Tag Archives: ca19-9

July 27, 2013

Reminders

By concretefaithblog

Throughout life we are given many reminders.  Reminders of the past.  Reminders of future promises.  Reminders of present circumstances.  Reminders are everywhere.

Reminders can be a great thing.  When you sit at the beach, and watch the waves roll in and hear the seagulls chirp, you are reminded of God’s greatness.  His majesty.  He reminds us of His presence through nature.

Reminders can be hard too though.

When Travis got his amazing results back from the CT scan last week I revisited The Cholangiocarcinoma Foundation’s website.  With so much promise.  With such amazing results.  What had I missed?  There must have been someone.  Someone with stage 4 who had…won.

And then I was reminded….

I was reminded of the statistics.  I was reminded of the devastation that Cholangiocarcinoma is.  I was reminded of the reality.  

And I wept.

I wept for those who have gone through this.  For those going through it.  And, most of all, I wept for my dear friends.

While the vast majority of Cholangio patients do not respond to treatment the way Travis has…some do.  A few.

And I was reminded…

Even those few, who respond well to treatment, even they have a life expectancy of three years or less.

Three years is a miracle.

Trey will be eight.  Piper will be six.  Jake….three.

Reminders can suck.

Thursday Travis had his sixth chemotherapy treatment and he and Carrie met with his cancer counselor.  They ran into Travis’ doctor.  And they were bombarded with reminders. 

His cancer counselor reminded him that she discusses cancer and diagnosis’s with doctors every day. However, when she says the word “cholangiocarcinoma” to any doctor they typically just shake their head no.  She reminded Travis and Carrie to stay grounded…despite his positive results.

His doctor discussed how excited he was about the CT scan and the promise  it shows.  But he reminded them to be prepared.  Be prepared for the CA19-9 to start going up.  He reminded them that the CA19-9 always goes up.

Reminders.

After last week’s results were published, many people asked “what’s next?”  “Is it time for surgery?”  “Where are we?”  So allow me to provide you with a reminder.  The cancer has to be completely out of Travis’ lymph nodes to consider surgery.  Additionally, it has to stay out of the lymph nodes and not spread to anywhere else for about six months before the surgeons will start considering surgery.

A reminder that we still have a long way to go.  A reminder that prayer is still very much needed.

Sometimes when you have been living in circumstances for an extended period of time it becomes “the normal”.  Everybody I have met.  Everybody Travis and Carrie have talked to believe that Travis will beat this.  That’s just who he is. Travis beats the odds.  But this is just a reminder that Travis is still sick.  Very…very sick.  And his chances are not good.  So it will take a miracle.  A God sized miracle to save him.  And the Roberts are counting on that miracle.  They believe they are living out that miracle.

But remember…all the while…they are bombarded with…reminders.

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July 17, 2013

Expectations

By concretefaithblog

Expectations. They can break your heart.

It spread to my lungs.

Can you imagine getting that call? Can you imagine being the wife to someone with an incurable disease and hearing those words?

Can you imagine being Carrie?

Well. Now you can.

Is your heart in your throat? Mine was too.

And then she heard that laugh….Oh that laugh…

“heh, heh, heh……Just kidding…they still haven’t called.”

Oh to be married to Travis. Never a dull moment.

But then the text message did come in.

A text message???

Well. Dr. Hamrick is at the beach this week and still reached out personally to Travis with the results. That’s just the kind of doctor he is. That’s just the kind of guy Travis is.

I would imagine, as Travis went to retrieve the message, his heart must have been thumping as Carrie’s was when he made that ridiculous joke.

And the message…

“Hey Travis – am at the beach this week but got a voicemail from the radiologist – CT scan shows an excellent response. Lymph nodes persist but the cancer is responding everywhere. I will log in tonight and email the printed report to you. This is great news.”

Travis forwarded me the message to get on the blog…

Really? That’s it?

Ok….ok…ok…I am excited. I am happy. The news should be bad and it is not. Go to The Cholangiocarcinoma Foundation’s website and read the message boards. This disease does not give an “excellent response”…

…but then again…we kind of knew it was responding…the CA19-9 tells us that every two weeks.

But I am excited. I am.

But….

Really God?

It took me a few minutes. Ok. It took me 45 minutes. And I finally got real.

“God. I’m thankful for what You provided. I know it is of You. But….I’m kind of disappointed.”

Don’t worry. He didn’t fall off His throne. Nope…not because I simply told Him what He already knew I was feeling. It’s ok to be honest. It shows you trust Him. At least…that’s what I tell myself.

“God?!? Really!?!? That’s it!?!”

Sigh

“I guess I just trust You know what You are doing. Your ways are not mine.”

And then the phone rang.

Carrie.

That wasn’t all the details. That wasn’t everything. God wasn’t done.

How about a sixty five percent REDUCTION in the lymph nodes?

How about going from eight tumors in the liver….to THREE.

How about the largest tumor in his liver reducing by 50%.

How about miracle, after miracle, after miracle, after miracle!?!?

Expectations. When they are met. It’s a beautiful thing.

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July 10, 2013

Cliffhangers

By concretefaithblog

Cliffhangers.  Like you…I have mixed feelings about cliffhangers.  Sure.  They are exciting. They get your blood pumping.  They can even overwhelm you.  But they are also, well…annoying.

When your favorite show ends the season with your jaw on the floor going “but…” “wait…”  “how?”  “how did he?!?!”  “How is she!?!?”  “I CAN’T WAIT UNTIL SEPTEMBER?!?!?!?!?”

Like I said…they can be annoying.

This experience is feeling more and more like a movie.  No surprise there.  Travis’ life does seem to play out like a movie.  How many of you feel like the waiting for the CA19-9 every two weeks is kind of like a…cliffhanger?

And so…another two weeks has passed.  And the results are in.  Like a season premiere.  Will it be what we hoped for?  Will it be a let down?

Let’s let you decide….

  • 05/15 – 161,000
  • 05/29 – 135,000
  • 06/12 – 57,000
  • 06/26 – 19,500

Today?

8,800.

Another 55% decrease.  A 95% decrease overall.

A cliffhanger well worth the wait.

Some of you have said the last video was also a…cliffhanger.

“When’s the next segment?”  “Why haven’t you guys updated the blog!?!?”  “FINISH THE SERIES!!!!”

We actually didn’t mean to leave you with a cliffhanger.  We had every intention of posting within a day or two.

But we have been busy.

I don’t mean “normal life” busy.  All of us have that.  I mean

we-got-something-in-the-works-busy.

Something exciting.  A silver lining in this gloomy cloud of Travis’ cholangio.  Something BIG.  Bigger than any of us.

But.  We aren’t ready to reveal it yet.  So while we are ready to reveal the follow up to the last video. Regarding our plans…our work…our BIG thing…we just have to leave you with…

a cliffhanger.

Interview 5 of 6

In segment five of this six part series Travis discusses the chemo game. We encourage you to watch the first four clips if you have not already – Not Your Typical Cancer Patient, The Discovery, A Death Sentence, and Finding Love…and God.

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June 17, 2013

Not Your Typical Cancer Patient

By concretefaithblog

Travis Roberts.  Not your typical cancer patient.

That’s my friend.  Funny, witty, brilliant, sarcastic, annoying at times Travis.  He’s not your typical cancer patient.

Travis’ third treatment of chemotherapy was this past Thursday, June 13.  And, since he meets with Dr. Hamrick every other week, he also got to see him.  His rockstar doctor.

What I wouldn’t have given to see the face of this man.  This brilliant medical doctor who, at the age of 42, has already worked his way up to the head of oncology at Kaiser Permanente.  A man who has seen a lot.  A man who has basically seen…it all.

But he’s never seen Travis.  Nor anyone like Travis.

I would have LOVED to see the look on this man’s face as he sat across the desk from Carrie and Travis…in awe.

Can you imagine the conversation…

Travis…I…uhhhh…I got your CA19-9 results back.  Ummmm…yeah.  There down to 57,000.  Yeah.  Uhhhhh…I don’t know.  You went from 161,000 to 57,000 in two treatments.  I can’t explain it. Ummm.  Yeah.  Wow. 

Ok.  So that’s not how the conversation went.  But I bet it is close to what he was thinking.

But doctors still have to maintain professionalism. So instead of looking dumbfounded.  Instead of doing the happy dance.  Instead of losing his composure.  He simply said “You are an anomaly and I cannot explain it.” 

An “anomaly”.  An “outlier”.  Man’s words to describe the unexplainable.

Man’s words to describe God’s miracles.

So Travis took his amazing news.  His incredible news.  His miraculous news.  And went to his third, five hour session of chemotherapy.  And from there…he went to his friend’s rehearsal dinner.  And then Friday he went to a golf outing honoring his friend.  And Friday night he went to a BBQ for the soon to be newlyweds.  And Saturday he went to the wedding…and the reception…and the after party.

1001444_10201527943427536_5408269_n

I am exhausted just typing this…and I didn’t have chemo!

And Travis???

Well.  Come Sunday.  He crashed.  Hard.  He spent the day in bed. Exhausted.  He has some pain in his scalp and a little swelling in the arm he got his chemo in this week.  But it took all that to bring out the symptoms.  Why?

Because he’s just not your typical cancer patient.

Over the next week or so we will be releasing an interview that Travis’ friend Steve Barnes did last week.  It is a six part series and each video is between 4 and 8 minutes.  This will give out of town friends a chance to see Travis and how well he is doing.  It gave Travis a chance to tell his story…in his own words.

To tell…how he is not your typical cancer patient.

Disclaimer…as you can imagine, being interviewed on the spot (without rehearsal) can be nerve racking.  Travis did a great job but, under the pressure, mixed up a few facts.  In this clip, he states that anything beyond Stage 2 Cholangiocarcinoma is considered incurable.  It’s not quite that “clear cut” since it depends on if it is intrahepatic or extrahepatic.  To read more about the survival rates by staging, visit The American Cancer Society.

Check back in the next day or two for part two….

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June 1, 2013

The Walking Miracle

By concretefaithblog

Travis. The Walking Miracle.

That’s what he is. I am not just saying that because he is one of my closest friends. Because I want to believe it. Because I want it to be true.

I say it because that is what it is.

Truth.

Travis is…a walking miracle.

First…let’s talk lymph nodes. Those pesky little things that swell up in your neck when you get sick. Those things the doctor pushes around on, in your neck, when you go in for a check up. But your lymph nodes are not just in your neck. They run through your body as a part of the lymph system.

Check out this figure. The green is your lymph system and the “bubbles” are the lymph nodes. What do you notice? They are all connected. Remember that. It will come in handy later.

Lymph-Nodes1

Now let’s take a look at where the cancer has hit in Travis’ lymph nodes.

Lymph-Nodes1

Everywhere you see red…Travis has cancer in his lymph nodes. More or less.

Wow.

In his words…”the PET scan lights up like a Christmas tree!”

So where is the miracle in that?

It is simply unheard of. It is a miracle that the cancer, as it has moved through his body through those connected lymph nodes, has not “jump shipped” onto another organ. The diaphragm basically divides the chest cavity from the abdomen. The cancer has passed by the large intestine, small intestine, gallbladder, pancreas, stomach, through the diaphragm, past the lungs…and has not touched a single one of them.

Having trouble understanding how HUGE this is? Don’t quite understand how intertwined the lymph system is with these organs? Not convinced of this miracle? Try this picture of just the abdominal cavity. Again…the green line is the lymph system and the green bubbles are the lymph nodes…

Lymph Nodes with Organs

And that is just the abdominal cavity. The cancer moved through the lymph nodes. These lymph nodes that encircle and intertwine with the organs, and never touched them.

A walking miracle.

But. It’s still hard to hear the doctor say “yep. you light up like a Christmas tree.” When those words come out of the doc’s mouth… When you see how they look at you… Your mind plays tricks on you. The enemy plays tricks on you. And despite the miracle…you get worried.

Travis got a second opinion on Wednesday. Well. I guess technically it is a fourth opinion. Or is it fifth? Who knows…always good to cover your bases. A friend got him the appointment and just wanted him to meet with this doctor who has saved other’s lives. And so he did. And the doctor looked at his images and looked at Travis. He looked at him like he was a walking miracle.

How can this guy have it from his groin to his clavicle and it not be in his organs?

So while it is encouraging to hear. To hear you are a walking miracle. “The look” is still so scary. The look that says…

Wow…how are you standing before me seemingly healthy when you have this much cancer?

And so the look can be discouraging despite the encouraging words. Despite knowing you are a walking miracle.

CA19-9. It’s the cancer marker that tells the doctor how Travis is responding to the chemotherapy. The first time Travis had this test done was on the day of his liver biopsy – April 16. Normal is below 35. Travis’ was 91,000.

NINETY ONE THOUSAND.

Travis and Carrie thought it was a typo. But it was not a typo. 91,000. That was his starting point.

Yesterday, Travis had his second treatment of chemotherapy and, prior to starting, he and Carrie met with Dr. Hamrick. They asked for the results of the CA19-9 test taken on May 15, the day before his first treatment of chemotherapy. The test taken just four weeks and two days after the initial test. Just 30 days later. Just one month.

161,000.

Carrie screamed. Literally. Dr. Hamrick had to yell “Whoa! Calm down! It’s ok! We knew this was an aggressive cancer. Nothing has changed! We knew this!”

Yes. We did. We heard. We were told.

But 161,000???? In a month?

If you go to the message boards on cholangiocarcinoma.com you will find people worried about 300. 400. Even 1000. But 161,000???

A walking miracle.

But again. You can tell yourself you are a walking miracle. You can convince yourself you are the “outlier”. The “exception”. The “miracle”. But your mind plays tricks on you. Your mind says otherwise.

And so. As Travis sat through his treatment yesterday. His five hour treatment. With poison running into his veins to kill this thing that seems…invincible. One thing kept running through his mind. Over. And over. And over.

161,000 161,000 161,000

This morning Travis awoke. And thanked God for another day. Another day of being symptom free. Another day of life. Another day of being a miracle. But he had something more to say. Something more to ask.

Speak to me God. Let me know You are hearing our prayers. Let me know You are there.

And he opened his Bible.

As I have mentioned before, Travis is new to Bible study. He is still figuring out if Galatians is in the Old Testament or New. If there is a difference between Corinthians and Chronicles (uhhh. big difference. huge). Suffice it to say…he doesn’t yet know his Bible. But he is trying and following the advice of his father…sticking to Matthew, Mark, Luke and John.

Lately, he has been reading John. And today, not-so-coincidentally, he happened to be on chapter 11. And for the first time, on his own, he came across John 11:4…

When Jesus heard this, he said, “This sickness will not end in death. No, it is for God’s glory. God’s Son will receive glory because of it.”

God spoke to Travis. He met him where he was and gave him a gentle reminder. But He wasn’t done.

Shortly after this Travis was talking to Carrie. Explaining to her that he was “all for the miracle”. He was hanging in there and trying his best to simply have faith. But just once. Just one time. He would like something tangible. He would like some good medical news. Just once. Something encouraging. After what seemed like punch after punch after punch to the gut. Just good news for once.

An hour later the email came.

Dr. Hamrick.

Great news. Got your CA19-9 back from Wednesday’s test. Down to 135,000.

In just two weeks. After a single treatment. A 16% decrease.

THIS MEANS THE CANCER IS RESPONDING TO THE CHEMOTHERAPY!

Something they weren’t sure would happen. Something that doesn’t happen for a lot of people. Something that could have been another punch in the gut.

But God spoke again. He spoke to Travis. This time the reminder wasn’t so gentle. It was tangible.

God spoke to His walking miracle.

13 Comments   |  tags: , , , , , , , | posted in Concrete Faith Must Reads

May 21, 2013

From the Rat Race to the Waiting Game

By Carrie Roberts
This is a weird feeling. I have nothing to do today but clean my house. How does that happen? We have spent the last month in a cancer diagnosis rat race, running to doctor appointments, scans, blood work, and the biopsy; then traveling for more scans, more blood work, more doctor appointments… Now Trav is at work, and I have nothing to do but clean my house. Well, and catch up on bills and laundry and phone calls that have been set aside. But, we don’t have any doctor appointments today.
Trav and I were saying this morning that since we don’t have chemo this week it feels like we are doing nothing. That feels both strange and not good. It gives me too much time to read the message board on Cholangiocarcinoma.org and feel slightly envious of the people who caught the disease before it spread out of the liver. Isn’t that crazy to be envious of someone else who has CC? I am actually happy for them, but I’m being honest in saying that my happiness is combined with a bit of envy. Why couldn’t Trav have gotten the kidney stones one year ago when the CT scan may have only shown a tumor in the liver and no enlarged nodes? Why couldn’t we have caught this disease before it left the liver? The whys only waste time, but I can’t keep them from sneaking into my head from time to time. Then I read about other people who were diagnosed because they were becoming jaundice and starting to itch. Their bilirubin numbers were already out of control at their diagnosis, so they have to wear drains and have stints put into their bile ducts. Wow, aren’t we blessed! Trav is symptom-free. Outside of the effects from chemo (so far tiredness and a headache), Travis is feeling good. That is so amazing, and we are beyond grateful.
Sunday night a friend came into town, Jason Mashburn (Mash). We are so happy that he is here. We have all been friends since middle/high school when Mash was Trav’s main partner in crime. Trav broke his anti cancer diet Sunday night so that we could go to the hole in the wall Mexican restaurant that Trav and Mash went to when they were skipping school back in the Wheeler High School days. We even sat at their booth.  Well, at dinner Mash asked about the blog. He was wondering if it would be updated as much now that we don’t have new things going on every day. That is a good question. Probably not. Simply because we don’t have as much to report now that we are in the waiting game.
The first date that we are waiting for is a blood test that Trav will get in about four weeks. This blood test will look at his tumor marker which is called CA19-9. It is the blood marker that points the doctors to his diagnosis of Cholangiocarcinoma. Trav’s CA19-9 level is insane. It is 91,000. Normal levels are between 0-37! You may be wondering if that was a typo that you just read. That is what we asked the doctors. Are you sure it is 91,000? Dr Hamrick assures us that it is nothing to worry about. Everyone has his own starting point, and it doesn’t necessarily mean anything. The only thing that matters is that it goes down. In approximately four weeks, Trav will have his blood drawn, and we will be on our knees praying that his CA19-9 level is lower than 91,000.
The second date that we are waiting for will be in about two months:  the CT scan that tells us if the chemo is helping. When I set the date for the CT scan, I will let everyone know. Like I have said before, two months isn’t really long enough to have amazing results, so stable or slight shrinkage of the cancer will be a win.
So… even if you go days without hearing from us, please don’t stop praying. The waiting days seem harder than the busy days. You all know how that is. It is nice to be busy and productive. Please pray that the meds are hard at work and killing each and every cancer cell. Pray that those lymph nodes respond to the chemo. Pray for our strength and our patience. Pray for our three little ones. Trey and Pippi know that daddy is sick, but of course they don’t understand cancer. Please keep joining us in prayer while we are waiting!!!

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