Sunday, December 13, 2020

Notes on the 15th Surgery

On Wednesday, December 2, 2020, Surgery 15 was first call.  The front door of the hospital wasn't even unlocked.  We went to the back entrance of PeaceHealth Southwest and checked in at 5:15 AM as the first patients of the day were slinking in.

Check-ins for surgery work a lot like those for international flights.  The watchword is always to be early so you can wait around for a very long time.  And we did, but for the first time, we were fully masked up and alone in the waiting room.  Pandemic protocols limited visitors to just me.  Just me and the wheelchair, of course.

Wheelchairs* at surgery work like international flights as well.  They tag them with your name and allow them to follow close by wherever you travel.  The patient can consider it their own version of baggage.  It followed closer to Anne-Marie than even I did that day.


A few weeks back, Dr. Solti has let us know that the conventional chemo Anne-Marie was currently on would, at best, be 20% effective on the cancer we are now fighting.  She was adamant that we need to gain access to the brain and spine to make more progress.  That's where surgery 15 comes in.

When they tell you they need to "gain access" to the cerebrospinal fluid, they really mean they're going to drill a hole in your skull.  Officially it's called an Ommaya reservoir.  The neurosurgeon takes what amounts to a dome-shaped port, places it under the skin and connects it to the appropriate brain ventricle. This allows chemotherapy and hormonal therapy to get past the blood-brain barrier to kill the tumors in the brain and spine.  The entire process takes 60 minutes. 

Anne-Marie was out of recovery by 10 AM and neurosurgeon Dr. Modha came in to visit us early in the afternoon and let us know that we would be a very unique case of same-day brain surgery. Anne-Marie slept off and on for a few hours in the temporary room and we were home by four.


The surgery was as straightforward as could be expected; the recovery has been anything but.  We've found in the last week and a half since the surgery things have not improved.  The radiation treatments from three weeks ago did relieve some of the pain, but Anne-Marie's mobility only decreased in the days following.  

Treatments fed directly to the brain and spine started the day after surgery.  They've been very short to administer and haven't resulted in many side effects, but--after three treatments--they also haven't helped with Anne-Marie's mobility.  

As of this week, she can no longer walk any distance without the assistance of a walker.  She's fallen several times since last Monday.  It's been frustrating every time and frightening many times.  

These last six weeks have changed our lives in so many ways.  I've become an expert in accessible living and Anne-Marie's become practiced in her upper body strength.  Now our prayer is to figure out how to survive this nightmare.

Chemo days through the end of the month are Monday and Thursday.  Thursdays only starting in January.

*You may have heard that Anne-Marie's much-loved Breezy Ultra 4 wheelchair was broken at the hospital.  (Also holding true with the airline analogy.)  This is true, but our guys at Northwest Health and Safety got us all fixed up.  Thanks, guys, for getting it figured out so quickly.

1 comment:

  1. Love your family. Prayers for you and the children. ❤️❤️❤️