Sunday, September 28, 2014

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 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 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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