Tag Archives: Lymph node

Expectations

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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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.


The Dream Team

Tuesday was a good day

Tuesday I met with the dream team.  This is the team that I am hoping God put together to save my life.  At 1:30, I had my first meeting with my interventional radiologist.  He is very young (36) with a young daughter.  For the record young doctors, when you have a rare disease, make me feel better than old doctors.  They just get it.  They are edgy, risky, and understand what it means to not want to leave your children behind.   They are not hardened by failures.  They don’t just phone it in and look at you as a stat.  They see a father.  They understand when you tell them that you would rather die by being overly aggressive in 18 months. By pressing and fighting to get the tumors small enough to just maybe be lucky enough to have a liver resection(instead of dying at 24 months without trying).  They understand that six months is irrelevant in the grand scheme of things.  When you look at what is going on in the world of Cholangiocarcinoma the standard of care for my stage is chemo first then some sort of radiation.  I do not know if I have even heard of doing them at the same time in any of the CC chat rooms.  This Dr. wants me to start chemo Thursday and get set up for y-90 radiation at the same time.  This from what I can tell is NOT the standard.  This is risky.. This will make me very sick…  We are going to meet with Dr Hamrick tomorrow before I start my chemo.  We are going to get his opinion on doing both chemo and radiation at once.  Then we will decide. 

Next we met with a liver transplant/resection doctor.  He is one of a 3 person surgical team in this department at Piedmont.  These guys come highly recommended and they are incredible.  At one time we had 6 people in the room wanting to meet me.  We thought that we might be having a party.  For one thing it is amazing that this surgeon took his time to meet me.  I am not a candidate for surgery at all right now and no other hospital thought there would be any point in having me meet with a surgeon.  This guy truly wants me to get to the point that I can have a surgery.  That means I have to have the cancer out of my lymph nodes.  At that point, one of the guys on the 3 man team will take on my liver.  If they think there is the slightest chance that they can  help me, they will do surgery.  This guy got it!  He got that I want to go out guns blazing.  If I am going to go out… I am going to go out fighting.  His words were, “you are a 38 year old otherwise healthy father of 3. We are going to throw the kitchen sink at you”.  Thank you God!  That is what we have been looking for. 

So even though it is scary to go to the doctors and see the looks on the faces, we did not get that from Piedmont Hospital.  They saw me for who I am and not as a stat.  They were straight up about my challenges, but they told me not to give up hope.   That is what Carrie and I needed to hear. 

The prayer request now is that my cancer will react positively to the chemo that I start tomorrow.  I will be going every other Thursday, and the treatment will last about 5 hours.  I will be learning how my body deals with the chemo as far as side effects.  Then I will be scanned in 2 months to see how the cancer has reacted.  Two months is not long enough to make great progress, so it will be considered progress if the cancer has not grown or spread.  BUT, lets pray for shrinkage and especially that it kills those cells in my lymph nodes.

I want to thank everyone for your love, support and prayers.  We are blown away by the kindness.  I keep asking Carrie, “Where have I been?  I never knew that people were this good”.   So thank you for being there for me.  God has given me the strength that I need to make it through each day, and I thank Him for that every morning and every night.