Time for a little update....

School started and I've been neglecting my blog.

I literally work all day and then do homework til
bedtime and then start over again the next day.

Not joking.  I have zero free time until the weekend.

Full time job + full time student = one tired mom.

(on top of cancer, husband, kids and life...you know all 
of that jazz that other people do.)

Anyway, Kyle (not unexpectedly) has had a few hiccups
in the road with this ()#&@&(&% 5FU chemo regiment
in the past few weeks.

It's not a chemo people can stay on super long even
when it's working because it reeks havoc on white cells
and platelets...  basically the two things that help
a body fight infection and clot blood (among other stuff).

(for example Kyle has had a cold that has lingered for
close to 5 weeks, his body does not have enough cells
to fight the infection and kill it right now due to
his low counts.   He is someone who should not be in 
big crowds right now--you know, like church, family
gatherings, public schools, stores, etc. due to his
NON ability to fight infection.  We try and keep
him a little quarantined, but he doesn't always listen.)

Kyle went up for chemo after the fabulous "Salsa Sunday"
and his counts were too low for chemo.  They gave him a shot
of Neupogen (which is shot that basically goes into your
body and forces it to create new white blood cells--more
or less--that's all you need to know for this lesson in 
cancer treatment 101.)

A day later he had a good enough count to get chemo.

This is an expected result of this chemo....all the people
we know who have been on it need to start getting these
shots to continue getting the FU.  It's just how
this chemo works.

So when he went in again for chemo last Monday--
his counts were too low and he was told to wait a 
week for chemo.

As our friend Dov says "the only thing WORSE than getting
chemo?  Is not getting chemo!"  

Amen to that!  No chemo = no cancer killing.

So now we had one week late and had been bumped a 
week out.  Not a good trend in our opinion.  

Anyway, I wondered why the DOCTORS, who have been dosing 
people up with this for years, did not foresee this problem
and so in order to keep Kyle on his 2 week chemo schedule
WHY OH WHY did THEY not order labs (blood work) on FRIDAY
so we could know where his counts stood.  If they're
bad they treat him NOW to avoid missing chemo AGAIN
on Monday.  (It seems pretty simple in my stupid mind!)

So to overstep my bounds as a cancer wife, I told Kyle
WE were going to PROACTIVE instead of REACTIVE and call
up to the Huntsman and see if he could get labs done.

On Friday, not on chemo day Monday.  

We were taking matters into our own hands. Sometimes
as a cancer patient you must do this.  So we did.

You know so that he didn't have to miss chemo again on 
Monday since his blood work would probably be low.

Kyle called, they said his entire Doctor staff was out
of the office Friday but the infusion room charge nurse
said "Come on up and I will take care of you."

He went up and guess what????

Lo and behold his counts STILL SUCKED!!! (Imagine that!)

They did NOT rebound from missed chemo last week.
They were STILL bad.  Bad blood = NO CHEMO! (boo hiss)

So the charge nurse found another doctor who could order
a series of 3 neopogen shots this time (one for Friday
Saturday and Sunday).  These are given in hopes that
it will finally boost Kyle's counts in time for chemo
on Monday.

So all weekend we have been stabbing him in the belly
with shots and crossing our fingers his blood multiplies 
with ferocity and replenishes enough for chemo.

These shots basically make Kyle feel like he's been 
hit by a mini bus.  Aching, tired, flu like...an ache 
deep in his bones.  Yup, one more AWESOME thing about 
cancer that he has to endure.

BUT we do NOT want 3 missed weeks of chemo, so endure
it he does.

I'm glad I followed my gut and sent him off to Huntsman
early.  I'm glad we've both researched and learned online
and via other cholangio friends the ins and outs of this
cancer and chemo and treatments. 

We will see if the shots did their job when they retest
blood on Monday.  

Fingers crossed.

There's my update for today.

Say a little prayer for Kyle's blood.  

Today we're celebrating Eliza's 15 birthday, my
nieces wedding shower and keeping Kyle soaking in warm
tubs and under blankets.

That's what we've got for today!

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All You Need Is Love

Salsa Sunday?

It was a smashing success.

I set up oodles of Superman shirts
on a clothes line and had salsa and
chips and candy and treats.

Lawns were mowed and chairs were 
cleaned and then we waited.

And people came.

And came.

And came.

A friend sent a photographer who donates
her time to (terminal) cancer patients and she took a bazillion pictures of the event 
which we can't wait to see.

Our backyard overflowed with people
and love and it was a magical night
celebrating Kyle's milestone.

(Does that mean we're living on 
borrowed time right now?)

I don't know the answer to that.

I don't know how long we get, but I
do know that the love we felt and the
people we hugged filled our souls
so very much.

Thank you for coming.
Thank you for loving Kyle.
Thank you for showing him that he
matters in the grand scheme of this
thing called life.

I've said it over and over and
over again...it's all about love.

It boils down, oh so simply, to 
that one thing.

Love.

Love the people that are in your life.
And let them know.  We don't all have
terminal cancer but you never know
how much time you have and when things
can change.  We spend too much time
worrying about things that don't matter
and we spend too much time being distracted.

Live now, for now.
Love now, for now.

Thank you all (so much) again and again
for making Salsa Sunday a smashing
success.

Thank you.  Thank you.  Thank you.

That's what I've got for today.

One Last Shout Out for Salsa Sunday.....

One last shout out for

Salsa Sunday...

Come celebrate with us

tomorrow from 6 pm til the 

food runs out or we go to bed.

If you want to bring a treat or

something to share?  

Fabulous.

If you want to just show up 

and hug Kyle?

That's fabulous too.

Please come celebrate and

give a shout out to this

guys who's still standing

after 18 months, 1 port surgery,

countless hours of chemotherapy, 

2 rounds of Y 90, several

biopsies, doctor visits

too numerous to count, blood

draws and needle sticks

that are not for the weak-hearted,

vomiting, weight loss, weight gain,

hair thinning, exhaustion, chemo

brain and more...

Through it all he does it with

a good attitude, a heart of gold

and a smile.  I admire his

grace so very much as he's travelled

this road...he's been a fabulous

example of love and strength

and courage to me and the kids.

So lets celebrate a life

that deserves celebrating!

That's what I've got...

They say No News is Good News....

But dang it all!

We HAVE NEWS and it's GOOD NEWS!!

We just got done with Dr Sharma (and I *swear* he
cracked a smile today...it may have been a trick of the
light but I'm pretty sure I saw one!)

and we got the results of Kyle's PET scan he had
yesterday!

That Y 90 is some pretty awesome stuff.

2 1/2 months ago Kyle's liver was starting to 
look like a Christmas tree with all it's glowing
and spots that were lighting up....

TODAY?  Not so much.

The glow-y spots and the lighting up spots?

They are not there so much.

There are a few little lights here and there but
NOTHING like last time.

His lungs have stayed stable as have his lymph nodes.

What does this mean?

It means Y 90 wiped out a bunch of cancer again
and his overnight stay at the Hotel Huntsman on July 23
was worth it.

It means the awful regiment of chemo he's on is
holding everything else steady everywhere else
in his body.

It means...

WE CAN FREAKING CELEBRATE GOOD NEWS 

*AND*

18 MONTHS AND ONE DAY at Salsa Sunday!

Thanks for prayers, good wishes and thoughts, texts
and love....

because per usual it keeps us going.

What have I got today?

I've got a smile right along with Dr. Sharma,
that's what I've got!

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Come join us this Sunday and celebrate.
Salsa Sunday our house, be there or be square.

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