Friday, March 23, 2012

{IL2-Round 1}

we made it.
1 week onto our first course with IL-2.

If you follow on facebook you know that
this week didn't really go as planned.
It's been rough.
I really feel the need to document the week,
but it's all a little blurry...
so bear with me.

We drove on a very small
amount of sleep Monday morning through
the canyon---that was covered in snow.
That should have been our first clue that
it was gonna be a little bumpy...

Once we got there we were surprised at how
relaxed everything was.
We dosed in our room for a bit before
they came and put a picc line in.
(Note to self: Do not watch next time.)

Then the Doctors and Nurses started coming in
and they started drawing labs before we could start.
Then they hooked him up to his pre-meds....
And his tree looked like this.
I was in awe when I took this picture of how much
crap was going into him,
and sadly,
by the end of the week there
was quite a bit more.

Then just after 1:00 they started the first dose.
This tiny bag is the IL-2.
It only takes 15 minutes to drip.
I still can't believe all the havoc this
small bag does to your body...
It's astounding to me.
I'd mentioned before that they said the side
effects were like a superflu. We were picturing a lot
of throwing up type symptoms.
But our experience was different then that.

The nurses explained that the worst side effect for
most people is rigors. Severe and uncontrollable
shaking. And it usually happens about 2 hours
after each dose.

The first dose was fine really.
He felt a little off maybe,
but otherwise fine.

The Doctors assured us that was normal
and the effects get worse with each dose.

They dosed him again that night at 10:00
and he seemed to do fine during the night,
but at some point he rigored, but I can't remember
when, or for how long.
I do know that it wasn't awfully terrible,
and he handled it well.

Dose 3 happened the next afternoon,
and this is when we started to understand the hell
that is IL-2.
He started rigoring right at 2 hours after this dose
and it was very hard on his body.
They gave him demoral and it kicked in
pretty quickly helping to control the
rigors, but then he had his first bout
with nausea and threw up.

And then he slept a pretty painful sleep.

The take blood after each dose
and run labs constantly throughout the
day. They found his kidney function wasn't
looking great so we spent the rest of the day
feeling a little blue that he wouldn't be able to dose
again that night,
and we were tired.
And bored.
And tired.
So tired.

Around 11 they decided that his labs looked
ok, and dosed him up again.

Dose 4 is what I call the dose from hell.
And I wish I could forget what it was like-
because it was awful.

The drip ended at 11:30 and I knew
he would rigor by 1:30ish, so I stayed
awake and watched him.
And right on the dot the rigors started.

The nurse came in very quickly and gave him
a double dose of demoral.

And they didn't stop.

If you haven't seen anyone rigor,
it's hard to explain.
It's unlike anything I've ever seen.
It's not just a little shaking,
the bed is moving with him because he's shaking
so hard. And meanwhile it's doing a number
on all of his muscles, and his chest.
(And his rib, naturally).

And it messes heavily with his heart
and blood pressure.
Instead of the flu symptoms we were imagining,
it just straight up tried to kill his organs,
and give him a heart attack.
It was terrifying.

The entire week his heart rate was high.
But during this particular bout it was anywhere from
For a little over an hour he was full on rigoring.

And it was honestly like a scene from
Grey's Anatomy.

The nurses were freaking out and
calling the Doctors about what to
do because his heart was really heavily stressed.
And another nurse was dosing him
with every-
she could possibly find.

And I was just standing there helpless.
Man, it was rough.
I felt so awful that he was going through it all.

Finally after all of that
they were able to calm him down
and he was able to sleep.

And I found a bathroom to cry in.

And I crawled in bed at 4:30 am.

And still feel in shock from watching it.
Trav, at least, doesn't remember it well.
And I'm glad he doesn't because he gets to do
it all over again.

The next morning the team of Doctors we
worked with each morning said things like
"We didn't expect him to go downhill so fast."
"Those side effects were much more severe then we saw coming."

His kidney wasn't functioning well.
As well as his liver.

So we just sat around the next day hoping for it to
improve and letting them give him any, and all,
meds they thought would help.

At one point they decided to do an ultrasound
to see if there was a blockage in the kidney.

They thought they had found one,
and decided to put a stint in so he'd
have better kidney function, so maybe
we could dose again.

They were very weary about damaging
his kidney-cause it is the only one he has...
smart thinking, I think.

He went in for surgery Thursday
afternoon, and when the surgeon
got in there he saw that instead of a blockage
there is a cyst in his kidney.

So basically we wasted that day,
and put Trav though an unnecessary
surgery. That night he experienced
some pretty awful back spasms and was
in a lot of pain.

They came in hours later
and said his kidney function was
improving quite a bit
(probably due to the medicine they were giving him).
But that his liver was looking pretty bad.

And they decided to stop dosing him for the week.

We are bummed.
We wanted 10.
We got 4.

It's not ideal.
But we all think he had
some sort of infection heading in
to the week, and it made it harder on him
then was necessary.

The amount you get is important,
making one Dr feel that this medicine
is 'too toxic' for trav's body to handle.
But he wants to at least try again in 2 weeks
and hope we can get 5 in.

Another Dr. said that while
the number of doses is important,
side effects are more important,
and he had those!

We were able to come home today
around 1 and have been napping on and off
since then. We are both exhausted.

Trav's feeling ok.
Really tired,
And really swollen, (another side effect)
and hooked up to oxygen for a few days,
but feeling ok.
The liver should fix itself and
he's on some antibiotics
and we are both just praying that he
can start to feel himself again.

We are planning on taking it easy this
weekend and getting some strength back for T.

I'm terrified to fall asleep tonight
and fairly certain I'll be dreaming of
rigors, and lots of beeping machines.

So nice to be home!
So nice to see our girls!
So grateful to our visitors,
prayers, texts, emails, gifts, messages
and phone calls.

We have so much support.
We love and appreciate you all.
Keep praying for Travis.
I find him worth praying for.
He's amazing, and I'm kinda proud of him.
He really needs to feel well before we go back.
They are worried he has an infection,
but they've looked everywhere
and just can't find anything.

Love to all.
And we are off to bed.


Brittney said...

My dear Hay, I am speechless. You are constantly in my thoughts and especially my prayers. I pray you will feel arms around you to carry you when you feel like you just don't have another ounce to give. You are incredible. Both of you. So much love comin' your way from me.

Bre said...

I think you are amazing, you and Trav are! I am so sorry the week didn't go as planned! We continue to pray for you always because your right, Trav and you both are worth it!.. Every bit!

Tasha said...

My heart aches for you, Travis and your girls! I can't imagine what you are going through on so many levels. You both are an inspiration and so so strong. My prayers are with you and your family. Thanks for keeping us all posted! Get some rest...

Amber Culp Family said...

What a horrible week you got to check off your list. You guys are amazing, I stand in awe at your strength! Thank you for the update, it couldn't have been easy to write. We love you guys!

The Falkers said...

My heart hurts reading your post. I wish I could make it all go away for you. Your family is constantly on my mind, in my prayers and in my heart. I am so sorry things got complicated and I pray things can go better in two weeks for the next go around. Sending love and healing thoughts your way!!

Jules said...

Hey Travis, I've been keeping up on you thanks to Hayley & her great blogs. So sorry you had to go through rigors! And so many times. Some of the chemo we give causes this & I know how hard it is to watch, not to mention what you went through. It leaves the pt feeling exhausted. I'm sure you have great people taking care of you, but if you need anything CALL, or text, you have my number.
Julie (one of your favorite nurses, right?)

Anonymous said...

Dear neighbors, glad you are home and hope that you'll find peace and rest within your own sweet walls. All of us are praying for you...saw the cute little girls on Studio 5, your eternal family is a special one.

Superlace Mom said...

Oh my goodness!!! My heart is aching for you right now. I only can send my prayers to you and your dear Travis. I pray that the Lord will give you the strength you need to endure. You both are so strong and amazing people. I am so sorry for all that is happening to your sweet family. Thinking of you so often and sending all the prayers I can offer your way! Luv ya Hay, Lacey