Here's the thing.
This is a post that has been on Kyle's mind
for a long time.
Since the passing of one of our Cholangio friends
this past year, in fact.
He started a post once that was raw and angry
and we never hit publish.
It didn't feel right, yet.
I have written and re-written a similar post
without finding the right words over and over
and hit then erase.
Every single time.
Erase.
Erase.
Erase.
Today I was reading some quotes from a favorite book,
The Fault in our Stars, which happens to be a beautifully
tragic book about dying from cancer.
As luck would have it, it strikes a chord with
our hearts right now.
(Imagine that?)
The quote that set my brain to thinking once again
about this subject matter was as follows...
"That's the thing about pain. It demands to be felt."
To.be.felt.
Felt.
And that feeling stuff?
It's some messy, awful, hard stuff.
What Kyle wrote about so many months ago, and
what I have wrestled with so often in my tortured heart
is simply that.
Feeling pain.
Feeling the pain.
Feeling.
So often in death, that is accompanied by pain--
a raw, deep, cutting, leave you breathless kind of pain--
we try and diminish the pain.
To make it not real.
In order to NOT feel.
But this pain? It demands to be felt.
There is no way around it.
There are no magical words, or religious phrases,
or trite cliches that truly take that pain away.
It is still there, inside of us, NEEDING to felt.
We cannot go over, or under, or around the pain.
The ONLY way to the other side is
THROUGH it.
Through the pain.
By saying things like "well, they are in a better place
now" or "at least they are out of pain" or
"Jesus just needed another angel" or, or, or....
In so doing, in saying these things,
we are denying the very existence of what cannot be
negated or nullified or voided.
Nor should it be.
Kyle has felt an anguished, painful, resentment when
someone has passed away and the only responses people
give are something that tries to diminish the pain
he has felt in his heart.
(He's actually a big fan of the custom they have in
Judaism of the rending of ones clothes when they
hear the news of the passing of a loved one.
What a beautiful thing to physically rip away a part
of yourself, metaphorically speaking via the clothing,
in anguish and grief. Because lets be honest,
that's what it feels like. Like a piece of your heart
has been ripped from your soul and body and life.)
Here's the thing.
We know people are trying their best to offer condolences,
and comfort and love--but in trying to take away something
that must be traveled through, there is a great
disservice being done when we immediately offer
empty promises and cliche phrases.
I believe that everyone out there has every right
to feel whatever it is they feel in this process.
There are no two ways about it, we all do this differently.
Kyle just wanted to share how HE feels, how I feel.
"That's the thing about pain. It demands to be felt."
I have no peace in the thought of my husband dying.
I guess that may surprise some people.
(But probably not if you've been reading all along)
I don't want my ears to be filled with cliches
about how much better off Kyle will be when he's gone.
Kyle knows that I will probably want to punch people
when they tell me and my children all the things
that well meaning people will tell me and my children.
The thing is, we want him here.
Selfishly and fiercely and stubbornly and
with our entire bodies and hearts and souls,
we want him here.
Not one single thing (not ONE SINGLE THING) you
say will make it any better that he's leaving his
4 kids and me.
Not one thing.
We will all still have to travel through the pain
and heartache that is calling our names.
Slowly working our way to the other side of it.
I am certain that though the task will be long
and arduous, with many many many bumps along the way,
we WILL come through the pain to honor Kyle.
So I guess what we're doing here is giving you
all fair warning.
Do not try and diminish our hearts.
Do not try and diminish our memory of Kyle.
Do not demand that we not feel.
We honor him with our pain.
(The greater the love, the greater the loss. Right?)
And when the time comes, the loss will be profound.
And we plan to feel it.
And that's the message.
The message Kyle wanted to share so many many months ago.
The message of pain and love and loss.
That's the thing.
That's what we've got for today.
Saturday, December 13, 2014
Tuesday, December 9, 2014
Tears: Take Two
Yesterday as we sat in Room 7, in clinic 1A of
the Huntsman Institute and were told the news,
I watched as Kyle's eyes filled with tears
when he heard, again, how his body was really doing.
Now one thing you have to realize, is that at
the Huntsman they like to cover all their bases.
So in the room (besides Kyle, myself, his mother
and his sister) were several other people.
Those people included Dr. Sharma, his PA Joan,
Angelique our social worker, the pharmacist to
review Kyle's meds and see what to add or take off,
and Mallory the RN who makes lists and appointments
and calls.
One little exam room is always pretty full.
Sometimes it is a bit overwhelming.
But yesterday I watched Kyle's face and saw his eyes
fill with tears and Angelique told me to grab
him some tissues.
And I knew he wasn't crying about what we already
had been told, I knew his heart was tender about
something else as he looked around the room filled
with people.
-----------------------
Last week Dave, Kyle's best friend was here, and he leaned
over and kissed Kyle on the forehead before he left with
his typical "Love ya buddy."
I walked Dave out and he commented on Kyle's emotions,
assuming sadness at what was transpiring.
-----------------------
I tried to explain that the tears are not out of
sadness, although he is sad, but more out of tenderness.
A tender heart that has been stripped away of
everything else that doesn't matter anymore.
A heart that only sees and feels the love and goodness
from those around him who are trying to help make
his journey, from here to there, a more peaceful thing.
Kyle isn't crying because he is sad--he is crying
because he feels what all the rest of us forget about
most of the time.
He is crying because he knows the secret about what
is really most important in this life.
He's lived it for 21 months. He has been the recipient
for 21 months. His heart is full, of love.
--------------------------
There are no magic answers about what will happen in
the days and weeks ahead, and to be quite honest, there
are no magical answers about what comes next for Kyle.
But what we do know, and what Kyle knows better than
anyone, is that love is the most magical healing
soulful real thing in this world.
It's a lesson that we hope to not soon forget, for
if we do? This has all been in vain.
----------------------------
And so yesterday when Kyle's tears were falling in Room
7 of Clinic 1A--it was not out of sadness--but out
of gratitude for doctors and nurses and MA's and phlebs
and pharmacists and ladies who check him in every week
at the front desk and social workers and lab workers
and a whole slew of people who have been fighting for him
to live for 21 months.
People who also had real tears in their eyes because
they loved a man named Kyle and wanted so very desperately
for his journey NOT to nearing it's end.
People with degrees longer than my arm, who have diligently
searched for any and every way to "save" this 46 year
old man to give him just a little bit more time with
those he loves.
Because they love and care in spite of overwhelming
odds against survival.
And so if you see Kyle and he has tears in his eyes
(which is most likely)--just know that it is because
he knows the real meaning of the one word, the word
that matters more than anything else...
The word LOVE.
And that's what I've got for today.
the Huntsman Institute and were told the news,
I watched as Kyle's eyes filled with tears
when he heard, again, how his body was really doing.
Now one thing you have to realize, is that at
the Huntsman they like to cover all their bases.
So in the room (besides Kyle, myself, his mother
and his sister) were several other people.
Those people included Dr. Sharma, his PA Joan,
Angelique our social worker, the pharmacist to
review Kyle's meds and see what to add or take off,
and Mallory the RN who makes lists and appointments
and calls.
One little exam room is always pretty full.
Sometimes it is a bit overwhelming.
But yesterday I watched Kyle's face and saw his eyes
fill with tears and Angelique told me to grab
him some tissues.
And I knew he wasn't crying about what we already
had been told, I knew his heart was tender about
something else as he looked around the room filled
with people.
-----------------------
Last week Dave, Kyle's best friend was here, and he leaned
over and kissed Kyle on the forehead before he left with
his typical "Love ya buddy."
I walked Dave out and he commented on Kyle's emotions,
assuming sadness at what was transpiring.
-----------------------
I tried to explain that the tears are not out of
sadness, although he is sad, but more out of tenderness.
A tender heart that has been stripped away of
everything else that doesn't matter anymore.
A heart that only sees and feels the love and goodness
from those around him who are trying to help make
his journey, from here to there, a more peaceful thing.
Kyle isn't crying because he is sad--he is crying
because he feels what all the rest of us forget about
most of the time.
He is crying because he knows the secret about what
is really most important in this life.
He's lived it for 21 months. He has been the recipient
for 21 months. His heart is full, of love.
--------------------------
There are no magic answers about what will happen in
the days and weeks ahead, and to be quite honest, there
are no magical answers about what comes next for Kyle.
But what we do know, and what Kyle knows better than
anyone, is that love is the most magical healing
soulful real thing in this world.
It's a lesson that we hope to not soon forget, for
if we do? This has all been in vain.
----------------------------
And so yesterday when Kyle's tears were falling in Room
7 of Clinic 1A--it was not out of sadness--but out
of gratitude for doctors and nurses and MA's and phlebs
and pharmacists and ladies who check him in every week
at the front desk and social workers and lab workers
and a whole slew of people who have been fighting for him
to live for 21 months.
People who also had real tears in their eyes because
they loved a man named Kyle and wanted so very desperately
for his journey NOT to nearing it's end.
People with degrees longer than my arm, who have diligently
searched for any and every way to "save" this 46 year
old man to give him just a little bit more time with
those he loves.
Because they love and care in spite of overwhelming
odds against survival.
And so if you see Kyle and he has tears in his eyes
(which is most likely)--just know that it is because
he knows the real meaning of the one word, the word
that matters more than anything else...
The word LOVE.
And that's what I've got for today.
Monday, December 8, 2014
Numb
Last night our new reality hit me very hard.
I just sat and cried and cried.
Josh told me it was okay (what else could he say?
except that perhaps I am a crazy lunatic....which is
ALSO the honest truth)
Grace sat and held me for I don't know how long.
And let tears pour down my face and sobs release
from my body and anguish spill from my heart.
We have had a steady stream of visitors, people who
love Kyle and want to say "good-bye".
It's been a long, hard, good, uplifting, terrible,
frightening, rewarding, positive, awful week.
Yes, it has been all of those things.
And more.
We are so utterly and completely overwhelmed at ALL
the acts of kindness being done for our family.
This is your "THANK YOU" ...you have been warned that it
is entirely impossible to write a personal thank you to
everyone, even though I would love to, I don't have the
time or energy to do so.
I hope you will forgive me.
My mother always taught writing "Thank You's" was a must.
And it pains me not to do so.
-----------------------
Today Dr Sharma was back in the office after 3 weeks
in India and a week of personal illness.
He confirmed the ugly truth we heard last week
and said Kyle had "4-6 weeks left."
His liver and kidneys and body have had enough.
Damn this cancer to hell for stealing my 46 year old
husband and the father of our 4 children.
Of course, Kyle could take a hideous turn for the worse
and die Friday (which we pray isn't the case)
OR he could last a bit longer than "4-6 weeks".
There are obviously no "exacts" with this whole dying
business. But this is where we are headed, no ifs,
ands or buts about it now.
Kyle had a lot of tears in the office today and he made
up for the ones I had last night.
My heart feels like it is literally splitting open--
and so more often then not I slam it shut and become numb.
It is entirely too painful to feel, all of this, all
of the time.
----------------------------
I believe if we had one wish, one prayer, one thing
we would sell our souls for, it would be that Kyle
makes it past Christmas, so that we don't have the pain
and anguish of reliving his death every year at Christmas.
I cannot imagine a worse fate, although I do believe we
have very little choice in the matter...and so what
will be, will be.
------------------------------
We thank you all again for such an outpouring of kindness
to our family.
Love, it truly is what makes the world go 'round.
That's what we've got people, that's what we've
got for today.
I just sat and cried and cried.
Josh told me it was okay (what else could he say?
except that perhaps I am a crazy lunatic....which is
ALSO the honest truth)
Grace sat and held me for I don't know how long.
And let tears pour down my face and sobs release
from my body and anguish spill from my heart.
We have had a steady stream of visitors, people who
love Kyle and want to say "good-bye".
It's been a long, hard, good, uplifting, terrible,
frightening, rewarding, positive, awful week.
Yes, it has been all of those things.
And more.
We are so utterly and completely overwhelmed at ALL
the acts of kindness being done for our family.
This is your "THANK YOU" ...you have been warned that it
is entirely impossible to write a personal thank you to
everyone, even though I would love to, I don't have the
time or energy to do so.
I hope you will forgive me.
My mother always taught writing "Thank You's" was a must.
And it pains me not to do so.
-----------------------
Today Dr Sharma was back in the office after 3 weeks
in India and a week of personal illness.
He confirmed the ugly truth we heard last week
and said Kyle had "4-6 weeks left."
His liver and kidneys and body have had enough.
Damn this cancer to hell for stealing my 46 year old
husband and the father of our 4 children.
Of course, Kyle could take a hideous turn for the worse
and die Friday (which we pray isn't the case)
OR he could last a bit longer than "4-6 weeks".
There are obviously no "exacts" with this whole dying
business. But this is where we are headed, no ifs,
ands or buts about it now.
Kyle had a lot of tears in the office today and he made
up for the ones I had last night.
My heart feels like it is literally splitting open--
and so more often then not I slam it shut and become numb.
It is entirely too painful to feel, all of this, all
of the time.
----------------------------
I believe if we had one wish, one prayer, one thing
we would sell our souls for, it would be that Kyle
makes it past Christmas, so that we don't have the pain
and anguish of reliving his death every year at Christmas.
I cannot imagine a worse fate, although I do believe we
have very little choice in the matter...and so what
will be, will be.
------------------------------
We thank you all again for such an outpouring of kindness
to our family.
Love, it truly is what makes the world go 'round.
That's what we've got people, that's what we've
got for today.
Sunday, December 7, 2014
Wednesday, December 3, 2014
Here's the scoop, for now.
First we have to say THANK YOU again for the love that
has come our way since the devastating news (that we always
knew was coming--but still....).
We cannot begin to express enough thanks ever to everyone
who has loved us in big and little ways.
Seriously floored and grateful beyond words.
I loved watching Mark in his maid outfit steam clean our
bathrooms...
and Uncle Dave bend over and give Kyle a kiss on the
forehead.
and Amy listen to me swear and gnash my teeth.
and for treats that have shown up on our doorstep.
and for people hugging and loving my children.
and for dinners that have been brought in.
and for podiatrists that have made house calls.
and for so so so so so many acts of love and kindness.
and for social workers that let me text anytime
and cry into the phone.
and for everyone who is anyone at the Huntsman Institute
who has touched our lives.
and for people who say F cancer for us and with us.
I am so so grateful for a boss who went above and
beyond to make sure I could be home with my husband now.
I am so so grateful for co-workers in the "business
closet" that have truly been my friend and cared
about me and my life and my husband.
-----------------------------------
We are crushed and our hearts are filled with a sadness
so deep and heavy that it consumes us at all the worst
moments.
My kids are the hardest to watch.
Digesting this is a blow, a punch in the stomach.
I have a feeling that will be the case for a long time
to come.
-------------------------------------
Some good news is that I had a boss that worked and
worked until she could find a way to let me have
time off with my husband (since I did NOT qualify for
FMLA until December 23)
Long story short is that *I* can take a leave of absence
for *MYSELF* and be home to take care of Kyle.
That starts on Monday after I finish up some lists
and things to do at work.
---------------------------------------
We know that there are many people who want to visit,
and as I said on Facebook, without being rude, there
need to be parameters for Kyle at this point in time.
Kyle is tired and visiting makes him even more
tired. It is emotionally and physically taxing on him.
That is the honest truth.
Wise words from people who have been through this before
are as follows:
**Please keep visits short (1/2 hour or less)
That's what he has in him for now.
**Please call or text ahead of time and make sure
he's up for it. (If you need a cell number message
one of us on Facebook) This varies from day to
day and hour to hour honestly.
**He is home during the day and also available then.
Again text beforehand to see how he is and if
he's up to it.
**Nighttime is when his pain seems to come on strong
and visits after about 8 PM are too late (I know
we are worse than 90 year old people).
**He would love a text or email as well if there's
something you want to share with him, or want him
to know, or want to say.
**This is also a sacred time for OUR family.
Please be respectful of that time. (No one has
been disrespectful so far in case anyone is worried!)
Thanks again for an outpouring of love and acts of
kindness. I don't even know who to thank for half
of them.
This is our update for today.
has come our way since the devastating news (that we always
knew was coming--but still....).
We cannot begin to express enough thanks ever to everyone
who has loved us in big and little ways.
Seriously floored and grateful beyond words.
I loved watching Mark in his maid outfit steam clean our
bathrooms...
and Uncle Dave bend over and give Kyle a kiss on the
forehead.
and Amy listen to me swear and gnash my teeth.
and for treats that have shown up on our doorstep.
and for people hugging and loving my children.
and for dinners that have been brought in.
and for podiatrists that have made house calls.
and for so so so so so many acts of love and kindness.
and for social workers that let me text anytime
and cry into the phone.
and for everyone who is anyone at the Huntsman Institute
who has touched our lives.
and for people who say F cancer for us and with us.
I am so so grateful for a boss who went above and
beyond to make sure I could be home with my husband now.
I am so so grateful for co-workers in the "business
closet" that have truly been my friend and cared
about me and my life and my husband.
-----------------------------------
We are crushed and our hearts are filled with a sadness
so deep and heavy that it consumes us at all the worst
moments.
My kids are the hardest to watch.
Digesting this is a blow, a punch in the stomach.
I have a feeling that will be the case for a long time
to come.
-------------------------------------
Some good news is that I had a boss that worked and
worked until she could find a way to let me have
time off with my husband (since I did NOT qualify for
FMLA until December 23)
Long story short is that *I* can take a leave of absence
for *MYSELF* and be home to take care of Kyle.
That starts on Monday after I finish up some lists
and things to do at work.
---------------------------------------
We know that there are many people who want to visit,
and as I said on Facebook, without being rude, there
need to be parameters for Kyle at this point in time.
Kyle is tired and visiting makes him even more
tired. It is emotionally and physically taxing on him.
That is the honest truth.
Wise words from people who have been through this before
are as follows:
**Please keep visits short (1/2 hour or less)
That's what he has in him for now.
**Please call or text ahead of time and make sure
he's up for it. (If you need a cell number message
one of us on Facebook) This varies from day to
day and hour to hour honestly.
**He is home during the day and also available then.
Again text beforehand to see how he is and if
he's up to it.
**Nighttime is when his pain seems to come on strong
and visits after about 8 PM are too late (I know
we are worse than 90 year old people).
**He would love a text or email as well if there's
something you want to share with him, or want him
to know, or want to say.
**This is also a sacred time for OUR family.
Please be respectful of that time. (No one has
been disrespectful so far in case anyone is worried!)
Thanks again for an outpouring of love and acts of
kindness. I don't even know who to thank for half
of them.
This is our update for today.
Monday, December 1, 2014
Tears
There is no way to make this news any better.
We spent the day at the Huntsman ER and in one week
Kyle's numbers have gone from "okay" to "terrible."
But this is what I've been saying all along with this
cancer----on the turn of a dime it can be bad, done, over.
His liver isn't working and so his kidneys aren't working.
In short, his kidneys are failing.
No. There isn't anything they can do but try and keep
him comfortable.
The doctor today said "a few weeks to a month or so...."
So it's pretty much day to day now.
Does it seriously have to be during the Holidays?
It does I guess.
That's the short story.
There are a lot of tears here at our house today....
And it's what I've got for today.
Oh ya,
That and F Cancer!
.JPG)
We spent the day at the Huntsman ER and in one week
Kyle's numbers have gone from "okay" to "terrible."
But this is what I've been saying all along with this
cancer----on the turn of a dime it can be bad, done, over.
His liver isn't working and so his kidneys aren't working.
In short, his kidneys are failing.
No. There isn't anything they can do but try and keep
him comfortable.
The doctor today said "a few weeks to a month or so...."
So it's pretty much day to day now.
Does it seriously have to be during the Holidays?
It does I guess.
That's the short story.
There are a lot of tears here at our house today....
And it's what I've got for today.
Oh ya,
That and F Cancer!
Sunday, November 16, 2014
Running Errands
One of my favorite things to do with Kyle is to run errands.
I know that may seem like a stupid thing, but to me it's not.
For many years we have loaded up the car now with just ourselves.
During the cold months, first it's a stop at the Holiday Oil for
some hot chocolate (they have the VERY best hot chocolate!)
or the drive through at McDonalds for a large $1 Diet Coke
to share.
We have a few hours all to ourselves, alone, talking,
sharing stories, tales of the week, laughing, figuring
out what to do with our children or what to put on the family
menu for the week.
It's time that is rewarding and good and fulfilling.
It's US and it's alone.
Yesterday Kyle told me I needed to do a blog post
on what it's like to watch the person you love
decline with a terminal illness.
He told me to be honest.
Well, quite simply the whole post could be done in
these two words:
IT SUCKS!
But then we ran errands and this time everything was different.
But it has been for a while now.
And today I watched my husband, like to do quite often
now, and I wept and wept.
And it still sucks. Because he's not "Kyle" anymore.
He's turning into someone else slowly right before my eyes.
And I don't like what I'm seeing. It breaks my heart.
But there's no way to stop it, or change it or make it go away.
Even though we got "goodish news" at the doctor Monday,
in truth very little has changed.
Very little has changed.
The world goes on spinning, everyone goes on living
and we stay stuck in this hell we call cancer.
I'm so tired of cancer.
As is he.
So very very tired of cancer.
I would give anything to just run far far away from
it for 24 hours, but I can't and so I wake up and just
keep moving forward.
The very best that I can--which I know isn't very
good, or even nearly good enough--but it's all I have
inside me, and so I do it.
As we ran our errands this weekend Kyle, the new Kyle,
was so tired he could barely get through Costco without
passing out. He was too tired and weak to keep going.
He leaned on the cart, his yellowish eyes cast down
and his quiet voice telling me he didn't feel good.
You see, he's weak.
He throws up a lot lately and isn't super hungry.
He coughs too.
He has a hard time sleeping.
He lost weight, way too much weight.
Which is good if you're on a diet, but bad if you're
on cancer.
He's always cold.
One night last week I founding him whimpering on
the bathroom floor in front of the heater vent,
huddled in sweats and sweatpants
and two pair of socks--wrapped in a blanket--begging
me to turn up the heat so he could just get warm.
He's always cold to the bone.
He has to drain ascites "out" and do IV lines here at
home "in"....to try and balance to fluid loss, and
low sodium and dehydration.
He had an infection that has required 3 weeks worth
of antibiotics.
He used to work 40+ hour weeks and then come home
and spent hours in the yard, or building new things in
our house.
He was NEVER tired or weak or sick. He wasn't the slightest
bit frail.
Now he's always tired and weak and he's extremely frail.
Even his voice is quite.
His loud booming voice--the voice that we ALL used to
"shush" on a daily basis...now it's so quiet we all have
to ask him to repeat himself. Because we can't hear him.
And the cold...
He's always always always cold.
And so now errands are slow, Kyle walks like an old man.
I have run for 25 years to keep up with him and now my
pace has crawled to slow and he STILL can't keep up with
me.
I'm not sure we really got "goodish news" at the doctor
on Monday. I watch my husband every day and he's
going the wrong direction to me. But what do I know?
I'm not a doctor.
Cancer blurs the lines between black and white and I
wonder, in truth, what it is that we're fighting for
anymore.
And I'm tired of fighting and I'm tired of watching
Kyle spiral lower and lower. And he's tired, so very
tired--even his "good face" ("I'm fine" "everything is fine")
has changed its tune over the past few weeks when people ask.
This has been the hardest thing I have ever done
and I know we're not done yet.
Our family has been bickering a lot lately, you know,
because of the stress of watching Kyle. We can all
see it and feel it and we ALL hate it.
The cancer, and what it's doing to him.
And so we take it out on each other because it's
the only thing we know how to do. And we all
know there is love left behind the snappy words, yet
they still fly out of our mouths unbidden.
Because we hate it.
The cancer.
And what it's doing to our dad, and father, and husband.
I've heard people say that watching someone they love
die from cancer is the most beautiful thing they've seen.
I beg to differ.
It is a kind of torturous hell that you can never wake
up from.
It steals their very life and breath and soul.
It leaves them a shadow of who they once were.
I find it horrifying and frightening and sad.
Kyle told me to be honest, and I have been.
But I've only told the tiniest amount so you could see,
a small glimpse into our heart and home and soul.
There is so much more I could share, but I won't.
I would give anything to still chase Kyle around stores
and run after him as he did projects around the house--
but those days are done. That chapter is closed for us now.
So he takes my arm and I wait for him to slowly
follow along with me and we keep moving ahead to
that final stop.
Whenever it may be.
And I inside I scream and cry and fight it every step of the
way, knowing it's coming closer and closer and there's
no stopping it.
I hate cancer...I hate it I hate it I hate today.
Like a two year old having a temper tantrum laying
on the floor of the grocery store because my mom won't
buy me a treat kind of tantrum.
That's what I've got.
I hate cancer.
I know that may seem like a stupid thing, but to me it's not.
For many years we have loaded up the car now with just ourselves.
During the cold months, first it's a stop at the Holiday Oil for
some hot chocolate (they have the VERY best hot chocolate!)
or the drive through at McDonalds for a large $1 Diet Coke
to share.
We have a few hours all to ourselves, alone, talking,
sharing stories, tales of the week, laughing, figuring
out what to do with our children or what to put on the family
menu for the week.
It's time that is rewarding and good and fulfilling.
It's US and it's alone.
Yesterday Kyle told me I needed to do a blog post
on what it's like to watch the person you love
decline with a terminal illness.
He told me to be honest.
Well, quite simply the whole post could be done in
these two words:
IT SUCKS!
But then we ran errands and this time everything was different.
But it has been for a while now.
And today I watched my husband, like to do quite often
now, and I wept and wept.
And it still sucks. Because he's not "Kyle" anymore.
He's turning into someone else slowly right before my eyes.
And I don't like what I'm seeing. It breaks my heart.
But there's no way to stop it, or change it or make it go away.
Even though we got "goodish news" at the doctor Monday,
in truth very little has changed.
Very little has changed.
The world goes on spinning, everyone goes on living
and we stay stuck in this hell we call cancer.
I'm so tired of cancer.
As is he.
So very very tired of cancer.
I would give anything to just run far far away from
it for 24 hours, but I can't and so I wake up and just
keep moving forward.
The very best that I can--which I know isn't very
good, or even nearly good enough--but it's all I have
inside me, and so I do it.
As we ran our errands this weekend Kyle, the new Kyle,
was so tired he could barely get through Costco without
passing out. He was too tired and weak to keep going.
He leaned on the cart, his yellowish eyes cast down
and his quiet voice telling me he didn't feel good.
You see, he's weak.
He throws up a lot lately and isn't super hungry.
He coughs too.
He has a hard time sleeping.
He lost weight, way too much weight.
Which is good if you're on a diet, but bad if you're
on cancer.
He's always cold.
One night last week I founding him whimpering on
the bathroom floor in front of the heater vent,
huddled in sweats and sweatpants
and two pair of socks--wrapped in a blanket--begging
me to turn up the heat so he could just get warm.
He's always cold to the bone.
He has to drain ascites "out" and do IV lines here at
home "in"....to try and balance to fluid loss, and
low sodium and dehydration.
He had an infection that has required 3 weeks worth
of antibiotics.
He used to work 40+ hour weeks and then come home
and spent hours in the yard, or building new things in
our house.
He was NEVER tired or weak or sick. He wasn't the slightest
bit frail.
Now he's always tired and weak and he's extremely frail.
Even his voice is quite.
His loud booming voice--the voice that we ALL used to
"shush" on a daily basis...now it's so quiet we all have
to ask him to repeat himself. Because we can't hear him.
And the cold...
He's always always always cold.
And so now errands are slow, Kyle walks like an old man.
I have run for 25 years to keep up with him and now my
pace has crawled to slow and he STILL can't keep up with
me.
I'm not sure we really got "goodish news" at the doctor
on Monday. I watch my husband every day and he's
going the wrong direction to me. But what do I know?
I'm not a doctor.
Cancer blurs the lines between black and white and I
wonder, in truth, what it is that we're fighting for
anymore.
And I'm tired of fighting and I'm tired of watching
Kyle spiral lower and lower. And he's tired, so very
tired--even his "good face" ("I'm fine" "everything is fine")
has changed its tune over the past few weeks when people ask.
This has been the hardest thing I have ever done
and I know we're not done yet.
Our family has been bickering a lot lately, you know,
because of the stress of watching Kyle. We can all
see it and feel it and we ALL hate it.
The cancer, and what it's doing to him.
And so we take it out on each other because it's
the only thing we know how to do. And we all
know there is love left behind the snappy words, yet
they still fly out of our mouths unbidden.
Because we hate it.
The cancer.
And what it's doing to our dad, and father, and husband.
I've heard people say that watching someone they love
die from cancer is the most beautiful thing they've seen.
I beg to differ.
It is a kind of torturous hell that you can never wake
up from.
It steals their very life and breath and soul.
It leaves them a shadow of who they once were.
I find it horrifying and frightening and sad.
Kyle told me to be honest, and I have been.
But I've only told the tiniest amount so you could see,
a small glimpse into our heart and home and soul.
There is so much more I could share, but I won't.
I would give anything to still chase Kyle around stores
and run after him as he did projects around the house--
but those days are done. That chapter is closed for us now.
So he takes my arm and I wait for him to slowly
follow along with me and we keep moving ahead to
that final stop.
Whenever it may be.
And I inside I scream and cry and fight it every step of the
way, knowing it's coming closer and closer and there's
no stopping it.
I hate cancer...I hate it I hate it I hate today.
Like a two year old having a temper tantrum laying
on the floor of the grocery store because my mom won't
buy me a treat kind of tantrum.
That's what I've got.
I hate cancer.
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