No more plans

Remember that plan we had ten minutes ago…. well, about that.

Sunday I learned that Rich had not forgotten my birthday in the hailstorm of all he’s dealing with.  He planned, and with the help of some amazing people, managed to surprise me with a beautifully catered meal served on china, linens and crystals.  He had a card for me an a beautiful gift.

I was overwhelmed.  It was lovely.  And for right now that’s all I can say about that.

I went in to see him Monday morning bright and early.  He was tired, but rightfully still glowing from yesterday’s accomplishments.  I shaved him.  He took a break to rest up for a bath.  He slept for quite some time.  I sat comfortably in my chair and watched him, thinking and feeling more than I can offer here.

We had a nice quiet visit with two of our best friends.  Gradually he became out of breath, and we both dismissed it to the swelling, the talking, and he just needed to get rest some more.

Later in the day his struggle took a sharp turn, we called the nurse.  She did a bucket full of nursing in 45 minutes; called in another nurse to double check, called the doctor; and gradually Rich returned to a comfort level that prepared him for a good night’s sleep.  I went home.  It’s been a tough weekend and after that fluke of a five hour nap I’ve gone back to a maximum of 3 hours a day of snooze time.

I sat on my couch with a cup of tea and a book in hopes of winding down and getting some sleep. The book wasn’t going to work because I’ve got three cats crawling all over me, purring louder than my thoughts.  Purrs that translate in English  “Where is HE?  Where is HE?  Where is HE?”

 Maybe a hot shower, maybe a glass of wine with my own best friend….  My cell phone rings as I’m heading to the shower.  I have to come back to the hospital.   The breathing problem returned only worse.  It’s time.  Come now.

Sadly, I did not count the number of times I said “fuck” from hanging up my phone to hitting the square silver button to gain access to the magical glowing hallway that sucks me down the lovely wood floor to the end of the second hallway to his room.  

Fast forward, because really, that’s what it felt like.  People in the room,  discussions, nurses on phones, his brother trying to bring me up to speed and as I finally enter his room I see he’s on a re-breather mask, connected to a pulse ox and the furniture has been moved.  Oddly, it was the moved furniture that gave me full perspective--he’s going somewhere.  Soon.  And probably quickly.

But first, a word from the sponsors.  Yes, another chest x-ray.  He’s gotten one daily for I have no idea how many days, but today’s a bonus and we’re going to do another one.

My head is spinning because “we” talked to Rich, and then we talked to the doctors, and then we turned everything over to THE Palliative Care Doctor.  But when I query all of the other medical experts in control, the question of “what does Dr Petrus say bout this?’  is met with,  well,  Hmmm.  Fucking nothing.  I can’t even find out if the palliative care doctor knows what’s going on.  

I’m trying to focus on Rich, I’m trying to assess the insanity around me, I’m trying to get information.    My whole life I’ve had a near phobia of drowning.  Not so much anymore.  

My first clear, insane thought was “did I call Pyett?”  Even now I can’t remember at what point I made that call.  Was it on the way back to the hospital?  Was it in the hallway outside Rich’s room?   Not sure.  But not long after I got there,  he and Mike Lewis were there.  Rich’s two best friends from high school.  Suddenly I felt safe.    Two people who had the picture but hadn’t drank the Kool-aid.  More importantly Pyett had once saved my butt from an almost assault charge so now I’ve got the both of them.  Yee-hah.  No matter how this rolls, I won’t go to jail and all these people will end their shifts without experiencing physical harm.

For two hours I listened to a scary level of plans, confusions, changes of plans, starts, stops, if-then statements to beat the band.  

At some point Dr Peiffer was there.  I was startled because 1) PCPs don’t go to the hospital (except for that special visit on Saturday for Rich)  and 2)  she was in scrubs with her official white coat over it just like residency days, and it was nothing like a quiet Sat afternoon visiting a friend.  She was fully present, professional  and  ready to enter the fight.  I’m thinking I need to give Pyett and Lewis a heads up that there might be two collars they have to grab back from misdemeanor assault.    Before I can do that Lynn appears.  

Minute by minute this tiny microcosm spins out of control.  I’m picking up on things, but I’m too sleep deprived to trust my Spidey Senses.  I catch random glimpses of the people I trust.  Each of them seems calm, like they know their lines and they’re just waiting for their cue.  

There are too many people and shit is happening too fast and none of it is what we had planned this morning.  None of this sounds like palliative care.  I cannot get anyone to tell me who’s in charge here and why isn’t Dr Petrus writing these orders??

On the periphery I catch Dr Peiffer every now and then.  She’s talking to people with her big white, shiny  grin, but I know when that grin is not “happiness to see you.”  Before I can process that she might be going way too far out on a limb for a hopeless cause, there’s another Doctor of Something telling me what is JUST ABOUT TO HAPPEN, and do I have any questions.   Spinning, spinning, spinning and not burning a gawd-blamned calorie!

So much happened in that small space until I was walking down hallways behind Rich’s bed with the staff navigating our way to MICU.  Confession:  other than Lynn and Dr Peiffer, I can’t remember who was really there and who I just imagined was there.   More time and more words and a blur of faces until finally I am curling up into a hard chair beside Rich’s bed trying to hold his hand without dislocating my shoulder against the side rail of his bed.  The last time I looked at the clock it was 02:30.  AM.

Next I looked at the clock it was 05:15.  AM.  Multi-colored monitors glowing and beeping, two IV pumps pumping away and a bi-PAP mask on his face forcing air into his lungs through a big tube with lots of noise.   

Ground Control to Major Tom……

When I took this mission as his wing man I was sort of hoping we were going to keep it within the Earth’s atmosphere.

He wakes up.  He can’t talk because of the mask.  One labored word at a time he tells me “I…didn’t….think…make…..it…..through……the……night.”  I tell him, “neither did they.”

At some point shortly, Dr Petrus appears, and he looks pissed. His expression makes feel a bit hopeful.  I don’t know the man, but I’ve had almost three hours of sleep so my Spidey Senses are tingling.  He flat out tells Rich what’s what, explains why where he is at now is not in his best interest, offers a plan and Rich nods agreement.  I try to keep myself from gushing gratitude.    Short time later the nurse lets me know that orders are written and I need to call everyone I want to be at bedside because our window of opportunity is small.   Once the orders are executed he may go quickly, but comfortably.  They’re not sure if there’s an available bed at hospice, and they don’t think he’ll survive the transport.  I’m all about letting Rich believe he’s coming home like he wants.

Part of that palliative care Plan was to take Rich off the bi-pap that was forcing air into his lungs sufficiently, and putting him back on a re-breather mask that was less sufficient but more comfortable and would allow him to communicate during his remaining time.  So guess what happened….

Once Rich could talk, his breathing got easier.  People stepped in softly, prepared for his last moments.  Rich being Rich, he took center stage and held court and kept the room laughing.    All of these wonderful people know how to let Rich be Rich.  It seemed a well-choreographed musical--the only music being the background noise of the MICU.  It flowed so beautifully that I felt comfortable enough that I could slip away to the restroom down the hall and puke my guts up.    There was only one unwelcome interloper, but the whole incident was shielded from Rich and it will require it’s own special blog post.  There were a few unexpected visitors but that will also require it’s own full blog post.

Fast forward--hospice had a room, doctors felt Rich was safe to transport.  I had a two hour window to go home, shower, throw a bag together, livery the pets and meet him at hospice.

I managed to accomplish all I needed to do during my break and I hit the road, feeling peaceful, strong and refreshed.  Until about fifteen minutes of driving when I suddenly realize I’m heading towards the hospital.  Totally wrong direction.  At the point I’m at, I don’t know how to “get there from here.”  So I have to turn around go back home and start from that position.  I’ve got a clear map so I’m not panicking.  I didn’t panic getting stuck behind a school bus.  I didn’t panic at each long red light.  I did not even panic when a fender-bender caused a 15 minute delay.  

I didn’t panic until I turned off the road I’m familiar with onto a road that I’m not familiar with and realize that my cataracts are so bad I can’t read any of the road signs.  I’m struggling so hard with my vision that I don’t answer the first two incoming calls.  I answer the third call because I accept that I’m lost and my two daughters-in-law navigate me in.   Bah-jezzus.H.Kryste.  No wonder Rich is afraid to leave me.

I make it, butterflies in my stomach as I step out of my car and prepare to enter a whole new world.