Big MDA Week

Busy week of testing and treatment! Scans were Monday, scopes were Tuesday, scan results today, and treatment is Friday. 

In good news, yesterday his endoscopy and colonoscopy were 100% polyp free! First time ever!

Scan News is no-news at best.

Scan showed some growth in the tumor from the last one. A new tumor popped up by it too. The two tumors may actually be one u-shaped tumor, but it’s hard to see a 3D object on 2D scan slices. 

Growth from the last scan is murky. It depends on how you read the scan slices. 

(A CT scan takes multiple cross section images of your body as it moves down from head to toe. Slices.)

Hope is that this growth is just the tumors reacting to treatment by swelling. Last time the treatment worked, the tumors swelled too. Just not by as much as they might have now. 1 month of this scan period was before treatment began. 

We plan to stay the course with the same treatment and scan in 2 months. This treatment is the only real good option. It needs to work. 

Doc will be discussing this with some colleagues for their input and advice. 

Bottom line, please keep praying hard. We’re trying to be positive, but are pretty scared.

Habit Turned Flaw

After reading my post from last night, Rebekah informed me she had written a response and to my shock, she was not hurt by the post or anything. But told me I wasn't quite open enough. So she wanted me to post the below. Proud of her vulnerability. - Melanie

~~~~~~~~~~~~~~~~~~~

I don’t write blog posts often. Throughout this journey I think I have only done one or two. I am my mother’s daughter through, so I write. A lot. I feel like maybe if I write what’s on my heart today, I can release these emotions and help someone else in the process. 

First, cancer sucks. Watching someone go through treatment, and yet they are always positive so you feel like you can’t tell them you are scared sucks. Being a kid sucks already, but my peers are typically not emotionally mature enough to support me. And frankly most adults are the same way. So I easily find myself pushed to the side. That sucks. Being told “whatever happens is God’s will” sucks because at this rate I don’t know if I like His will or not. Being told “that’s something you should pray about” sucks just as bad. 

Second, here is what I have learned is the most effective way to cope as a person affected by cancer. Writing is key. It’s okay if you have to burn the papers sometimes until you are ready for others to see. Recognize when you are having a bad day and give yourself a break. Do something you enjoy. It’s okay if the bad days are in a row. That’s normal. It’s also normal to be in denial and not feel anything yet. Hair dye can work miracles. Dying your hair in support of the cancers awareness can allow you to talk about cancer in a non emotional way which can help normalize it as your reality. It’s okay if you are upset at the patient. You are allowed to still disagree and handle it in a respectful way like you would anyone else. 

And finally, here is my advice of what to say and do rather than the previously mentioned words that hurt me. I made it in steps so that it is easier to follow. 

1. Ask if they are doing okay in general and if they say yes then ask specifically about cancer if they seem open to it. 

2. If they choose not to share, tell them that you are here for them (bonus points if you say you will be checking up on them and then actually follow through with it)

3. If they choose to share first recognize the emotion and experience by saying something like “I can’t imagine how much that hurts," but never compare your personal cancer experience unless the same person in relation to you had cancer at roughly the same age.

4. Then ask how you can support them. More than likely they will not have an answer. Let them know that you want to support them and to reach out if they can think of anything

That’s all I can think of that I want to say, but I wanted to also share a poem I wrote about cancer. I wrote it back in December. I call it Habit Turned Flaw.

Habit Turned Flaw

I am not who my friends need.

I am not who my boyfriend needs.

I am not who my sister needs.

I am not who my mom needs

I am not who my dad needs.

I have this bad habit.

It started when I was twelve.

Dad had just been diagnosed with cancer.

I know that I am not the doctors 

So I know couldn’t help medically 

But I could research.

I find out many things about cancer treatments

More specifically Lynch syndrome.

But one footnote I pay close attention to:

A positive mindset can help a patient’s results.

This was my golden ticket.

I did everything I was asked to.

I never asked if I could do anything with my friends.

I made the highest grades possible.

I denied myself the luxury of a childhood

So that he might be proud and smile for a minute 

And maybe, just maybe, forget about cancer.

Perfectionism has become my fatal flaw.

Trapped in a cage I created.

My project started small- 

Get the grades so that Dad doesn’t worry-

But it spread like the plague inside of me.

An impossible invisible burden lays on my shoulders

Everyone’s happiness depends on me.

Depends on my perfection.

I am not who my friends need.

I am not who my boyfriend needs.

I am not who my sister needs.

I am not who my mom needs

I am not who my dad needs

- Rebekah

Why

I wrote the below post on March 23rd. Lately has been hard for a myriad of reasons, but last night was just a particularly rough night for me with cancer emotions. We are approaching the first set of scans. All of our anxiety is super high. I've been encouraged to post what I've held back. I haven't felt like I could be my authentic self this Battle. I know it's because of other things going on in my life. But today someone told me to not stop doing what helps my heart - writing - which has spurred me to share this post. Going to keep being my authentic me. And to Heck with whoever can't handle it!

- Melanie

~~~~~~~~~~~~~~~~~

From March 23, 2022

My heart is hurting. I watch my family all grapple with this. My girls are both scared and hurting. They don't understand why. I don't understand it. I'm sitting here, finally alone to process. Over a month later, I'm finally crying, screaming, ranting at God. For the last month, I have been in management mode. Taking care of everyone else's needs. Taking care of all their emotions, unable to even begin to process or understand my own. 

Fear, doubt, hurt, distrust - all of that is present in my daughters and in me when I stop long enough to feel. 

My role in this journey is not that of the patient. Alan has his role to fight with everything to get well, to trust in the doctor's advice, to have faith that God isn't done with him here. The patient has the hard job and yet, I've discovered sometimes the "easier" one. They are the one able to do things, to take active steps in the fight. Meaning they are the ones that go on some form of treatment and actually fight the damn cancer.  The rest of us are bystanders. 

As a child of a cancer patient, there is a lot of hopelessness, fear, doubt, hurt and now on the third battle distrust. The girls struggle with feeling hopeless because they are bystanders unable to do anything that causes the cancer to go away. They fear the death of their dad - wondering what will he miss, when will he not be able to attend things because of treatment (been there) or ultimately when will they not have him here at all. Rebekah does too much research on her own and understands the realities of cancer too much. Audrey has such fear that she just wants to ignore it and act like it isn't our reality. Both of them do these things because of their hurt from this journey and their doubting it will ever get better. We've entered a stage where they struggle to trust that anything will work or that God will heal Alan. Three battles, two recurrences when "it shouldn't recur," "where it is unlikely," and "the odds of that happening are very low," is taking a very significant toll on trusting and faith that it will "all be okay," as everyone tries to tell us. 

As a wife and mother on this journey, I am the caretaker of everyone. I am the cheerleader for Alan, reassuring him that it will all work, keeping him in the best frame of mind possible. A positive attitude and lack of stress help treatment to work! So I try to foster that. Focusing on us eating right, keeping up with the appointments, questions with new results, all of it. He and I both have the MDA App so that every time they communicate, we both see it because you need two sets of eyes, ears, and brains to look at things, hear the doctor's comments fully and to process all the possible questions. 

Unlike Alan, I never feel I am taking active steps. I have felt for five years now that I am sitting back watching this all unfold with no way to fix it. And I am a fixer... I much more relate to our girls' emotions in this journey, except I'm the wife and mom. I don't like letting them see I am just as scared as they are. And I hate letting him see it. I am constantly trying to help all three of them deal with the effects of cancer, that I push aside my own emotions. And then every so often I break down.

Today is the first of those break downs in Battle 3. It's been needed for 3 weeks but due to other circumstances, I was unable to do so. Then last week, the goal was to get some time alone, looking out over God's creation to process and breakdown but that didn't happen either. So this morning, here I am staying home from church, alone in my house, my safe place, crying out to my Lord, asking the question I may never have answered. WHY? Why Alan in the first place? Why won't it just go away? Why does it keep recurring? Why? Why? Why?

My God is big enough for me to yell at. He's big enough for me to tell Him I think it's unfair. He's strong enough, mighty enough, and trustworthy enough. I can walk this journey NEVER knowing why but know that I can trust the author and creator of the world! I can trust that some good will come from this. Some good will come from all the crappy circumstances in my life because He is working them all together for good. I trust Jesus Christ when men and women around fail. I trust Him more than anything or anyone else. 

So I will break down and cry out to my Lord, knowing He is the God of comfort, healing and true love. Lord, heal my husband, heal our girls' hearts, and heal my heart. Give us all the strength for this Battle.

God Leads Us to Peace

 “He lets me rest in green meadows;

He leads me beside peaceful streams.”

-Psalms 23:2 NLT

Two simple sentences. King David needed nothing more to capture one of God’s most beautiful qualities. He leads us into peace. God takes our hand and leads us to “rest in green meadows” and “beside peaceful streams.”

We don’t pick peace – at least, not on our own and not for the long haul.

Some folks struggle to take complete control of their circumstances, while others just feel victimized. But in the end, they both wind up tied in knots. The control freak churns inside over what’s outside his control; the victim stews in his own juices. Nobody settles into a lasting peace.

I sure don’t. I’m a hardcore control freak. Also, don’t forget my expertise at avoiding the facts. But eventually the facts catch up with me and, when it comes to having peace, all bets are off. I face my limits and churn. That’s when God steps in.

What King David packed into two quick breathes, Scripture elaborates into a rock opera.

The prophet Isaiah found “perfect peace” in God:

You will keep in perfect peace

All who trust in you,

All whose thoughts are fixed on you!

-Isaiah 26:3 NLT

Shortly before Jesus Christ marched up Calvary to the cross, he told his disciples that he was leaving them with peace:

“I am leaving you with a gift – peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.”

-John 14:27 NLT

You see, Christ knew he could seal the deal. He’d already promised to send the Holy Spirit to live inside everyone who trusts in His name. Because of the cross, God’s power inhabits God’s people. On the inside.

Check out John 14:16-17 and Ephesians 1:13. You’ll find all the goods there.

Just like Christ promised, the Holy Spirit leads God’s people to peace:

So letting your sinful nature control your mind leads to death. But letting the Spirit control your mind leads to life and peace.

Romans 8:6 NLT 

The Apostle Paul cut straight to it:

            Don’t worry about anything; instead pray about everything. Tell God what you need, and thank             Him for all He has done. Then you will experience God’s peace, which exceeds anything you                can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

            Philippians 4:6-8 NLT

Let’s be real honest.

Sometimes, we don’t look for the Spirit. Fear has worked such a number on us that we don’t go looking for the Spirit or the peace he promises. We’re vulnerable.

King David knew, deep down in his core, that the Spirit comes after us – even when we’re not looking for him. No place is beyond the Spirit. David shouted:

I can never escape from your Spirit!

I can never get away from your presence!

 

If I go up to heaven, you are there;

If I go down to the grave, you are there.

If I ride the wings of the morning,

If I dwell by the farthest oceans,

Even there your hand will guide me,

And your strength will support me.

 

Psalms 139:7-10 NLT

Sitting in your fear, never forget that. The Spirit is right there with you, if you’ve been washed in Christ’s blood. He’ll “guide” and “support” you. His peace will “guard” your heart and your mind. He will lead you to “life and peace.” The Lord of Heaven’s Armies has promised to keep you “in perfect peace.”

Christ flat-out said we ain’t gonna get peace anyplace else. It’s a gift the world “cannot give.”

Go ahead. Ask God for the peace He promised. Then be still.

Watching for God’s Promises to Come,

- Alan

All That I Need

 “The Lord is my shepherd;

I have all that I need.”

 

-Psalms 23:1 NLT

 

I already have “all that I need”? Like in the palm of my hand?There are moments when I feel like I can’t keep much of anything from slipping like sand between my fingers. All that I need? No way.

 

Way.

 

Jesus Christ picked his moments – then dropped the truth. He visited Jerusalem for a huge festival, expecting a packed house. God’s word commanded all Jewish men to bring a sacrifice to the festival. Most everybody came.

 

There, Christ pounced:

 

On the last day, the climax of the festival, Jesus stood and shouted to the crowds, “Anyone who is thirsty may come to me! Anyone who believes in me may come and drink! For the Scriptures declare, ‘Rivers of living water will flow from his heart.’”

 

-John 7:37-38 NLT

 

You see, Christ had a thing about drinking his water. It, alone, could satisfy completely. 

 

Not long before the festival, Christ had told the ostracized woman at the well about the water he offered. He said:

 

Jesus replied, “Anyone who drinks this water will soon become thirsty again. But those who drink the water I give will never be thirsty again. It becomes a fresh bubbling spring within them, giving them eternal life.”

 

-John 4:14 NLT (emphasis added)

 

No more thirst. No more need. Satisfied. Overflowing.

 

Christ quenches our deepest needs – to repair the brokenness of our relationship with a good and holy God, to rescue our immortal souls from eternal punishment in Hell, to assure us of an eternity in Heaven.

 

Nobody can measure up to Christ. He is God’s only son, but was born and lived in flesh. All God, all man, all at once. Yes he endured hardships and was tempted just like us, but he never disobeyed God and sinned. For his “crimes,” people crucified him. He died. But death had no claim over Christ’s perfect sinless soul. Three days later, Christ rose from the grave and gave death the royal beat down once-and-for-all.

 

Speaking through the apostle Paul, God laid it out in Romans:

 

For everyone has sinned; we all fall short of God’s glorious standard. Yet God, in his grace freely makes us right in his sight. He did this through Christ Jesus when he freed us from the penalty for our sins.

 

-Romans 3:23-24 NLT

 

For the wages of sin is death, but the free gift of God is eternal life through Christ Jesus our Lord.

 

-Romans 6:23

 

If you openly declare that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. For it is by believing in your heart that you are made right with God, and it is by openly declaring your faith that you are saved.

 

-Romans 10:9-10 NLT

 

It’s simple; drink Christ’s water. Admit you’ve sinned and can’t do anything to escape your eternal punishment. Put allyour faith in Christ – that he took your punishment for you, for all time. Turn your heart toward God, resolve to follow Christ.

 

Paul always found Christ to be enough. Through constant travel. Shipwrecked. Rotting in prison. Stoned and left for dead.

 

And yet, Paul made no bones about it. Christ quenched his every need. Rotting in a Roman prison, Paul let us in on his secret to living in extreme adversity:

 

I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do all things through Christ, who gives me strength.

 

-Philippians 4:8-9

 

Christ satisfied Paul’s every need, in every situation. Good and bad. 

 

Like Paul, Christ has never let me down in a pinch. Cancer can wreck people. Sure, I struggle with what I’m walking through, but I also have a peace that I can’t explain. I bet you can’t either.

 

Trick is, we’ve got to drink His pure water. Positive thinking won’t do it. Medicine alone can’t do it. Nor can thrill-seeking. Or anything else I can scrape together. Onlyseeking Christ and His will for our lives can give lasting peace.

 

Christ will do the same for you.

 

Will you let him? Run to him – nowhere else.

 

Fully Satisfied,

Alan

I know you are. So am I.

 

Facing a mountain? Everybody is.

 

I’m a cancer patient, just starting my third fight in five years. My situation is so unique that MD Anderson has no proven protocol . Sure we have hope, but nothing hard – as if science and odds were ever hard.

 

You, too, have a mountain. Maybe you’re mad about it. I get it, it’s not fair. Maybe you’re not talking about it. Not looking at it. Not even admitting it’s there, but it is. 

 

That’s the human condition.

 

Run to Psalms 23. On it, hang so many of God’s promises!

 

King David, inspired by the Lord of Heaven’s Armies, wrote:

 

The Lord is my shepherd;

I have all that I need.

He lets me rest in green meadows;

He leads me beside peaceful streams.

He renews my strength.

He guides me along right paths, bringing honor to his name.

Even when I walk through the darkest valley,

I will not be afraid for you a close beside me.

Your rod and your staff protect and comfort me.

You prepare a feast for me in the presence of my enemies.

You honor me by anointing my head with oil,

My cup overflows with blessings.

Surely your goodness and unfailing love will pursue me

All the days of my life,

And I will live in the house of the Lord forver.

 

-Psalms 23

 

Psalms 23 Video

 

Let’s digest that bite-by-bite, verse-by-verse. Ride with me.

 

Forward,

Alan

When words fail

 "When words fail" keeps coming to my mind over and over again. All day yesterday, which was hard on its own and then all day today. When words fail, the tears speak. When words fail, laughter heals. When words fail, my heart sings out to my Lord. When words fail, the silence can both comfort and suffocate. When words fail, God hears what I can't say. 

Today was a bittersweet day. MDA Date Days have become so rare, I had forgotten how much fun we have and how much he makes everyone around us laugh and smile.  MD Anderson is truly a place where angels work, but it is a place filled with somber faces that are praying for their miracle. Then Alan walks in. With his big ol' grin and his jokes, and before you know it the people around us are all smiling too. I love the time with my kind, joyous husband. 

Before I go on, please join me in praying for Judy. She has been a patient of MDA since 2015 and recently found a new mass on her pancreas. They are from the Louisiana border around the gulf and are staying in their RV nearby. I enjoyed getting to speak with Judy and her husband while Alan got some more lab work done. So many of us are waging our different battles against the same evil, we love to be able to lift up another family.

Alright so here is the news of the day! Three weeks from CT Results to today, and we have confirmation. Mooney is growing because the cancer is definitely back. Pathology of Mooney showed that his mucinous adenocarcinoma of the colon is back in this metastatic tumor that just refuses to go away. 

So to the plan. We've had all this time to sit and ponder what's going to happen. We assumed they'd put him back on his previous treatment. And they are. He will go back on nivolumab every two weeks starting this Friday! Dr. Dude ain't playin'! That was the easy part. 

The hard part were the questions that followed. We, being who we are professionally, starting asking about the data. How many people have had this occur? What stats do you have on how they do going back on treatment? Are the side effects increased when doing it again? How long will he do treatment? Etc, etc, etc. 

And the answers were all pretty much, "we don't know." There is no data on this. Alan continues to be a super rare unicorn! The doctor said he should have more data for us at his next CT in 3 months. He's trying to coordinate info with a researcher in Dallas doing a study on this. He "thinks" they have about 70 people in the state in the study and of that 15-20% have had a recurrence after the ipilumamab/nivolumab treatment. So, Alan is probably 1 of 10-15 people. We are in winging it territory, people! The unicorn is becoming a Guinea pig once again! The doctor is optimistic Alan will do well on treatment, since he did before!

Dr. Dude, the PA, Alan and I all agreed that he has now proven that his CEA Blood marker means nothing and  his PET Scans mean nothing. Therefore in attempt to find another way of knowing something is going astray, besides just through his CT Scans, they had him do a special set of blood work to look for any other tumor markers. We are interested in what that comes back with.

The super rare unicorn will once again have Mighty Mouse running through his veins starting this Friday. While we wait on God to reveal His healing, we treat the dickens outta it and we hold strong to each other and our faith. We will cling to The Lord knowing His wonderful healing will come!

- Melanie

“Oh, the joys of those who trust the Lord, who have no confidence in the proud or in those who worship idols. O Lord my God, you have performed many wonders for us. Your plans for us are too numerous to list. You have no equal. If I tried to recite all your wonderful deeds, I would never come to the end of them.”

‭‭Psalms‬ ‭40:4-5‬ ‭NLT‬‬