{New Plan}

Travis and I were able to meet with the Dr. today to discuss our next 

step in our treatment plan.

He has been on his 2 week break from Sutent,

and honestly is still feeling the side effects.

He does feel a little better then when he is on the drug,

but is still swollen, tired, and his poor stomach still has

many aches and pains.

We discussed all of our options today with the Dr.

When Travis was diagnosed the first time,

there wasn't many options in the field for RCC patients.

Today, the Dr. gave us a list, 

and while there aren't dozens,

there are options.

I just couldn't help but be grateful that we do have the options 

we have.  I can't imagine how terrifying it would be to not even

have the chance to choose your treatment plan.

 10 years ago we wouldn't have been so lucky.

After discussing all of our choices,

we opted to go with a mixture of drugs.

The first is called interferon, which is the oldest drug in the book.

And another called Avastin.

Avastin is infused, so that old port will come in handy again.

He will go every other week and the infusion takes about an hour.

Interferon is a shot that he will get 3 times each week.

And it sounds like either he, or I will get to administer it.

In his belly.

Ewwww.

The side effects for Avastin seem tolerable enough.

And really, taking that pill each night has been so hard for 

Trav's stomach that I think he will welcome going in for infusions again.

But the side effects for interferon will be harder.

It sounds like the stomach problems wont be as bad,

which is really fabulous, but there are lots of side effects.

Mostly flu like symptoms.

Which sounds awful and hard...

Poor Travis.

He's honestly felt like  he's had the flu for months now.

I am so grateful for how hard he fights for us.

 I watch him pull himself out of bed each morning and head to 

work when I know he feels incredibly sick,

and it reaffirms that I married a pretty amazing man.

Our lives have changed drastically in the past year.

And it's been very hard.

Harder then I really ever imagined.

 It's incredibly hard to watch the person you love feel so sick

with no relief or end in sight.

It's been hard on our kids.

The cold is affecting him worse then ever...

(in fact, he wears special thermals that are supposed to trap in heat every day,

and is still freeeeezing.)

So he isn't able to go outside and build a snowman,

or go sledding.

 Dad can't wrestle with them anymore.

On NYE we went to dinner and Adyson watched a

Grandpa wrestle with his grand kids.

Adyson looked at me and said it makes her sad that her

dad can't do that.

And it broke my heart.

 But then I see the ladies snuggle up next to him on the couch to warm him up.

And they make him watch videos on their ipod,

and he is always willing to read to them and will

spend every second he has catering to them.

And on every single good day,

he is thinking of something fun and special for them.

I hope they realize that he is stronger then most dads out there,

just in a different way.

This ended up being a pretty long rant for a little update.

Sorry about that!

Anyhow, they will get this all approved by the insurance and we will

begin soon.

Feeling nervous and optimistic.

Even though I stated there are options,

there's still  not enough.

We'd really like it to work,

and we'd really like it to give him,

and all of us,

a better quality of life!

Thanks for checking in.

If you made it all the way to the end of this

huge post,

I applaud you.

A little PS-
I love the Cancer Center her in Logan.
They treat my Trav like the rockstar that he is.
So grateful to them.

Results

Oh ya...

People check this thing.

I forget sometimes and keep getting random

worried texts.

I'm sorry.

Life is BUSY!

It is Christmastime!

Travis ended up getting his fluid 

removed 2 weeks ago Friday.

It was gross and a little painful.

I wont give you details...

but ewwwwwww.

So we spent the weekend waiting.

And a few days into the week,

waiting.

And then Trav said,

I'm pretty sure they are only gonna

call if it's bad news.

So we've had no call...

so the fluid must be just that,

fluid.

Ewwww.

And we weren't too nervous about the 

bone scan, mostly because

he can sure feel the cancer on his rib.

We assumed if he had it on other bones,

he'd probably know.

So we are gonna enjoy Christmas.

Trav takes his last pill the Christmas Eve Eve,

so we are hoping that he is able to feel well enough 

to enjoy Christmas.

We will be taking it easy,

but doesn't that sound lovely?

Taking it easy at home with the kids for a few days!

We are excited.

He will get a Bone infusion just after Christmas and 

he and The Dr. will discuss treatment options.

I am discouraged and sad that it's already time for a change,

but hopeful that the next drug will be the one.

And maybe the side effects wont be so bad.

Thanks to all who have been texting and calling.

I'm sorry I neglected the old blog.

Merry Christmas Everyone!

{Results}

I had planned on waiting till the bone scan results came

back before I posted results,

but I just feel like writing and getting it all on down,

so everyone knows exactly what we are dealing with.

The lungs were stable.

The liver was stable.

The rib was stable.

And there was very minimal growth in his kidney.

 Not an amount that is super worrisome,

but with a very minimal growth there last month as well,

the Dr. is thinking maybe we may have to consider other

treatment options.

Speaking of his treatment,

let me backtrack a bit to last Thursday.

He met with his Dr. and

they came up with a new game plan.

The full dose of Sutent is just too hard on him.

When I wrote last that the quality of life was sucky,

I meant it.

It's beyond writing it down,

and really it's pretty depressing...

so I wont bore you with details,

but he just can't do it anymore.

So after much discussion with other Dr.'s and specialist

they have decided to lessen his dose.

So instead of the full dose now,

he is half dosing it.

Which hopefully will give him some more energy,

less stomach pains,

and up his quality of life a bit.

Okay, so that was as of last Thursday.

Back to the now.

The Dr. is concerned with the fact that on the full dose,

he's had growth in his kidney, and now with a half dose,

that's not gonna improve.

(Remember, he only has the one. It needs to work.)

He wants Trav to continue for this cycle,

and then next month when he goes in for his bone infusion

they will talk about maybe trying another option.

There are very few options left..

so we really want the ones we use to last as long as possible.

Still unsure what the game plan will be,

and wont know for the next month.

And he will continue on this drug for now.

My biggest worry right now is

that they found fluid in his lungs again.

I'm not sure if you remember but he's had this before.

Here in 2008.

And when we did some research back then,

we found this out as well.

Here.

Those days were awful and full of worry.

And sweet relief when we learned it was just plain old fluid.

So, 

with that being said,

Please pray that this fluid isn't cancerous.

I have that feeling in the pit of my stomach because

I'm scared.

And really,
it seems likely to me that it is just fluid again.

So I'm gonna believe that all I can until he gets the fluid

drained next week!

Thanks to everyone for checking in.

I sure appreciate the many texts and e-mails

I've received the past few days.

We will keep you posted.

Love to all.

Blood Infusion, CAT Scan, and Bone Scan time.

Travis had a bone infusion today,

and was able to discuss how he's progressing

with the Dr.

Sidenote: The good Dr. has started calling him 

'Professor' because of the beard.

I like it.

Anyhow,

Travis told him how awful the past few months

have been,

and gave him the long list of side effects and talked

at length about the quality of life with this drug.

Like, the fact that

it

sucks.

We both just can't imagine him doing many

more full 4 week rounds of this.

It's just so hard for him to crawl out of bed,

and really, he hasn't felt even remotely decent for weeks.

It's weighing on him, and all of us.

With that in mind- we are making some decisions

on whether to lower his dose to 35 mg from 50,

or to try 3 weeks on, 1 off,

or even 2 on, 1 off.

That is still undecided,

but hopefully we will make a choice soon.

He is going in tomorrow to get a blood infusion,

which we are both happy about.

I'm praying it will give him an extra boost before

the next round starts.

And maybe we will have a good weekend!

Tuesday he will get his CAT scan.

Yep, we are scared.

Thursday he will get a bone scan.

It's been a long time since he's had one,

so he's due.

And yep, scared for that too.

Those days are days I wouldn't wish on my worst enemies.

And my stomach drops when I think about them.

Say a little prayer for him.

Thanks again to everyone for everything.

All these dinners with desserts are really killing my waistline,

but they sure taste good!

xoxo

{Sutent Round 5]

We made it through another round.

But barely.

Wow, this one was rough!

I used to feel like I could write a blog post

with a pretty upbeat outlook.

And I feel a little bit like a downer now.

Sutent is rough.

And doesn't seem to get better over time.

So forgive me for sounding whiny,

or blue, or reeaaaallly tired.

I'm going for honesty instead.

This round was particularly hard on Travis

and we are now into his first off week and 

he still isn't bouncing back completely.

We were so looking forward to 2 weeks of him feeling

good, and we are moving onto week 2 and he hasn't really

had too many good days yet.

Praying this next week is a good one!

It was also a different round,

and it's hard to explain why it was so bad-

it isn't just one complaint or ailment that

makes it rough.

He wakes up most mornings after a stomach cramp filled,

very stuffed up,

sleepless night and his eyes are practically swollen shut.

And the fatigue.

Oh the fatigue!

It's something different then just being a little tired.

It's like he could sleep for days on end and

still feel exhausted.

He pries himself out of bed,

and fights through his nausea most of the morning.

He's not able to eat and is lucky if he has an appetite by lunch.

And the cold.

Who knew that that side effect would be so troublesome?

It feels a good 20 degrees colder to him,

and takes twice as long for him to warm up.

He walks in the door and has to bundle up for a good hour

before he warms up. 

And then I force him to eat a little,

(remember, he has no appetite)...

and then he is pretty much down for the count.

It hasn't been a fun 4 weeks.

I miss him.

And he misses him.

And we all miss the way things once were around here.

I hate seeing him feel so crummy.

And he hates it even more I'm sure.

But we've learned to take it one day at a time.

And we make the best of 'good days'.

 And we even try to make the best of 

'bad days'.

The hardest part of all of this is we never know what's

'cancer caused' and what's 'side effect caused'.

 Like this little cough he has.

Is it a side effect?

Is it growth in his lungs?

Every time something small like that comes

up, my stomach drops in worry.

We should have answers to some of those

questions with a scan being scheduled soon.

Praying, so hard, that Sutent is still doing it's job.

I know we have so many praying with us.

I'm so grateful to have a husband who can feel

as awful as he does,

and still work every. single. day.

And still be an amazing Dad.

He is never too tired for his kids.

We are so lucky to have him.

I will post again when we know the date of the scan.

Thanks again to all of you who have brought in weekly 

dinners, and who bail me out whenever I'm in over my head.

Which is often.

xoxo

 

 

5 more days....

I never really know how to write  

these update posts.

People want to know how Trav is,

and how we are all doing as a family-
so I've been sitting her trying to find a way

to update.

I want people to understand how Trav

is feeling and doing,

but we both don't want pity

and people to feel worried or like we are in need.

So...

keep in mind as you read this post

that each night we tuck our ladies 

into bed and listen to them read.

We laugh when they sing at the top

of their lungs in the shower.

We watch 'Good Luck Charlie' before bed.

We get our favorite takeout every weekend.

We play games with our extended family

and make fun of each other a lot.

Trav gets really into football

and is always watching his fantasy scores.

Trav has even golfed a few times this month.

 And has only missed a day of work.

So remember,

we really love our life.

It's a good life.

Please don't feel after

reading this post that we want you to

feel sorry for us.

We really don't.

Really.

Would we change a few things.

YES.

Oh yes.

But we have a happy home.

And that is more then some can say.

This round has been tough.

I don't want to go into details 

mostly for Trav's privacy...

but it's been tough.

Sutent and his stomach don't mix well

and he has had many more bad days then good.

 Especially this past week.

His stomach just hurts.

And makes it hard to eat much.

His energy level is just gone.

He's soooo tired.

And sleeping all night doesn't

happen often.

 And the swelling that started

last month

has been happening again.

When he finally forces himself to get

out of bed-

(with a really bad stomach ache and still 

feeling like he could sleep for hours more)-

his eyes are really swollen.

And his mouth is pretty swollen too.

 And to top it all off he woke with

a small patch-almost like a scab on his

thumb the other day.

What I'm assuming is the beginning of

hand and foot.

It's just on his thumb and it's not a big deal 

for  now...and he only has 5 more pills

so we aren't concerned about this small

spot on his thumb...

but he has yet to experience the hand and foot

and we both were really hoping that this

was a side effect he wouldn't get at all.

It does worry me for the next round.

His sensitivity to cold is probably the strangest

side effect.  He gets cold very easily and has

a hard time warming back up.

Each day we just brace ourselves for what's to come.

Travis is something amazing.

He has only missed one day of work since our

Salt Lake visits.

I  think he's utterly amazing.

I would be in bed all day long if it were me.

When I write it down it seems really depressing.

And I'm not gonna lie...

sometimes it is. 

But we have two little rays of joy 

in our house that take up as much focus as they can.

And we have a slew of people who take care of us.

 My amazing neighbors who mow our lawn-

and my dad who is seriously here doing yard work 

every single week.

My friends feed us dinner so often that I feel like I barely

ever cook.

And my amazing Mom makes sure we are never in need 

and is willing to jump in the car and play carpool Mom if I need her.

Or make whatever food Trav might be craving.

The hardest times are when we really think about 

what life would be like without cancer.

I get a little jealous when I hear what others are doing...

like just jumping in the car for an adventure.

Or even going for a bike ride as a family.

Those things aren't easy for us...or possible even.

The kids can't climb all over T like they used to.

And we can't really plan things ahead of time.

And when we are out it is a constant worry of how T is feeling.

If it's somewhere cold, 

he will be miserable.

If he'll be able to eat.

If...

If...

If...

It seems there are a lot of 'if's' in what we do each day.

Every now and then I throw a little pity party

and remember what life used to be like.

Trav used to be the husband that would come home and 

unload the dishes while helping do homework and make dinner.

Then he'd go out and play soccer with the kids...

And now I'm kinda doing it all.

And working and sometimes it feels like I'm carrying 

the weight of the world on my shoulders.

And then I think what it must be like for Trav 

and I just feel terrible for feeling sorry for myself.

Because-

 NO ONE misses the way he used to be more then Trav.

He hates feeling so tired.

He hates it.

So yes-

we have blue days.

But then we shake it all off and do all the things I  wrote 

about at the beginning of this post 

and realize that our new normal may not 

be the ridiculously happy 'old normal' we once had.

But it still has happier moments then most people get.

5 more pills

and he has 2 weeks off.

THANK Goodness for that.

He really needs it.

We are going to celebrate our 10th anniversary

in Seattle while he's off and are both 

so ready and excited for a little vacation.

We also plan on mugging on our kids,

enjoying the gorgeous fall weather,

and enjoying a few weeks of happy tummy time.

Don't be jealous.

Love to all.

xoxo

 

 

Scan Results

Trav had his Scan yesterday.

The Dr. here hadn't seen the most 

recent scan from Huntsman

and was dissapointed to see that there 

was some growth during IL-2.

That being said, 

this scan showed no growth

and the biggest spots on his 

lungs have shrunk a 

really.really.

small amount.

But we will take it.

The plan is to keep on Sutent until

it fails.

I

am 

praying

that's a 

very

very

long 

time.

We hate the side effects,

but we love our Trav

and he loves us.

So it's worth it.

3 more months.

xoxo