My Reflections:

Papa is supposed to be transferred from the hospital to a rehab facility today.  From what we saw of Papa yesterday though, J & I can’t imagine that will be possible (no way he’ll be in good enough shape for that!).

Thankfully we’re wrong though.  I visit with Papa & Nana in the morning and Papa’s doing slightly better.  We get updates from doctors and nurses on Papa’s condition and then we’re all pleasantly surprised (and I dare say shocked) to hear that the transport is actually happening!  Papa seems to rally with the news.  By the time I head home, final preparations are being made for Papa’s discharge.  Absolutely… AMAZING.  Such encouraging news.  And we’re all certainly grateful for some encouraging news.

I say my goodbyes and head out those hospital doors:

One.

Last.

Time.

And the load I carry out feels much lighter than the load I’ve walked in with this day and all the days before.

Things are certainly moving forward in a good direction!

 

Text: (from me to a friend)

Papa in much better spirits today – heads to rehab tonight.  Whoo-hoo!  Feeling encouraged!

 

Email: (from Nana to friends & family)

Hi,

I was apologizing for my neglect in keeping in touch and my technological incompetence when I lost the email I was typing. Anyway, Papa has been very discouraged the past several days, thinking he would never get better and just wanting to forget the whole thing and go to heaven. His feeding tube was finally placed in and after some initial problems is working fine and helping him to improve.  Today he is doing much better, especially since he heard we should be going to rehab today.  We are waiting for the official word.  Please pray for his encouragement and will to work hard at getting all his faculties back.

Thanks for your love, concern and prayers.

Love,   Nana

PS  There was a delay in getting this sent, and we just heard we are scheduled to leave here this evening.  YEAH!!!  The hospital will transport him.

 

Nana’s Notes:

Bad [last] night & morning.

Discharged – perked up when heard that!

Left in the evening.

I planned to go to rehab, Papa said “Why? – go home.”  

So I did – slept well.

 

Text: (from me to a friend)

Thanks.  Not seeing much improvement… But a little.  Supposed to go to rehab tomorrow, but I’m doubtful he’s strong enough for that yet.  He says he’s just ready to go to heaven.  We’re not ready for that yet!

…..[Haven’t gotten] the complete [pathology] report yet, they sent it to Johns Hopkins to find out the type of spindle cells to determine specific treatment.  They did tell us it’s Anaplastic astrocytoma, stage 3 or 4 [we’d later learn brain cancer doesn’t have stages, but rather grades, with Papa’s being grade 3].  Not the worst type of brain cancer, but not the best.  Reading up on it didn’t offer much encouragement.  Just tough to see him suffer presently & then have future diagnosis not so great either.  Trying to be grateful for the “now” with him… It’s just tough… You know how it goes.

 

My Reflections:

J & I take the boys to visit Papa & Nana in the hospital.  Nana watches Little M in the lobby while the big boys come along with J & me to Papa’s room.

I forget the contrast in Papa since the last time J saw him right after surgery.  Papa isn’t doing well today, and the boys look on, a bit wide-eyed, as Papa moans and groans uncomfortably, desperately calling out, “Oh my God!, Oh my God!”  This isn’t a phrase Papa normally says, and not one we use in our house either.  The boys know this and are most likely shocked to hear Papa throw around God’s name like this.  I don’t believe Papa’s throwing around God’s name casually though,  but more likely crying out to Him in his current state of misery.  It’s been rough for me to see Papa so miserable, but today is especially hard and J and I regret bringing the boys along – they shouldn’t have to see their Papa like this.

J and the boys soon join Nana & Little M in the lobby while I stay a bit longer with Papa.  While I’m still there, neighbors of Nana & Papa’s come to visit….  while Papa is still moaning and groaning in his bed.  This is the first time I’ve ever met this sweet, reserved couple.  And they’ve been so nice to stop by to see Papa.  We sit there by Papa’s bed and exchange pleasantries, but the scene is altogether awkward, to say the least.  Papa would usually be the one making the introductions, asking the questions, and helping us strangers feel more at ease, but he’s obviously in no frame of mind for that today.  So there we sit, with long pauses between the small talk (of I-have-no-clue-about-what), kind of just looking at one another uncomfortably as Papa continues to call out “Oh my God!, Oh my God!”

So it is with more than a bit of welcome relief, when Nana returns to the room and I can say my goodbyes.  And J, the boys, and I are soon on our way back home (HOME!) once again.

As soon as we pull up in front of our house, I tell J I need to trim some bushes.  He doesn’t argue.  Perhaps he gets it.  I need to chop at something.  Do SOMETHING.  My sights are set on some hedges that have grown quite tall under our front window.  And I set to work.

An hour or two later my “trimming” is complete.

Right down to the ground:

Chop I did,

and I can’t deny that

It

Felt

Good.

Never did like those darn bushes anyway.

 

 

 

Nana’s Notes:

Pain last night sometimes, restless night.

Doctor came in and said he’d order pain meds and told Papa to eat so he’d be ready for rehab in a couple days.

Papa fell asleep hard after pain meds given.

Another doctor came in to say to eat so Papa would be ready for rehab.

Doctor #3 checked feeding tube and said it is fine to start using it.  She helped with inserting it yesterday & said all went well, no issues.  Said it is fine from their standpoint for Papa to eat by mouth if he can tolerate it.

Friends came to visit.  Papa opened eyes and acknowledged them, but asleep/out-of-it most of the time.

X-ray suggested by one doctor to determine pain Papa is experiencing with the tube, but later the doctors who inserted the tube said that everything looks fine and X-ray will do no good at this point; some pain is normal, just keep up with pain meds.  If pain continues and is beyond mild & treatable, then X ray will be reconsidered.

 

Text: (from me to an aunt)

… my dad is hanging in there.  Had a feeding tube put in his stomach yesterday.  Causing him some pain, but hoping he’ll finally get the nutrition he needs to recover; really hasn’t eaten or drank much all week.  Slept most of today, speech hasn’t improved much.  But tomorrow is a new day, right?

 

My Reflections:

J has a mountain bike race and I plan to stay home with the boys.  But then I get the bright idea of surprising J at his race, with all three boys in tow, to the race venue that’s over an hour away.  With being gone from home so much lately, J’s been a saint in picking up the slack.  So what better way to show him my support then to surprise him as we’re all there cheering him on at his race?

J had told me his race would last about 2 1/2 hours.  So I decide to show up about an hour after it starts so the wait won’t be so long for the boys.  Once there, we settle ourselves on our picnic blanket with our lunch and soon see J rounding a corner on his bike.  We wave and cheer and holler and he’s so surprised to see us that he stops, mid-pedal stroke.

“What are you doing?!, Keep going!” I encourage him, and he does, his big smile indicating he’s glad we’ve come.

And after our 20 second encounter I settle back in with my brood to wait it out till we’ll see J again on the last lap of his race.  But the boys soon get antsy with the waiting… there’s a moon bounce beckoning to be jumped in, and somehow everyone gets hungry again, and Little M decides that he doesn’t like drinking his milk out of a bottle.

And we all get hot.

And tired.

After a while, we finally make our way to the finish line, because surely J will be finishing up any second now….

any minute…

any……..

We wait and we wait and soon I begin to wonder:

Did we miss him?  Is he okay?….. Should I be worried?  

And the boys get cranky with the wait and I appease them with letting them play on my phone till the battery’s nearly dead.  And J still doesn’t come.  And he’s 4 hours into his race.  And I have no idea where he is.

And when we’ve all reached the final limits of our patience, when I can’t possibly say “just 5 more minutes” one more time, I make the executive call to pack it up and go home.  There’s a mass of cars in a field and I can’t see J’s anywhere and my phone is now dead so there’s no use trying to call him.  So much for us all being there to excitedly cheer J on at the finish line; and then be there afterwards to congratulate him and have more than our mere 20 second encounter.  All this way, all this effort, all this to give J a boost and show him our love and support and it feels like a total flop.  A complete….

DISASTER.

And with my brood dejectedly loaded in the car, I drive through the field, making my way towards the exit, big boys in the back asking,

“But what about Daddy?”

“Where’s daddy?”

And all I can say is, “I don’t know.”

And then I spot it, on the far side of the field on the outskirt of the mass of parked cars: J’s team tent.  And we park and get out, and there J is, sprawled out in a folding chair, completely exhausted from his 4+ hour race and oblivious to what we’ve just endured trying to surprise him.  He’s hanging with his buddies and I’m ticked and blinking back hot tears, and trying not to show it, trying to save face in front of J’s friends.  And by this time Little M is screaming from his carseat, wanting to eat, NOW, my pumped bottle being rejected hours earlier.  And I’m afraid I’m going to start sobbing, right then and there, surrounded by all these spandex-clad mountain bikers . Oh what a classy scene that would be.

I just want to disappear.

NOW.

Nobody’s to blame.  Just a classic case of good intentions gone awry, but with no lasting damage done.  Just some added pieces of straw on this camel’s already overloaded back and I’m afraid this not-really-such-a-big-deal moment might just break me.

But J’s been found.  The boys don’t leave without getting a chance to see their daddy.  J appreciates the effort we’ve made to come support him.  Little M gets fed and gets happy.  And we all leave together as a family and stop for a treat on the way home too.

It’s not the worst day ever.  Just a little rough in the moment(s).

And when it’s all said and done, tomorrow is, after all, a new day….

Right?

 

(quote and composition by Mark)

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

Nana’s Notes:

One of the doctors started an IV drip for hydration.

Doctor talked about the importance of him eating & drinking or he’d have to have a tube inserted.  

Papa ate a good breakfast & drank some thickened water – he needs to keep drinking that throughout the day with my encouragement.  I pray I will be consistent with that.  He got really tired eating breakfast – had a hard time finishing the applesauce.  He rested with his eyes closed between bites.  No coughing during eating but cough and phlegm couple times after.

Another doctor explained all about the PEG tube [stomach feeding tube] and said the neurologist wants it put in for extra strength and nutrition.

[Yet] another doctor, an assistant of the neurologist, said the protein level in Papa’s blood is high.  Dilanton (the anti-seizure med) needs to be lowered because too much would be floating around in Papa’s system doing him no good – that could be contributing to his tiredness.

PT & OT here – Papa sleeping, but let them get him up & work with him.  Very tired!  Slept in chair.

Ate good lunch – tired, slow.  Choked a little with Magic Cup (pudding/ice cream type of dessert).

Anesthetist came by to introduce himself & talk to us – said he’d pray for Papa; obviously a Christian.

Friends came to visit.  Papa had been sleeping, but woke up & was alert & “talkative” while they were here.

Later seemed to be sound asleep when neurologist came in to talk about initial pathology report and likely treatment, as well as treatment risks (hair loss, nausea, tiredness, swelling, alteration of white blood count & bone marrow).  Papa would need to be monitored closely [during treatment], blood checked regularly, and CT scans done about every two months to check results.  With treatment, tumor likely to return in 3-5 years.  Still waiting on further testing of biopsy to make final call on what treatment will be best.

PEG tube to be inserted tomorrow.  Transfer to rehab in a few days.

 

My Reflections:

I spend the day at home with my boys.  I try to make up for lost time and determine to check off something from our “Summer Fun List.”  So we do a nature hunt in the yard.  And while the boys aren’t initially thrilled with the idea, they’re much more willing to oblige when I entice them with using my phone to take photos of our discoveries (because taking photos with a phone is super-cool).  The plan is to get our photos printed and posted in their nature journals, but this will never happen in reality.  Regardless,  we enjoy the “thrill” of the hunt today.

We find green leaves,

 

And a gray rock,

And flowers, a spider, and little green shoots.

And other “naturey” stuff.

We check off each item from our list.  And I just enjoy the time together; doing this not-much-of-anything except spending some time together.  In the midst of taking photos of our nature finds, I pause to notice our shadows, together, and I snap a photo of that too.  My favorite one of all our nature picts:

At some point I get a text from a friend with a welcome surprise:

Hi, Kari, I have a meal I’d like to stop over this evening.  I can bring it hot for tonight or cold if you’d rather have it another night.  Just let me know which and what time is good.  Praying for you all.

So my friend and her kids stop by with the gift of food.  And they stay for a bit to just talk and hold Little M and entertain my big boys.

And I appreciate this slow, un-rushed, no-agenda type of day.  Funny how such a huge upheaval in our lives can help me slow down and savor the little moments.  Moments like these with my boys, and with a thoughtful friend who’s willing to show up even when there are no easy words to say.

I later receive an email from another good friend, a friend who’s been so sweet to check in even while she’s enjoying time away with her family on vacation.  Her email fills me in on some funny stories of her family’s recent adventures.  Reading her anecdotes brings with it another gift of today, the much needed gift of laughter.  I write back to let her know:

Email: (response from me to this friend)

LOL – and I mean it.  That acronym is used way too often and most likely by way too many people who are actually not laughing out loud.  But I can use it here with validity because you truly got me to laugh out loud at my computer screen, with only me, myself, & I to hear it.  Made me realize that I haven’t laughed (for real) in a while.  Felt & sounded a little foreign at first, but I could feel a bit of that pit-of-my-stomach, don’t-quite-realize-it’s-there stress lift for a moment.  Felt good, and then somehow eroded my hold-yourself-together facade, and now I’m crying as I write this.  Crazy how allowing oneself to authentically feel joy, can then allow oneself (okay, myself) to feel sorrow.  Just this evening I found myself repeating a couple of [your daughter’s] sayings to myself – saying “it’s okay,” “you’re okay” to myself as I loaded the dishwasher and my brain whirled with stuff regarding my dad.  Really does feel like I’m straddling two realities of home & our family unit, and hospital & my parents, yet somehow neither feel “real” at the moment.  Find myself jumping anytime the phone rings, catch myself biting my inner lip, and wondering why my jaw aches (clenching my teeth at night?)… just a “wee” bit tightly wound these days I guess.

All that to say, your email was the highlight of my evening & the best entertainment of the day.  Truly did lift my spirits (even if I did end up crying, but that was probably a good thing too).  Picturing [your daughter] hurling deer bones over the balcony as well as the boys collecting them in the first place (and you taking this all “in stride”), also brought a smile to my face; as well as the vision of curious neighbors rubber-necking in their kayaks to witness the latest of your family’s escapades.

Keep me posted, I’ll keep you posted….

-Kari

 

My Reflections:

Later in the day, I receive an email from a cousin, one of Papa’s nephews, to pass along to Papa.  And I’m reminded of Papa’s many readings from that same James Whitcomb Riley poetry book my cousin speaks of in his email.  And I too can still hear the spot-on inflection in Papa’s voice as he read those memorable and entertaining stories.  Glad to know others have such fond memories of the same.

Nana reads the email to Papa after I’ve left for the day.

 

Email: (from Papa’s nephew)

Hi Uncle,

I wish you a speedy and full recovery; my wife and I are thinking about you and Nana. I mentioned to [our daughter] that my uncle was in the hospital, and she asked if she’d met you. I told her yes, but it’s been a couple years. I reminded her that you and Nana stopped here for the night to refresh the horses on one of your whirlwind summer cross-country drives, and we enjoyed seeing you and catching up, if only briefly, during that visit.  [My daughter] requested, “Tell me more about him.” So I told her stories about you from long ago, and I thought I’d send you my version of these memories from my childhood…

 I remember you as a storyteller, gathering us kids, perhaps around Christmastime somewhere in the mid-1970s, cousins squirming around a stone hearth, probably before or after a holiday dinner, perhaps while the ham or turkey and stuffing and green bean casserole and pies are finishing in the kitchen. Present: grandparents, parents, aunts, uncles, lots of cousins. Maybe some kids are sitting on some adults’ laps. (These attendance details are all fuzzy.) Perhaps we enacted this scene on several occasions, at each annual holiday gathering of family; so my single memory may be an amalgam of a few different years’ gatherings. I don’t know.

 So we kids are gathered at the stone hearth. And you take a thick book from a shelf: _The Collected Poems of James Whitcomb Riley_ or a very similar title. Somehow you get us excited, interested in hearing a poem or two before dinner. I don’t recall how. But I recall all of us kids–all of us under 10 years old–intently listening as you begin your rendition of Riley’s “Little Orphant Annie” or “Raggedy Man.” Here’s the first stanza from the former:

 Little Orphant Annie’s come to our house to stay,

An’ wash the cups an’ saucers up, an’ brush the crumbs away,

An’ shoo the chickens off the porch, an’ dust the hearth, an’ sweep,

An’ make the fire, an’ bake the bread, an’ earn her board-an’-keep;

An’ all us other children, when the supper-things is done,

We set around the kitchen fire an’ has the mostest fun

A-list’nin’ to the witch-tales ‘at Annie tells about,

An’ the Gobble-uns ‘at gits you

Ef you

Don’t

Watch

Out!

 (excerpted from _Complete Works_, Indianapolis: Bobbs-Merrill, 1916. Available online at _Poetry Archive_.)

 James Whitcomb Riley’s dialect poems are best when read aloud, like most poetry, and they’re rich with all kinds of sound devices students are made to study in their English classes. And in your delivery, Uncle, you hit the proper notes, with strategic pauses and inflections and crescendos to maximize dramatic effects in this poem about goblins sucking me through the floor or snatching me through the ceiling if I didn’t behave, if I sassed my parents, if I disrespected adults, etc. I can’t say that I was better behaved or less sassy because of the inherent threats in this poem. Doubtful. But I remember your performance of this poem–riveting, engaging, scary-but-not-really. Uncle scaring us with poetry.

 I’ve read this poem to [my daughter] and failed to achieve the same titillated reaction from her. She probably yawned (tough crowd). Maybe if I loaded the room with more cousins, a larger audience, some green bean casserole. So there’s one Uncle story.

 Do you recall this story in the same way that I remember it? Can you fact-check my memories, fill in blanks, or add a level of detail?

 I hold these memories very fondly when I think about you.  Again I hope that you recover soon.

Love,

Your Nephew

 

Email: (response from Nana to Papa’s nephew)

Thank you for that encouraging note. Papa enjoyed reading it and nodded that he does remember it but he is not able to respond at this time. Reading it wore him out (he was tired anyway from eating dinner). He will no doubt want to respond when he feels better. He is weak and discouraged. Hopefully the encouragement from his doctor has inspired him. We are praying he will want to get better and work to do so.

Love, Your Aunt

Email: (from aunt to me)

Thank you, Kari, for the update….

I’m glad he had the transfusion, and that they are trying to be proactive about the feeding tube, monitoring with the swallowing video.  I think they’ve done this before.

That being said, I would keep stomping my feet with any change for the worse.  Sometimes it takes the next shift of doctors and nurses, or one more voice to get things progressing.  I’ve had nurses who have gotten procedures stopped that would’ve definitely affected my health, for better or worse – once something is brought to their attention.  You and your mom are your dad’s voice for now, and are sorely needed.  Also, that means that you and your mom have to be getting exhausted, especially with your boys, and the driving back and forth!

 I pray for strength for the caregivers.  This verse keeps popping up in Psalms 80:  “Restore us, Lord God Almighty.  Make your face shine on us, that we may be saved.”  God blessed Israel, and He blesses us today.

Nana’s Notes:

Another doctor was in, female – very compassionate & understanding, encouraging Papa that it would not always be this way – it will get better.

Papa restless last night, some moaning – wants to die.  He said that yesterday & this morning, even to the doctor.

They say it will get better, but it isn’t.  Papa won’t eat the food or drink thickened liquid – he just wants water, just a little sip – he can [only] have ice chips.

I wrote out on paper, “do you want regular water?”

He wrote, “I WATCH CATCY,” mimicking with his hand the motion of drinking water from a cup.

I wrote, “do you want to rinse your mouth out?”

He wrote, in frustration, and with a star for emphasis, “I AMATS TO THE AVATUA TO AHE AVCAWA AT ACHHE” 

(interpretation: “I WANT WATER!”)

Rehab rep came in – they need to start doing a calorie count – important he is eating well.

Had blood in his sputum (mucous from throat) today.

Only ate a few bites of breakfast – won’t drink thickened liquids – needs nourishment.

 

My Reflections:

I love my boys, they’re awesome.  And I’m so blessed to have them.  I snap a photo this morning of a precious moment of the three of them together on the couch, just being their cute little selves:

They’re also blessed with an awesome aunt who is willing to come watch them today with her own adorable little toddler.  4 boys total; all day.  Very special aunt, indeed.

And I head off to the hospital yet again.

When I enter Papa’s room, Nana is more shaken than I’ve seen her since this whole ordeal began.  She’s fighting back tears.

“He just wants to die.  He just wants to give up, ” she tells me.

And Papa doesn’t look good.  He groans and moans and looks so uncomfortable.  He’s so weak and won’t eat or drink his thickened liquids.  He’s miserable.  Any optimism and exiteable talking and animation that was so common right before surgery is completely gone now.  He looks so old, so worn down.

He’s in and out of sleep most of the day, but at one point is alert enough to talk with Nana & me and we’re actually surprised at how alert he becomes.  He’s trying to tell us something and, as usual, we’re having a hard time understanding.  It’s a game of charades as he talks and does hand motions and we try to interpret his meaning.  He writes in the air as with a pen and then closes the “book” he’s writing in.

“Something the nurses are writing in their charts?” Nana guesses.

“Nah!, Nah!,” Papa shakes his head and waves her off in frustration.

I try to gather bits and pieces of his speech and hand motions and go out on a limb and ask something like, “Do you mean you’ve written in the story of your life and now you’re ready to close it?”

Papa’s eyes light up and he points to me and nods and says “Yeaaaah! Yeaaaah!”

Papa keeps talking and motioning, pointing up and air-writing in his “book” and looking at us for understanding.  I try to put the pieces together again and am almost embarrassed to ask it, but I do.

“Are you saying God spoke to you?”

Papa’s eyes get big again and he emphatically says “Yeah!”

And I tentatively go on, “And you’re saying God is telling you that you’ve lived a good life and it’s ok to die and go to heaven now?”

“Yeah!,” Papa exclaims and nods, looking grateful that we finally got what he’s been trying to tell us.

And I can’t believe what I’m hearing.

“But He didn’t ask our permission and we’re not ok with that!,” I quickly respond.

And I sit there, trying to keep this very heavy moment as light as possible.  Trying not to completely freak out.  Did God really speak to Papa and tell him this is it?  Is this really his time to go Home?

And after talking briefly longer, Papa becomes tired once again and drifts in and out of his uncomfortable sleep.  And there are a few points in the afternoon where he becomes so still that Nana & I look at each other wide-eyed at his bedside, wondering if he’s still breathing; wondering if he’s still with us.

I hadn’t planned to stay this long today.  J’s sister was planning to get home so her toddler could nap, but I’m just not ready to leave yet.  I can’t leave yet.  I’m not sure when I’ll be able or ready to leave.  I call her, voice trying not to break.  She’s understanding and awesome and tells me not to worry and to stay as long as I need to.

At some point in the afternoon I’m reminded of Papa’s sister’s email and realize that Papa has hardly been drinking or eating for days.  This can’t be normal.  Or good.  Could Papa’s current condition and state of mind be due to dehydration and lack of calories?  Are the nurses aware of this?  Aren’t they surely aware of this?  It is my usual reaction to let the medical professionals do their jobs and trust that they are doing it well, but perhaps this is the time for a little foot stompin’.

So I start talking and expressing my concerns to any nurses or doctors that come Papa’s way.  And they listen and take notes and start recording Papa’s calorie intake.  And I see that this foot-stompin’ thing is important, that shift-changing nurses don’t see the whole picture and that doctors have divided focus among their many patients.  But I also see that Papa’s case isn’t clear cut, his medical care is a balancing act, and that the solutions I thought were so straight forward are anything but.

But…..

When Papa’s neurosurgeon comes in to check on Papa, we are encouraged.  The first thing I notice is how he speaks directly to Papa, not us, and he actually seems to understand what Papa is trying to say to him (the vast majority of the doctors and nurses direct their conversation & questions regarding Papa to Nana & me, perhaps giving a smile and nod to Papa when he speaks, but looking at us to interpret).  Papa has noticed the way most of the nurses and doctors treat him too, and has tried to voice his frustration over this to Nana & I, going so far as writing it out so we’d better understand what he was saying.  At one point he wrote out:

I ANIT TO SPEAK TO

ANIT THE TEAM YOU’LL IT

ANK ME IT YOU

AT YOU ME ANIT ME

The gist of what he was telling us is that the nurses & doctors don’t speak to him, but to us. And he went on to say that they act like they care, but they really don’t.

And I must admit that Nana & I have become accustomed to acting as interpreter for Papa, jumping in to be Papa’s voice and ears whenever needed.  So naturally, when Papa’s neurosurgeon comes in and speaks directly to Papa, I’m initially taken aback.  But my surprise is quickly replaced by gratitude, for through this doctor’s approach, Papa’s been given back a bit of his dignity and voice.  The doctor listens to Papa’s discouragement and tells Papa he’ll let him know the “real deal.”  He says Papa’s current state should be the worst of it and improvement should be evident in the next day or two.  He is optimistic and our spirits (including Papa’s) are lifted.

Even further, a tentative plan for the next steps of Papa’s treatment is being coordinated with his many doctors and they communicate this with us.

We breathe a little easier, grateful for the rays of hope we’ve been given.  My visit closes on a far better note than on which it had begun.  I say my good-byes and give my kisses and head home to my brood at home once more.

My brood which includes a certain C Bear who likes to show off his crazy dance moves as J Jr. snaps photos with my phone (when I’m not aware):

 

What a crazy roller-coast ride this is.

 

Email: (from me to a friend)

It’s been a rough few days with my dad.

Had to have a blood transfusion for low platelets.

And be put on oxygen.

Has swallowing issues (which is common with brain surgery).  He has a significant risk of aspirating (food/drink going into lungs), has been put on thickend liquids, soft foods, but the risk is there regardless… feeding tube ruled out, IV fluids not an option due to his heart condition, stomach tube will be put in Friday if his calorie intake doesn’t improve (he only will eat/drink a few bites/drinks per day).  Very weak, want to encourage him to eat, but then if he does, there’s the risk for the silent aspirating which could lead to pneumonia – ugh!

Yesterday & today he’s been especially discouraged.  Saying he’s lived a good life and is ready to go to heaven and that he talked to God and God said it’s ok.  Saying he’s done dealing with all this.  It’s very difficult to understand his words, but with long “talks” you can pick up the gist of what he’s saying.  Tough, TOUGH to hear him say he’s ready to go, but then who am I to argue with his conversations with God?, yet also figuring a lack of food & water for days would understandably put anyone in a similar mental state.

He has a lot of weakness on his right side, can move arm/leg somewhat, but not much.  Can’t get around/support his own weight.  Looks like he’s aged 15 years in the past week+.

Still waiting on pathology report (come on already!), but from what I can gather we’re dealing with something serious here.  Tentative plans are for him to be moved to rehab early next week, then start chemo/radiation treatments a couple weeks after that.  There’s a new trial that they’re highly recommending.

Met with neurosurgeon this evening & he was encouraging.  Letting my dad know that for what he’s been through, he’s doing well and that he can go through this optimistically or pessimistically, but “it’s a hell of a lot more fun if you go through it optimistically.”  The doc feels that my dad will improve, that the stage he’s in is rough, but should get better w/in the next day or two.  My dad seemed encouraged after the doctor left and willing to keep on keeping on.

So that’s where we’re at currently.  Taking trips to the hospital every other day.  My mom has been there with him since surgery.  A bit of a roller coaster ride, feeling at peace right now, felt completely crappy this morning.  Bottom line, he’s in God’s hands & we’re trusting (trying our darndest) God’s will in all of this.

-Kari

 

 

My Reflections:

The skies are a threatening gray.  Soon the winds blow hard and the rain falls heavy.  There’s a puddle of water on our kitchen table.  Our skylights are leaking.

Just one more thing to add to the list of things I don’t want to deal with right now.

No “one more things” allowed, please.

This morning there’s a Pilates session for the group of Bible study women I’ve been meeting with this summer.  I’ve missed the last couple weeks of study and figure it will be good to get out and have a change of scene.

What was I thinking?

I didn’t really consider that Little M would be with me…. Trying to focus on proper form for Pilates moves with an unhappy baby doesn’t prove to be productive,  much less stress-reducing.  I try to be a good sport though, all the while thinking:

Why am I here?

A kind friend takes pity on me and takes Little M in her arms, holding him the rest of the class so I can focus and participate.

Focus?  

Participate?

As I lay there on the mat mid-hundred or superman or plank, I’m anything but focused.  It’s all I can do not to roll up my mat right then and there and head back home.

What was I thinking coming here in the first place?  

Bad idea.  

I want to cry, not crisscross.  But I stay, and get through it, and am a bit relieved when it’s over and time to get out of there.

Life isn’t normal, and somehow showing up today and trying to pretend that it is just didn’t work for me.  In a strange way, showing up to the hospital is much easier than showing up to a Pilates class.  And right now, that’s so much more where I’d rather be.

 

Nana’s Notes:

Papa awake ~ 5:30 AM – somewhat restless night, but alert & talkative at 5:30ish.  Between talk and gestures I understood most of it – talking about Mark’s [our son’s] surgeries and Papa’s sister’s surgeries.  Then about Mark and his kids and wife; Kari, J, and kids.  

I mentioned to the doctor who came before or about 6:00 AM that I wondered last night about getting Mark here [having him fly across the country].  Papa heard & understood me & said “no” – he’s not dying (motion sleeping & pointing sort of up) & will see his grandkids grow up.

Was in good spirits.  Wanted water to drink – real water from a cup!  He can’t have it because of swallowing problems.

I gave him a swab swish of water, tried another & he didn’t want it – mad because he couldn’t have water (nurse offered him thickened water & he didn’t want it!) & wants to go home -sixth day in hospital.

Watched TV for awhile & then wanted to sleep.

Email: (from a friend to me)

Hey Kari, 

I wish I did have some trick to make it easier on you.  It is really hard to find the balance between wanting to spend time with your Dad and your family.  I can’t say I handled things perfectly but I just handled it the way you said you are…one day at a time.  You know this is going to be a short season in your life and you need to do what you feel is best for your dad (and you).  Lord willing things will end up differently for you then they did for me.  But at least looking back I will never regret one time I went to see my dad and you know what no one remembers the month that I didn’t make dinner or that our house wasn’t clean.  Once he gets moved to rehab that will be a little easier on you.

 

My Reflections:

The house is a mess.  Before I leave for the hospital yet again, I take a moment to tackle the entryway to create some semblance of order; somewhere.  I even text J a photo – cause it feels like such an accomplishment and I know he’ll appreciate it:

For some reason I feel the need to take a photo of our “Summer Fun List” too, not for J, but for me:

It’s the list of all the fun things I wanted to check off with the boys this summer; water games, lemonade stands, crafts, science experiments, special excursions….. It’s the list with far less check marks than I was hoping for.  It’s the list that’s getting mostly ignored due to far more pressing matters.

Those pressing matters include Papa, of course, and right now he takes precedent over checking off boxes of fun memories with my boys.  Hopefully there will be plenty of time for that yet to come.  I’m just not sure there will be plenty of time with Papa yet to come.  And that’s why I get in the car today and take the long ride to visit Papa at the hospital.

But I don’t want to just visit with Papa; I also want to give Nana some much needed air and a few moments off hospital grounds. A dear family friend has sent Nana & me a card of encouragement along with a gift card to Chili’s.  Today seems like a good time to make use of it.  Nana hasn’t left Papa’s bedside since his surgery, except for quick runs to the cafeteria, mostly for take-out.  Not that I can blame her for not taking a break.  Doctors are coming and going at all times of the day; there’s no set schedule and Nana certainly doesn’t want to miss them.  They come to give reports and updates and therapy and if Nana or I aren’t there, they’ll just be reporting to Papa, which gets tricky considering his communication difficulties.

So when I arrive at the hospital, I’m able to convince Nana to go.  And we do go out, and it’s good to escape even for just a little while.  And I don’t think we miss too much while we’re away.  Nana is such a trooper, she’s taking this all so valiantly, sleeping on a hospital pull-out bed, being ever-the-encourager for Papa in his cantankerous state, diligently taking notes of the reports from Papa’s doctors, and doing her best to keep family and friends updated (Papa has always been the “chief emailer” in the house, Nana gladly avoiding computer usage as much as possible…  but as present circumstances necessitate, she’s venturing into the world of online communication and slowly, but surely, getting the hang of it).  She’s tired, but never complaining, jumping in with both feet and just doing what needs to be done to best support Papa.  Definitely very tangibly living out her’s & Papa’s wedding vows “to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part.”

But we’re definitely not focusing on the last part of those vows just yet.

 

Nana’s Notes:

Doctor in – says the neurologist says Papa’s platelets are low so he needs a blood transfusion so there will be no bleeding in the brain.

Nurse said Papa is “lucky” because Red Cross had one pint of platelets – that was all they had.  She is flushing the line in his arm in preparation for giving them to him when they come.  She is very knowledgeable & proficient.  I’m praying the platelets will come before her shift ends in 20 minutes.  She worked hard at finding a good place to put a new port in his arm since his arms are a bruised mess, the left one perhaps with phlebitis.  

The platelets came 15 minutes before the nurse’s shift ended.

He was put on oxygen tonight.

He watched Jeopardy & Wheel of Fortune & O’Reilly.   Papa interested & alert.

Slightly elevated temp – 99 degrees, so they gave him Tylenol.

 

Email: (from me to Papa’s siblings)

Didn’t plan to give another update till we got the pathology report back…. and am currently finding myself frustrated and even a bit angry for things being in such a state to necessitate an update before that.  In my frustration, I am only deeming this as “Update #2.5,” saving “Update #3” for the pathology news, for which I’d already, apparently, planned (not as if I’m trying to hold onto any semblance of control in this or anything…..).

Was at the hospital for a good part of the day…. was hoping to see a bit of improvement today, as the doctors had indicated might be the case.  Instead, Dad was even more tired, uncomfortable, easily-frustrated and making less sense than before.  For the most part, he wanted to rest and not be bothered.  His right side seemed even weaker than before.  I felt like he’d aged 15 years since this ordeal began.  When my mom brought up her concern over his lethargic state with one of the doctors, we were reassured that this was “normal” for all he’d been through with the surgery.

Shortly after I arrived home from the hospital this evening, Mom called to tell me that she’d just been informed that Dad needed a blood transfusion because of low platelets.  She also said that the swallowing video that had been taken this morning showed possible aspirating and that the doctors were recommending a feeding tube to help avoid this.  Mom was told that his was a silent type of aspirating, meaning it could be happening when Dad eats/drinks without giving us signals that it’s happening.  Dad’s oxygen levels were also found to be a bit low and his temp was slightly elevated (from 98 to 99).

Soooooo…..

– Dad got a blood transfusion around 7 PM tonight

– a feeding tube is planned to be inserted tomorrow morning

– Dad was put on oxygen

– Tylenol was administered to help keep his temp under control

The good news (yes, there is some good news after all that!) is that when I talked to Mom again around 9 PM, she said dad was sitting up & watching TV & more alert than he’d been all day.  So, we’re taking this moment by moment and rejoicing in the good (& holding our breath a bit with the not-so-good).  Trusting Dad in God’s hands…. easier said than done at times, but we know God can handle this far better than we can!

Anyway, wanted to let you know the latest in dad’s saga, and will save the mass-emailing for when we have a better feel for what’s going on.  Just want to keep you up to speed with the latest (hoping this gives you a clearer picture for what’s going on so you’re not left wondering, but am also hoping this doesn’t add undue stress to the situation).  Let me know if you’d prefer the “just the facts” abridged version, or the “good news only” updates, and I’ll do my best to oblige.