Tag Archives: Cholangiocarcinoma Foundation

The Walking Miracle

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.

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From the Rat Race to the Waiting Game

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!!!

Helpless?

Helplessness. It’s a terrible feeling. One of the worst. A feeling of being out of control. A feeling of inadequacy. A feeling of desperation.

Helpless.

When you are fighting for your life against a disease you had never heard of…you feel….

Helpless.

When you are facing the possibility of a future without your spouse and the doctors have little confidence…you feel…

Helpless.

When you see your friends going through unspeakable pain, and you know you can’t take it away…you feel…

Helpless.

When you read post after post of a story of hope and faith intertwined with insurmountable odds and you just want to help but know there is nothing you can do outside of prayer…you feel…

Helpless.

But are you helpless? Are we helpless?

Maybe not.

It may not seem like much but there is something you can do. Everyone of you reading this blog. Every friend. Every family member. Every stranger. Travis and Carrie have a request…and each of you can meet their need.

There is a theory. Cholangiocarcinoma would not be the scary thing it is if it were not so rare. Because it is so rare not much research is done on it. Because it is so rare not much money is put towards it. Because it is so rare the doctors feel…helpless.

So the request is simple. Below is a link. It is to the Cholangiocarcinoma foundation. Specifically…their donation page. All the Roberts ask is that you make a donation or buy a bracelet. Give what you can – what you feel led to give but, please, give something. And let’s make the first steps to finding a cure for this terrible disease and maybe. Some day. We can spare others this terrible feeling of being…

Helpless.

Donate to The Cholangiocarcinoma Foundation