May 24, 2018 -"If the Rocks Cry Out in Silence, So Will I"

Healing since leaving the hospital has improved exponentially compared to the time in the hospital. I thoroughly enjoyed my time in the hospital following this little procedure, but looking back on it now, I wish I were able to leave a couple days sooner. However, that wasn't in the cards.

It's neat how my initial perception of how something is going to go ends with an entirely different result. I guess that happens to all of us, every day, multiple times perhaps. We notice these differences of expected outcome versus reality when hopes are high. Perhaps not so much for smaller, insignificant events in life.

Tonight, as Melanie and I were listening to praise and worship music before bed, the song "So Will I" by Hillsong United came on. This song, for me, has been my anthem over the past two months. When praying for strength and faith during this two month roller coaster ride, this song tethered me to the only eternal thing that mattered, my response to the question of faith, "so will I."

One of the lines that caught my ear early on and one that I pointed out to a lot of close friends was "if the rocks cry out in silence, so will I." Considering the outcome of being cured of my tumor, I knew there was a chance that my voice would be impacted and even permanently absent, but I never invested much thought into that being an actual outcome. Well, here we are. I am without a nerve that controls my left vocal cord and am barely able to whisper on a good day. Melanie looked at me tonight and said, "your favorite line in your song is rather prophetic, isn't it?"

God works in ways that we may never know in this life. But I know that God works all things according to His will. During this season of my life, I pray that like the rocks, I may cry out in silence, praising and worshiping my Father in Heaven. All the while, I have hopes of a long-term solution in place restoring my voice.

May 20, 2018

Well we FINALLY left the hospital. Room P726 at MD Anderson just didn’t want to let Mark go. Unfortunately his stay was lengthened due to another complication diagnosed with Friday’s late night CT scan. This showed evidence of a pulmonary embolism or a blood clot to the lungs. This explains his spike in heart rate and discomfort that started the day prior. I’m so happy they found this.  It is small, not life threatening. It is treated with blood thinners, currently an injectable one called Lovenox. Mark will need some type of blood thinner for the next 3-6 months. Likely we will change to a pill version after Mark has that injection to help his vocal cord.

About that injection, it was supposed to have been done this past Friday while we were in the hospital. However there was a mix up in the scheduling of this and besides, Mark wouldn’t have felt well enough that day anyhow. So it is rescheduled for this coming Friday, the day before we return to come home.

I will give out a quick shout out to MD Anderson Cancer Center. From day one, we have been entirely impressed with the care given. Efficient, compassionate, thorough, I could go on and on with the compliments. I’ve worked in a lot of hospitals over the years, but this one is something special.

As for now Mark and I are chilling in our cute little condo located near the Med Center, not far from where we once lived actually. It’s like de-ja-vu all over again—living in Houston, in a small space, no kids. Ahh, memories! 😊  Speaking of kids—they are doing great! We Face Timed them tonight and they all gave us updates of their very fun weekend. I am thankful to my awesome mother-in-law holding down the fort—she is doing a great job!! Also to my parents, my sister, my kids’ friends, neighbors, several friends from church, all those bringing meals to our house, those driving my kids around to events. It truly takes a village. We thank God for our village. And we thank God for getting us to this point in this crazy journey. Our prayer now is that the rest of this week goes smoothly so that we can return home as planned.

Here's my handsome husband peacing out MD Anderson for now. Doesn't he look great?

May 18, 2018

Just a quick update....Unfortunately we are still in the hospital. Mark’s heart rate and blood pressure went a little crazy over night so our planned discharge was delayed. He’s on a medicine for that now which is kind of helping. However his sudden change in status prompted a cascade of further tests. So far everything is looking good. He still has a CT scan scheduled for midnight. If this comes back normal, I’m going to devise a clever way to sneak him out of here. 😆

May 16, 2018

God is Good. I sit here in my hospital bed, talking with Melanie, still in shock that 1.) I had a tumor and 2.) that tumor is now gone. It all still seems a bit surreal. In under two months, I discover the tumor and then have it carved out of my chest. What a journey in faith, health, relationships, priorities, etc. Now, this isn't near over yet. I sit here with other issues that are bring monitored, but I know I'll overcome. Hopefully discharged Friday where Melanie and I will settle into a cozy condo herein the Med Center in Houston.

Post op periods have their typical "ups" and "downs".
My "ups" are:

1. I passed my swallow study so I was allowed to start eating yesterday afternoon.
2. I'm up walking around. I've even challenged a few old men to a race!
3. Several tubes that were placed during surgery have been removed over the past 24 hours.

A few downs over the past 48 hours are:

1. I have pericarditis, which is inflammation of the lining of the heart, common for this kind of procedure. This mimics a heart attack on EKG, so Melanie was freaking out a little Monday night.
2. My intercostal block wore off early, so Tuesday night I was up and in pain all night long. More pain meds come with more side effects
3. My left vocal cord is permanently paralyzed as my left vagus nerve has been removed as it was too involved in the tumor to save. So, I sound like I've been a smoker for the past 50 years. I've never smoked, and I'm not even near 50 years old yet. 

I am meeting with a head and neck surgeon on Friday who will do an injection into my left vocal cord trying to make my voice more normal. This will be a temporary fix. I hope to be discharged from the hospital later that day.

So the next 24-36 hours will hopefully bring about better pain control with less side effects, losing my last chest tube, and getting a real shower.  Although I admit, I'll miss the sponge baths!

Please keep praying!

May 14, 2018 “Ned is Dead, y’all!”

Howdy from Texas!! I am happy to report that Mark is now tumor-less and doing well! God is Good!

We arrived at MD Anderson early this morning. We prayed together with the doctors and nurses before they wheeled Mark away. Then the waiting began...again. Luckily we have Ben & Lisa Harris with us here in Houston. They have been so helpful on this journey, and today they provided not only solid ministering to the both of us, but also live music (including beat box), comic relief, and some walks down memory lane. What a blessing they both are to us and our family! The waiting game was much easier with them by my side.

Dr. Rice came out about 12:30 to report that the surgery went well.  Talk about relief! The greatest news is that the tumor was completely removed. “Ned” is now taking up residence in the Pathology Research Department here at MD Anderson. I’m sure he’ll be a popular guy there. Adios Ned!
More good news—there was no infiltration of the vessels which means the aortic specialist did not need to be called in. In addition, even though the tumor was highly vascularized, there was not enough blood loss to require a transfusion.

However, the not-so-good news is that the nerve that innervates the left vocal cord had to be removed. It was just too intertwined with the tumor and not salvageable unless some of the tumor were to be left behind. We knew this was a possibility. Mark will likely be somewhat raspy for the time being. We will worry about the implications of this later. We are confident that some awesome speech therapists will be coming our way. And a surgical correction later on down the line is also an option. For now we will enjoy his “Chris Stapleton-esque” style. Mark was already singing along with some Zac Brown Band songs and I think he sounds pretty darn good.

Thanks to everyone for your love and prayers today. You helped Mark and his docs get through a tough surgery, and you helped this nervous wife get through the wait. 🤠

May 13, 2018

As I type this up, I am about 7 hours away from the next chapter of my life; life without Ned. I had to apologize for stealing this Mother's Day from my wife as we were focused on getting packed and to Houston. Throughout this entire journey, nearly 2 months now since learning of Ned the Paraganglioma, Melanie has been my tangible source of strength and optimism. Sure, it is our faith that sustains the both of us, but witnessing and receiving that eternal Love through my marriage and from my best friend has literally been the remedy from a mind wandering to dark and depressing places. My wife has been an anchor for me that has inspired intrepid faith and a deepening love like nothing I could have ever imagined and would struggle capturing in word. As a response to some terrible news, only the best has resulted. To my wife, Melanie, I owe everything.

Thank you, everyone, for your continued prayers and support. As I sit here typing my final post for a little while, tears of anticipation and joy are streaming down my face. I am overwhelmed by my faith community, many of whom I don't even know personally and may never have a chance to thank. You are all thought of in prayers of gratitude daily.

Tomorrow, as I count backwards from 10 as the anesthesia begins to work, my wife's smiling face and loving voice will be occupying my mind's eye. Once I awake from this procedure, my wife's beautiful smiling face and loving voice will welcome me back to life. I can't wait. God is good.

May 12, 2018

I feel as if I am wearing this phrase out... thank you. Thank you to everyone who made my Friday night memorable. Thank you for love shown in the simplest of ways through a smile and hug. Thank you for prayers of all varieties; healing, health, etc. Thank you for help with resources in providing for travel and lodging during many trips to Houston, TX. Thank you for being a part of our lives in whatever capacity; new or old, briefly or the long-haul, daily or once a long time ago...

The love Melanie and I witnessed tonight is a capstone to my life. I was able to witness this and catch up with so many people first-hand. There's no way I could thank every single person tonight. Please know that just seeing that room full of people was overwhelming. Even knowing that there are scores more of people praying for us tonight and supporting us in a variety of ways who were not able to attend is beyond overwhelming. My list of prayers of thanksgiving will last me two lifetimes.

God is good.

THE UN-WATCHED VIDEO
     (Compiled by Greg Burian)

May 10, 2018 - "Your Will Be Done"

Personally, not much excitement has gone on today. However, my best friend had a few words penned together that he shared on a blog to which he contributes. I thought I'd link that here as it's a great read of who is really in control. Great thoughts, Ben...

PX90 - Building Courageous Men

May 9, 2018

I am currently in Houston, TX, typing away here wanting to share all I’ve learned today. I’ll start brief with the bullets and will then elaborate:

• No Genetic Component confirmed!
• Surgery set for Monday morning
• God is Good

As I was sitting in my CT surgeon’s patient room, I took a call from my genetic counselor. He quickly confirmed that there is no genetic component to this rare occurrence. As I burst into tears, I realized that I’ve been crying an awful lot lately. All my tears are stemming from good news received, so I can only praise God with and for each tear.

I’m returning to Houston soon with the hopes of a rapid weight-loss plan. If I had to guess, Ned weighs around 2 lbs. This won’t be the easiest 2lbs lost, nor the most fun, but one that I am looking forward to unlike any other 2 lbs in my life. Of every experience in life that has formed me to be who I am, including my marriage and the birth of each of my children, this one experience forcing me to consider my mortality and my faith has been the single greatest influencer in my faith development. Being a cradle-Catholic and one who’s practiced my faith since I can remember, it’s difficult to admit that though I could walk-the-walk and talk-the-talk, I never knew of my faith muscles until I was truly tested. Well, I’m in the midst of my test and hope that I’m making my eternal Father proud. 

Regardless of any number of outcomes that yet could be, God is good. May I never forget the love shown to me and always be the first to respond to anyone with the same love I’ve received. Thank you, all, for your continued prayers.

May 4, 2018 - "Ned, the Tumor"

I battled putting this out at all, but I think it's neat. So, possibly against better judgement, this the "Glamour Shot" of Ned, my Paraganglioma. Notice my stomach and liver in the bottom left and right. Center-middle is my healthy heart. Then, above my heart is a solid mass that doesn't belong there. That is Ned. He's about to be evicted. Another neat thing in this pic is to take note of my trachea. Ned has been pushing my trachea, among other organs and vessels, to the right for some time. I'm looking forward to having a normal-looking scan again in the near future.

May 4, 2018

MIBG scan completed last week shows no further metastases concluding the same finding from the CT scans done in Houston!

Thank God this is just a single (large) tumor to deal with. Prayers will be focused on:

• No genetic component
• All the hands and hearts of those helping me to heal during and following surgery on 5/14
• Thanksgiving for an incredibly loving, supportive and faith-filled community

God is good.

May 2, 2018

I received a call yesterday from MD Anderson that my surgery is scheduled for Monday, May 14.

So, this is now a busy time of planning things out in terms of all the travel I'll have to knock out before then as well as all the home logistics that need to be handled. I enjoy being busy, but this is a new level. I just need to set myself little reminders to stop, slow down and pray.

Once I know anything more, I'll post it up here.