Wednesday, May 29, 2013

{Our Second Home...}

It seems our second home these days is the

They have unlimited Diet Coke and a blanket warmer...
so it's not all bad.

Last post I wrote about how nice it was to have him 
home and how we were trying to get back in the swing of things.

Well, he was able to work for a week (maybe 2?  It's all a blur.)
And he was getting stronger daily,
and feeling fairly decent on his chemo.

Then the chemo side effects just started getting worse.
The Nausea.
Man, it's bad.
And the usual stomach issues that come along with it.
But then he started getting stomach cramps.
Not your normal cramps..
but it felt like someone had their hand inside his stomach and
was twisting his guts around.

For a solid week he was experiencing this pain off and on,
on top of all the other side effects,
some days he didn't even feel well enough to shower.

We met with the Dr. on a Friday and got some meds that 
we were hoping would help the cramping and pain,
but that evening the pain got worse,
and worse...
and we found ourselves in the ER again.
(Thank goodness, no ambulance was needed.)

The drug he is on has some pretty serious, 
albeit rare,
but serious side effects.
Fistulas being one,
and perforated bowel being another.
Those are hard enough for healthy people.
but for someone who has been through what Trav has been through,
they are pretty scary.

I was positive that this was the case,
so we were very relieved,
after a CT scan,
to find that these bad options were not the case for Travis.

Instead he had a swollen intestine (Enteritis),
that was causing all the pain.

For normal people,
they will send you home knowing that this will go away,
but for Trav,
(Who-I've decided, isn't quite normal:),
they admitted him in the hospital.
 Undergoing chemo, and with the cancer,
he is more apt to catch some ugly diseases and bacteria,
and they needed to rule those out,
and help him manage the pain.

I'm not being sarcastic when I say that I was beyond happy to have him there.

It was such a horrible week at home.
He was in constant pain,
not eating,
not sleeping,
and I was beside myself with how to help him.

It was lovely to have people there to know what to do to help him survive the week!

After running all the tests,
the answer came to this:
It's probably caused because of the chemo.

This is a bit of a blow.
We wish it was caused by something else,
so we could take some antibiotics, get rid of it,
and fight with this chemo.
 We don't necessarily love this chemo,
in fact, we loathe it.  It is the hardest drug Trav's tried,
and I'd wager, one of the hardest chemo drugs available for RCC. seems his kidney can handle it.
after meeting with the Dr. yesterday and reviewing scans,
it seems to be working for him.

He had no new growth in his kidney or liver.
And while the scans didn't show his ribs...
we both know it is working for his bone mets.

That new pain I wrote about in my last post,
is gone.
And while he has been on the CABO,
his normal rib pain has been much better...
and now that he's taken a 2 week break,
he can feel it again.

So-here is where we are at.
He can try the CABO again, 
and risk the enteritis and pain again.

Or he can move on.
Keeping in mind that moving on means we've exhausted
another drug, and there aren't many left.
 Not near enough.
And also keeping in mind that the next drug may not work.
 And also keeping in mind, that the next drug-will probably put him on dialysis
as the one we are thinking of is pretty hard on your kidneys.
(I should mention that the kidney is functioning slightly better..
still not near where it should be, but his createnine was at 3.4 yesterday.)

We are in a tight spot here.

So here's what we've decided.

We are gonna give the CABO another go.

I'm dreading it.
Not gonna lie.
The past few days have been so lovely.
Having Travis seem semi himself has just been heaven.

The other day we went to lunch!  And to Lowes!
I know, for some of you this seems a silly thing to be excited about,
but we haven't been out together in a very long time.
 If errands get ran, I do them very quickly and worry about him the whole time.
I literally teared up on the way into town.

But we aren't stupid.
We know that our options are low,
and none of them are great...
so here we go again.

Thank you for your continued prayers,
and for taking such great care of our family.
We are so blessed.

Friday, May 10, 2013

The Latest.

I've been getting texts from
Trav's groupies...
"Tell us what's new!"
"How's T doing?
 And so on...
so I thought I'd give you a quick update.

Before I do so,
I've decided you all need a nickname.
Like Justin Beibers fans...The Beliebers.
Or Lady Gaga's...Little Monsters.
Feel free to add your suggestion in the comments.

Ok, now that we have the important stuff out of the way-
Here's the latest.

Travis is home.
He remembers everything....and is,
once again,
a completely smart computer nerd.
Just the way we like him.
Love him really.
He's fabulous.

Since we've been home we've had about a zillion
Doctor's appointments, just checking in and coming up 
with future plans.

He had labs drawn on Monday,
and the createnine is still stable.
Which is good...
but it's still high, borderline failing...
which is not good.

And Monday,
after meeting with our ONC,
we came up with a plan to resume his current chemo, 
and he started that night.
(Side Effects are already kicking in...what fun!)

I am fairly concerned the chemo is gonna conk his kidney function
way out...
but so far,
the signs we had before the hospital
(shaky hands, sweet smell, muddled brain and confusion),
aren't there so I'm hoping that the next labs are good!
I can't tell you how relieved we would be if they just stayed stable.

Here's our newest problem.
You all know T has that pesky tumor on his right rib.
And it's pretty painful at times,
though he has had injections that really help with the pain,
and he's learned to cope with it well.

Well,  now he is having some serious pain in his left rib.
This has been hard.
Sneezing, coughing, yawning and laughing all cause some
serious pain.
I am just praying the the side effects don't cause him to vomit...
I can't even think about how bad it would hurt.
He's learned to adjust to sleeping on his side due to the first tumor,
and now that side is effected too...
making sleep kinda impossible.

I'm crossing my fingers that this is just a random flare of pain,
and that there isn't a new met.
And if it is a met,
I'm praying that the chemo kills it fast.
The beauty of this new drug,
is that IF it works, for most it works well on bone mets.

So we are crossing our fingers.
If you see Travis,
try not to make him laugh.
Or sneeze.
Or yawn.

You know that beautiful poem about what cancer can't do?
Link here if you don't.

Well, I think it's a beautiful poem.
And agree with every word.
But come on cancer!
Your pissing me off!
Your now taking away LAUGHTER from my husband!
And please, can the man just SNEEZE without being in pain?

Really though,
Trav continues to amaze me every day.
Mornings are still really hard,
but he's been going to work each day around lunch,
and reveling in coming home and being with the ladies.

And us,
we are in heaven just having him here.

Labs again Monday,
and I'm betting an x-ray on this new pain.
 Let's hope it magically dissapears by then!
I mean,
at some point,
somethings gotta go his way...right? :)

Thursday, May 2, 2013


Before you read this:
If you are a friend of our children,
I'd rather you not read this post.
And if you are a parent of a friend
of our children,
please don't share this post with your kids.
 We are VERY honest with our kids,
and have talked to them so much about
what has happened...
but we would still like to be the ones 
talking to them.
 This past week they've heard A LOT
from many of their friends,
who mean absolutely no harm,
but still don't completely understand.
Please watch what is said in front of your kids.

Where do I begin this post?
It's one I don't really want to relive,
and one that is part of our story and our lives,
but I really wish it wasn't.

It's funny.
When we first learned of T's cancer,
and the kidney came out,
we got used to the constant wonder of  if/when it would come back.
We pushed forward and had a beautiful 2 years
and welcomed our sweet Roo into our lives.
We adapted.

And then the cancer came back.
And we learned we had to LIVE with it.
And we had to live with scans every 3 months,
and hard Thursday nights and side effects.
But man,
we adapted.

We had a beautiful 4 years adapting.

And then that medicine stopped working,
and we realized we had to start a new path.
We spent weeks in the ICU trying HD-IL2,
one of the hardest chemo treatments around.
And it failed.
We tried Sutent,
with killer side effects.
And it failed.
We tried Avastin/Interferon,
with the flu every weekend,
And it failed.
And each time,
we've adapted.
Or keep pushing to adapt.

And now CABO.
We're adapting.
This past year has been awful,
but we really have adapted to our new normal.
It's been hard, but we have done it,
and made some pretty amazing memories while we've adapted.

But I'm not gonna lie.
Adapting gets old.
Sometimes it feels like
adapt anymore.

And sometimes we get a little
jealous of those who are able to be completely used to
small worries.
Like weight gain, or house payments,
or being annoyed because they had to do the dishes alone.

I miss those battles.

Sorry, this sounds very sad and pitiful right now,
and I don't mean for it to...I will make my way around
to the silver lining...
but bare with me.

The girls often ask why we get stuck with such hard trials.
And I make sure to let them know that we aren't the only
ones.  Ours seem more public,
and at times-they seem hefty.
But we DO know that we all get struggles and trials,
and sadly,
at times they will feel heavy and hard.

Right now,
ours feel heavy and hard.

So here's what's happened.
And I know most of you know the story,
because thank goodness,
we have the biggest support system around,
who absolutely make our burdens lighter and lighter.
We couldn't have managed the past 8 years without you.

Two weeks ago today (Thursday),
we had to meet with a Kidney specialist
because Trav's recent blood labs had showed significant
changes in his kidney function.
We drove to Ogden and met with the Dr.
who said, if the labs didn't look better by Monday,
we would have to start dialysis.

This was a blow.
Dialysis is very hard.
And come on! Trav has enough hard.
CABO is hard, and he is weak and adding dialysis wasn't something
we were super happy about.
He sent us to the Logan hospital to get an ultra-sound on 
the kidney just to see if there was a blockage,
and we didn't hear anything after that.

Here is the ultra-sound.  That white circle is the biggest tumor in the kidney.
Friday Travis seemed a little 'hazy'.  He just wasn't himself.
His hands were very shaky, and he felt sick, and his brain seemed a little slow.
It worried me, but we are on this new chemo and I assumed it was all side effects.

That night we played games with my family and just hung out,
and came home around 10.
Thank goodness, the girls slept at my moms.

When Travis tried to lay down to go to sleep, his back was in a lot of pain.
He gets spasms often as part of his SE's, so we assumed that was what it was.
But it just got worse as the night went on.
 I asked if we could go to the ER a few times, and he was pretty adamant
that we didn't,
so he just kept trying to be comfortable.

And then, very quickly, it got really bad.
He couldn't breathe and was clutching his chest and really struggling.

I wont go into too much detail,
but I will say, it was very scary.
And I was pretty sure he was having a heart attack.

I called 911, and we rushed Travis to the hospital at 1 a.m.

That night is a bit of a blur.
The Dr. there tried to get his pain under control,
and tried to understand why and where it was coming from.

His heart looked fine,
there was no blood clots,
CT scan was fine,
X-rays were fine,
and it seemed there wasn't a clear reason for the pain.
(Keep in mind that the Dr. did know about the kidney problems, 
and the cancer).

Around 6 that morning, after finally getting T's pain under control,
the ER dr. wanted to send him home.

I didn't want him to come home yet.
We had a very full day,
and I just had that gut feeling we'd be right back in the hopsital.
So we opted to check him in for a day to rest and make sure the pain was gone.

Throughout the day, they had to continue to give him some
pretty heavy medications, and he either slept, or was awake and in pain.

That night,
around 11 pm,
he woke up for a bit.
I went to talk to him and his eyes were huge.
And he could not focus on me, or anything.

He didn't look like himself, or like he was 'there'.

I finally yelled at him and asked if he knew my name.
And he couldn't answer me.
And after getting the nurse in there,
we realized he couldn't remember anything at all.

It was awful.
 That doesn't really describe it,
but I don't know how else to put it.
(Um...can you imagine if we would have come home like the ER Dr. said?) 

We quickly got a Dr. in there,
and he helped us figure out what was happening as fast as he could.

Because of the kidney failing,
his body wasn't filtering out anything it needed to,
and his blood was filled with acid, very clearly affecting his brain.
 And he assured me that it wasn't a permanent thing.
They also decided that the pain being so intense,
was the kidney being swollen and infected, pushing on the nerves 
surrounding the kidney.

We rushed him to the ICU and they started pumping him with 
all sorts of meds to help clean his blood, and they called our
kidney specialist because they were thinking he may have
to be sent to SLC or Ogden right away to start dialysis.

After talking to the specialist, (who remember had us get an ultrasound 2 days before),
he said to wait and have a stent put in the next morning.  His hope was
that it was blocked and that was causing the function to be poor.

So through the night they kept pumping him with drugs,
and in the morning, he was still very out of it,
but he did remember my name....improvement.

They did the stent surgery the next afternoon,
and by evening he was even more aware.

The next day our ONC came to visit the hospital.
He wasn't very happy that we were there...
after we had that ultrasound the Thursday before,
our specialist called our ONC and told him to get a urologist
to do the surgery quickly...and our ONC called a Dr. who said
they would call....and they just dropped the ball.
I try not to get mad about that...but boy!  If he would have called,
maybe this could have been avoided.
(We are over it.)
But man.

The next morning his function had improved tremendously,
but it was still high.
(A normal createnine for someone with 1 kidney is around 1.5ish...when it was
failing it was around a 6.5, the day after surger it was at 5.5)
That day they were all very optimistic that the createnine would continue to 
drop and we would be good to come home in the next few days.

The next day it had dropped to 4.85 and Trav was getting back to himself.
They  moved him out of the ICU and were very optimistic that the numbers would improve.

But they didn't
He's been hovering around that number since.

(A side note: After being so weak from all the pain, all the meds, and the poor function
and being in bed for a solid week, Travis was/is extremely weak.  He had a very hard
time standing at first, and walking was a struggle.  When we were released
from the hospital he went to a rehab facility for 4 days.  He is now much stronger,
but still has some work to do.  And he is still very worn out!)
(Also, his pain has been much better since we've been home, thank goodness!)

Today, Travis turned 38.
Happy Birthday to my amazing husband,
who fights and fights, and then fights some more.
I got real lucky when I married him.

And today, we also met with our specialist in Ogden.

Good News first:
He feels like even though the createnine is high,
it's not high enough to consider the kidney as failed,
and he doesn't need dialysis if it stays at this number.

Bad News:
He isn't sure if the blockage was causing the whole problem,
and worries that the tumors in the kidney are doing a lot of the harm.
Travis hasn't been doing any CABO since this happened,
and he worries once we resume chemo, it could do the kidney in.

But we are gonna pray REALLY hard it doesn't.

He also said we could think about ablation...
but it would surely do the kidney in.

So those options aren't great,
but dialysis will buy us time together.
So it's a choice we may have to face,
but one we are gonna hope 
EVERY second, we don't have to.

So here we are,
adapting to this new normal.

One where we check kidney function weekly,
and resume worrying about the cancer- along with the kidney.

It's gonna be hard to adapt to this.
That's just the truth of it all.
I am filled with fear of him getting hazy again.
And poor Trav, each time I kiss him, I sniff to see if I can smell the acid in his blood.
 And if his breathing is labored in the middle of the night,
I wake him up to make sure he's ok.
(So rude, cause he barely sleeps these days!)

I've got to adapt.
And so does he.
And so do the ladies.

Here is the silver lining.

We can and will adapt to this because we have the support system we have.

Dr's who really love Travis.
After seeing them,
especially his ONC take care of him this week,
I have no doubt that he is in the best of hands.

Our families who step in and just take charge.
They make sure the girls are happy, when we can't.
They make sure the laundry and yard work is done.
They babysat Trav so I could get a break, and rest, and see our kids.

We have friends who text messages of support all day long,
who offer to carpool, to babysit, to take the girls for fun days,
and who bring me enough Diet Coke to get through it all.
Friends who help Travis forget his troubles and chat about golf,
basketball and whatever else those men discuss....

Friends who bring dinner,
and fill our home with balloons and love.

 And we have the knowledge that our family
will be together FOREVER.
The knowledge that our Savior, who died for us,
understands our pain.  Understands my heart that aches
when I see Trav in so much pain, and also completely 
understands the physical pain Travis is in.

We will adapt because
A) we don't have a choice!
B) we can.  because when we feel like we can't,
so many help us remember that we can.

We are so grateful to everyone who helped us get through
the past few weeks,
and years really.
We know we are so blessed.

 INSTAGRAM Pics from the past week:

The upside to being in the hospital all day:
A book and a warm blanket at 3:30 in the afternoon!
 Sweet and thoughtful treats from friends.
Eat, drink, and be TRAVSTRONG.
 And my favorite picture ever taken.
The ladies kissing Travis goodnight after he came home.
He is so loved.
And so deserving of it all.
Man, I'm gushing.
I love my family!