My Reflections:

Today it’s the usual running around among home and school and errands and kids and life.

After dinner, J helps the boys with their Rainbow Loom creations:

 

And something about him helping our boys create wrist bands and necklaces with tiny rubber bands and a crochet hook warms my heart and makes me smile.

Later, I get a text from a friend asking if I’m free to get together the following morning.  I text back:

Me to my friend:  Have an apt for my dad to go to in the AM.  Going to try clean up the house a bit before that.

 

My Reflections:

After I drop off C Bear for preschool, I head to Nana & Papa’s for a quick visit.

When I get there, an occupational therapist is working with Papa, walking alongside him and offering encouragement and pointers as Papa slowly shuffles along with his walker.  I wonder what she’s thinking.  If this is just routine work for her, her seeing Papa as just another feeble old man on her round of patients to visit.  I wonder if she has any concept that less than two months ago he was quite a different man altogether, and that needing her assistance was the last thing on any of our minds.

Don’t get me wrong, I’m glad she’s here.  And she seems very nice and competent and helpful.  It’s just still strange for me to grasp this as reality.  And having someone here like this helping Papa in his own home makes it all the more strange.  Nana & Papa’s home is familiar territory, but this, right here, right now, is anything but familiar territory.  This will take some getting used to.

But I’m not sure I’ll ever get “used to” this.

Papa is doing better though than when we saw him just a few days ago.  Definitely more “with it” and engaged when I talk with him.

While Nana works in the kitchen or is occupied with Little M, I ask Papa a hard question.  Not that I want to, but it’s been recommended that this conversation happen at some point, and I know it needs to happen.  So I ask Papa about his wishes, that as things progress, where he’d like to be; here at home, at my place, or in an assisted care facility?  (I don’t mention it to Papa right now, but I’ve already come up with plans of how to reconfigure things at our place should it get to the point where Papa would need more help;  turning our dining room into a make-shift bedroom so Nana & Papa could be with us, not so far away, and that Nana could have more help in caring for Papa).

But Papa says he’d like to stay put at home for as long as possible, that if he had more strength he’d like to move Nana and himself to a 55+ community or such where it would be easier on Nana down the road, but he understands that’s not possible right now at least, he would need more strength for that to happen.  It bothers him being in their current home with its size and property to keep maintained.  It bothers him that others (friends from church and neighbors) are helping with this, while they have their own busy lives.  He says it bothers him that Nana doesn’t think this is a big deal, that she says these people don’t mind helping, but she doesn’t realize this is a big deal for these people to help like this.

It’s clear that he doesn’t want to be a burden on others, to obligate well-meaning friends to help out with things he can no longer do.  It’s clear he wants to look out for Nana as well, especially in regards to the future, that he doesn’t want his care to be a burden or too much for her.

I wish there was an easy solution.  Him and Nana staying at their place until things get “bad enough” to require other arrangements isn’t exactly a comforting prospect for me to hear.  I wonder what will constitute as “bad enough” and once we reach “bad enough” what exactly our options will be at that point.

But I don’t argue with Papa’s desire.  And for right now, I’m glad he can currently be where he wants to be.  In some ways, it’s easier that he gets to decide this, that finding the best solution is not up to me or anybody else… right now.  For me, it’s just another step of letting go of the fear of all the unknowns the future holds and trusting each step is in God’s hand.  But I sure don’t like this walking blindly thing.  And the trust doesn’t come naturally…. its a choice, or sometimes rather a throwing up of the hands and saying “I’ll trust!” because there’s really no other reasonable option out there.

While reading Streams in the Desert, I found this quote from Phillips Brooks that seems fitting:

Faith when walking through the dark with God, only asks Him to hold his hand more tightly.

Definitely feels like we’re walking in the dark with all this.  Definitely would like some light shining down from above for a little clarity on things.  But I guess that’s not what faith and trusting are all about.

I guess I still have a lot to learn in that department.

Soon it’s time for me to go and a friend from church comes to sit with Papa so Nana can run out to pick up groceries and such.  Nana tells me that lately Papa has preferred no visitors, it just takes too much energy and he’s not really in the mood to visit with friends.  But this visitor today is a necessity for Nana to be able to run her errands.  It’s quite the responsibility for Nana to be Papa’s sole around-the-clock care-giver, confined to the house and looking out for him 24-7.  But she doesn’t complain, not one bit, and thankfully there are friends close by who are willing to come Papa-sit in those rare moments she does need to leave the house.

Later Nana will tell me that her prayer during this time is that it will never get to the point where Papa’s care becomes too much for her to handle, that she’ll be able to care for him here at home for as long as possible.

In sickness & in health….

She doesn’t want it any other way.

 

Thanks, Nana, for demonstrating this so faithfully for Papa:

 

 

Email: (from Nana to friends & family)

Hi,

We have been home a week now and yesterday things began looking up.  Papa got on the computer for the first time!  He didn’t do a whole lot but at least he had the interest to get on.  That was after we had been gone for four hours for a doctor’s appointment and signing with notary for a handicap thing for the car.

We had a friend from church come help to get Papa into the car, but when we came home he was able to use the walker to get up the two steps from the garage into the house.  That is the first time we had used the walker since last week when he fell.  Thankfully he did not get hurt but we had to call a neighbor to help get him up off the floor, after he had made an army crawl most of the way to the bathroom.

I mentioned that Papa’s steroid dose was increased to try to help his speech which had declined, but it just made him weaker and did nothing for his speech.  So, a few days ago, it was decreased again and yesterday he seemed some stronger and more encouraged.  He is doing well today too.  And, his speech is also improving!  We are using the walker again, but also have the wheelchair close at hand for the times it is needed.

The appointment with the neurosurgeon [last week] went well.  He was pleased with what he saw.  He encouraged Papa to do the radiation and chemo treatment–at least radiation– but understood his hesitation and said he would respect whatever Papa decided.  The radiation oncologist is also encouraging at least radiation, even a 10-day regimen, but not until Papa gets stronger.  In a few days we have an appointment with a chemo oncologist (a friend of friends, whom we have met in the past) for a second opinion.

Last week, a nurse from home health care came and a physical therapist.  Yesterday an occupational therapist came, and today the nurse and PT returned and a speech therapist came.  Tomorrow OT returns and the next two days more therapy with exercises for us to do in the meantime. So, we have to get on some sort of schedule, and I am not a scheduled person!  Help me, Lord!  I am also now preparing three meals a day which is different for me.

The weather here is beautiful with cool, sunny days.  The Lord is good!  Thank you for your continued prayers and encouragement.

Love,   Papa and Nana

 

My Reflections:

C Bear wants to go apple-picking.

So we do.  Just like that.

Apple pie, anyone?

My Reflections:

Today I go to the gym with C Bear and Little M in tow.

It’s been awhile.

While I’m herding the boys into the gym, we pass by some other kiddos with their mama.

And I smell something.

Phew!  Worst B.O…..

EVER!

Oh, those poor children, I think to myself.  They stink!

And as we pass by them, I cringe.

Oh no!  It’s not them – it’s MY kids!  Ack!  

My kids stink!

But a second later it gets worse.  Cause I realize it’s not my kids.

Sniff [pause], sniff-sniff.

Horrors!

IT’S ME!

I haven’t even started working out yet, and I smell worse than I ever have.  IN.  MY.  LIFE.

Oh, my heavens, how can this be?

And it hits me that there’s only one logical explanation for this:

STRESS SWEAT.

Do you know about stress sweat?

I never fully got that Secret deodorant commercial about stress sweat (this one here)…

Until now.

Yes, this stress sweat thing takes your average run-of-the-mill  B.O. to a whole other level entirely.

Undeniably.

Ack!

Guess I better add some extra-super-mega-ultra-max antiperspirant/deodorant to the shopping list.  Cause like the commercial says, stress sweat is most certainly “different than heat & activity sweat… it smells worse.”

Stress:  Check!

Smells worse:  Double check!!

This stress sweating only adds to the recent eye twitching I’ve been experiencing (that’s only happened once before, again when I was under stress).  Kinda crazy how despite my best efforts to “deal” with everything lately, my body still has it’s own way of “dealing.”  And it just ain’t pretty sometimes.

I forgo a pre-workout shower and hope to blend into the sweaty masses of a workout class before being sniffed out.

I definitely do not forgo a post-wokout shower though.

Followed by a very liberal application of whatever antiperspirant I have on hand (prescription-strength will have to wait).

 

Later in the day, a shipment arrives.

Not sure if this helps alleviate or exacerbate the stress, but none the less, I’ve got some serious reading (and watching) to do:

 

While J Jr. has some serious studying of his own to complete:

 

I’ll leave the math problems to him while I attempt to help Papa eradicate brain cancer (with ginger juices, wheat grass enemas, and plenty of apricot pits… or something like that….).

 

And C Bear?

Well, he’ll just turn lemons into lemonade (or at least that Amazon shipment box into a race car).  No stress-sweatin’ or eye twitchin’ happening for this kid anytime soon.

And I couldn’t be happier about that!

Text: (from a friend to me)

Friend:  Hey!  Just checking in.  How is your Dad?  How are you?

Me:  Holding steady.  Dad’s been pretty weak, fell, but luckily wasn’t hurt.  Steroids decreased to address weakness.  Headed w/ my crew to see Nana & Papa this evening.

 

My Reflections:

We plan to go to Nana & Papa’s place for dinner & a visit this evening.  In the morning, I see a friend and mention this to her.  She comments that as hard as these present circumstances are, how special it must be to have these times to visit together as a family.  For a brief second I just look at her and pause, not sure of how to respond, then opt for a half-hearted smile & nod, uttering an “uh, huh” or similar agreement.  Yet I feel the fraud and can’t help but wonder how much my friend’s image of our visits with Papa would contrast with reality…. what she would say if she really knew what it was like.

I can imagine how it might seem to someone from the outside, us gathering with Papa for a warm and endearing visit, sharing fun memories, the boys acting silly, us all laughing together.  Just talking life and being together and appreciating the present gift of the moment.

But that’s just not the way it looks like right now, our visits together with Papa.  And it’s hard to explain the reality of it all in a brief, passing conversation, to a well-meaning & dear friend who’s just trying to be encouraging.

And that’s why I nod and just imagine what it could be, rather than the reality of what it is.

And what is “it” today, the reality of a family visit together?

Well, this evening it looks something like this:

Our boys playing Wii while Papa rests nearby in his recliner, J & I trying to come up with small talk, but Papa being too tired to respond much to what we say.  Papa seeming more annoyed than happy with the presence of his grandsons.

Dinner around the table together, Papa taking a few clumsy bites of his food and then staring off into space, seemingly unaware of our presence, seeming far-off in thought or just not quite “all there” (or rather here).  Us awkwardly sitting there, talking with Nana and the boys getting restless and just wanting to go off and play.

Like a visit you’d take to see an elderly grandparent, or even a great-grandparent, in a nursing home, with one-sided conversation, and awkward pauses, and a loss for what to say next; finally patting them on the hand, kissing them on the cheek, and saying “see you next time,” before you make your exit out the door.

Except we’re not visiting a great-grandparent or even a grandparent, we’re visiting my dad, Papa.  Who literally weeks ago would have been speaking coherently, quite the conversationalist, and walking about, not shuffling his feet in a wheelchair. He would be eating, no problem too, and looking at us rather than into the great beyond.

So this is what our special time together looks like today.

I’m glad we came, yet it’s hard.  It’s important to be here, yet I wonder if it really even matters to Papa that we came.

We say our goodbyes and I blink back tears on the ride home, wondering  what the next day, and weeks, and months may bring.

 

My Reflections:

Today, J Jr. has a soccer game in the AM.

Then friends take C Bear and J Jr. for the entire rest of the day (as in multiple hours in a row). They take them to a local festival… with their four other kids.  Six kids total, age seven and younger, on an outing to an outdoor festival.

God…. bless…. them!

J & I have Little M, and enjoy the absolute quiet of the house during nap time.  We go out to dinner.  We hang out at a bookstore and sip coffee and browse magazines like we love to do.  And Little M is quite the accommodating & agreeable baby for the evening.

Feels like taking a deep breath and allowing the stress to lift, ever so slightly.

A precious gift of down time.

Texts: (between a friend & me)

Friend: Hi Kari, I was praying for you this morning for strength & comfort.  Hope you are doing ok.  You’ve just been on my mind.  Just wanted to let you know 🙂

Me:  Thanks – was needing that today!

Friend:  Then I will keep it up. 🙂

 

Blog Post: (from previous blog written during Papa’s illness)

Quality vs. Quantity

Papa’s speech has regressed this past week.  He’s also gotten a lot weaker.  Last night he fell when he was making his way to the bathroom with his walker.  Luckily he didn’t get hurt besides a small scrape on his head.  Luckily a neighbor was just a phone call away so Nana could get help with picking him back up.

A CT scan done a few days ago showed that there are no major concerns with Papa’s brain – no bleeding, no new tumor growth.  All looks “good;” as good as a brain can look with a cavity where a tumor used to be.

Papa’s oncologists remain in the loop even though he has currently decided to forgo chemo & radiation treatments.  The radiation oncologist believes Papa’s speech regression could be caused by swelling in the brain, so earlier this week, he increased Papa’s steroid dose to address this.  As Papa grew weaker throughout the week though, the steroid dose was decreased once again.  Apparently while the steroid helps decrease swelling, it can also contribute to muscle weakness.  So it’s yet another balancing act of the meds.  And strength trumps speech for the time being.

We saw the neurosurgeon two days ago for a check-up.  I’m amazed by this doctor’s care and concern, taking plenty of time to answer our questions and explain things regarding Papa’s tumor and condition.  Not at all cold and impersonal like I’d expect a brain surgeon to be.  He told us with the type of tumor Papa had, an anaplastic astrocytoma, they always grow back and most always in the same location (Papa’s was in the area of the brain that controls his speech, obviously).  He was much more optimistic than the chemo doctor had been, encouraging Papa to go ahead with treatment, that the chemo, as far as chemo drugs go, is very tolerable and that with treatment, Papa could have a few more years added to his life.  He likened Papa’s situation to a boxing match, saying he’d gotten through round one and he should definitely go ahead for round two…. that if this was round eleven, well maybe it would be time to throw in the towel, but since the fight has just begun, why not keep fighting for a few more rounds?  With letting us know his strong recommendation is for Papa to start at least radiation, and also chemo if Papa would be game, the neurosurgeon also let us know that he would be happy with and support whatever Papa decides, because ultimately it is Papa’s decision.  He let us know that he wanted to keep seeing Papa for check-ups, regardless of what Papa decides concerning treatment.

As I’ve talked with Papa about this decision, he has expressed several things:

• Sure, he’d like to see his grandkids grow up and be a part of Nana’s, my brother’s and my life (and our respective families’).
• He doesn’t want to be a burden to Nana, or anyone else, even though he knows we’re more than willing to help out.
• If he were younger, it would be different, he’d have more to live for.
• He’s had a good life.
• He already has a bad heart, bad kidneys, decreasing eyesight……  And now he has brain cancer, can’t talk right, get around by himself, take care of hiimself……… When is enough, enough?

When is enough, enough?????

As the doctors do all they can to treat this cancer and extend Papa’s life, we are faced with this question.  And Papa must ask himself, and we must ask ourselves, what kind of life are we adding to Papa’s years?  Is it just about the quantity of years he lives or the life he has in these remaining years?  Selfishly, we who love him want to hold onto Papa as long as we can.  I don’t think I’ll ever really be ready to say goodbye, ready to let him go.  I want Papa here as long as possible.  But I want Dad here as long as possible, not just in body, but in mind & spirit – in all that makes him him.

You’ve heard it said a million times, in one form or another, I’m sure:  “It’s the quality, not the quantity that counts.”  As Steve Jobs put it, “Quality is more important than quantity.  One home run is much better than two doubles.”  And in my heart of heart, that’s what I really want.  A life for Papa that finishes in the victory of a home run.

I know Papa doesn’t feel his quality of life is all that stupendous at the moment.  And when doctors optimistically tell him he might have the chance to extend his current state of affairs another 2 or 3 years, I get how that doesn’t offer much appeal from Papa’s perspective.  Currently, Papa’s ready to see this 9th inning through, with no intention of going into overtime.  Death is not something he’s looking to run from at all costs because he knows there’s something far better on the other side of all this.

“And if I go and prepare a place for you, I will come back and take you to be with Me that you may also be where I am.”  – John 14:3

“Where oh death is your victory, where oh death is your sting?” – I Cor 15:55

I’m a jumble of emotions over all of this, and thankful that the decision with Papa’s treatment rests on his shoulders, not mine.  And I do support him, whatever he decides.

 

My Reflections:

I’m exhausted, tired, weary.

C Bear & I take a break poolside with drinks:

Cause it’s gotta be 5 ‘o clock somewhere.

And when Little M wakes from his nap, I bring him outside too.  And I catch a glimpse of our shadow.   And must capture this moment, with another one of my shadow shots.

Cause life is fleeting and precious.

Later Nana calls with some disconcerting news:  Papa fell and scraped his head.  He seems to be fine, but it’s hard to hear all the same.

Definitely feel like we’re skating on thin ice….

My Reflections:

I drop off the boys with a friend and meet up with Nana & Papa for a follow-up appointment with Papa’s neurologist.  The doctor’s optimism buoys our spirits once again, but leaves us with more questions as well.  When I have time, I’ll take a moment to write a blog post for Papa’s [previous] blog to help sort out my thoughts…

 

 

Blog Post: (from blog started during Papa’s illness)

Discontentment

dis·con·tent

/diskənˈtent/

noun

1. lack of contentment; dissatisfaction with one’s circumstances. (as stated by Google
2. a restless longing for better circumstances (as stated by the Free Dictionary)

Papa came home today.  We were glad to see this moment come, but apprehensive all the same.  It’s one thing to be in a hospital facility surrounded by nursers and doctors and rehab specialists.  A call-button within arm’s reach.  Meals magically appearing three times a day.  Room mopped, bed made, without lifting as little as a finger.  Your care in the hands of experienced individuals who do this sort of thing day in and day out.  But back home again?  With just you and the Mrs. (a.k.a. Nana)?  Well that’s another thing all together.  Not that this is more than you can handle together, it’s just something you haven’t had to handle together.  Until now.

I met Papa and Nana at their place today to help Papa get settled in.  As I unloaded Papa’s new gear from their van, I was struck by the oddity of it all.

First came the walker.  With small, cautious steps, Papa used it to climb up the garage steps and then make his way into the house , Nana and I alongside and behind him, “spotting” him and holding our breath lest he misstep and our strength be relied upon to prevent a fall.  A sigh of relief from us all when he successfully made it to the recliner and was sitting once again.

Next came the “commode” – a very distinguished-sounding name for a potty chair.  Papa did a dry run to ensure the chair was of the proper height, etc. and adjustments were made as necessary.

Then out came the shower stool, or seat, more specifically.  The shower footprint had previously been measured and diagramed by Nana so the proper sized stool would be acquired to fit in their odd-shaped shower.  It fit like a charm and a non-slip mat was added to the shower floor to prevent any slippery falls.

Lastly, came the wheelchair.  Quite ironic really.  For years, Papa & Nana have been involved in a ministry of providing used wheel chairs to those in need.  Countless times, they’ve picked up and delivered numerous wheel chairs for this ministry; and now here we were, unloading one of those very wheel chairs for Papa to use.  Surreal indeed.

I’m more than okay with helping Papa as best I can in the midst of this – this is what I want to do.  What I’m not okay with is the rest of this….. this cancer stuff.  Part of me feels guilty for feeling this way, for not being more grateful.  After all, Papa is still with us.  I am so grateful for that, but find myself asking, “shouldn’t I be more ‘okay,’ more content?”  Certainly, it could be a whole lot worse.  This is true.

But on the flip side, it could be a heck of a lot better:

Like Papa could be back to normal.  No need for walkers, commodes, shower seats, or wheel chairs.  Able to talk in a way we could perfectly understand.  Able to sleep at night without worrying about having to get up a gazillion times to use the bathroom.  Able to go to the bathroom by himself, without having to enlist the help of a nurse, or Nana.  Able to go about his day without thinking about cancer and how it’s changed his life, and how it will continue to change his life, and about how much life he’s got left to live.

Am I supposed to be okay with this?  Is he?  Are any of us expected to be okay with this?

Cancer is NOT okay.  It stinks.  Plain and simple, and not simple at all.  If any of us were okay with this, we probably wouldn’t be okay in the first place.  I’d/we’d have to have a few loose screws to be okay with this.  We’d have to be checked out on reality to be okay with this.

So yes, I’m discontent.  And Papa is, and a whole lot of other people are as we face this stinkin’ thing called cancer and all the crummy junk it carries along with it.  We’re “dissatisfied with our circumstances” and have a “restless longing for better circumstances.”  And THAT is okay.

Discontent with our present circumstances because we’re longing for something better.  And isn’t that the way we were created to be?  To not just settle for what life brings our way, but to look beyond that.  To look heavenward.

In my discontent, I’m reminded:

“What, then, shall we say in response to these things? If God is for us, who can be against us?  He who did not spare his own Son, but gave Him up for us all—how will He not also, along with Him, graciously give us all things?…  Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  As it is written:

‘For your sake we face death all day long;

we are considered as sheep to be slaughtered.’

No, in all these things we are more than conquerors through Him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

(Romans 8:31, 35-38)

Discontent in these present circumstances, but content in Christ.

And that is truly an okay spot to be in.