Nana’s Notes:

PEG procedure went well.  Papa very agitated when back in the room, complaining about it taking a long time and them not knowing his name, etc.  

He got some rest & was then in a good mood.

He was given meds through the tube & will start nourishment through it tomorrow.

 

My Reflections:

I’m with Nana & Papa at the hospital.  Papa gets the rest of the dressing removed from his incision where they went in to remove his tumor.  A visible and sobering reminder of just how invasive his surgery was.

He also gets a feeding tube inserted into his stomach.  This wasn’t the ideal plan, but it goes without saying that not much is “ideal” concerning Papa’s condition these days.  We are glad to see Papa’s doctors working hard to collaborate and choose what’s best for Papa’s health, and we’re glad that we’re not the ones having to make the tough calls.  We don’t envy the position these doctors are in.

One of Papa’s doctors informs us of the results of the pathology report (which have finally come in!).  Papa’s brain tumor was an anaplastic astrocytoma.  Not the worst type of brain cancer, but not the best either.  And then this same doctor starts talking about spindle cells and other jargon I don’t understand; how further testing is still being done to figure out what type of treatment will be best.

Ana-plastic?

Astro-cy-toma?

We have the doctor repeat that so we can know just how to say it.  And I make an image in my mind so I can remember it, because I’m visual and that’s what I do.  Yes, within moments I’ve got cartoon images helping me remember something as awful and scary as brain cancer.  Wish I had actual pictures to show you, but you’re just going to have to work with me and my imagination.  Without further adieu, meet….

Ana Plastic:  She’s little, pink & plastic (of course); a waitress with a pasted-on smile carrying a tray of food in one hand (not sure why, but she is).

And,

Astro Cy:  He’s an outer space hero, flying in space, hands outstretched, wearing a space helmet, cape and the usual hero garb.

(Call me crazy, but I’ve never forgotten how to say “Anaplastic Astrocytoma” since!)

Name pictures aside, Papa is still very weak, but improved ever so slightly from when I saw him last.  In a lot of ways, he’s reminding me of my grandma, his mom, in her late years when she was severely suffering from dementia: cantankerous, uncooperative, and so very old.  Yet I still haven’t let go of my image of pre-cancer Papa, my dad who was so capable, independent, and sharp-minded.  I’m having a hard time coming to grips with the glaring contrast of his current state.

For instance, lately, for some reason, when Papa has the urge to “go” [urinate], it is URGENT, as in “I need to go right NOW!!!”  He gets very agitated, especially if the nurses aren’t responding right away.  At one point today, that’s the case.  I’m sitting there next to Papa and he, right-in-front-of-me, whips aside his gown, bearing his birthday suit, and grabs for his urinal, all agitated.  And I’m a bit mortified, and I want to say “DA-aD!” in an embarrassed, shocked, “WHAT are you doing?!” sort of way.  But I don’t, and thankfully, the nurses walk in and I quickly remove myself behind the curtain surrounding his bed.

I’m shaken.

And part of me feels bad for not being able to shove my daughter role aside and take up a helpful nurse role when needed, but I am NOT ready for THIS!   I know Papa right now, right here, isn’t thinking about proper decorum and perhaps I shouldn’t care either, but I do.  I care because I want to maintain Papa’s dignity, I want to maintain my image of him, not as an invalid patient, but as my father.  And I stand there behind that curtain wondering if and when it will get to the point where I have no choice but to be the one to step in, to help Papa with his “business:” diaper changes and urinals, and other such things that I never envisioned being faced with.

At least not yet.

And I remember Nana doing this for her father:  I’m 13 and Grandpa’s living out his final days on hospice in our home.  And Nana’s attending to him and helping change his diapers when needed.  Will it soon come to this for me as well?  When I still have a baby needing diaper changes of his own?

A baby and a father both needing diaper changes?

Simultaneously?

It’s not supposed to work like this, is it?  I’m supposed to be older and more mature to deal with something like THIS…..  

Right?

The nurses finish and draw back the curtain and I swallow hard and try to compose myself and just be present and not think too much.

Gah!  THIS IS HARD.

 

Email: (update from me to family & friends)

Hi all,

I want to let you know how things are going, but, quite frankly, feel like it’s so complicated with all the factors involved that it won’t make any sense to explain it – or will be just too plain involved.

Somehow in trying to wrap my brain around all that’s been going on this week, one of my dad’s stories he used to tell when I was a kid keeps coming to mind (perhaps this was spurred on by Papa’s nephew’s reminder of my dad’s story-telling).  Perhaps in telling the story, the explanation of my dad’s current condition will somehow make a bit more sense.

The American Folk Tale my dad used to tell (crazy that I was able to find this online… ahh, the wonderful resource of the web!):

It was my friend Joe’s birthday just last week. [All – meaning response by audience] “Oh that’s good!” Not really, you see everyone forgot. [All] “Oh that’s bad.” Not so bad, everyone felt guilty and they decided to throw him a party. [All] “Oh that’s good”. Not really you see, the party was supposed to be in New York, Joe was in California. [All] “Oh that’s bad”. Not so bad, luckily a friend insisted to fly Joe to the party. [All] “Oh that’s good!” Not really you see, the airplane ran out of gas halfway there.[All] “Oh that’s bad.” Not so bad, there were two parachutes on the plane. [All] “Oh that’s good.” Not really, you see, Joe’s parachute didn’t open. [All] “Oh that’s bad.” Not so bad, there was a haystack right underneath him. [All] “Oh that’s good.” Not really you see, the biggest pitchfork you’d ever see was sticking out of the haystack. [All] “Oh that’s bad.” Not so bad, he missed the pitchfork. [All] “Oh that’s good.” Not really you see, he also missed the haystack.[All] “Oh that’s bad.” No, that’s good because that’s the end of my silly story. [All] “Oh that’s good.”

http://dotsub.com/view/4b6a78bd-dbd6-42ba-ab37-2a66a9872b52

So I feel that this week we’ve been dealing with a lot of “Oh, that’s good,…. No, that’s bad” moments.  There are a lot of factors surrounding his treatment, not only is he recovering from brain surgery, but he’s also dealing with swallowing issues, and has his pre-existing heart condition.  So what seems to us as simple, straight-forward solutions to my dad’s current health issues, are anything but simple.  

For instance:

– Since dad isn’t drinking more than a few sips of his thickened liquids a day (tastes horrible, he just wants regular water), we say, “let’s just start him on IV fluids to keep him hydrated” (“Oh, that’s good.”)  But then we are told IV fluids can lead to fluid overload and be too much for his heart due to his congestive heart failure (“Oh, that’s bad”)

– Since dad isn’t eating or drinking much and seems to be getting weaker & weaker by the day, let’s just encourage/coerce him to eat & drink more (“Oh, that’s good.”)  But then we find out he can aspirate (due to his weak throat muscles) whenever he’s eating or drinking anything, regardless of thickening agents, etc. (“Oh, that’s bad).

– So let’ just get a feeding tube in him so he can get nourished & hydrated (good, right?).  But the ordeal of putting in/having a nasal feeding tube can make him more uncomfortable/miserable & rehab won’t accept him if he has it (oh, bad).

– So just get a gastric feeding tube instead (good?).  But to do that requires a procedure to put him under and it could lead to other complications such as infections, etc. (oh, not so good).

That’s just a glimpse of the “Oh, good,” “No, bad” issues we’re dealing with.

This week, Dad has been pretty weak and discouraged and fed up with suffering.  I’m sure a lot of this has to do with not only brain surgery & his lack of communication skills, but also the lack of food and hydration.  The doctors were hoping to see an improvement in his swallowing (weak swallowing is common after this sort of surgery and usually improves within a few days) and were thus trying to avoid having to put him through more discomfort & risks with feeding tubes & IVs.  Dad did eat fairly well yesterday (nutrition up – Good!…. but also aspirating risk up – Bad!), but the doctors still felt it necessary to put him on IV fluids and put a gastric tube in this morning.  The goal here is to get his strength up so he can recover properly and be able to begin rehab, then radiation & chemo treatments.  Everything is a balance and nothing is risk-free at this point, so the doctors, with Mom & Dad’s approval of course, must decide which treatments are worth the risk to get my dad on the road to recovery.  So for the time being, this is the course of action taking place and we appreciate your prayers that God will balance all these factors far better than we or any doctors can.  

I saw Dad today and he’s the best I’ve seen him all week.  A bit more alert & energetic and his speech a tiny bit more understandable.  He can use his right arm a little better too.  He still slept for a good part of the day and continues to be quite uncomfortable at times, but overall, there seems to be some marked improvement for the first time since surgery.  If things go as expected, they hope to transfer him from the hospital to rehab early next week.

Will keep you posted.

-Kari