This blog post is sort of a response to a post that my friend and fellow Cholangio wife wrote on her blog a few days ago. Her name is Dorien. She is in her young 40’s and her husband Kyle has Cholangio. They have 4 children. She wrote a nitty gritty down and dirty gutsy post about the feelings that we go through when walking this Cholangio walk. It was awesome and I totally felt everything that she wrote about.

Well, here’s the thing. As I’m reading the post out loud to Travis and my cousin Ali, we found ourselves having a good laugh. Even though the post was tough, we were laughing. In the post she wrote about our family. She said something like… The Roberts have more faith in their pinky fingers than we have in our whole bodies.

Yes, we laughed because it seemed so crazy to us that people on the outside think that of us. I replied to her and said that I was glad that we were their “faith” friends:).

The problem is that I actually don’t know what that means. The word FAITH has plagued me for months now. Faith in what? I hear it all of the time dealing with Travs cancer. People tell us that we have to have faith. People tell us that we need to have faith so that God is able to provide a miracle? We need to have enough faith… Enough belief… We need to say the right words… We need to confess the words that we speak that might show doubt???

Mercy me people it’s a whole lot of pressure. And I love the people who tell me these things. I truly appreciate that they want what is best for us. I’m not mocking or trying to start a debate. Please keep praying for us and loving us. I just want to share my feelings. We don’t believe these things. We don’t believe that God needs us to help Him provide a miracle. We just don’t!

Anyway, I was expressing some frustration on the topic with the ladies in my Bible study just a few weeks ago and something amazing happened. In a 20 minute conversation with the ladies whom I love so much I was given freedom from that word FAITH.

Don’t gasp! Don’t think that I have fallen off the deep end! I have not lost my faith in what I believe is important.

You see, I have faith in God. I have faith in Jesus. Believe me I have faith that the Holy Spirit lives inside of me because I could not go through this without that inner Spirit. I have faith that the Holy Spirit lives inside of Travis. People don’t make the changes that he has made so quickly and so consistently on their own. Did you see the photo above? This is the new Trav reading to his sons class:). This is the kind of stuff that he does all of the time now. Some people may think I sound crazy, but I have faith that a man named Jesus walked this earth and lived a perfect life. I have faith that He performed miracles. (In fact I just finished studying the book of John and the book is all about miracles. Many miracles that He performed despite the lack of faith in the humans that were around Him. If you don’t believe me just look at His Lazarus miracle. He performed the miracle of raising Lazarus from the dead even though, Mary who was requesting the miracle did not have faith.) I have faith that Jesus died on the cross for our sins and that He rose from the dead. I have faith in what I believe is important.

In that one conversation with the ladies I realized that I could be free from that word FAITH when it comes to Travis and Cholangio. I’m sorry, it scares me. It’s been over 7 months and when people tell us that if we lack faith we could basically be blocking Gods power it’s scary.

It is scary because we are human. And doubt creeps in all of the time.

We go to horrible doctors appointments where we can’t leave without them telling us that there is no medical chance of beating CC.

It is scary because I have become friends with other young women like myself whose husbands have CC and we are no better than them. They love their husbands just as much as I love mine. Their children need their dads just as much as my kids need Trav.

It is scary because right before we started this journey we lost our friend Pete Adler to a heart attack. In a moment he was gone. He never had the time that we have right now. He didn’t get to say goodbye to his wife and two daughters. He did not have the chance to write letters to his grand babies that he loved beyond words. He was gone in a minute without time to have the faith to save himself. Our family is no better than the Adler family.

So yes, doubt creeps in. I can’t help it. We can’t help it. But as I keep mentioning the ladies. The ladies that I studied John with… They gave me my word. My word that I can cling to. My word that never makes me feel guilty. It’s TRUST! I can Trust that God is going to walk us through this journey no matter where this journey takes us. I can Trust that He loves us and that He wants what is best for us. I can Trust that He will carry me through when I am too tired to walk on my own. I can Trust that He said that in this world there will be struggles (see photos below – those pics are from the week we were waiting to see if Trav had cancer. We are both Googling. Pits in our stomachs. Googling! We had no clue what was about to come) I can Trust that this world is temporary and that He has so much more for us. I can trust that He is a God of miracles. (I am reading 90 minutes in Heaven to Travis which is so good, and it has a modern day miracle in the book. I know they happen.) I can trust that He can heal Travis, or Kyle, or Gordon, or Linh, or Mike(My Cholangio friends Hubbies). He can. I can pray for that and I can trust that my faith in Him is enough. Whatever I have to offer. I trust that it is enough.

I bet that sounds crazy to some, but not to me.

I wrote the verse, “Trust in The Lord with all of your heart and lean not on your own understanding. In all of your ways acknowledge Him and He will direct your path”, in my last post. That’s the verse that gets me through.

Outside of prayer that’s all that I can do.

Just Trust!

The days will be hard.

The days will be good.

There will be struggles.

We don’t know where this journey will lead us.

But, now I know that I can have FAITH in what is important and I can TRUST that He will take care of the rest!

Dorien’s blog: http://thisiswhativegotfortoday.blogspot.com
The post that I referenced is called Decisions Decisions

Puzzle Pieces.

Individually, they look like…nothing.  Just some scribble or blobs of color.  Certainly nothing you can ever differentiate.

The funny thing about puzzles is that the more pieces there are to a puzzle, the harder it is to make sense of the individual piece.  Just a blob of color.  Nothing significant or particularly deciphering about it.

But.

Even with a 1000 piece puzzle.  It is never complete without each, indecipherable piece.

999 pieces don’t complete a picture.

Putting together a puzzle with 1000 pieces requires determination, willpower and, most of all, patience.

Now…imagine being asked to put together a puzzle without having the benefit of seeing the final picture first.  No cover to the box.  No picture.  Just handed 1000 tiny pieces in a Ziploc bag.

Can you imagine the frustration? The overwhelming feeling of where do I even begin? 

Carrie and Travis are living out a puzzle.  Each day is a piece.  An individual piece to a 1000 piece puzzle.  And sometimes, on their own, the day… the decision… the choice may seem insignificant.  But their end picture would not be complete without it.  And they don’t get to see the final picture until all the pieces are together.

When this journey first began, back in April, Carrie knew in her gut that they needed to go to MD Anderson.  But they were told treatment should not be delayed.  They were told there is really only one course of treatment when it comes to Cholangiocarcinoma.  They were told that MD Anderson took a while to get into.  And there was no time to waste.

But Carrie knew they were supposed to go.

A piece of the puzzle…

Somehow. Some way. They needed to get in…and get in fast.  Treatment had to start and there was not time to waste.  But Carrie was being called.

And then a phone call.  A friend.  A good friend had a contact on the Board of Directors.  Some calls were made.  Some strings were pulled.  And, within a week or so, they were at MD Anderson for their consult.

A piece of the puzzle…

As you probably recall, Disneyland for Dead People (aka MD Anderson), was a disappointment.  In Carrie’s words, there was no “miracle cure” that only MD Anderson had access to.  It was such a disappointment.  Carrie comforted herself by saying she never had to say “what if” but…still…a disappointment.

Or was it just an undecipherable piece of the puzzle…

The treatment began.  And it worked.  It worked really well.  A 96+% reduction in his cancer marker.  From 161,000 to 3,900.  In three months.  The puzzle pieces seemed to be coming together and coming together fast.  We thought a picture was forming. A beautiful picture.

And then an odd piece.  A piece that didn’t seem to…fit.

The marker went…up?!?!  How did that fit?  But, like it or not, it was a piece of the puzzle that had to fit in order to complete the picture.

Because 999 pieces don’t complete a picture.

What was next? The next suggested course of treatment that seemed…brutal?  Or something else?

Because of that seemingly insignificant trip to MD Anderson Travis was considered a patient of MD Anderson.  And there was a new trial.  A new trial the doctors seemed to be excited about.  The piece of the puzzle that seemed so insignifigant at the time was suddenly an intricate part to the puzzle. Had they not made that trip.  The trip that seemed to have no other purpose than to prevent later “what ifs”.  Had Travis not already been considered a patient at MD Anderson.  There would be no trial option for him. That trip was suddenly becoming an important piece of the puzzle.

But could he get in?

Travis’ chemo had been working so well.  His marker wasn’t slowly ticking down.  It was skydiving.  And then it stopped.  It never bounced around as others have reported.  It didn’t taper off. It consistently went down.  And then jumped up.  Way up.

Everyone was devastated.  How could this be happening?  Why so soon? How could it just make a 180…just like that? It seemed so…wrong.

But really.  What we didn’t know.  Was that it was another piece of the puzzle.

The trial had a window of opening.  A brief window.  Had Travis’ treatment worked just one more time he would not have gotten into the trial. Had his marker bounced around a little before going up.  He would have missed the window.  Had the timing not been exactly what it was…there would be no trial for Travis.

A piece of the puzzle.

The past three weeks have been rough.  Really rough.  Sickness only a cancer patient knows.  Pain only a cancer patient can relate to. Being brought to the point of giving up…throwing in the towel…just to somehow muster up a bit more strength from a place you didn’t know existed.

And while it was all miserable.  Every bit of it was pieces of the puzzle. 

I have been thinking about this post for the last few days.  Thinking back over the past 8+ months.  Knowing what I was going to say.  Amazed by my God who sees the big picture and tolerates us when we curse Him for the individual pieces.  I began writing it this morning knowing the CA19-9 result would come in at any point.  I knew it was going to be great.  I saw the picture forming.  The pieces coming together.  I couldn’t wait to lecture everyone on trusting Him through the pieces because the picture was going to be beautiful.  I just needed the call.

And then it came.

The CA19-9 is up.

Wait. What?

That piece doesn’t fit.  

That can’t be right. But it is up…1000 points.

The Physician Assistant, Lindsey, said not to panic.  It might be considered a stabilization.  All of the other cancer markers the Roberts didn’t realize were being checked were down.  Way down.

How could this be up?

Another piece to the puzzle.

As Travis talked through it something dawned on him.  His blood was taken on the first day of the trip to MD Anderson last month.  He didn’t start his treatment until eight days later.

Could that be it?

A quick call back to Lindsey and a bit of comfort.  Who knows how high the marker went up in those eight days of no treatment?  We have seen what Travis’ marker can do in two weeks.  Changes by the tens of thousands. And we are looking at a mere 1,000.   Lindsey indicated that was likely it and this could be looked at as a stabilization of the CA19-9 if not a downturn.

Another piece of the puzzle.

The throwing up mentioned in the previous post was thought to be caused by severe dehydration.  And, sure enough, after some IV fluids Travis feels like himself again.  He was prescribed some steroids to help get his rash under control and they are confident it will help.  It seems to already be working.

All pieces.

His CT scan is scheduled for December 16th.  That will tell a lot. And they, of course, will get another CA19-9.  One that will allow them to compare apples to apples.

Unfortunately, we don’t have the box cover to this puzzle.  We can’t see what the result is going to be.  But Someone does.  The Puzzle Master Himself.

And…because of that…this I know.  Good or bad…it’s another piece of the puzzle.

Because 999 pieces don’t complete the picture.

PART ONE
We are sitting on the plane. Waiting to take off for Houston, Texas. Feeling excited, nervous, numb, sad, blessed… The list goes on.

Excited… We are able to travel to MDA for medical treatment.

Nervous… The news that we are going for is nerve wracking. Travis has been sick for 2 weeks now. We know that the chemo is causing the sickness, but we want to know if they can provide some relief for these symptoms because they are really bad:(! They have definitely changed Travs quality of life for the first time since he was diagnosed . Then we have nerves about the CA19-9. What will it look like? Will it have gone down?

Numb… It’s really hard to feel the raw emotions of cancer 24/7 so yes, numb. It’s a place you have to go sometimes to get through the day. Whenever my brain starts going crazy I stop it in its tracks with, “Trust the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your path.” I let those words from the Bible take over my worry and then I’ve gotta say I can feel a little numb because I give my worries away!!! Yes, they come back. They’re not over forever, but it gets me through many hard times. Thank you God.

Sad… We are leaving our babies again. This time two of our little ones are sick, the boys! Pippi is not sick, but she has had such a hard time lately watching her daddy. Now she is having separation issues. Her sweet teacher, Ms Kimberlee has to pull her from my arms as she is screaming in carpool line at drop off. Today I had to force her out of my arms while she was screaming and drive away knowing that I wouldn’t see her for 3 days. Of course I cried. How could I not? My wonderful mom and dad and my angel cousin Ali will be with our babies while we are gone. The babes will be fine. They will be loved. But, we were still so sad to leave a screaming girl and two sick boys:(. Esp to deal with Cancer!

Blessed… What can I say? How can I list everything? We have family and friends who have reached out and cared for us more than I ever would have imagined. If your reading this… You are one of them. Just caring about our story is amazing! On top of that…

We have offers from everywhere to bring us meals. I want to say that after the holidays I will most likely have my sister start a meal calendar again. Watch for an email or FB msg or blog post in Jan. We received meals for almost 4 months when Trav was diagnosed and it was a HUGE help.

Last night we received a beautiful basket of sweets from an old friend Ashley Woodlief who totally surprised us. Thank you so much!

Then this morning we got a knock on the door from my friend Lori from Trey’s K-5 class who had goody bags for the kids for while we are away. What a sweet surprise!

I personally have the sweetest Bible study group who is always there for me and my family.

We can’t say enough about our kids teachers. Trey’s K-5 teacher, Mrs Decker was put into our lives by God as well as the entire group of kids and parents in the class. They surround us with Gods love and grace at all times. Then I mentioned Pippi having recent troubles going to school, but thanks to the love of Ms Sue and Ms Kimberlee they watch her like a hawk throughout the day and make sure she doesn’t have problems while she is away from mommy and daddy:). Thank you to our teachers who are so very important.

We received a meal last week from my friend Meredith that made our night easy and delish!!!

My sister left her 3 kids with her hubby in Chatt, TN just to come spend a sister day with me last week. She always has the right things to say:).

Also, this Sunday Travis and I stood before the church with our 3 babes and dedicated them to The Lord and committed to raising them in a Christian home. This is something that I have been waiting to do for 6 years and now that Trav and I are in one accord this is something that we were able to do!

After the dedication my best friend (the main writer of this blog) Kristina Gansser fixed a beautiful lunch for a few friends and family members who helped celebrate the day. Just FYI, her food and presentation for a party are top notch just like her writing:). One talented gal!

Another huge blessing for me is that I along with 4 other ladies have helped start a small Facebook support group for ladies whose husbands have Cholangio. We call ourselves CC Wives and joke that we wish we were MLB players wives or something. But we aren’t:(! We were instant friends because of our intense and horrible bond. We are blessed to have one another.

So BLESSED we are! Trav continues to have wonderful friends constantly checking up on him and caring for him. Even though it has been really tough lately Trav still amazes me with his attitude. I recently had a friend who told me that I had such a positive spirit and that it must be so helpful for Trav. I had to quickly explain that it was quite the opposite. Travs positive spirit and willingness to fight is what keeps me going. He is so strong. I don’t think that I could ever deal with things as well as he has.

PART TWO
We have had a horrible day. Our flight went fine, but from there it went down hill.
We had decided just to Priceline a hotel room when we got to Houston. Trav does this all of the time when he travels. Well, as a note, never do that in Houston. The entire city was booked. We looked and looked and looked for a hotel. We checked every website, made phone calls, and walked into many hotels. NOTHING!!!!
While this was going on we were supposed to be meeting one of the couples that’s in my CC Wives support group. We all live in different areas of the country so Heather and I were so excited that we would be at MDA at the same time so we (including our hubs) can share and support one another face to face.
Well as we are in the process of combing the city for a hotel and trying to work out a time to meet our new friends Trav started getting really sick. REALLY SICK!!! Opening the car door and throwing up kind of sick.
Unfortunately we had to cancel our dinner with our new friends. I was so sad:(.
We called my mom about the hotel and she got on her computer and praise God, she found us a funny little hotel that is nice and clean and close to the hospital. We are singing her praises tonight. It really is a funny little place, but it is a place:). YAY for that!!!
Trav is still sick, but at least we have a place for him to lay his head.
We are praying that tomorrow will be a better day with positive news and answers to these awful side effects.

This post was kind of all over, but it’s very much our life right now.
Love to all of our wonderful friends and family and to all of you who pray without even knowing us! Love love love to you all!
We will post an MD Anderson update tomorrow!

Folks have been requesting an update.  So here’s the only update that keeps coming to my mind…

Cancer sucks.

I know.  Not quite the update people were looking for…

Travis has been on the trial for 12 days now and it is beginning to take its toll.  The side effects are many and they suck.

Food has lost its taste.  Nothing tastes good.  It doesn’t sound like a big deal but imagine, for a moment, not being able to enjoy a single bite of food.  Steak.  Cake.  Ice Cream.  A peanut butter sandwich.  Nothing.

In the beginning this didn’t matter because everything he ate went right through him…without stopping.  But, thankfully, he got that under control with the help of his new best friend…Imodium AD.  And so his appetite is back but is taste buds are not.

It sucks.

The rash has appeared.  At first it simply attacked a small part of his face.  Then it grew.  Spread.  And now it covers a large part of his upper body.  And…as promised…it is painful.  Painful to the point that it draws blood.  I wish I could say I was exaggerating.  But I’m not.  Today he has scabs on his face where his skin cracked open and bled yesterday.  Travis compares it to a sunburn.  Apparently a bad one.  And it comes complete with chills.

Fatigue is worse this time, not just because the medicine is causing it, but because he is awake half the night fighting the chills.

Cancer.  Chemo.  Directed Therapy.  It all just….

sucks.

But there is a silver lining.

Last Thursday, the doctor called Travis and asked if he had a rash yet and Travis said “nope.”  Normally we would take this as good news but, as it turns out, the rash is usually a sign that the medicine is working.

And…just a few hours later…the rash appeared.

Then.  Another call.

The first two trial participants had their first tests done.  One showed a 2% reduction of their cancer and the other a 14% reduction.

It’s working.

Less than two percent of cancer patients make it into a trial.  And, of those, how many see positive results from their trial?

And so.  Once again.  We ask you to pray.  They have put Travis on an antibiotic that is supposed to help his rash.  Pray that it does.  Pray that the not-so-scientific assumption that “the appearance of a rash means the therapy is working”…becomes scientific and means that the therapy is working.  

But most of all.  Just pray for Travis and Carrie walking through this.  For peace. For courage. For strength. For perseverance. For hope.  For fight.

They need it.  They need all we can give them.

Because…

cancer sucks.