How are you?

 Often times people ask me the question:

How Are You?

Like at the grocery store, or at Walmart, or at church.

Or anywhere.

It used to be an easy rote answer.

I'm fine, and how are you?  I'd say.

Mostly I was Just.Fine.

Now I find myself panicking inside.

Do they REALLY want to know how I am?

Are they asking the loaded
"kyle-has-cancer-and-we-really-want-to-know"
kind of How Are You?

Or are they just asking the "hows the weather" 
kind of How Are You?

At Walmart, or the grocery store, or church I find myself
with a figurative "Thought Bubble" floating over my head...

Inside my mind, churning through most of what I 
typed in that picture below. 

(A lovely picture of me inside the Doughnut Plant
bathroom in NYC.  It'a entirely covered in mirror tiles and
does wonders absolutely nothing for your self esteem!)

Sometimes I say I'm fine.

Mostly I say fine.  Just fine.

Sometimes (if I'm feeling bold and also NEVER at the 
grocery store or Walmart) I say...

Do you REALLY want to know???

Is that what you're asking?

Sometimes they say Yes.

And I look them in the eye.

And tell them.

So if you see me, or Kyle, and ask us the question.

How Are You?

And we seem panicked or confused...

Just know that 'How Are You' packs a loaded punch 
for us these days.

We're just not sure if you REALLY REALLY want to know.

Maybe we would ALL be a little better people if we
asked this question a little more sincerely to the people
that we ask it of.

How Are You?

You never know what someone else is carrying in their 
hearts.

How Are You?

Don't we all carry things around with us?

The loads, the burdens, the sadness or pains.
The worry, the fears, the questions and the concerns.

Maybe the next time we ask someone, "How Are You?"
We will look them in the eye and say,
"No REALLY, tell me, how are you?"

Maybe it will take a little longer to listen.
Maybe we will understand them a little bit better.
Maybe we will appreciate our lives a little bit more.
Maybe we will love a little bit deeper.
Maybe we will come away a little more touched.
Maybe we will come away learning something new.

How Are You?

And that's what I've got for today~

Morning Side Park in New York City with the

June SUPER MOON rising above us, and the city.

Run a 5K with Team Kyle, or walk, or jog....

For those of you not on Facebook, Kyle was asked by an old 

friend Ann Smith (who's son passed away last year from 

liver cancer--the "other kind" not CC) to participate in

a fundraiser 5K.

I want to clarify right off the bat that NONE of the monies

raised are for our family.  They are for a program called

The Giving Tree.

We were recipients of a "Giving Tree" when Kyle was first

diagnosed. 

It is a tree tied with some Gift Cards, some money and

some encouraging notes for people who have been diagnosed

with cancer. (I believe liver cancer--could be wrong)

Anyway....it's not too late to sign up.  Lots of family

and some friends are going to participate.  I will

add the link if anyone is interested.  Sign ups are today

through August 10 (for the $25 price and Team Kyle Superman

blue T shirt) and $30 the day of the race.

Come support a GREAT cause that gives so much back.

There is also a 1 mile walk I just saw (which may work for

Kyle as this race is the day after chemo for him!)

All information is also on Facebook under the Team Kyle 
facebook page!  Thanks in advance to any who participate!

Here is all the information:

(click link)

http://www.anythingforafriend.com/index.php?cID=253

Hiccup

We've had a good run lately here at Casa De Nielson.

Emotions have been stable and days have been without
lots of tears and sadness.

Time has been spent enjoying days, and moments, and life.

It's been a while since I had a good cry.

Like a "whole body, snot dripping, needing to vomit, 
getting a migraine" from it kinda cry.

This morning I had one.  Lots of tears, a good amount 
of snot, but no vomit, and the headache is coming.

Kyle and I for some (insane) reason like to follow fellow
bloggers, and Caring Bridge pages of people that have 
his same kind of cancer.

It's good for information, and connecting to people
who are in the same boat--especially when "your boat"
is kind of empty with not many rowers.

This has it's highs and lows.

We've made some great new friends via the world wide web 
who REALLY REALLY REALLY "get it" because they're going
THROUGH it.  That part is good.  We're thrilled with our
connections to these people.

This is a high!

We're excited when CC (cholangiocarcinoma abbreviation)
patients are doing WELL.

We are happy and rejoice with them.

We feel so sad and heavy when they are doing NOT so well.

When they get sick and sicker and well, die.

This is a low.

This weekend another young father, Kyle's age with 2
small children, lost his 1 1/2 long battle with this
mother effing cancer!  (And I'm sorry to offend, but
this cancer is nothing but a MOTHER EFFING cancer!)

We never met, or knew them in real life, and yet
my heart BREAKS into a million tiny pieces for them.

Fear claws at my heart again.

I find it hard to breath.

Kyle read the blog and told me.  Sunday I kept it all
in and then today the dam burst.

It's one more hiccup in the journey, one more reminder.

I hate reminders.

This is the kind of cancer that doesn't have many victories.

Even with Stage 1, 2 or 3 victories are few and far between.

To live a number years with Stage 4?

That's a "miracle"...MOST folks get 6 to 18 months.

Remember our original diagnosis?

6-18 months.  and 18 months....

That's what this guy got.

(I know I know I know--no one knows what Kyle will get
and we're NOT giving up--we are just sad today.  Sad
doesn't mean "giving up", it just means sad.  Simply sad.)

HOWEVER, it is QUITE the reality check when we 
see someone die.

Again.

From this cancer.

Today I wanted to tell Kyle to come home from work and 
JUST BE with us and never leave again.  Ever. Ever.
(This is when being a millionaire would come in handy)

Today I wept for another mans wife and two children that
have been left behind in the wake of this disease.

Today I hate cancer, this one in particular.

Today I cried.

Tomorrow will be better, but today I let myself feel the
pain and anguish.  I let it roll through me, and over me,
and out of me, in the form of many tears.

Please say a prayer (or send up a good wish or thought) 
for Janalee and her 2 boys.

Pray that they will have strength and courage to make 
it through all that lies ahead.

Part of our human experience is being happy with those
who are happy.  

Finding joy.

And part of that experience is grieving with those who
grieve.  

Feeling empathy and pain with those who are aching.
Really feeling.

So today, we grieve for a stranger who is connected
to us through this cancer.  Our hearts are a little bit
sadder and our smiles a little less bright.

That's what I've got for today.

 Contemplating life and Jackson Pollock in New York City 

The Amityville Horror, Salt Lake City Style or The Night our House was ALMOST Possessed By Evil Spirits...

We thought we had real problems.

That silly cancer thing, ya know?

Friday was Chemo Day, Round 14 and my poor husband JUST
wanted a good night sleep this weekend.

Friday night, our sleep was interrupted I accidentally 
on purpose woke Kyle up in a panic when a certain unnamed
teenager was not home by the time *I* thought he should be.

(Okay, okay he's 19, almost 20--but I still have heart failure
when I wake up and he's not home after a "certain hour".  
Just shoot me!  
I'm his mother.  
We I always go straight from, "he's not home yet" to "he's dead in a ditch".  
There are never any alternative --or sane--places in between "not home" and "the ditch".  Ever.  It's how we mothers roll.)

If anyone cares, he came home safe and sound.  No ditches
were passed along the way.

Then last night, we had a supernatural experience, that turned
out to be not very supernatural ...at all.  But I don't want to
ruin a very slightly good story prematurely.

I digress and I really want to get to the good stuff.

We started the evening off at a BBQ with some friends.

We laughed, joked about cancer, joked about hurt knees (someone
else's-not Kyle's knee), ate good food and it was SUCH a refreshing and relaxing night for us.  

It was energizing.

We came home and Kyle (after chemo and one bad night sleep
was pretty exhausted) crashed on the bed and was pretty much
out like a cancer patient, or a light, by 10 PM.

Everyone (the teenagers) came home at a decent hour and I was able to fall asleep until about 1:45 in the morning. 

This morning.

Wake Up #1 for the night.

At this point I woke from a dead sleep to a VERY weird noise
coming from our ceiling fan.  An extra loud "moaning" and 
whirring and creaking.  It wasn't making that noise at 11:30 
when I went to sleep.  

It had been whirring peacefully overhead at that point.

Doing its job, keeping us cool, quietly.

For the record, it was new last summer.

For the other record, it has been 100 degrees or MORE for 15 days so far this summer in Salt Lake, and above 90 since about the end of May this year. 

That's HOT.  That's really really really hot.

Add that to a woman in her mid-40's, couple with pre-monopause,
stir a few times and you have a lady ready to pack up and move
to the coast this year.  Or sweat profusely.  Or swear profusely.
Or complain about the heat profusely. #ihatesummer.

I have done all of the above.  Several times.

The fan (and the A.C.) pretty much never stop running.

So it was GREAT cause for alarm to wake up to what sounded
like a fan that was ready to break down.

Cancer or not, I was ready to send Kyle to Home Depot at 2 AM
for a replacement fan.

I'm not sure who was more worried about what a broken fan might mean...

Kyle or myself.

It was such a loud and strange noise, that it also woke Kyle.

I (of course) uttered a few choice swear words and muttered
that certainly this new fan could not ALREADY be broken!

Kyle then heard a high pitched beeping coming from the basement.

He went to investigate and I stayed put surveying the situation.

As I was standing in the room looking at the fan, our TV
and cable box flashed on and off.

And on and off.

My cell phone, on the charger next to my bed, then began to flash
on.  And off.  And on.  And off.

Olivia, in the bedroom next to us, woke up and said her Ipod was flashing on and off.  And asked what was going on.

Then computers bleeped on and off.

Kyle said in the basement the washer and dryer lights were
flashing on and off and the carbon monoxide detector was 
going on and off.

Our entire house was alive with energy, and appliances,
and electronics, that all seemed to have a life of their own.

There was a slight feeling of madness in the air. And
worry and fear and confusion and concern and noise and blinking
and flashing.

At this point, all the hairs on my arms were standing on end.

This was it, the moment of truth...

I was sure it had finally happened.

Our house had been possessed by The Devil.
With a capital "D".
Or by Evil Spirits.

All those stories I had heard growing up were true.
The Amityville Horror was NOT a hoax!

Forget cancer.

Forget terminal.

I didn't have enough faith!
I needed to repent of my sins!
Please (oh please oh please) forgive me Jesus.

We had bigger fish to fry, or spirits to cast out, as it were.

Move over Amityville Horror house, move over house from The
Conjuring...

...Make room for Morning Star Madness.

Or The Nielson Nut House of Terror!

I began to tremble.

Kyle told me to pull myself together!  (seriously)

Just when the flickering of electronics reached mass hysteria,
and the blinking and winking of lights was getting ready to take over our entire home, there was a loud boom and flash of
light outside in the backyard.

And the house went dark.

Radio Silence.

Black.  Quiet.  Still.  Calm.

The spirits had been banished.

Satan had released our humble abode from His hold.

Praise the Lord. Sing Hosanna. Shout with glee. Jump for joy!

We took a deep breath and were then accosted by the sounds
of skittering dog paws running across the wood floors of our
kitchen as Ruby the doodle ran pell mell from her basement
sleeping spot to her "I are scared Mom!" spot under Olivia's
bed.  #iareadog

She was quaking and whining like a baby from the flash and boom in the yard.

We were a little concerned ourselves, but refrained from 
hiding under the bed.

It appeared that our eminent possession from evil spirits had
been pushed aside by a full on failure of power.

Now not only did we not have a working fan, albeit one making weird noises, we didn't have lights, a TV, clocks, or air conditioning anymore either.

We opened our windows, prayed for a bit of breeze, gave thanks
that we were not going to be possessed by the Devil and nor was
our house, and tried to sleep.

(After reporting said power outage to the Electric Company).

------------------------------------------------

To make this long post even longer, and somewhat anti-climactic...the power company sent trucks out at 3 AM.

At which point they placed a light bright enough to replicate the sun on the front of our house to make sure they had the correct
address where the problem was occurring.  Did I mention our 
bedroom faces the street?

Wake Up #2 for the night.

At 4 AM, they drove a few big trucks through the neighborhood to 
scout out the best yard to come through to fix the problem.

Wake Up #3 for the night.

At 6 AM, a whole slew of power pole climbers, fixers of all things electrical, and their army of tanks rolled down our neighborhood streets.

The rumbling mimicked a large scale earthquake and I'm sure 
measured at least a 5.0 on the Richter scale.

With shouts and yells and a various sundry of equipment being
hauled through the backyard adjacent to ours, we decided that 
Wake Up #4 was really time to Just Wake Up.

So we got out of bed, heard stories from the neighbors, mingled
in our pajamas, took pictures of the sunrise and learned a 
transformer had blown last night on the line.

So much for possession and evil spirits.  
So much for the Devil showing up on Morning Star.
We were anxiously awaiting to see if he really DID wear Prada!

So much for Movie Deals and starring in our very own Horror Story.  So much for the Million Dollars we would've made on it all.  What a let down.  What a disappointment. 

But even with lack of sleep, and did I mention no sleep?,
we got to wake up to THIS sky. (see below) 

Kyle's taking a much needed nap right now...when he wakes
up I will ask him if the sky was worth it.  No sleep and all.

I sure think it was.
And this is what I've got for today.

This is what 6 AM looked like today!

Morning Clouds...

Sunrise over Mt Olympus at 6 AM...

Maybe this is what the sky looks like after

an exorcism, or power line repair, is performed?

The Question Nobody Asked, With The Answer Everyone Wants to Hear.

Kyle with his CUTE Grandma and Grandpa "Great" up at Chemo today.

Round 14.  They caused quite a stir (and a tear or two) when they came

into the Infusion Room to come and give Kyle a little love and support.

They are 89 and 91 years young and have been a huge part of Kyle's

life forever.  It was so fun to see them (and Aunt Wendy!) in their

Superman gear today!!  It was like a little posse of Supermen up

at the Huntsman Cancer Institute today.  #family_love

Well, it may not be the question nobody has asked.

It's a question I get a lot.

And hear a lot.

Often times it's said to someone else in reference to me.

Or Kyle.  Or us.

"How do they do this?"

"How do you do this?"

"I could NEVER do this."

"I don't know how they do this, I just couldn't do it."

Yesterday I went to a caregiver support group up at Huntsman.

I was the only one there.

Apparently I am the ONLY caregiver in the Salt Lake Valley

that needs help.

(I'm kidding--hopefully I'm kidding)

Since no one else showed up what I got was basically a free hour of therapy from a therapist.  Fist pump!

Win win!

We talked about this very thing.

I have heard it whispered in the air around me, over and over.

How.Do.They.Do.This?

I could never do this.

Do you want to know the secret?

The answer to the question?

Here it is:

We can't do it either.

There is no doing.

There is NO magic answer.

And IF you had to do it?

You would.

Here is HOW we do it...

We don't have a choice.

That's how.

So we keep getting up everyday and living.

We keep pushing through the hard times.

We keep going to Doctor appointments and chemo and PET scans.

We keep planning and talking and breathing.

We just keep moving.

And some days we scream and cry and yell.

And some days we stay in bed and weep (Well, I do anyway).

But then a new day comes and we keep getting up and moving.

All over again.

Here's the thing,

The thing is,

There is NO magic answer.

What are the alternatives?

Quitting life?

We can either choose to push through, and forward or

we can choose to give up.

So, you see, there is not really a choice.

It is about just doing.

And here's the other thing...

IF you had to do this?

You would. 

You would just get out of bed everyday and wish it were all

a bad dream that you could wake up from...

...but it isn't and so you would live life.

You would just do it.

Simply because you had to.

There are no other choices.

This is part of the game we call "Life".

Roll the dice, move your game piece around the board, 

pass Go!, collect $200.

Sometimes life hands out some pretty amazing things,

and sometimes life hands out your very worst nightmares.

It's like Kyle said on his recent video interview, "You

get some bad stuff and some good stuff along the way.  You

hope that there's more good stuff than bad and then you 

make the best of all the rest.  So far?  My life has been

WAY MORE good stuff than bad stuff!"

And for him?  That's a good life.

Kyle and I think it's funny when people say we're "heroic" or "have courage".

We don't look at ourselves that way at all.

We are just regular people, facing a really hard thing, making

the choice to keep going.

And I promise, no matter how much you think you couldn't 

do it?

You could!

And you are!

You just have a different hard thing that you will deal with.

Or that you are dealing with.  Or that will come into your

life someday.

And that's what I've got for today!

You can do it!

And so can we!

------------------------------------------------------------

A shout out to a friend I've never met in Texas who is fighting

this horrible monster known as Cholangiocarcinoma.

Lora.

I have learned about her via her friend Amy.

She's facing the hardest part of this battle.

If anyone feels so inclined, who reads my blog, will you please

say a prayer for her and her family and loved ones?

Or light a candle.

Or send up a good thought.

Or good wish.

Or a positive vibe into the universe?

However you communicate with the power greater than YOU?

They could use some extra love coming their way right now.

And I think anyone, that has ANYTHING to do with this cancer

deserves a little boost during the hardest parts.

Thank you~ 

------------------------------------------------------

And for your weekend viewing pleasure.  Here is a 20 minute

TED talk by Geoff Warburton called "The Adventure of Grief".

It is SO SO fabulous!  It's about FEELING along the way and 

choosing joy over sadness.  Kyle found it and passed it along

to me.  We BOTH loved it for so many reasons.

Some different.

Some the same.

Give it a listen.  (Click the link to get to the talk).

Have a great weekend everyone~

The BEST quote from the talk (but still watch it!) is this:

"Even if you've lost the love of your life, you've not been

cheated by life.  No matter how tragic the circumstances.

But we cheat life if we close our hearts after we've lost 

someone."

http://www.youtube.com/watch?v=juET61B1P98

Answers: Part 6

Q:  I add that I don't know if I should come visit often because I want to be spending time with you or am I interfering with precious family time? What are things we can do to show or love and support?

Answer:  This one is a bit tricky.  Visits are good.  We especially love visits at chemo (for
              anyone that wants to come make the 8 hour day a go by a little faster).  It's not
              nearly as awful as some people have thought it would be.  It does make it "real"
              though (and so maybe that's hard).  Kyle does turn greenish-grayish-beige-ish by
              the end of the day too.  So be fore-warned.  Or come early in the day! 

              It's weird, some days, mentally and emotionally a visit feels good.  Some days
              it does not.  My best advice is to call or text and see what we say.  We're
              pretty honest.

              Showing love and support can be simple as mentioned before...a text to say "I'm
              thinking about you"  "How was chemo today?"  etc.  are so super fabulous! I've 
              told Kyle that this super reluctant texter (me) has a new found love with cancer...
    
              ...texting.

              We can connect--easily--if we need/want more we can call and return calls.
           
              We have had many kind acts of "showing".
      
              Notes in the mail, dinners, cards that are sent weekly to Kyle, treats on the 
              doorstep, emails, phone calls, texts.  Again, ALL those things are fabulous!

              We appreciate every single one.  Every single time.  Every time!

              So thank you, ALL of you who have done ANY and all of these things!

-------------------------------------------------------------------------------------------------------

Q: I was talking to a friend about you Kyle and your cancer yesterday. She asked if you wanted Dorien to remarry? Sorry, not really a cancer question, but I hadn't ever for a second even thought about that


Answer:  This one is a painful one for both Kyle and I, and it's a hard one to answer, 
              because honestly it has no answer.  Right now.  Maybe ever.  We cannot
              predict the future.

              We are pretty young (mid 40's--I know that doesn't sound young when
              you're in your 20's, but trust me--if I live to age 80, I still have half my life
              to go.   Granted I could get hit by a Mack Truck today and be dead, right?)

              Lets hope not though!


              I have 4 kids to be a mom to after Kyle is gone.  To raise, and provide for,
              and love and nurture and be there for, and help through lifes problems, and
              help and cry with and do for.

              The thought of being a single mom AND being alone for the rest of my life
              makes me feel sad and lonely.  When I think about it.  Which I do sometimes,
              I will be honest.  Kyle thinks about it too.  Sometimes.

              With ALL the ups and downs of marriage, I *STILL* only ever imagined
              growing old with Kyle.  He would make a mighty fine grandpa.  He would
              be the "fun one", no doubt about it.  (Again these are thoughts that are hard
              to "touch on".  Very very hard and painful to think about these things....

              Kyle, has always said I am free to marry again if, and when, the time ever comes.

              (Who wants to marry an old ugly 4 baby body saggy gross lady anyway?
                Seriously?  I know the realities of what I have to offer and it ain't much people!)

              He doesn't like to think about that one either.  But would freely give his
              blessing for me to move forward with that part of my life.  

              How about if we leave it at that?  There are SO many issues that swirl around
              that question, that we will just get through NOW and the next few years and
              then see where life goes.

              I may be the crazy cat lady (I *DO* hate cats though--so that could be a 
              problem)...but I could be that crazy neighbor lady that has a million animals
              who talks to herself and cackles crazily and all the small neighbor children
              "double dog dare" the other neighbor children to ring my doorbell and run.

              HA HA HA HA HA HA HA ..... (insert crazy witch laugh here!) ;)

-------------------------------------------------------------------------------------------------

Question: A very broad question, but as your family goes on this journey, in what ways has your perspective on life changed? Is there a heightened sense of urgency to get certain life events completed?


Answer:  Yes, yes and a thousand times yes it has changed our perspective on life.
              You find that this diagnosis is a real wake up call about what is important in life.

              That would be family and people and love.

              It's about here.  And now.

              Seize the moment.  May hay while the sun shines.  Don't let time slip away.
              Take time to watch the sunsets.  Leave the chores for tomorrow.  Be here
              in the present.  Live for now.  Make memories.  Eat ice cream.  Sip Dt Coke.

              All of the nonsense (quite literally) falls away.

              Everything comes into a sharp focus, and quickly.

              VERY little of the things we (all) spend our time worrying about and doing?

              In the end, they matter VERY little.

              Ask yourself this question:  If I were told TODAY, that I would die in one month,
               WHAT would I quit doing?  What would I do?  Who would I spend time with?
               What would be REALLY important?  

              We all, already know what's really important...but I think life just gets in the way
              most days.

              Cancer wipes all of that away.

              *Heightened sense of urgency to get things done?  YUP!  Some things will
                not ever get done though because of the time factor.  You have a great sense
                to get things in order though.  For Kyle and I that even involves silly things
                around the house. Finishing projects, etc.

                As I watch nieces who will soon get married, those are the kind of "life events"
                that I know won't happen  in the time Kyle has left (no matter how far to the 
                "good end" of the curve he makes it with this cancer).  The kids are just too
                young...but THOSE are the "life events" I wish he would live to see and 
                 complete.

                Deep, sad sigh.

------------------------------------------------------------------------------------------------------

Q:  Dorien Nielson, you, as the caretaker, do you get exhausted, mentally? Physically? Emotionally? I find myself getting wiped out & lose focus, can't seem to find normalcy - what do you do to take care of yourself?

Answer:  Caregiving is perhaps a whole different post.  But I will try and be brief.

             As mentioned before this is a burden that never goes away.  As a caregiver,
             you CONSTANTLY carry this weight on your shoulders.  It is exhausting.  In all
             the ways Teresa mentions.  (mentally:  you think about it all the time.  You worry,
             you wonder, if you will have the strength to face all that lies ahead.  You wonder
             if once you make it through the worst nightmare of your life, if you will have the
             strength to then live the other worst nightmare of your life and survive?!

             (Is it possible to live through TWO 'worst nightmares'??)
             Seriously, is it?  Someone tell me it is. 

             I will have to live through my husband deteriorating to a point which I honestly
             cannot even imagine.  Honestly.  

             I will have to watch him die.  Possibly a long and slow and (probably) painful
             death.

             That ALONE, is enough to break me.  Into a million tiny peices.

             I will then have to pick up the pieces of not only MY life, but the lives of
             my 4 broken, sad and grieving children.

             At the point when we will all need each other the very most, I will have to 
             walk away from them for many hours each week, working.

             Possibly finishing school as well, depending on how far down that path I get.

             I will have to be both father, and mother with all things "house" as well.

             All the things we have shared responsibility for, for 22 years, will be mine for 
             the doing.  On top of work and school and grief and children and life.

             (And you wonder why I keep threatening to go off the deep end? LOL)

             I could go on and on--but needless to say that both the present AND the future
             make me feel as if I will be exhausted for the rest of my life.

             It makes me tired thinking about it.   To make matters worse, sleep comes
             fitfully most days now anyway.

             To take care of myself, I try and make time to exercise every day.  I try and
             do as many "normal" things as I can, while I still can.

             There will come a time when, without ANY training as a nurse, I will become a full              time nurse to my husband.  A job I dread.  I do not like ANYTHING about                          nursing.

             Everything else will fall away except constant care for Kyle.

              Life.  Kids.  Work.  School.  Chores.  Laundry.  Yard work.  Reality.  All gone!

             Twenty four/Seven just care for a husband.

             I'm not sure if people realize how consuming this will be.  I watched my mom
             do this for my dad, when he died.  It was not pretty, or fun. 

              If you have no experience with this, you cannot even begin to imagine.

              Nor do you want to imagine.

              Hard to imagine now.  Awful and horrible to imagine now.

             So, for now, I won't imagine it.

             But there are moments I catch a glimpse...when the husband I've known forever, 
             who was never tired, takes 3 naps in a day.  When he gets pooped working in the
             yard for a while and normally he could go for days straight without blinking.

             Maybe it will sneak up slowly on us or maybe it will broadside us--time will tell.

              But someday it will get 'bad' again.  And then worse.  And then?

              Unimaginable.

              In some ways I honestly don't know if MY life will ever be "normal" again--
              it's hard to imagine it will be...but who knows?

              This is never ever ever ever where I thought it would be heading.

              Sorry, these answers were kind of depressing today.  But it's what I've got!
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