December 15, 2015: It can get worse? Apparently, yes.

It can get worse? Apparently, yes.

Journal entry by Felicia Friesema

 

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Sometimes I think I’m the one with profound memory loss.  Or maybe that’s what hope is.  Because each day I’m surprised when he gets worse.  Each day it hurts more and more.

That huge to-do list from yesterday was largely chucked out the window when we got an urgent call from Steve’s new radiation oncologist.  She was available for a 3PM appointment that day and no other.  And she was going on vacation for three weeks starting this Friday.

It boggles the mind when you think he just had two brain surgeries just a couple of days ago.  He’s supposed to be resting and mending. And he’s exhausted. But they’re also rushing us around from appointment to appointment because they look at the preliminary pathology reports and then spring into action.  The drive to UCLA is brutal on him.  And we’ll be going back again today and again tomorrow.

But what really made me weep was the radiation schedule — everyday at UCLA for six weeks.  The original plan of doing it locally was scrapped.  If we did it locally it would be out of the UCLA network and we’d have to kiss our doctors goodbye.  There were no local partnerships or connections that would work.  The closest one was Northridge.  Which is about the same kind of drive.

Quick note: I’m going to plead with you here —  If you know Steve’s mother, please do NOT share any of this with her.  We need to be the ones to tell her this news.  Be there for her, but don’t read her these posts.  You are not doing her any favors by doing so.  We’re not trying to hide things from her.  But this isn’t the kind of stuff you talk to her about over the phone, and we haven’t been able to go see her yet. She needs reassurance and support right there in the room with her.

Because the appointment was at 3PM, our drive home was about two hours.  Steve was lucid, but not quite verbal.  He tries so hard to speak and express himself.  It’s just not working very well and it’s getting harder to help him interpret because the patterns are starting to dissolve.  We tried to make a sort of game out of it at first, but now it just drains us both.  Access the bottle = Put on the seatbelt.  Change the elevation = I’m cold.  It’s participatory = Stop talking.

Radiation will be brutal.  It will make the tumor swell into an angry, retaliatory beast and he will falter even more.  It will take his beautiful silver hair.  And it will make his symptoms worse.  He will be even more fatigued that he is now.

And we haven’t even discussed chemo yet.

We came home exhausted.  Do I need to find a new word for that?  Exhausted, depleted, drained, defeated, damaged, desperate.

We also came home to a full fridge thanks to Linda and Diep.  Linda, it took everything in my power to not drown myself in the bottle of liqueur you left for me.  Steve and I did enjoy a nice sip o’ gatorade though.

I keep thinking the day is done when we go to bed.  But really it’s the hardest part that is just beginning.  Steve still can’t remember to wake me to help him go to the bathroom.  And he gets up maybe two or three times.  On the third time tonight he was halfway to the bathroom without his walker before I woke up.  My heart skipped, a sprang over to him, I took his arm, and he immediately tried to shake me off.  It’s the first time he’s ever resisted me that way.  After some confusion and yelling on his part we finally got the job done and I got him back in bed.

Up until that moment, I’ve felt pretty confident that I could handle taking care of Steve.  Sure I’d get help eventually.  But we just needed to “find our new normal.”  See, that’s where that pesky hope thing gums up the works a bit.  Because I need help now.  Because there will never be a new normal.  Every day is different.  Every day is worse.

I realized for the first time that I can’t do this.  And what’s worse I became afraid that it meant he wouldn’t be able to be cared for at home.  Steve hasn’t voiced many wishes to me except one — that he be allowed to stay at home, no matter what.  I looked around our bedroom and saw nothing but sharp edges, tripping hazards, and a wife too tired to even take a shower.

It’s hard to plead with someone who doesn’t know who you are.  He’s starting to lose his receiving comprehension too so not everything I say to him makes sense anymore.  But I pleaded.  I begged.  Honey, I can’t do this anymore.  You have to remember.  You have to.  Just wake me and I’ll help you.  You can’t walk without me or your walker.  You will fall and I’m not strong enough to pick you back up.  And if you hit your head you could die.  Honey, please.  If you don’t remember I can’t take care of you.  I want to take care of you.

“It’s participatory.”

Commence a whole new and undiscovered low.  Defeated?  I was vanquished.  Utterly decimated.  He didn’t know who I was.  He couldn’t understand me.  And what’s worse, he was angry at me for talking too much.  Throughout this ordeal he has been nothing but sweet and gentle.  He’s been helpful and strong and understanding.  But that only happens if he remembers who we are, if he has a reason to understand why I’m pleading with him.

And radiation will make this worse?

Did you know a heart could break this many times?  I have been so naive.

Something in him came to the surface for a moment while I was trying to pick up the pieces of my composure and he reached for my hand and squeezed.

The calls to hospice, etc. were delayed yesterday because of the last minute rush to UCLA.  He has another appointment today so I’ll be making those calls first thing this morning.

God, please.  I get it.  I’m not a prayer person.  I’m pretty much a secular heathen.  But this isn’t about me.  He’s a good man.  A GOOD MAN.  With a beautiful mind and a beautiful heart.  He is my favorite human being in the whole world. Help him.  Help him, please.

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