40th Celebration

I realize that I may never know until stepping into eternity how blessed I am. Not many people of whom I know personally can say an army of concerned family, friends and strangers came together in prayer to lift up an individual in need of God’s healing, strength and comfort. Not only was I lifted, but my wife, my kids, and my caretakers. Generosity knew no bounds by many in my life. So many, in fact, that I’ve made new friends because of their unending prayers.

After receiving so much love last year, i was determined to get back to health so that I can celebrate this blessing of life with everyone who took time to help me get back to this place. As a result, it’s party time in thanksgiving for health and time being alive.

Please join me in “casually” celebrating my 40th trip around the planet on Saturday, March 30th, at 7:30 pm. We’ll be at Greer Brewery in Ellisville. No gifts! Just you and a thirst for beer and connecting. I want to spend time celebrating life and thankfulness for a community of friends in faith.

If you are interested, please let us know here:
http://evite.me/z3NhUsAtz8

The 9 Month Checkup

I was scanned on Monday, February 25th, in afternoon and then had to wait for a radiologist to provide his interpretation to my care team. After my scan, I went to adoration at my former home parish in Houston, St. Vincent de Paul. I opened my time there in prayer, praying for His will, yada yada yada. After a while of what I thought was me asking for His favor, I decided just to sit there in silence and hear what I needed to hear. Waves of comfort and trust enveloped me as I stared into the Eucharist, not saying nor thinking anything in particular. That was exactly what I needed. After roughly an hour of silence, I knew I had to resume with my day. 

I have struggled putting thoughts into words for the past several weeks, but now that I'm on the other side of this recent journey, the dust has settled and thoughts are clearer.

My 9 month checkup landed in February of 2019. When it was scheduled back in August, I was mentally occupied with unexpected heart issues as a complication from the surgery in May. To be honest, being concerned with the heart stuff shielded a lot of my thoughts from wandering into the future concerning a 9 month check up. I'm thankful for that as I look back and wonder how I never concerned myself, knowing it's not my nature.

However, now that my 9 month check up has concluded, I'll admit that the weeks leading up to the visit grew in anxiety and stress in ways I've never allowed it to in the past. As time led up to my CT Scan and update, I did the one thing my wife tells me not to do; I read a lot of medical journals concerning paragangliomas, their recurrence rates and the details about recurrence, mortality rates, etc. The skinny truth is that there isn't much out there. So, the small number of studies done over the past 40 years are few and far-between. With the evolution of medicine and understanding of this rare tumor, journals documented even 20 years ago may not be accurate pertaining to medical science today.

Nonetheless, for the rest of my life, there will be a chance of recurrence. I never invested much mental thought into that fact up until now. I will be scanned and checked until I either choose to not care any more or just get old and stop caring. There is a 10-15% chance of recurrence until I am no more. With that percentage of recurrence, it could come back anywhere between my head and adrenal glands. Also with that percentage, it could return benign, or come back cancerous. So, unlike other cancers where remission may be a safe place to land, this one doesn't necessarily have that landing pad.


Tuesday evening following my scan, I received a call from my endocrinologist informing me that my chest CT was all clear. All anxiety subsided immediately. On Thursday of the same week, my doctor told me that my blood work was also all clear removing concern for areas not scanned.

In review of this recent scan, I realized a few things. Mainly, I'm reminded of my advice to everyone I meet that is harder to do than to offer to others; don't worry about what you cannot control. I'm reminded of my journey in faith specifically over the past year. I can see where there have been ebbs and flows of faith; laziness and diligence. I know this is all part of our human nature. I am appreciative for moments of growth and continual reminders for how truly blessed I am to have experienced this past year in the manner I did.

The most profound lesson learned that I have shared with Melanie early on is how unconditionally she has loved me throughout this journey and continues today. In times where I want to let worry and anxiety win, Melanie has always been there to keep me focused on faith. When I feel discouraged about anything, Melanie has always offered encouragement and love. Because of immeasurable blessings from my marriage and relationship with Melanie, I know that whatever the future holds, will be a blessing to me, my family and my faith. There are many more lessons to learn along this journey of life. I'm thankful I don't have to do it alone.

My next scan is set for September. I feel I'll be much more prepared already.

The Best is Yet to Come

I meant to put some sort of "final" update out last week, but my time was not well-managed with the holiday season in swing. Last week during the Thanksgiving downtime, I spent some time in silence just observing. I watched my two youngest children, ages 3 and 7, play and enjoy their time together in ways I don't know I ever did with my siblings. I watched the attention my daughter displayed working on an artful drawing as if she were making the most perfect drawing ever created. I watched my beautiful wife selflessly prepare a Thanksgiving meal with love and desire to nurture her family. I am blessed with so much more meaning and appreciation this Thanksgiving season.

I believe I have arrived "safely" at the end of this year's journey. The pending procedure for my vocal cord is postponed indefinitely. The temporary injection received at the end of June that was supposed to have gone away by the end of August has miraculously remained, giving me the ability to talk and speak like the good old days. My vocal cord surgery was scheduled for early September, but then moved to November. That was then cancelled outright until, if ever, necessary. My heart issues are small and are being figured out causing no concern to anyone wise to how the heart works. So, that's in the past. My tumor, removed successfully with the operation in May, is now an exciting road bump in the rear-view mirror. A new normalcy has returned and dust has settled. God is good.

My words will always fall short in capturing and expressing the gratitude I've felt over the past several months. I'm eternally gracious in prayer for all the experiences 2018 has brought into my life. To be honest, I can't say I'd change much about my life knowing that the lessons learned through this ordeal have shaped and formed me into something better than I was before. So many people have opened up in support of my family, which has been humbling on an entirely new level. I hope to have the opportunity to thank you in person if I haven't yet. There are so many people I may never personally thank, that I just hope to be that grateful, Christ-filled person to everyone. That's the challenge day-in and day-out.

There may be additional posts down the road in terms of praying for something or celebrating another something. Until then, please don't be a stranger. "When there's so much left to do, why spend your time focusing on things you've already done, counting trophies or telling stories about the good old days?"

The best is yet to come.

August 18, 2018

Somehow over the weekend, I found my way back into the hospital. I need to figure out a way to score awful food in an easier fashion. In all seriousness, I've had a fever since early August with pain while breathing and difficulty breathing while laying down. My kids are always sick so I just chalked it up for a while to having one of their colds again. After 10 days of fever, however, I called my primary care physician and started the ball rolling in the adventure to figure out what could be going wrong. After numerous blood tests, an antibiotic for 5 days and a few scans, we don't yet know the cause of the fever, but know with certainty that I have pericarditis, a larger pleural effusion and a pericardial effusion.

Pericarditis is swelling and irritation of the pericardium,
the thin sac-like membrane surrounding your heart.

With the definitive results of the scans and fever still of unknown origin, my PCP decided to admit me to the hospital Friday. Reluctantly, I moseyed in to Mercy's Heart Hospital Friday mid-day. Friday was spent getting stuck repeatedly and then remembering how uncomfortable those hospital beds really are. I met with a couple of doctors who all assured me testing would be done Saturday. So, Friday was pretty chill. No sleep Friday night as the issues for which I was admitted were not yet treated. Saturday arrived in a slow fashion and by 1 PM, I saw a cardiologist and then got an Echo cardiogram, which confirmed what was noticed in the CT scan the day prior. With all that, each physician didn't really know why I was in the hospital, as pericarditis is not typically treated with hospitalization. No one seemed to note or care of the fever on-going for 2 weeks. So, with some nudging, I was discharged Saturday evening no longer on blood thinner and now able to enjoy Ibuprofen for current diagnosis.

Luckily, this week I am headed back to MD Anderson in Houston, TX, for my scheduled 3 month post-op visit. Since my PCP believes this is a complication from my surgery 3 months ago, hopefully the efficient machine at MD Anderson gets things figured out quickly.

With that, my originally scheduled 2 day visit may need to be adjusted, but I have faith in knowing that my team in Houston will turn over every stone in search of an answer. Once I know anything new about this excitement, I'll update all. Until then, I'll take any and all prayers for a Christ-like attitude in times of frustration.

The Healing Continues

God is good!

It has been over 6 weeks since the removal of my tumor. My sternum is feeling pretty good today. My left obliques are slowly improving as well. I'm able to drive once again and my lifting restrictions have been lifted. I started getting massages on my upper back to help with the pain associated with muscle atrophy. I also started physical therapy initially focusing on stretching during the first week and have now begun focusing on using my muscles with those rubber band exercises. Already, I've noticed a lot of my back and neck pains have dissipated. So, there has been a LOT of progress and, though I anxiously looked forward to these days after week 6, it feels like it got here pretty quick. Other than a scar, soon, no one would be able to tell I had any sort of health scare. I am blessed and thankful for so much.

Now, onto the next chapter of this healing process, my voice. As I shared several weeks ago, with the removal of my Left Vagus nerve, my left vocal cord is permanently paralyzed. Much like my increased knowledge of paragangliomas, I feel like my increasing knowledge of how vocal cords work should somehow be used to make a living for myself after this is all done. I'm joking, of course. In all seriousness, every step of the way seems to have a touch of divine intervention. Having prayerfully considered where to get treatment and who was going to be involved, there are stories that I'd love to share with anyone who asks. These small assurances give Melanie and I comfort in feeling that we are definitely in the right place and God seemingly agrees. That story continues with my laryngologist here in St. Louis.

I had my first visit scheduled for 7/19. After dropping off my files and CDs of procedural care in Houston, TX, I asked if there were any cancellations. I got scheduled for this past Thursday, June 27. While at my first meeting, my laryngologist offered a temporary procedure to restore some sort of voice for a short time (6 +/- weeks), so I said, "YES," without hesitation! It wasn't a walk in the park, unless that park is nestled in the suburbs of hell... talk about pain. But, it's done. I had immediate improvement with breathiness reduced to none and vocal cord contact, giving me a firm voice for the first time in over 6 weeks. Modern medicine is unbelievably amazing. Now, I have a few days of healing after that procedure, but hope to have a loud and clear voice within a week.

Another piece of news I learned during my meeting with my new doctor is the likelihood of me being able to sing like I once did is close to nil. There are physiological limitations that I can be trained to reduce its impact, but those same limitations can only be treated so far. My complete vocal cord paralysis fits that shoe. Controlling tonality is done by the thickening or stretching of both vocal cords. Having control of only one, it's unlikely I'll be belting out songs like I once enjoyed doing. Now, this mention here doesn't mean that I won't try, because I sure as heck plan on giving it my best. But, it's out of my hands. It's just another small thing to pray for along this entire journey.

That is all for now. As time moves forward, I'll put up some videos with audio comparing and contrasting progress made over the past several weeks. It's neat to reflect upon. Thank you all for continued prayers. I know that I'm here today and this far in my progress because of them all.

For the greater glory of God!

June 6, 2018

Well, I just recently reached the 3 week mark since surgery. This healing process has been all over the place. There are days where I feel I am way ahead of schedule with healing and that I am moving at the same clip as Superman would. Then, there are days where the bottom falls out and it hurts to breathe and sleep is an impossibility. Thankfully, the latter is few and far-between.

An appointment with a local physician who does nothing but work with vocal cords and larynx-related issues here in St. Louis has been scheduled for mid-July. I am anxiously looking forward to the next step of this excitement because, not being able to yell at my children is giving me more gray hair than I'd like have at the age of 39.

In all seriousness, I am blessed and God is good. Looking back on the past 3 months of life, a lot has happened. The most pivotal portion of my life fits into the past 3 months of my life. That's crazy to think about. The initial fear and concern for health and future followed by an exercise in faith that can never be taken from me paired with an unimaginable, indescribable demonstration of God's love through my community of friends and people I don't even know is beyond humbling. Now, the slow game of healing while working towards the battle's end... it's been a turbulent 3 months. It's easy to take all this for granted today. I can see myself slipping into a relaxed faith life. But, daily reflection tends to correct that tendancy.

So, as the waiting game continues, I'll just continue one day at a time. I'll update events through the end of this journey and look forward to the future. God is good.

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.