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.
Hugs and peaceful wishes to you all.
ReplyDeleteI've been reading your posts from day 1 - since you first wrote on the CC.org website. I come here daily, always hoping for positive news, and this... it makes me so sad. I know how it is to watch a parent whither from this horrible disease, and my heart breaks for all of you. I remember the cold... an electric blanket was Dad's favorite thing in the world... worth investing in. I remember the exhaustion, and I remember the quiet voice. I'm so sorry that you are all going through this. I wish nothing more for you all then more time, and more memories. Have Kyle read a few of those recordable books for you and the kids. I still love hearing his voice. Dad waited too long though, and it's not quite HIS voice reading those books. The Night Before Christmas is one we listen to every year as a family.
ReplyDeleteThinking of you, and sending strength and positive thoughts.
Jen S.
Oh Dorien, my heart breaks for all of you. I have never heard anyone say watching someone die from cancer is beautiful. I watched it with my own father, and it was one of the most horrible things I've ever had to witness. I can't even begin to think about knowing what it's like to slip your shoes on...even for a moment. The difficult thing is that you watch them slowly deteriorate in front of your eyes, and there is nothing you can do. The actual death seems to occur as they are still alive. I know Kyle always says, "I'm not dead yet." And he isn't. Nor was my father. I can remember holding on to the marginal bits of good news, the tiniest improvements, the things he accomplished that once were so simple that soon became milestones. But I held fast to them and to him with all of the strength and love my heart could muster, as I have watched you and your family do for so many months. Because my dad was still there for me, and Kyle is still here for you and your family, to love and nurture and talk to and touch. In spite of the how horrific those days were, I cherish even those awful memories, because he was still here. I am so sorry that you and Kyle and the kids are having to endure this. As Jen said, I also wish you and your family more time and more memories. Time to hang on to him, to hug him, to hear his voice...and for him to do the same with you. Cancer is a cruel, awful demon which nobody deserves to battle. I am so, so sorry. <3
ReplyDeleteGinger Christensen