Cancer Fatigue

"Why does ____ not get it?" - Rebekah

This is a question she (and I) have had a lot lately. 

"Cured or remission are things I will never hear." - Alan

People hear that he is off treatment or that the tumors have shrunk and automatically think he is cured or that the "crisis of cancer" is over. 

CANCER will never be over for us. We will always wonder when the next active fight begins again. We will always treasure EVERY HOLIDAY, BIRTHDAY, ANNIVERSARY because it could be the last good one for all we know.

People are there when diagnosis first happens. They come in droves, bringing meals, offers of help. Family makes time together a true priority.

But over the course of a LONG journey, that is far from over, that changes. People that were there in the beginning go back to their old lives. Family puts less emphasis on time together, assuming there is plenty of time left.

There may not be. We are not promised tomorrow - Cancer or Not, COVID or not.

The journey we are on is LONG - Lynch Syndrome cannot be healed. We know that not everyone can walk this journey with us. We know that some are only with us for a part of the journey. 

To those of you that "get it" to quote Rebekah, thank you for living life with us.

- Melanie, Alan, Rebekah, Audrey, and Tumors (Marvin and Mooney)

Never, Lord

 Never, Lord, let me take your miracle for granted. 

Two years ago, medical science said that I wouldn’t live past the next five years. But God got all up in the mix. 

MD Anderson is now happy enough with my last scan that I’m stopping treatment. Not cured, not even in remission. Those typical labels don’t stick to me. 

My “tumors” still show up on the scan. They’re smaller now and shrinking. My doc’s best guess is that the “tumors” are really dead scar tissue. 

Good. We’ll go with that. It’s a win!

It didn’t have to go down like this. Odds were against it. So yes, I’m calling God’s work for what it is - an unmitigated miracle. 

From here, we scan me every three months. If something grows, we hit it with the same treatment. It should shrink back again. 

While God worked on my cancer, he also worked on my heart. He’s given me peace. And patience. And focus. And abundant life. And joy. And an even greater thirst for his Word. And an active prayer life. And a painful awareness of where I sin. And a keen gratitude for the grace offered by Christ’s death on the cross and resurrection. And a heart willing to work hard for his Kingdom. 

Our family is forever changed. 

Massive thank you to all our prayer warriors. My wife and two girls are top-of-the-heap among them. Another buddy faithfully texted me a simple message every doggone day, “PrayN4U.”

What you won’t see in this bell-ringing video still chokes me up. It’s the huge crowd of nurses who insisted on taking a break to watch. 

My nurse that day was new to me, but I overheard him telling two more nurses about it. They said, “That guy? Oh yeah, we’re there.” God did something with my nurses at MD Anderson that I don’t even understand. 

What else will God do?

Holy Father, never let me take it for granted. You worked a miracle here. Let me live in light of it. 

#bthocancer

#straightupmiracle

#foreverchanged

- Alan

Double Unicorn Family

Sometimes God makes things clear using odd circumstances, weird chains of events, random people, random thoughts. Sometimes God calls us to be champions for ourselves, our loved ones or people we barely know.

I shared again last week that my word for 2020 was gratitude. Well in the last three months God has provided lots of opportunities for me to show if I was going to stick with gratitude or allow circumstances to get the better of my attitude. I am so grateful for Him revealing definitive answers today after three LONG months of questions.

Please take into account with what I am about to share that the last five months has been in the middle of our chaotic world and a crazy, insane time at the County Treasurer’s Office. 

March 7th right before the world in Montgomery County and in Texas turned upside down, I ran the biggest race of my life. I ran a half marathon in less than 2:40, and had lost over 20 lbs in the past year. For the next several weeks, I kept running about 10 miles a week. Around the end of April, I started struggling with fatigue. As a person who has always thrived on 5-6 hours of sleep at night and still ran circles around others, I was unable to get enough sleep. I would sleep 8-9 hours and still feel exhausted. 

On May 2nd, I passed out at the dinner table, and Mr. Unicorn, himself, made me go to the ER. They quickly determined it was simply a vasovagal response to taking a big gulp of milk with dinner that pressed on the vagal nerve, causing the fainting. But they did want me to follow up with my GP.

For the next couple of days, I continued to be fatigued and experiencing chest tightness which led to following up with my GP which lead to following up with a cardiologist. The cardiologist really blew me off, but still did some baseline tests, all of which were good. 

So I kept pressing forward. I mean we were in the middle of crazy times, maybe it was just wearing on me. I mean, online school, new finance system, government shut down and mandates, who wouldn’t be tired.

When Mr. Unicorn went in for his sinus surgery, I was blessed with conversation and coffee with a dear friend who works at the hospital. After telling her all of how I was feeling, my heart rate monitor results on my Apple Watch, my exhaustion, lack of ability to even walk 2 miles with the girls, she insisted I get a second opinion and helped get me in the next day with a different cardiologist.

He listened completely and didn’t brush me off. He agreed with my lengthy family history of Atrial Fibrillation, that an event monitor was wise but also highly encouraged getting my hormone levels checked as well. So a week later I had been to the gynecologist to get levels checked, and received a wireless event monitor for 4 weeks. While wearing the annoying monitor, it was discovered that my Vitamin D was in normal range but probably not in the optimal zone and that my thyroid was suddenly low. 

As we started meds for those, I asked if we could check for anemia. I explained to my nurse practitioner, Ginger, maybe I was anemic too, since Rebekah was, but how Rebekah’s was found through her stored iron not her hemoglobin. The triple whammy of Low Thyroid, Vit D and Iron would definitely explain the now month and a half long fatigue. She agreed to test for it when we checked my thyroid in 6 weeks.

Rolling forward to late July, cardio diagnosed me with irregular PACs (Premature atrial contractions) and I was waiting on bloodwork results on the thyroid and anemia. 

Ginger was thrilled with my thyroid levels on the meds, but was baffled by my ferritin results. I was not anemic, as we had both predicted. Quite the opposite. My stored iron was more than double the high side of the normal range. She asked another colleague about it because she had never seen it. The only thing they could find was that I might have hemochromatosis. I had blood drawn again and started looking for a hematologist. The second set of bloodwork confirmed the higher levels were not a fluke, and my transferrin saturation % was actually at 84%, way over the normal.

Having now done a hemochromatosis DNA Panel, today I received confirmation that all of my issues - the PACs, low thyroid, the fatigue, are all explainable by a diagnosis of hemochromatosis. 

Gratitude - here’s where that gratitude comes in. The Lord was so good. He gave me a completely minor, non event really, in the fainting that got me more tuned in with my body. He gave me knowledge through Rebekah’s concussion about stored iron being a sign of anemia. And while I am not anemic, because of me being my own champion and having the knowledge He gave me, we found the root of my symptoms for the last three months.

AND may have found the root of my family’s history of AFib. Discovering this genetic mutation in the end could make a major medical impact on my life and my girls lives, by potential prevention of AFib. All because my body presented with symptoms early and I continued to try and figure out what is wrong!!

Thank you, thank you Lord for making me, Mrs. Unicorn to match my Mr. Unicorn! I love how God has continued to show Himself to us in the field of medicine and genetics. More to come on our now Double Unicorn Journey!!!

- Melanie

My Word for 2020

Remains unchanged, despite COVID-19, despite online school, despite stay-at-home orders, despite being unable to be with some family.

On January 25th, I posted about my word for the year. Sarah Rhea, little did you know what you were asking of us at that meeting! I told you all that my word was GRATEFUL. That remains unchanged today.

Yes, many are hurting in our world. They have lost loved ones, jobs, homes - they've lost HOPE. 

Yes, many are frightened - of COVID, of government mandates, of losing their job, or of not finding another job. They've lost HOPE.

GRATEFUL goes unchanged because my HOPE does not reside in this world! My HOPE is in Christ alone. Without Him, I wouldn't last a day in this world without giving up HOPE and that's under "normal" circumstances. So yes, I claim GRATEFUL even after a 5 month Spring Break! 

2020 has generally stunk. I'm not in denial about that. But there is still so much to be grateful for. 

The precious time without nuclear families, game nights, walks, movie marathons - time most of us don't get between homework, work, activities and events. 

The conversations centered around the political and public health climates. Rarely do we engage in this deep of conversations on these topics with our teens. Hearing their thoughts, their fears, their take on how the adults in the world are handling matters. 

What is the word you chose for 2020? Is it still your word? And what can you focus on to be grateful so you don't lose your hope?

- Mel 

You didn’t know - and that’s ok. Here’s what you need to know.

You know I’ve got cancer. But you didn’t know my skinny odds - or my fight, or my side effects, or my fears, or my wide-awake nights, or my wild guesses about my wife’s and girls’ future without me.

That’s ok.

You’ve see how I fight. It’s not in my own strength which has failed me over-and-over again.

You’ve seen me smile. Laugh. Play. Work. Love my family. I hope you’ve seen me love others.

So then, you’ve seen my God. He gave me the peace to do what you’ve seen.

Good. That’s the only thing I want you to really see. God made me that way, despite a diagnosis as dreadful as mine.

You’ve seen the new heart he gave me. He sharpened his scalpel and took out my stone heart, then replaced it with a living heart.

For that surgery, God paid a dear price. He sent his son Christ to live among us on Earth and feel the same pain and brokenness we face. That’s what sin did to the perfect world God created. God then had to turn his back on his precious son who hung dying on a cross, although he’d done no wrong. God watched his son die.

But death couldn’t hold Christ. Three days later, Christ walked the Earth again. Alive!

Alive like the new heart God gave me because I’ve put my faith only in Christ’s sacrifice to pay for my sins. Alive like the new heart anyone can have - in spite of anything they’ve done. Alive like the new heart that even a longtime Christ-follower can have by drawing closer to God.

No, faith in Christ doesn’t make things easy. But relating to God gives joy and peace.

So before you really need God (and I promise you will), get to know him. Read his word - what he’s told us about himself and who he made us to be. Pray - talk with him, sometimes just sit in silence and listen to him. But most importantly, do what God tells you in his word and through the Holy Spirit for whom he sacrificed his son to graft into your new heart. Do it - no questions asked.

Then you’ll know you can trust God. He’s faithful no matter what.

God has got your back. When you don’t see how obeying him could possibly work out and you’re thinking that you’ve got a better plan, obey God anyhow. You’ll see him come through.

Then you’ll know that King David was right. Even on your darkest days, God’s “goodness and unfailing love will pursue” you (yes, hunt you down) “all the days of [your] life.”

Please know my God. Only then can you know peace.

That’s the only thing I really want you to know.

- Alan

Grateful

Recently I was at a luncheon where the President asked us to introduce ourselves and to share our word for 2020. Well, now I must admit, I hadn't picked one. So being the fourth person in the line and having just gotten the GREAT scan results 4 days prior, I quickly decided on Joy.

In the four days since then, one word keeps coming to mind. And while it may be a cousin of Joy, it's not Joy. So Sarah, I change my answer.

GRATEFUL

I choose to be grateful this year. And I am grateful I have so much to be grateful for.

We haven't shared a statistic with many people. In fact, very few, until recently! We never told the girls, because they never asked. And it was a scary stat. One that kept me up at night. One that made me re-evaluate so much. One that changed my life.

In April 2018 when Alan was diagnosed with metastatic recurrent colon cancer, we were told that the treatment he is on (Thank you God!) was the only real option. That while we could do other treatments they were not the best and did not give him the chances this one did.

That statistic was that without this treatment, with the conventional treatments, the ones our insurance approved of, the ones that we didn't have to fight for over 3 months to get, ONLY gave Alan a 7% chance of survival over the next 5 years. At the time we were told that, Rebekah was in 7th grade and Audrey in 4th.

Translation, the images that kept me up at night were that of sitting alone watching Rebekah graduate high school and then again at Audrey's graduation. The nightmares that came night after night were of there being no father-daughter dance at the girls' weddings. Nightmares of learning to live without him. Of the hole so deep in me that he would leave.

Not to mention the conversations we had to have. Conversations no 40 year old husband ever desires to have with his wife. Do we really have enough life insurance for him? Where will it leave the girls and I if the worst occurs? What life would look like as we walk this journey? Conversations I wouldn't wish on anyone. Conversations that hurt so deep.

But God stepped in. God paved the way and the treatment option became a reality. July 6, 2018 is a day I will never forget. It was a day I had a glimmer of hope for the first time in months. Now this treatment was his only option in the doctors' minds because with it his 5 year survival rate shot up to 55% from 7%. Amazing difference, right?

Well just getting on this treatment protocol alone was enough to keep me grateful for years. It gave him a chance, a REAL fighting chance. And now here we sit just under 2 years later, and 1 tumor is essentially gone and the other two are on the run! Praying that when the 5 year hits, we will be hearing the words No Evidence of Disease!

Every day for the last four days I have caught myself saying how grateful I am. Randomly looking at Alan, my breath caught in my throat, grateful.

So my word for 2020 is GRATEFUL!

4 Month Scan Results

Here we are. Another January, approaching the 30th. Cancer sucks the life out of everything. We celebrated the removal of Bo; we celebrated the end of chemo. We waited through every check that first year with baited breathe, but everything was good. Then April 4, 2018 came and cancer sucked the life out of the small room we were in on the 7th floor of the main building of MD Anderson in the Med Center.

The last 21 months have had major downs, some ups. Yesterday, Alan had his first CT Scan at MDA in The Woodlands. It’s so nice to have the full center up and running here. So today was date day down at MDA to meet in one of those small rooms with Dr. Dude (Dr. Morris) and get the news.

For the first time, we both slept peacefully. The drive down was uneventful. The waiting room was packed. We both went into the appointment feeling strong, feeling good about where he is. The minute we went into that small little room, all my nerves came flooding to the forefront.

Jocelyn, Dr. Dude’s PA came in, apologizing for the wait and explaining that most of the GI docs are headed to a conference next week. So if we were okay with it, she was going to go over the wonderful results with us.

Today was a MAJOR UP! The tears keep welling up with joy. Jocelyn made it clear that all the tumors shrank. As Alan and Jocelyn continued to discuss the side effects he is having, I poured over paper with the scan results. Only two tumors had measurements listed, which was confusing. When there was a moment, I asked where the measurements of K was. After pouring over the scans from October and yesterday, the conclusion was reached that while K is still there, it is small enough that the radiologist didn’t even pick up on it.

HUGE NEWS! Marvin (left paracolic gutter tumor) shrank 28.9%. K (hemipelvis tumor) is so tiny that it is “insignificant” now! Mooney (lower abdomen tumor) shrank by 9.7%.

From the highest point Marvin and Mooney have shrank by 85% and 60% respectively! But the most impressive to me is the next set of stats. K was non-existent at the onset of recurrence and is practically the same now. Marvin is 40% smaller than when discovered April 2018, while Mooney is 30% smaller!

Friends, treatment is not just working! It’s not suppose to do this. Treatment is exceeding all expectations. Treatment is healing my husband!

We’ve had a dear friend who has texted us literally every single day for this recurrence (over 21 months)! Every Saturday he tells us that we are “Another week closer to cancer free.” Being truthful, these texts have hurt some weeks - on the weeks were it seemed hopeless.

Today when we shared the news, he texted, “I truly believe one day you will hear ‘The cancer is gone!’”

I finally believe this!

It’s easy now to put on a brave face for the girls, for Alan, for everyone who asks. But in the quiet between God and I, the struggles have continued... continued to doubt... continued to fear. We still live scan to scan, writing our plans in pencil. With every good scan, which we have had consistently for a year now, my struggle has lessened, my fears decreased. My faith and trust has been restored a little more. Today, God showed me that He is using this treatment to save my husband. Alan is being a unicorn not only in his cancer and all the other things over the last three years, but also in his response to treatment!

In majority of cases similar to Alan’s the tumors just stall out. BUT God! Only God! Only God could do this! Only God could make it continue to shrink and EVEN start to disappear!!

Thank you Lord! Thank you for this news! Thank you for restoring my faith! Thank you for healing my unicorn!