Saturday, June 22, 2013

{Kareoke Night and the plan}

First thing first:

In my last post I wrote we were trying to make some hard 
choices about treatment options.
We knew the day after I wrote that post,
that it was time to say goodbye to CABO.
Travis was rapidly getting worse.
We really were living in a quite depressing haze.

we have decided to try another drug called Votrient.
It's comparable to Sutent, which he has already done...
and really hated.  It was tough.
But, it did give him some stability-but the side effects are tough.
Not as tough as CABO maybe, 
but tough.

 Now, will it work?
I am trying to be optimistic,
but Sutent wasn't our answer,
so I'm betting Votrient wont be also. 

Why are we trying it?
 Because our next drug we'd like to try
(called afinitor),
which was a lot like the first drug (Torisel),
that worked for 4 beautiful years...
will most likely put Travis on dialysis.

5 hours a day,
3 days a week.

And it makes you feel pretty awful,
on top of the side effects of the chemo.

You see the dilemma?
 Trav's createnine has been dropping.
I am just crossing every crossable body part 
that it will continue to do so while he tries out
so if/when it does fail,
we can try afinitor without dialysis.

When I write it down it doesn't sound very promising or good...
but I'm having a hard time feeling worried, sad, or blue.

Because Travis has been off of chemo for a week now,
and he feels decent!
It's heaven.

We went to lunch the other day and I literally teared up with joy on the
way home.  It's been heaven.
We've laughed so much.  And been out!  Of the house!
It has been a very sweet reminder of how much we really like each other.
 We always know we love each other..
but between feeling sick and force feedings and all that comes along with it,
it's easy to forget that 
we. have. fun. together.

I've just loved this past week.
I don't want it to end....

But, I am grateful that he has been able to gain some strength,
and weight (5 lbs last week!)
(His appetite is back in full force.  He had 2 lunches today!)
and as soon as insurance approves us,
we will start.
I am really stocking up all this joy to get us through the next step.

A fundraiser was held in our honor Wednesday night.
My friend from high school's son-Mason, had cancer when he was 18 months old.
Michelle and I really had lost touch by this point,
but cancer gives people a bond...the club no one wants to join,
and we were able to reconnect.
Today, Mason is a very happy, very healthy, and VERY adorable and loved
little boy of 7 (who I'm hoping will date Sienna when he's older...).
Since then, Michelle has started a foundation called TEAM MASON.
They chose our family to hold a karaoke night for,
and I can't even begin to tell you how fun it was!

Travis was feeling good,
we had our closest family members there,
some of our very dearest friends,
and a lot of really bad singing.

I haven't laughed that hard in MONTHS!

I just wanted to thank those who attended,
who spent hours of their time for us, and to those
who have supported us along the way.
We are beyond touched by the generosity of others,
and cannot tell you what it does to our frame of mind to see such a support system.
We are lifted up in so many ways.
There isn't a great way for me to express how loved we feel,
and how incredibly grateful we are,
but it is genuine, and our hearts are incredibly full.
I hope someday I am in a season to give back the way so many have given to us.

Here is a link to some pics capturing the night.


Wednesday, June 12, 2013

CABO-The worst named drug ever.

we've resumed CABO.

I'll say it again,
the name is misleading and just wrong.
It should be named 
Or Mesquite?

I don't think I'll ever vacation to CABO.
This drug has ruined me.

I mentioned in our last post that we 
were gonna try again,
and pray that the side effects stayed minimal.

A week ago Monday Travis got his Stint replaced in his Kidney,
and the next day he took his first dose.
 We've opted to do 5 days on, and 2 off...
mostly so we had something to look forward to.

 "Come Friday night you don't have to take a pill!"

It gets him through.

Anyhow, the first 3 days weren't that bad.
Just some serious nausea...
but he was able to snap out of it by 12ish and work the afternoons.

He took the weekend off and then resumed again Sunday night.

Monday morning it was apparent that this week wasn't gonna be easy.
He wakes up to SEVERE nausea.
And it may lessen a bit, but it doesn't really go away.

Along with the nausea, there is some pretty back bone aches.
We knew they could come with this drug,
but they are lessening and are making life pretty tough on T.
 And then there are the stomach issues.
The pain is different then the enteritis,
but it's there all the same.
 This makes eating tough.
He's very thin.
And dropping weight rapidly, and that's worrisome for me.
 In this week alone he dropped 6 lbs.
 (On a less serious note:  I stress eat.  I'm thinking we aren't so evenly matched!)
He hasn't been able to go in to work all week,
which is a whole different post.

I  have tried to make our cancer blog upbeat, and happy,
but mostly I want it to be honest and accurate,
and so I'm done apologizing for it being a downer.
 Because it's just how it is right now.

I wake up every morning and ready the ladies for the day,
and wait for Travis to wake up to see what the day will be like.
 Most mornings, he drags himself to the couch fighting the urge to throw up.
Most of the time his coloring is off, and it's obvious that he is fighting 
about 5 different ailments.

At some point he rallys and is able to shower,
but somedays, he doesn't quite make it.
I get it,
at some point you just call the day a loss and hope for a better tomorrow.

During this time,
I'm trying to make him as comfortable as possible,
and nagging the crap out of him to eat,
and doing my best to ensure the ladies are still having a good summer...
and it's overwhelming for all of us.
I get just a little envious of people who are out doing summery things!

The other day I went to a wedding shower for about a half hour and realized
that was the first time I've seen my friends in a solid month.
(This isn't a complaint, there is no where I'd rather be then taking care of Travis,
but man, our life has changed!)

So here we are again,
trying to make some tough choices.
Do we give up a drug that is potentially working and extending life,
but also makes him feel more like he's dying then living?
Or does he keep on this path?
We have a few more options that we could try,
but they are pretty much like ones we've tried before,
that have the odds of them working aren't great.
And most likely, they will put him on dialysis.
We got his blood drawn today and will have a little
chat with the Dr. tomorrow to make some of these tough 

I have no words to express how hard it is to watch Travis suffer.
It's unfair.
I'd do just about anything to take him out
for a day of fun and no pain,
and just wish I could make it go away.
We are well aware of how tough our future is,
and we've known for a long time of what we may 
someday face...
but man,
I don't think anything really prepares you for how hard the entire battle can be.
 I wish for ignorance sometimes. :)

We have appreciated those who have really been there for us 
the past few months as it seems, we've been thrown more curve balls then we'd care for.
We have many who text daily just to see what they can do for him,
and it's just nice to know that while people may not completely understand,
they still know what's going on.
We also are appreciative of friends who understand why I am lacking in many areas right now.
Someday I will remember every bday again...and I'll make dinners when others are sick,
and I'll offer to watch your kids for a change!
We are so grateful for those who understand our shortcomings right now!

Tonight you can pray for a better day tomorrow and
for some help making the tough choices we have ahead.

We love our TRAVSTRONG family!

This is being held for our family next week.
I feel completely awkward writing about it,
but the amazing people who are running it have spent a whole
lot of time for us,
and we are so grateful.
If you are coming,
they would love for you to get tickets they know how
many to plan on.  I don't want this to be any more stressful to them then it already has been!