{Another week later}

Again,

we've been home for a week

from our 'vacation' to Huntsman.

We are fans of home.

It's wonderful to be here!

Many of you have sent e-mails wondering

how Travis is feeling.

He's doing OK.

Still battling the raging

fever that wont die.

 And his mornings are rough.

He's battling quite

the case of the 'morning sickness'.

 And his energy isn't all back yet...

but he's getting there.

Each day he goes to work a little earlier.

And I think each night he has a little more energy.

And I really feel like with another week he will

start feeling a bit more like himself again.

Scans are set for May 10th.

And I don't want to even think about it yet.

It's scary.

We are praying for some good changes in the scan.

Cause good changes means 2 more weeks of

living the dream life at Huntsman.

(How sad that we are praying for 2 more weeks of hell!)

If the changes aren't good,

then we choose a different route.

So keep your fingers crossed.

And any other crossable body parts.

We are Eternally grateful to everyone for their kindness to us.

I may never catch up on Thank you cards.

Our dear, dear friends have put this together for our family.

We have no words to express how awed we are

for all the hard work they've done for us

and the hours they've put in to make it a special day for us.

It's a weird feeling to see your family on one of these posters,

and we'd trade it if we could...

with that being said, I'm fairly certain we

were given this challenge because we have the support system

to help us deal with all that comes along with it.

We are so very-very humbled, grateful, thankful, and blessed.

 

{IL2-Round 1-Part 2}

We made it yet another week!
And we are happy, happy, happy! to be home.

I cannot even write down how full
of fear I was for last week to come.
It was
just.
so.
hard.
the first time.

I am very happy to report that
our experience this time was better.

When we went for Round 1-Part 1,
Travis was feeling so sick to begin with.
I think we both would freely admit that
those couple of weeks were the hardest
we've encountered in our long cancer journey.
(And that is saying something.:)

He went into last week with more energy.
His rib pain feels better. Still not 100%,
but so much better.
And he's figured out how to manage
his fevers better and get a little more sleep.

When we checked in on Monday
they put in his PICC line and our
wonderful Doctor who is really
in charge of every decision made
for us over the week came in to see us.

She looked right at Travis and said
"You look so good."
And then she admitted she was
VERY reluctant to try again with his IL-2.
She said she was full of nerves about how
his body would react again and pretty leary to dose
him. But after seeing him she changed her mind.

And when we met with our other Dr. there
who is the RCC specialist, he walked in
and said,
"Wow, you look so much better!"

Which makes me wonder how sick he
really must have looked to them before?

Travis,
My rock star of a husband,
got 5 doses in.
5!
That was the goal.

(You may not care about details, but they are listed below
for our own good. Feel free to skip.)

Dose 1-no side effects.
Dose 2-rigor for 25 minutes.
Afterwards had very low blood pressure
and the medicine they gave him made him pretty sick...
They waited till about 10 in the morning for,
Dose 3-We learned with this dose that he
back spasms just before he rigors and they
had a hard time getting his pain under control.
He rigored for about 45 minutes and they gave
him...a lot. of drugs.
Dose 4-His first night dose of the week.
And it was the roughest for sure.
His back pain was just unbearable and he rigored
for over an hour. His heart rate got up to 199
for a minute, and was up to 180 for at least an hour.
It took a long time for his body to calm down.
But by the next afternoon they felt ready to dose again.
Dose 5-About 30 minutes before the rigors usually start
his back spasms began, and they were worse
then ever before. They gave him a lot of meds
to get him to calm down, and by the time
the rigors really hit, he was almost asleep.
He felt them, but they weren't as strong or painful
as usual. And after and hour they were through.

I'm hoping next time we go they can remember
dose 5 and try to figure things out before
the rigors start so they aren't so violent.
After each dose his blood pressure was
really, really low and they had to give him some really
strong blood pressure meds-but everything
else was looking good till dose 5.
And then the liver decided no more.(Picture above is his tree sometime after dose 3...
these are just the bags. Besides all of this he got 2 bags
of fresh blood, a heprin shot in his belly every 12 hours,
pills every few hours-plenty of them, and when they give him
pain meds during the rigors they shoot them right in his PICC.
And I counted, during 1 rigor spell he got 8).
Wow.


He just did so well.
I'm so proud of my husband.
He is strong.
And awesome.
And I'm lucky to be his wife.

The RCC Specialist during part 1
was pretty pessimistic about this working for Travis.
He really didn't give us much hope and
we both came home from the week from hell,
feeling like it may not have been worth it at all.
When we left he basically was saying
IL-2 Was too toxic for T and he was coming up with plan C.

And while he still isn't 100% convinced it will work,
he was SO much more optimistic.
He was SO happy with Trav's rigoring,
(means it's working.)
And his fevering.
(Another good sign.)
And just overall with the way
the week went.

And the other Dr. who takes care
of us for the week was really, really pleased
with how things went.

We go back in a few week for scans.
I'm already nervous.
I've never,
ever,
ever,
in my life wanting something
as much as I want good scan results.
(Good results meaning, a little shrinkage.)
If they are good we do another round.

If not-we go to plan c.
And we don't want it.
We want a cure.

We are home.
Trav's feeling ok.
Tired, but ok.
And we are feeling so
grateful that this week
wasn't as awful as the last one.

Yes, it was still awful,
but in comparison...
it was doable.

We continue to feel so loved and blessed
and know we have it good.

Thank you all for all you do for us.
We love you all.

Here. We. Go. Again.

My.My.My
how has it been 2 weeks already?

I'm sitting here full of dread
because we had to say goodbye to
those lovely ladies of ours tonight,
so we can head back down to Huntsman
for a week tomorrow.

We hate saying goodbye to those girls!
Have you seen them?
They are adorable.
And they hug real good.
And they smile a lot.

And we miss them already.

And...
did you read our post about our first week
at Huntsman?
Yes?
Well then you understand
why the stomach full of dread.

Alas,
it's happening.
And we can't do anything about it.

We are praying.
Hard.
That this week is better then our last
experience and just praying for it to FLY by!

We cannot express our gratitude for
how taken care of we are.
I write that every time,
but it always astounds us,
and it's never ending.

I cannot keep up on the thank you cards.
We hope you know how deep our gratitude goes.

Wish us luck!
Love to all.

A week later

Well,
we've been home a week.
And I think we both are
starting to feel more like
ourselves again.

I knew that going to Salt Lake
would be hard on Travis,
but had no idea how stinking tired it
would make me too!

But it's so nice to be home,
surrounded by our
LOVELY, LOVELY ladies,
dear friends,
great family members...
and our bed.
OH boy, we missed you bed.

Travis is doing ok.
If you remember,
before we went to start round 1
he was really struggling.
He was in a lot of pain,
and just felt really off.
And then he had the
reoccurring fever.
And that darn fever
made his sweat.
A lot.
Making him not sleep well...at all.

While we were there they
ran test,
after test,
after test,
to see if he had some sort of
infection-
but everything seemed to look fairly normal,
so we were hoping
he'd come home and the fevers would stop
and he'd feel a bit better.

Sadly though,
the fever is still here and
the only explanation for it is cancer.
FREAK.

That being said,
he's figuring out how to manage it
a bit better and has worked out a way to
get a little more sleep and less sweats.
So while it's not perfect,
he is sleeping a bit more.

His pain level seems to be a bit
better then it was before,
and that is really good.
It's still there, but not
near as persistent and unbearable.

He seems to feel pretty terrible in the mornings.
(I call it his morning sickness).
He throws up and has to take it easy,
but then after he relaxes a bit
he's able to got to work for a good chunk of the day.

He also is eating a bit more then before.
Not a lot...
but more.

And with all the delicious dinners we've
been brought- he's been well fed!

I think each day he is getting
more energy, and less swollen.
And he's starting to feel more like himself.
It's just so nice to be home!

We have been beyond
overwhelmed with love the past week.
I've had a hard time sleeping because my
head just swirls when I think of what people
have done for us, and because I'm so grateful
for the people we have in our lives.

I feel like because of how well taken care of we
are, we both feel uplifted and stronger,
and ready to go back on the 9th.

Oh boy.

Thank you all.
Saying that isn't enough,
but I hope you understand how heartfelt it is.

{IL2-Round 1}

Well,
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.)
Yuck.

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
160-173.
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-
single-
medicine-
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.
Ugh.

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."
and
"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!
Plenty!

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.

Here. We. Go.

I'm pretty sure
that this week wins the
award for
Worst
Possible
Week
Ever.

Between Travis feeling just terrible,
and me trying to do
everything I possibly can
to make him feel better
and be able to be lazy-and hopefully recoup,
we are both spent.

And just when I think I'm cried out..
I find out I'm not.

So a week long stay
in the ICU sounds delightful....

Ok, not really.

Anyhow,
Travis spent most of
Thursday night in the ER
trying to figure out what in the
world is going on with his body.

Chest X-ray-
looked normal (well, normal for him).
So they opted to do an ultrasound on his gallbladder.
Ultrasound-
looked normal.
So they opted to do a CT scan to look for blood clots.
CT scan0
looked normal for him.

(Good and Bad).
We don't want surprises but
we'd love an answer,
and a fix.

They took a lot of blood too
and nothing was too different.

So they sent him home with some antibiotics.

He's still not doing great.
He's fevering often and still in a lot of pain.
And still not eating great.
But I do think he's improved a little.
Just not a lot.

Anyhow tomorrow we are finishing the
preparations for the beginning of our IL-2 journey.
(Making sure everything is packed, house is ready for visitors,
kids are ready, and giving us all good old priesthood blessings.)
And early Monday morning we begin.

Oh man.
We are scared.

Truth.

So many of you keep asking what you can do,
And I have an idea for you!
And I'm hoping you all follow through!
And share with friends and maybe they will help out too...

I'd love for you to comment here for Travis.
Tell him how awesome he is.
Tell him why he can handle the torture.
Tell him how lucky he is to have such a fab wife. (I kid).
Tell him how he is your hero.
He's mine.
Share a story to make him laugh during the week.
Tell a dirty joke if you'd like. We aren't above that...
Tell him anything that might
entertain him,
strengthen him,
make him think,
make him laugh,
cry..
whatever you feel like telling him.

I plan on reading them to him when he is
feeling coherent enough to listen.

This is how you can help.

I mean, really...let's not make me be the soul
entertainer this week.
I'm quite boring really.

Okay,
wish him luck.
Praying....praying....praying for a miracle.

Harder.

I don't wanna be a downer.
But this is hard.
Travis fakes that he is doing ok pretty well.
He looks healthy.
He smiles a lot.
And if you ask how he is feeling,
he will flat out lie to you.

He is not doing ok.
He is in an awful lot of pain.

If he is finally able to sleep,
he groans cause it hurts.
Or he wakes up drenched in sweat,
but mostly he just lays there trying
to get comfortable.
I'm not sure when his
last night of decent sleep was.

For some reason the past few
weeks things have gotten harder
and harder.
Besides the rib pain,
his chest and back hurt quite a bit.
And he has absolutely no appetite.
Eating is hard for him.

Finding the balance of trying to keep
things normal is getting harder.
Trying to be happy in front of the girls
is getting harder.

Life in general is
getting harder.

I'm so bummed that
the pain shots he had a few
weeks ago did nothing for him.
It hurts my heart to see him in pain.

He spoke to the Dr. in Salt Lake who
will start his treatments next week
and she has requested that he go get
another chest x-ray to see what the
heck is going on in there....
So he's getting that done today
and I'm hoping there will be an
answer to what we do next.

I hate the thought of him
starting IL-2 feeling this awful,
because let's face it...
it's just gonna get worse next week.

I've known for years that there
would come a day when we'd have to
really face this,
instead of skirt around it,
but never knew how awful it would be.

Please pray that the IL-2 works for him.
Please pray that he finds some comfort.
Please pray that the Doctors can figure out how to help him.
And pray that our cute little ladies will feel like life is good...

And pray that I don't lose my mind too, if you'd like.
We continue to appreciate all that is done for us,
even if this post sounds a bit whiny!
We don't take any of it for granted.