kennedy assassination, but I can tell you I was heading into class at Westbrook High School when Chrissy Martin grabbed me and told me that the Challenger space shuttle blew up.
  •          I was at my desk at work that bright, clear Tuesday morning when my mom called to say a plane had flown into the World Trade Center.
  •          And I was standing on a boulder in a field in Central Texas when I found out my friend Ken had had a stroke.

But perhaps I’m getting ahead of myself….

For a while now, Ken has mentioned his interest in hosting a series of blog posts entitled, “Where were you when Ken had his stroke?”  Since his focus was on healing at the time, he was pretty unaware of what was going on around him.  His wife, Jamie, and friends have painted a general picture for him, and he can go back read the blog articles Jamie wrote during the time which keep us all informed, but I can understand the appeal of first-hand accounts.

I was incredibly honored when Ken asked me to write a blog entry based on my experience and perspective of his ordeal.

I’d like to think he asked me because he likes my writing style and thought I could do justice to such an important and personal subject.  Of course, he could have asked me because I was one of his only co-workers that would answer differently than, “I was at work.”

In my heart, though, I know that Ken asked me to tell my story because the visual of me standing atop a boulder, surrounded by cows and holding up my phone like the Statue of Liberty’s torch as I tried to get a signal, makes him laugh. 

Let me provide some background.

If you are reading Ken’s blog, you probably already know (and I’m going to simplify the facts, Ken) that three years ago he was diagnosed with a brain aneurysm that required surgery.  There was very little we knew about the prognosis of the surgery at that time.  Ken could have come out with no ill effects, major cognitive issues, or somewhere in between.  I can’t even imagine how scary a time it was for Ken and his family, because it was no picnic just being within his circle of friends.  Just prior to his surgery, Ken hosted a few happy hours at the Sea Dog to spend time with friends, not knowing what life would be like after the surgery.  We tried, but it was difficult to keep the “happy” in the hour.

Cut to a few days later.  I was on a long-planned vacation that included stops in Las Vegas, San Antonio, Austin and a horse ranch in Bandera, Texas.  The Bandera day was the day of Ken’s surgery.  I had prepped our mutual friends with my phone number and the promise to keep me informed. 

And they tried.

But, do you remember the part of the movie, Ice Castles when Robbie Benson turns to blind skater Lynn-Holly Johnson and says, “We fuhgottabout the flowers.”?  (If you don’t, go out and rent Ice Castles immediately.  I’ll wait.)

Anyway, we fuhgottabout the lack of cell service in Texas.

While in town – which consisted of two bars, a liquor store and a general store that sold hats and boots - I got one text from my friends telling me that Ken had made it through surgery and was doing well.  Phew.  My friend and I headed back to the ranch where we were staying and went on a long and beautiful horseback ride. 

It was when I returned to the bunkhouse that my phone lit up with a few missed calls and texts consisting of messages no more informative than a simple “Call me.”  Well, these were the days before my smartphone, iPad, hotspots or free WiFi.  It was me, a few desperate-sounding messages, a flip phone and no signal.

Since I had received a signal in the room at one time, I figured I just needed to hold the phone at the right angle.  So I stood on the kitchen table in the middle of the room.  After many contortions that could have doubled as my Cirque-de-Soleil audition, I was finally able to send a text letting friends know that I couldn’t make or receive calls and begging for more details. 

After a moment, I got a text back with a link to Jamie’s blog post detailing Ken’s condition.  That would have been helpful if I had any way to access the link on my pathetic old-school phone.  Also at that point, the moon probably orbited to just the right spot that I lost any signal in the room whatsoever.

Which is when I marched outside, pushed my way through the cows milling about, found a big rock and climbed it.  It took a while, but I finally pieced together the story that Ken had had a stroke while recovering from the initial surgery, but was still fighting the good fight. I knew as much as anyone else at that point.

The next day, I pulled into the first Starbucks I could find and finally accessed Jamie’s full account of the day’s events.

So now I challenge you to answer the question, “Where were you when Ken had his stroke?”

This is Ken again. Yes, please share your own stories in Comments below, if you're so inclined.

1 comment :

  1. I take exception to the fact I "regaled" you with this story. Standing on a rock in the dark in a Texas field just naturally lends itself to regaling... It wasn't really my doing.