Thursday, March 05, 2020

Notes on the 14th Surgery

It was 12 days after I had major surgery. The first seven of those days were on my back in bed. I had two days left of a 14-day liquid diet.

And the oncologist was telling Anne-Marie she needed brain surgery as soon as possible. She had spent the first 10 days after my surgery helping me get back on my feet. Then, on the 11th day, the lingering headache she’d been ignoring became too much.


The 14th surgery has been the most empty time I can remember and as urgent as the brain surgery was, we were in no hurry. My recovery from surgery had been painful so far and--because of what happened two years ago--we knew what we were facing with another brain surgery.  Sleep and sanity were in short supply.

However, getting a surgery date on Presidents Day, February 17, allowed us a bit of breathing room. No dropping off and picking up kids from school due to the holiday, so we could just wake up and go to the hospital. Straight to the hospital, except Mariah became extremely ill an hour before we were supposed to leave. So now with only our son in the car (and daughter back home with Grandma) we were off. 


It was a 10 AM check-in at the hospital.  Family and friends were already there to greet us and a group of us took a few minutes before the check-in to go to the hospital chapel and pray.  Hospital chapels are not generally set up for Pentecostals, but we managed to work through it without getting security called on us.  (Folks can get loud for sure.)

This is the 14th surgery, so I can tell you with assurance that a 10 AM check-in means surgery around noon.  But not this time.  Two dozen people came to see Anne-Marie that day and nearly all of them got a chance to come into short stay see her off before the procedure, because they didn't bring her back to the operating room until 3 PM.

The time waiting was emotional, frustrating, boring and extremely hungry.  Anne-Marie was on steroids leading up to the surgery to reduce the swelling in her brain, so she was ravenous.  I always make it my practice to not eat before surgery if they aren't allowing her to eat (which is almost always), so I waited an extra three hours for the mid-op cafeteria meal like I'd had 13 times before.

But it didn't end up as a cafeteria meal.  Without being asked, more than one family had decided to drop by food in the waiting room for the dozens of friends and family gathered.  They had taken over about 25% of the first floor of the hospital and made it into a buffet.  Our tribe is pretty solid.


The neurosurgeon had told us in very specific terms that the area of the brain where the tumor was growing was the one that controls speech and mobility, so I was pretty freaked out.  But I was so hungry, I came down the stairs anyway because I heard there was food.  Fundoplication recovery doesn't allow for very quick consumption of anything, so it became a difficult task trying to eat without rushing.

I managed to--no exaggeration--choke through the food and greet everyone who had been kind enough to come to the hospital and wait all that extra time.  The kids went off to the sitters and I looked at the status monitor and realized the procedure was already nearing completion.

Hospitals have changed so much since we first started this journey that now you can enter a special code on their website to see how much time is left on a surgical procedure.  You don't even have to be at the hospital.  So instead of the hours sitting nervously in the waiting room like I did back in the mid-2000s, I got to walk back upstairs with a 15-minute warning and wait for the doctor to come to me.


Dr. Modha appeared a few minutes later in the main surgery waiting room and gave us his report.  He said that the tumor was where they expected it to be, but it was "reaching" to take over more of the brain tissue.  Because of the critical placement of the cancer, he stopped extracting once he thought the risk was too great.  Doing this made him question the margins.

Also, the incision location had to be changed on the fly to get better access to the tumor, so Anne-Marie now had been shaved and had 12 stitches on the back of her skull.  

A follow-up MRI was scheduled for the next morning to look at the changes in the brain and to hope for a reduction in swelling.

That report was below mediocre.  I didn't want to show how disappointed I was, but what if they didn't get it all?  I'm pretty sure the doctors don't look at it the same way I do.  As a success or failure.  A win or loss.  They see the whole picture and realize the extremity of the situation while balancing it with the limitations of treatment.  I guess that's why I'm not a doctor.


Anne-Marie was in recovery, so I decided it was really time for my cafeteria meal.  Brian, Mike and couple others decided to join me, so we went off to the place where option #1 is always chicken strips.  We all talked to pass the time until going up to our new lodging in ICU.

ICU at PeaceHealth Southwest's Firstenburg Tower is the nicest I've ever been to.  ER's and ICU's are nothing like whatever you've seen in a movie.  The walls in ICU are made out of granite, with the exception of one, which is made of glass.  I guess, that way they can "see you".  

The next morning's MRI results came across more positive than the post-surgery report: all major cancer was removed with any remaining at the microscopic level. (more on that later) Swelling had already reduced significantly lending to the theory that the fluid and swelling from earlier scans was caused by the irritation of the invading tumor.


One thing I learned about ICU in 2014 is that they don't like letting you sleep.  Every hour on the hour "neuro checks" were happening with medication on top of that.  Anne-Marie was just as hungry as before the surgery but now trying to fill up on ice chips and apple juice.  So, the first night was miserable.

By the next afternoon we moved into a "standard" room one floor up in the tower that competed with the suites in the family birth center.  (Just kidding.  No rooms at any hospital compete with the ones in the Family Birth Center.)  It was nice and even had a long bench that made into a bed rather than a pleather recliner for me to sleep on.

The view from our room
Dr. Modha came to our room and told Anne-Marie she was very brave and that what he observed in the operating room let him know that surgery was truly the only medical option that was going to help her situation.

Along with that, all kinds of visitors came and went and we're grateful for them all.  Some even brought me cookies.  But much of the time was just Anne-Marie and I in that room.  Occasionally I had to run to get more chicken strips, but mostly I could just help her eat her applesauce and oatmeal and just let her rest.  All was out of our hands and out of our control.  The scary part was over and the hard part hadn't started yet.


Anne-Marie was doing so well that they discarged us on Wednesday, just 48 hours after her major brain surgery.  Now she's been home for two and a half weeks.  Even though she hasn't been out of the house for any reason other than follow-up visits to the doctor, she is doing very well and can get up enough to make her own meals and look out at the birds.

All kinds of visitors have come and gone in that time too, but mostly it's just been us.  The view isn't as far-reaching, but I'm still just trying to help Anne-Marie during this time that's out of our control.

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