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.