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

Sutent round 3-and a Scan date.

Well hello all.

Thanks for stopping by.

 

I thought I'd update a little on how

my T is doing.

 

He has 3 more days into his 4 week cycle

and then we are welcoming...

with wipe open arms!

a 2 week break.

 

Things have been pretty similar

with this round as they have in

the past few....

we are feeling so thankful that

he hasn't had mouth sores

or any sign on hand and foot.

 

The fevers have been more persistent.

The nausea came much more often

then last round, but he's been able

to control it and it hasn't gotten him too sick.

His joints have been achy.

And of course the stomach cramps

and pains never want to leave...

but until this last week I think they were

bearable.  He's such a trooper!

I'd say that the worst part this

time for him would be the fatigue.

It's really beat him down this time.

 He is constantly exhausted

and can fall asleep whenever.

And most days he walks

in the door-and spends the rest of 

the night on our cozy couch-

basking in our chaos.

 He actually was so concerned

about how tired he feels that

he even got a blood draw!

(T isn't one to go to the Dr. unless 

they-or I-make him.)

 

His blood work looked fine,

so it's just from the darn pill.

 

 The past 2 days he's woken up with

a swollen face.

Yep, it's as weird as it sounds. 

His eyes-nose- and lips all have been swelling.

 

So when a new side effect presents itself-

I go into research mode.

 

I head right here

and read to make sure it is 'normal'

for Sutent users.

(If you haven't read the side effects link

before and what a real picture of our glamorous life...

go there.  Really, it's terrifying.)

 

I didn't love reading that if you

are swelling in your face you need to contact your

Dr.

 

I not so nicely told T he wasn't allowed to take

a pill tonight without call our fabulous Doc.

 

Meanwhile, I'm full of first day of school

exhaustion-first day of work exhaustion-
(Yep, I have me a job now...heaven help me!)

and the usual cancer anxiety...

so I may have been a little (LOT) tearful and

worried.

 

As usual though, 

the Dr. calmed my huge worries

thinking it is probably a normal reaction-

and not worrying because his throat and tongue 

feel fine.

 He is now on a steroid and I've drank a 

Dt. coke---so we are all good.

He has only 3 pill filled days left and

then hopefully he will feel like himself again.

The whole reason I began this post was to mention

that scans are happening.  

On the 4th of September.

I feel I have to mention that our 

10 year anniversary

(10 years!),

falls just 2 days later on the 6th.

So...

I'm thinking I know what T can get me.

Good scans.

 

And they are pricey enough

that I think that'll do.

 

Sutent: Round 2

Wahoo!

Round 2 is done!

Never has anyone been more ready

for a 2 week break then T.

Take my word for it.

During his last 2 weeks off he started feeling much better

and going in to his first week

he did pretty well.

Week 2 the stomach pains began.

And the heat rash/fever.

And he welcomed the complete exhaustion that is Sutent.

Week 3 they all worsened.

And the joint pain began.

His joints were just really, really stiff and pretty painful.

Week 4,

They somehow got worse.

The stomach pains were pretty unbearable

and the joints were pretty awful.

The fevers seemed to worsen.

And he was ready to be done!

But,

did you notice I didn't add any nausea to our list?

He had it once or twice,

but hasn't thrown up at all in the past 4 weeks!

That is very good news for him.

My dear husband is amazing.

He didn't miss one day of work this entire cycle.

And I can promise you that the stomach aches and fatigue 

would keep most men home.

He's a keeper.

We are going to really try to enjoy the next 2 weeks 

before he starts again.

And we should have a date-ish set for scans soon too.

Full of hope and dread.

Love to all.

(Oh and the hair is a lovely shade of grey.  Quite distinguished really.)

 

Side Effects Sutent Round 1

This post may be slightly boring for most of you...

but a lot of RCC patients read it,

so I for them,

and for our records,

and for anyone curious about what the past 5 weeks were like...

Here you go.

First-we were only able to get 3 weeks on,

instead of 4.

(That is now rectified and we received his next 4 weeks yesterday.)

Week one his tummy just felt yucky.

Pretty much constantly,

and it was noisy.

We would be laying down and watching

TV and you could hear it just doing it's thing.

Each evening he would get a heat rash that 

would spread from his chest to his face.

It was a bit of a fever,

but not that bothersome,

and just went away on it's own.

And he got/ and still gets,

cold and hot very easily.

His body just can't be a comfortable temperature for long.

It's picky.

He's kind of a diva.

Week 2 the diarrhea began.

And the nausea that he really has had since IL-2 

worsened.

Even with drugs he would have morning where he would

throw up,

but still did ok.

His taste buds didn't lose complete sense of

taste, like some on Sutent experience,

but things just tasted a little different.

And a little off.

 

The fatigue really started to come into play here too.

That's been really hard on him because it's something

that not many people understand.

It's not like he can just take a nap and feel

better.  He's not just tired, His body is just completely

exhausted.

He doesn't sleep well,

and if he does-it still doesn't feel like he's slept at all.

Fatigue is something quite different,

and I think it's pretty bothersome to him.

Mostly the stomach issues happened in the am

and he just felt yucky throughout the day.

Week 3 was much of the same,

maybe a little worse in some areas,

but much of the same.

With a sore throat added in.

And, it's started.

The white hair transformation is coming along nicely.

His beard is completely white now,

and he has some lovely white roots growing in.

I imagine by the end of this cycle he will look like Santa.

It's crazy,

considering he is so dark.

I find him still quite handsome.

Pretty much in those 3 weeks he would feel

okay one day, and then one day wake up 

and feel awful.

It really varied day by day.

Each morning I hold my breath and just

wait to see how he feels.

And silently pray it will be a good day.

The worst part is that even the good days

are pretty rough.

The last few days of week 3 

were the very worst,

and the sickest I've seen him.

He was VERY hot,

Very nauseous,  and every other thing

he was going through was just worse.

He couldn't really stand up without throwing up.

It was tough.

It was almost a blessing that we didn't have to 

have another full week because I am 100% sure 

that his body wouldn't have handled it well.

Now he's had his 2 weeks off

and had done much better.

The nausea is still around a bit,

but his appetite has been much better

and his fevers have been gone.

He still isn't sleeping great and the fatigue,

while not as bad,

still gets him now and again.

He said the other night in the middle of the night

he got a drink of water and thought it tasted funny...

then he realized it's because it was normal.

Just in time to start again.:)

He started his dose last night

and we are praying for a little less stomach issues this go around.

They say each dose is different-

so we are keeping our fingers crossed for the best scenario possible.

This past week has been 

heaven to have my husband back.

He's been so much more himself,

that I dread the next 28 days.

BUT!

I'm living for the 2 weeks that follow.

 Thanks for checking in.

It's always appreciated.

Sutent cycle 1 ends.

I keep getting e-mails requesting an update on

how Travis is doing,

and then I realize I should probably blog...

but never know what to say.

In my last post Travis wasn't doing so hot.

It was a very hard few days.

And he should have had one more week on Sutent

during that time.

There was a bit of confusion when we got

our first round of pills.

The dosing is 4 weeks on-2 weeks off.

We were given 3 full weeks of pills,

and they were working on financial aide

and figuring out how to get the meds to us from there.

Well...

somehow, that didn't happen.

We've been working with Huntsman and

the Cancer Center in Logan to get the pills,

and still aren't sure if they will be here by Friday-

when he should start again.

So he had 3 weeks on 

and has had the past week and a half off.

It isn't great that he wasn't able to get 4 weeks on,

but with that being said,

I'm not sure if his body could have taken another week on.

It was incredibly,

incredibly 

incredibly 

hard on Travis.

(And all of us-really.)

So I will keep you all posted when we figure out meds,

but if all goes as planned he will start again

on Friday.

From what we know,

with each new cycle,

the side effects vary.

Sometimes it's the nausea,

sometimes it's diarrhea. 

Or both.

Sometimes it's hand and foot,

or mouth sores.

And they worsen as the weeks go on.

We are hoping that with this cycle

the stomach pains and nausea and 

all of the awful side effects don't come

back in such full force.

Because-if they do, 

something will have to change.

With his 2 weeks off he is feeling ok.

Still not great,

but ok.

Still fevering and feels a little off,

but much improved from last weekend.

The hardest part of this for us,

besides the obvious-feeling terrible all of the time,

is not really ever knowing what lies ahead.

We quite literally can't plan anything even a day before.

We just never know what the next day will bring.

We can't plan early mornings.

Or late evenings.

It's tough.

 But enough complaining!

We still look around in awe each night of how blessed we are.

We have a lovely home.

Beautiful, seriously beautiful kids.

Great family.

Fabulous neighbors.

And a lot of love.

Loads of it.

So we can manage.

I do feel like I need to add one thing here.

Travis has been driving a big old truck for the

past 4 years.

Now that he isn't able to do any heavy lifting,

the truck became pretty much a waste of gas money.

We put it up for sale and it sold in 2 days!

Yay!

Today we went and bought a pretty little car that is

MUCH better on gas mileage for us.

And we love it.

BUT,

I worry that some people will see us driving it

and think we are awful people because of the lovely

fundraiser held in our behalf.

I know, 

that everyone gave from their heart.

I know,

that I don't have to explain our actions to anyone.

And I probably wont explain our purchases

or what we do financially here again.

But I wanted to make sure that people know

that we are Eternally grateful for all that we have been given.

I still have no words.

Someone knew we were looking for a small

car, and very kindly, and generously donated a little extra

money for that purpose.

With their kindness,

and selling the truck,

we have the cutest little car

and will save a Large amount of money on gas.

Awesome.

We have amazing people in our lives.

  And we have no doubt that we don't deserve 

all the love we have.

 I've said my peace.

Now,

I'm going to snuggle my husband

because we have 4 more days till hell month

begins again.

Jealous?

Love to all.

Sutent: Week 3

Tonight I miss IL-2.

And that is saying something!

Sutent is hard.

From what we know over the 4 weeks of

this drug side effects get worse and worse.

And then you get 2 weeks off before beginning another dose.

And when you start another round...

they get worse and worse again.

And so on.

I've had mixed feelings about how to answer the question

"How is Trav doing?'

Because it all depends on the day.

I hold my breath each morning and wait to see how he feels.

Some days he feels pretty terrible.

(Mostly stomach issues, heat rash, and fatigue).

And some days he does pretty well.

I wouldn't say he ever feels great,

but for the past few days he's done great

and we thought we had a good thing going.

Till today.

Today has been extremely rough.

Trav woke up feeling sick,

and it's gotten progressively worse as the days gone one.

He is extremely nauseas and hasn't been able to eat,

or hold anything down.

He has some pretty awful stomach issues.

And he's been really fevered all day long.

I miss IL-2 because at least when he was feeling so sick,

we were in the ICU where they were monitoring everything.

Here I worry that something could be really wrong,

and we are ignorant of what it is.

I'm a worry wort.

It's in my blood.

(I wonder if that's spelled correctly?) 

And we should still have one week to go before he gets a break.

I'm praying today is just a bad day,

and that tomorrow he will feel  a little better...

Feel free to join me.

I really, really hate seeing him so sick.

Love to all.

Balloons!

The day after I wrote this post we woke up to this beautiful sight.

 (The view from my front door at 7:30 am)

 Balloons!

Everywhere!

 Hundreds of them.

Lees in Smithfield ran out of orange

and started using yellow.

And Lees in Logan was bought out too.

(and more were added throughout the day)

They were brought with the message that we can feel lifted up.

And we did.

I mentioned that that night was extremely tough on our kids.

Waking up to this sight meant the world to them.

It made them remember that we have so many special 

people taking care of us.

And that, yes, life can feel hard,

but we aren't doing this alone.

This was done by friends,

sent by texts-to everyone and anyone who wanted to support us.

These dear friends-I know, had no idea how much this would mean to 

the little ladies.

Thank you for your love!

 We let them all go in the afternoon with lots of wishes floating up in the orange dotted sky.

 It was a beautiful sight!

A little update on  T and sutent.

This week was he did ok.

He had 4 shots Tuesday 

and  while the rib pain is 

still very present,

it's not as unbearable as before and 

he is able to log a few hours of sleep at a time,

where before he was waking up every 20 minutes in pain.

 

The stomach issues aren't fun for him.

He always feels pretty off,

and crappy,

but it's manageable.

 Each night he gets a heat rash that spreads

up from his chest to his face and makes him really hot.

Then cold,

Then hot again...

and cold again..

(How many of you just started singing katy perry lyrics?)

There are a few side effects I will spare details on,

for T's comfort and because ignorance is bliss...

but it's been ok.

Some days are really bad.

But for the most part he's managing.

We just cross our fingers for a good day each morning 

and see what happens.

It's like being on a roller coaster in the dark.

Except not fun, like Space mountain.

We feel loved and taken care of and are doing fine.

Thank you again for checking in!

 

Oh boy.

Sutent is gonna be fun!

(Dripping with sarcasm).

Tonight I looked at T and said,

"How long have you been on Sutent now, 2 weeks?"

And he replied...

"1."

It feels more like 4.

Anyhow,

Here's how things are shaping up for us.

After a few days on Sutent the fevers 

started to slow, and for a few days

STOP.

No fevers?

No sweating them out for hours?

Heaven.

And his cough,

which has been really terrible,

has lessened quite a bit.

Not gone,

but gotten better!

And the nausea?

It's getting there.

Score 3 for Sutent.

 Right?

Then,

Wednesday night Trav woke with some serious

rib pain again.

Because his body is mean and can't let him 

feel good for even a second!

Ugh.

Tomorrow he will go meet the pain

specialist again to see if they can help him out.

He gets absolutely no sleep with this awful pain,

so the sooner he gets it fixed,

the better.

We were thinking that as soon as the rib

pain is gone, he might start to feel like himself again.

Until today.

I'm pretty sure the side effects decided to kick in today.

He's felt awful.

All day long.

 His skin is yellowing a bit,

which I believe is normal.

And he got one heck of a fever today.

We know that they are coming,

but I have a pretty yucky feeling that

they are gonna be mean side effects.

And I  feel bad that my poor T hasn't felt

remotely decent in like 4 months.

(Ok, 4 years really, but even worse lately.)

I think him not sleeping isn't helping so I'm really 

crossing my fingers for the injection to help tomorrow.

Tonight I'm missing my husband.

I know he's here,

and we are so blessed that he is still here...

but he's miserable.

And he's not really himself.

 I'm just praying that these

side effects wont be too hard on him 

and once his rib pain is better he will

be able to find some energy,

and feel normal again.

There is a silver lining though.

 I mentioned that his cough was really bad before,

and it get a little better just before the rib pain began again.

And his 'morning sickness' has been a  lot better too.

I can't imagine how incredibly painful

it would be for him to cough that hard,

and be that sick with that pain.

Right now with his cough being as minor

as it is, it's still pretty painful.

We are both grateful for that.

And grateful for  the moments of normalcy we

are having.

 Even though this post sounds like it's all awful,

we have some really wonderful, happy moments

where life feels normal again.

I truly believe we will get there.

I think it will take some time to get used to 

these side effects,

but like his last drug,

his body will adjust.

I think we just have to be patient.

We are both working on it.

Thank, as always for the many people here cheering us on.

We sure love you!

 

 

 

{Another new Chapter}

(This post is long winded. Forgive me?)

Scan days.

I can't tell you how much we hate them.

For a good solid 2 weeks beforehand I 

picture the Dr. coming in giving us either the

best, or the worst possible situation.

 And we lose sleep.

And sanity.

Today was the dreaded day.

 We had scans at  12:30 and had

an appointment to meet with the Dr.

at 3:00.

And we sat in his office till 4:30,

and then he finally showed up.

Here's the gist.

He's not responding to IL-2.

There was a little growth everywhere,

and a few small new tumors in his kidney.

We knew it was a small chance.

We knew.

But man, having hope made us really want it.

 This was our only shot at a cure.

And I had us sitting on a beach 10 years from 

now saying things like,

'Remember when you had cancer?'

But, that's not in the cards.

But we have options.

And our Dr. was unusually optimistic about them.

He has recommended a drug called Sutent,

and we've read a bit about it in the past.

For some, 

this is the miracle drug.

The drug that gives them more time.

And he really feels like because of Trav's

age, and otherwise healthy body,

this could really work for him.

Sutent has been used by many in the RCC world,

and it seems for some the  side effects are murder,

and for others,

they are manageable.

The Dr. seemed to think for Travis they would

be manageable.

We are crossing fingers.

And all crossable body parts.

And Sutent is pricy!

We were told today that it would cost $3600

each month, AFTER INSURANCE.

BUT, the Dr. is already working quickly to 

figure out some financial aides for us,

and we are looking into a few options.

I feel like those who threw the beautiful fundraiser

together for us, were very inspired.

Please know, from the bottom of our hearts,

we are grateful.  Truly.

Today we were very grateful for our Doctors.

I'll be honest,

we had a hard time getting used to our new Doctor

at Huntsman.  We adore our Doctor here in Logan,

and still feel that he really knows, and wants the best for 

Travis.

And we didn't feel that at first with our Doctor in Salt Lake.

But today his optimism was so helpful.

And he was so kind.

He mentioned that he has about 20 people with RCC

and out of the 20, he wanted so badly for the IL2 to work

for Travis,  because of his young age and hot wife..

(ok, he didn't say that, but I'm trying to keep you awake.)

(I think he just really likes Travis, because what's not  to like?)

He said "If only he could handpick how it worked'.

He was so dissapointed that it didn't end that way.

And he was so optimistic that Sutent would be a good fit for T.

He said for some lucky people Sutent has worked for up to 5 years.

And while he can't even suggest a timeline for us,

because Cancer has a mind of it's own,

he's very hopeful that it will buy us some time,

and hopefully there will be a promising clinical

trial when Sutent does fail.

And then the Nurse practitioner who is really

in charge of us during our IL-2 doses and the

weeks we spent in the ICU came to visit for a minute.

This woman is a Saint.

She is the boss during those weeks and says who

gets doses and when.  They call her at all 

hours of the night, and I imagine she lives on no sleep.

She quite literally was our life saver while we were there

and we adore her.

Today she just hugged us both,

and with tears in her eyes told me 

how heartbroken she was that the IL-2 failed.
She also said that even though his
scans showed growth, she knows
that he will still have some beneficial
affects from the IL-2.
She feels like it will kick his immune
into overdrive and jumpstart the new chemo.
And she really feels like people with Il-2
in their system just plain live longer.
It wasn't 2 weeks wasted.

We felt so loved by both of them 

and it makes a big difference.

Instead of leaving heartbroken today,

we felt very optimistic.

We have an option,

and are praying,

really-really

really

hard that it's a good one.

We started taking the Sutent today

and will get a scan in 3 months to see how it goes.

If the financial aide works out we are hoping

that they can find a way to get it done in Logan

so we wont have to drive to Salt Lake so often.

If we have to, 

we will...but we are hoping it wont come to that.

His last drug he was on really kept

a lot of the Cancer side effects at bay.

The night sweats stopped,

and the cough,

and the nausea.

and the exhaustion.

They have really been plaguing Travis since he's 

stopped taking the Torisel.

It's been rough.

We are crossing our fingers that this new

drug will start to keep them at bay again,

and he will start to feel himself again.

That would be heaven!

We still feel really optimistic,

really ready for change.

It's been a tough few weeks.

And we feel really worried about

our lovely ladies.

Every now and then we realize 

how much we've focused on what's it's doing to us.

It's making Trav sick and tired,

and turning me into grumpy super mom.

And we feel sorry for ourselves and

We fail to notice the worry

our lovely daughters are feeling,

and tonight it became very apparent.

They've been praying for the cure.

And praying for a 'normal' life.

They don't understand why

they are the only ones with problems.

We tried to explain that each of their

friends have problems too,

and life isn't easy for anyone.

But they are 6 and 8,

and it just doesn't feel like that to them.

We've tried to explain how lucky we are to have such a 

happy family, but they were feeling pretty bad

tonight.  

Man, it's tough.

So selfishly, 

as usual!

We are asking for prayers that this drug to make

Trav feel like himself again.

Prayers for our girls.

We've told them instead of praying for a cure,

we should pray for patience.

And for happiness.

And for normalcy.

And for us to understand that 

our Father in Heaven has a plan for us.

Even if it's not the one we want.

We continue to feel so loved.

And so grateful.

xoxo

We are Travstrong.

I've  been sitting here for over an hour trying to figure out how 

to start this post.

I just can't find the words.

Nothing seems good enough to express our gratitude.

And the words to explain how loved we felt that night are inadequate.

The idea for a fundraiser was sent to us while we were in Salt Lake.

One of the kindest, most thoughtful people I know sent out a mass e-mail

to all of our friends saying,

'We are doing this.  Who wants to help.'

In her excitement, 

she sent the e-mail to me to.

And I quickly replied,

"NO!  Please don't go to all this trouble.

We are fine, we will make do.'

And then rigors started

and I didn't think much about it.

Next thing I know,

there is a date sent.

And posters.

And a website.

And a million and one volunteers.

And already we were in awe.

These neighbors and friends put

SO MUCH

time and effort,

and love,

into this fundraiser.

They spent hours meeting together,

collecting donations,

organizing every single detail.

And we didn't do a single thing to help.

And I still maintain that we don't deserve all this love.

We spotted our faces on posters all over town.

And we made it in the papers,

on the radio,

and pretty much everywhere went.

They plastered the entire valley.

 The night before the fundraiser I didn't sleep.

A wink.

I was so nervous that no one would come.

(And I must clarify, I wasn't worried about us not raising money,

I was worried that our friends who had spent weeks planning,

would have done all of that for nothing.)

The fundraiser started at 4.

And we got there at 2:30 and there were already people there.

And they kept coming!

Strangers.

Lots of kind strangers.

And friends.

So many friends, old and new.

And neighbors.

So many neighbors.

And co-workers.

So many.

And family.

So much family!

It was like a double family reunion, double work party,

double high school reunion,

ward party,

and it was fun!

It was so much fun.

I can't explain how hard it is to be the family

on the poster.

For the past 5 years we have been the cancer family,

but only people who really knew us, knew of our situation.

But now, all of my children's classmates know.

And old friends who had no idea,

now know.

And to random strangers-I am the wife on the poster.

And at first that was very hard to swallow.

But then!

Then we looked around at all of the support we have.

And were. Still are.

OVERWHELMED with love.

overwhelmed with support.

The night for us was not about raising money to help

pay our medical bills,

(Though we are incredibly-incredibly grateful and touched

by the generosity shown to us.  I can't even express how

loved we feel.)

But the night was about how supported we are.

It's been tough, the last few month.

And I know at times we make light of it on the blog,

but it's been harder then I can express.

And at times it just presses down on us

and makes life feel very hard.

That night, every time I turned around I saw love and support

and that was what the night was for us.

It was all about Travis seeing the

mountain of support we have.  He has.

And the army of people, really good people,

we have praying for us.

Thank you to our beautiful friends for 

putting this together for us.

 Thank you seems like such a small thing to say,

for something that was so HUGE,

but know that it is said with the 

humblest of hearts, and it is very sincere.

We love you.

We appreciate you.

And appreciate every single act of service you gave to us 

to make it such a successful and beautiful night.

Thank you to those who came to support us.

To the strangers who came just to run,

because they hate cancer too-

all the way to our closest family members.

 We wont soon forget all those who were there.

Thank you to everyone who donated money

on our behalf.

We feel so blessed and our hearts are so touched.

I wish I could write thank you cards to 

every single one of you.

On top of constantly worrying about cancer,

we've spent the past 5 years paying a hefty amount of

medical bills, and Travis has spent so much time working

while feeling sick to pay them.

 Know that this will help.

So much.  And will not be taken for granted.

And this doesn't seem like enough to make it 

clear how loved and blessed we feel,

but trust me.

We are so grateful.

Someday,

someday-we will be a cancer free family.

And life will be normal again.

Know that because of the kindness we've been shown,

not just Saturday, but all during our journey has forever changed us.

 We will do our best to be more giving.

And be more aware of others needs.

And less selfish.

 And we will spend our lives 

trying to pay others back for the goodness done to us.

Now: some photos!

(My camera died on the first picture I took that night.

Thank you to my fabulous friend Eileen for hooking me up 

with such great pictures!)

This one was taken by my friend Trisha.

We have oodles of bracelets left if anyone wants one, let me know!

I love seeing so many people with their Travstrongs on!

Our family.

We love the shirts.

They say 'survivoring' on the front.

That came from this night 3 years ago.

I've thought about that made up word a lot since then.

In my made up dictionary it would read,

Survivoring; the act of wanting to be a survivor.

We just aren't quite there yet.

Working on it.

Kidman clan

Johnson Clan

We are Travstrong.

The race was first and there was a lot of lovely people there.

When it began and we saw the mountain of people heading up

the canyon, I couldn't keep the tears in.

It was a beautiful, beautiful sight.

Heather Housley,

dear friend and race organizer.

Love her!

Best friends.

My sister, mom, and SIL.

Can't imagine life without them.

My love.

Oh I really, really love him.

Really.

Members of my family who walked.

And Tana, you count as family!

Good friend Hanne and Adyson's bff Lexi finishing the run.

Our kids during the raffle.

They had so much fun!

A few friendly faces and people we adore.

Have I said thank you yet?

Have I mentioned how special the night was?

I can't stop thinking about it.

It was beautiful.

Love to all!

PS-Trav's scan is set for May 10th.  Next Thursday.

We are scared.

It goes like this,

if there is no growth, or any shrinkage we go back.

If there is growth,

we try something new.

And something yucky.

And I have to tell you that our options are

running low.

So let's just keep praying for good scans..mmmkay?