{Always the Kidney}

Things over here haven't been real good the past few

days, and we figure it's time for an update.

First,

Travis was able to start the CABO,

and for the first few weeks he seemed to do really well.

He was getting to be a bit more himself and that was wonderful!

And he was able to go to Augusta to a practice round

of the Masters with friends,

and had a blissful week.

I'm so happy for him.

When he came home we had a few good days

and then the side effects hit.

He has had a really hard few days.

He has no energy,

can't sleep,

stomach issues,

severe heartburn,

muscle aches,

joint pain,

skin issues,

sore throat,

breathing problems,

and sinus problems.

It's been tough.

We figured we could battle through,

and hopefully some of these SE's would subside,

but the major problem right now is his kidney function.

It's not good.

And worsening daily.

Today we met with a Renal specialist to discuss dialysis.

 We are pretty devastated that it has come to this.

Dialysis is hard on the body,.

time consuming,

and just one more thing to add to his already weakened state.

The Doctor today wasn't sure if it was due to his new drug,

or possibly the tumors in his remaining kidney blocking some of the way.

He went in for an ultrasound today so they can see for sure.

The Specialist said he would check the blood again on Monday

and see what the numbers looked like,

and review the ultrasound,

but if the function is as bad, or worse,

we will have to start dialysis next week.

So we are praying,

extremely hard,

that something good will happen over the weekend.

But we aren't crossing our fingers.

We've had a lot to think of the past few days,

and a lot of hard discussions with our beautiful girls.

We are so grateful for so much support,

and ask that you remember Trav in your prayers this

weekend.  And his crappy kidney.

And our beautiful daughters.

And add me too...

I'm not ashamed to ask.

We will keep you posted on Monday what will happen next.

xoxo

 

{CABO}

First,

Thank you all for your kind thoughts and words from my last post.

We always are amazed at the support we have.

We feel very loved.

The past few weeks have been hard.

Trying to figure out the best approach for treatment is tough.

We have been back and forth trying to make a decision.

We decided to pursue a drug called CABO.

(Really Cabozantinib).

How mean to call this drug CABO.

I mean,

really.

We'd much rather be basking in the sun IN CABO

then taking this drug called CABO.

Mean I say.

We've never even been to Cabo.

(Sad face.)

Ok. Enough about our lack of fun filled Mexican Vacations.

CABO isn't approved for RCC.

But for those who have used it,

it has given them good results.

Read this.

And more  here.

That makes us hopeful.

Ive been corresponding with Chris' wife Dena

for a few months now,

and they've also talked to their Dr.

about our case, and pursuing this seemed the right option.

We are so lucky to have a Dr. who listened and ran with it,

despite maybe being a little nervous to prescribe something we don't know 

much about. 

Getting it approved by the insurance took some time.

And work by the Dr.'s office, I'm sure.

(Big Thank you to them).

So as of today,

after one HEFTY co-pay,

the CABO is on it's way.

 We are ready to start something,

it's been too long without anything. 

And I'm terrified.

This drug isn't gonna be a walk in the park.

We expect a lot of the same side effects that he has with Sutent.

And that was rough.

But Trav wants to keep fighting,

and is ready to face all that comes along with it.

I married a good man.

I daresay he's better then most.

(I'm biased so I'll just say better then all...)

Despite how hard the past few weeks have been emotionally,

Trav's felt semi-decent.

He's been able to have a few really good days mixed in with the bad.

We cherish those good days!

Today, for some reason, 

he's been extremely miserable with a stomach and headache.

Hoping he will recover quickly!

Please pray for him to do well on this drug.

Pray his body can handle the toxicity.

Pray the Dr.'s can know the correct dose for him.

Pray the girls can still feel we live in a happy home.

Pray I can manage to give them all what they need!

Sure love and appreciate our huge care giving family.

Travstrong! :) 

      

     

          

  

Results

Results from the latest scan came back today,

and they aren't good.

There was growth pretty much everywhere,

making it pretty obvious that the current drug isn't doing 

any good. There isn't any new spots, and that, at 

least is good news.

While in my gut, I knew this drug wouldn't work,

hearing it and facing it is really hard.

We are running low on options,

and the ones left seem

hard to get,

hard to pay for,

hard to live with.

Bless Trav's heart.  He just doesn't feel good.

We are trying to figure out our next step.

A clinical trial would be the best and smartest move 

for us, but Huntsman isn't currently doing any that fit the bill.

So we are looking at out of state options,

and will be figuring out if there is any possible way to make it happen.

I'm doubtful, but hopeful.

We are also thinking about a drug that isn't approved for RCC,

but will be eventually, and it looks promising for 

heavily treated patients (Trav), and bone mets (also Trav).

Friends we have made through the RCC world, 

The Battle Family,

are currently using this drug (CABO) 

and have written about it here.

We would have to find a way  to get it,

and pay for it, and it all seems impossible,

till I realize that they have done it,

so maybe we can too.

 And they have made it clear they will help us

figure out the loopholes.

We also are wondering if re-challenging the drug that 

worked so well, for almost 4 years,

is worth a shot. 

It feels a bit like we are grasping at straws. 

And we dislike it immensely.

In all of the research I've been doing,

and with the help of people about 800x more knowledgeable

then I,

we've also learned  how rare it is for RCC to happen in both

kidneys.

From what we've read, 

the second tumor is a metastases, but a second primary.

 This usually means there is a gene causing it.

This means that he may have a genetic disorder that has 

caused the cancer in the first place,

and we need to know if he does,

and what exactly it is,

in order to know if our kids could also possess it.

I mean, 

when it rains!

We are looking into going to NIH in Maryland,

a hospital that we don't have to pay!

that will be able to tell us all about it,

and diagnose him and possibly have treatment options available

to us.

Right now,

I wish we were East coast living people.

Because the options seem to be primarily over there,

and not here.

It sucks feeling up in the air without a clue

what to do next.

But we will figure it all out as quickly as possible.

And pray and hope and pray some more for the best.

 As always, 

Thanks for checking in.

Feel free to leave a comment telling Travis how amazing he is.

That man of mine, he works full time,

is a fantastic husband and father,

and he is very sick,

and doesn't feel well.

Let him know that I'm not the only one who feels this way.

{A little update}

So those 3 day a weeks shots didn't last long.

That husband of mine is a trooper,

but seriously, 

those shots just did him in and there was no possible way

to live,

and have any quality of life with the EPIC flu 3 days a week.

He opted for once a week instead,

and for few weeks that seemed to be ok.

It didn't make for a good weekend though.

Friday nights the flu would begin and all day

Saturday and Sunday he would be pretty miserable.

The ladies and I disappear for the day on Saturday

and tip toe around the house in hopes he can catch up

on sleep.  His little ladies are pretty awesome care givers.

And really even on Monday when he'd drag himself to work,

he wasn't feeling great.

The fatigue has just been so hard for so long that

getting over that flu feeling doesn't come easy.

After meeting with his Doctor last week they opted

to take a small break from the shot till we scan and see how things

are progressing.  He is still getting injections.

It's not the most aggressive thing for us to do,

and being aggressive is extremely important,

but I think getting Trav's health back to a place where

he can really fight is more important first.

 He hasn't had any appetite and feels miserable most of the time.

So we are setting a goal to make progress there-scan-and see what happens next

I feel good about it.

He's taking some medicine to improve his appetite and I'm 

constantly feeding him, or trying at least!

We've been reading about how Sutent can affect the thyroid,

and just today they checked and found that indeed, 

his thyroid wasn't doing it's job...like at all...so he will get that in working order

and I'm very hopeful that will be a huge step in the right direction.

 It explains so much why he's been feeling the way he has.

We are still so grateful to the village that is currently taking care of us.

From meals, to little gifts on our doorsteps, to kind notes and texts.

I often feel very much like a burden on my friends because they do so much for me.

Thank you.  It's so nice to feel loved and taken care of.

Scan in 3 weeks.

I plan on starting the praying now.

:)

 

Interferon and Avastin-and my Resolution.

Interferon and Avastin.

WARNING:

This post is long,

not well thought out.

And a jumbled mess.

Deal with it.

In my last post I wrote about our hesitation

about our new drug.

I've read about the side effects,

and went in with a lot of questions for the Dr.

Sometimes I must look like such a bossy wife when we

meet with the Dr. and nurses.

Seriously, Trav is so laid back and mellow,

and then I come in all high strung and worried,

and full of questions...because "I read this...and I read that..."

They really must be thinking these two things.

1-How did these 2 end up together.

and

2-We are the medical professionals.

Stop reading so much.

To answer these questions I would say this.

1-We balance each other out nicely.

Usually.

and 

2-I'm trying to stop reading so much.

Sort of.

(And in my defense the people who write the stuff I'm reading

know a whole lot about RCC.  Sometimes... (most of the time),

it all goes right over my head.

They make me wonder if we should be seeing a RCC expert.

But then I'm reminded of how much we dislike our RCC expert,

and how little he listened to us.

And how much we really love our general ONC.

Who still calls T "professor".

And who called me "Marianne" the other day.

 

I feel so much that he is fully invested in us,

while our specialist makes us feel like a number.

 So we are trusting our lovely Dr. and remembering

that our specialist and him do confer.

And this post is not going at all where I intended it too..

So I'll now stop rambling about the Dr.'s and all of my hesitations

and I'll start rambling about our past week.

Monday Trav got his first injection at about 4:30 at the Dr.'s office.

And around 7:00 that night after we'd eaten dinner, I was cleaning up and I 

heard Sienna say "Dad, you are really shivering!"

Sure enough,

Trav was on the couch,

and was rigoring.

And I knew we were in for a treat.

We got out an electric blanket,

and 6! huge blankets and bundled him up,

and about an hour and a half later,

he finally started settling down.

And had a pretty restless night of sleep.

 And quite honestly,

I just sat there and cried.

 

This was not something I wanted my poor kids

to see, and not something I wanted to experience again, 

(IL-2 was enough!),

and more importantly,

not something I wanted Trav to have to deal with.

 

Wednesday he went into get his first Avastin infusion.

And they gave him another shot about the same time.

 

He didn't rigor Wednesday,

but got VERY fevered,

and honestly was really out of it for a few hours.

 And after he finally dozed,

and woke to a bucket of sweat,

and then dozed a little more,

I cried again.

 

You'd think I was the one having all this crap put in me!

 

By Friday,

I was feeling ready to throw in the towel.

I was miserable.

Trav hadn't had a good night sleep in a solid 3 weeks.

(Really, he has been missing his sleep!)

 He gave himself the shot around 8,

(After a little pep talk from Trav, to Trav)

And we watched the clock wondering when the fun would begin.

I was expecting the worst,

and we sat around waiting.

And T watched TV while I watched T.

And then we both fell asleep,

and stayed asleep for most of the night.

 

FINALLY Trav got a decent night of sleep.

Was it wonderful?

No.

But there weren't rigors, 

and he was able to sleep through the fevers and aches and chills.

And I didn't cry.

 A miracle itself this week.

This was the first night Trav hasn't woke up probably 15 times.

Only a few.

 

Now I don't want to belittle his meds 

and make it sound easy,

because his body is constantly aching

and he still has so much fatigue.

He's constantly exhausted.

He sits on the couch to watch TV,

and within seconds he is asleep.

But we are both hoping that he will be able

to start sleeping good all night, every night,

and will be able to gain some strength again.

We are hopeful that the side effects will be manageable

and he will be able to sleep through the toughest of it all.

We are hopeful that his stomach will be able to get back to normal.

And obviously,

we are hopeful that it will work!

We want a semi normal life back!

 

Since my last post,
I have spoken to a few people who this drug has done wonders for.

Their dosing is different,

one of them only has interferon once a week, 

rather then 3 times a week...

And we are definitely going to remember 

this if 3x is too much to handle.

But we will just go with the flow for now.

Trav just gave himself a shot,

the kids are in bed,

and we are waiting for it all to kick in.

And praying it is a sleep filled night and things go ok!

 

Frankly,

things have been beyond hard the past few weeks.

Really, the past year,

but the past few weeks have put a strain on us.

We had no idea how blessed and lucky we were 

when he was just getting weekly infusions,

with very minimal side effects.

 

2012 was just plain HARD.

We've spent weeks in the hospital,

and Trav's body has been through so much.

He's lost weight...(I've gained it!),

and it's been a test to our entire family.

 We've had to answer some tough questions from our sweet 

little ladies,

and have had to rely on each other an awful lot.

 

We've missed 2011.

 

That being said,

we've also learned a lot about how amazing our friends and families are this past year.

They are giving, thoughtful,

relentlessly caring people.

They pretend to not notice that I have bags under my eyes and say

"you look fabulous!" so excitedly that I almost believe them.

They let me cry if I need to,

but almost always ask if they can hug me..

just in case I'm not in a crying mood.

I mentioned once that Trav's new craving was caramel apples,

and the next day we have 10.

Really, people just kept bringing them.

(Next time I'm gonna say he really wants me to have new shoes...

and we will see what happens?)

(Kidding.)

And we still think about the fundraiser held for our family daily.

And we are in awe of that night and how loved we still feel from it.

And just now, as I was writing this post, 

someone rang the doorbell and ran,

and left us all our favorite drinks and a beautiful card giving us encouragement.

The little ladies friends' parents have been so nice to understand

when we send the kids to their house,

and when people stop by and Trav isn't feeling up to snuff,

they understand when I plainly say,

"You can't come in right now."

They just smile and understand.

And I appreciate that!

We are surrounded by goodness.

And truthfully,

we've needed it, and are beyond grateful for it.

 And we both wish we could stop being on the receiving end,

and start being more giving.

But I guess this is where we are in our season of life...

and we hope you all know that we couldn't get through without you.

 

I've made it a goal to find a way for Trav to get back

some of the oomph he's lost this last year.

That's my resolution!

Join me?

You don't need to lose those pesky lbs anyways....

 

Gold star to anyone who made it to the end of this post.

For real.

 

 

{Tomorrow}

For the past million years that Trav's been fighting,

(OK, only 7. Whatever. Feels like MORE.)

I've been scouring the Internet for resources,

information, and actual people who are facing our same battles.

I've found a few message boards where people

discuss how they combat side effects,

clinical trials, and what they might do in your situation.

Some of these people know more then a lot 

of ONCs out there.  They are a smart, knowledgeable group,

 these RCC patients.

At first, I became obsessed with these boards,

and with each new update, or email,

I would read with a thirst. 

It wasn't good for me, or us.

There were too many deaths.

Too many really bad side effects.

Too many abnormal situations.

And I found myself thinking 'what if' way too much.

So I have stayed away.

Maybe that makes others in our situation find me a little naive

and not the best advocate for Travis, 

but to be a good mom, and wife, I have had to learn to trust

in our doctors, and our feelings about the drugs we were gonna use.

Last night,

for the first time in a few years,

I found myself searching these boards and sights again.

I just needed to know more about what we are facing when tomorrow comes.

I've learned not a lot of people are on this group of drugs

together.  And I've learned that interferon is gonna

be even tougher then we thought.

One person has compared her side effects to IL-2.

(rigors!)

And another has said it will feel like the worst flu he's ever had.

He will be in pain.

And just as soon as he gets over it,

he'll get another shot.

It's time to start another treatment.

He's had too much time 'off' while figuring out our game plan,

and the insurance has approved it all.

So tomorrow he will start.

 As one of our cancer friends said yesterday,

"sometimes you just have to make a call and go with it."

We've made our call.

And I keep reminding myself that if it is too hard,

we have other options.

And we have a Dr. who will listen to us and help us make hard choices.

I am feeling very unsure that this is the route that we should have gone,

and very worried about  Travis.

And the girls.

Every person handles side effects differently,

so I am crossing everything I can cross that this is 

tolerable for him.  And praying that we can find a semi normal

lifestyle again.

I'd like 2013 to be better then 2012.

Is that too much to ask??

 Oh,

And while I'm here-
A big giant thank you to our lovely neighbors and friends who take such

good care of us.

We are being fed delicious dinners once a week,

(my kids are getting used to all this home cookin!)

We have yet to have to shovel our driveway.

We've been showered with love the past few years,

and we are still so grateful to everyone for understanding

just what we need, and for always caring.

Thank you.

Wish us luck!

 

 

{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.