"Scanxiety"

That's a neat marriage of two words. It's a word that flies in the face of what I try to practice concerning things I cannot control. Nonetheless, even the word stirs feelings that lead to fear, helplessness, hopelessness, etc. Even as my mind races down these "what if scenarios," my anchor in faith reminds me to not worry.

Can any of you by worrying add a single moment to your life-span?

January 18, 1990. I was your typical 4th grade boy. Ruining pants requiring my mom to patch them up after sliding for soccer balls on the field or diving across the school floor to see how far I could slide. I didn't own a stain-free shirt. My hair was rarely done in any presentable fashion because what 4th grade boy in rural Missouri cares about any of that? Not this one. 

In 1987, my babcia moved to live with us from Gliwice, Poland. She couldn't speak any English, but boy could she cook some good Polish foods. She helped my parents take care of my siblings and me every day. As she grew older, she started to slow down a bit and had some health-related issues stemming from a hard life in WWII Poland and thereafter. 

In January of 1990, my babcia was in the hospital for a while with heart issues. As a kid, I never thought much about it but remember hoping she'd recover and return home quickly, as she had done before. Sure enough, my babcia was released from the hospital on January 18th and came home. I remember her sitting at our kitchen table after a long day and running through the bedtime routine. Each kid would tell her "Dobranoc. Ja kocham Cię," while giving her a hug before we ran upstairs to cozy into a warm bed. To this point, this night was not unlike any other.

I recall very vividly the dream I had this night. I dream a lot. Some silly, nonsensical. Some life-like. Some terrifying. However, this dream was one I wish I could have more frequently. This dream was an encounter of the eternal with an endless feeling of love and hope. I recall seeing nothing but whispy white all around me, as if I were in a cloud. In front of me, slowly being revealed in a suspenseful manner as these bright white clouds lifted, I saw a large throne, two feet and sandals. The very typical view of what one would expect God's feet and lower legs to look like. As I stood there a short distance away from God, my babcia emerged from behind the throne, and walked towards me with a comforting smile that put me at ease. Though I knew my babcia couldn't speak English, she stood in front of me and said, "Don't worry."

After those words were spoken, I woke up in my bed. On the walls of my room, I noticed red and blue flashing lights coming from outside. I heard a commotion downstairs. So, out of curiosity, I scurried downstairs to see what was happening. On our living room couch, I met my great grandma (my dad's grandma) sitting on the couch waiting to give me a hug. I asked her what she was doing there, confused as she's never there that late. She informed me that my babcia had to go back to the hospital and that everything was going to be OK. Since I had school the next day, she assured me everything was OK and to go back to bed. So, off I went, back to bed upstairs not realizing the weight of the dream I just experienced moments before.

When I woke up for school that cold Friday morning, my mom greeted me with tears in her eyes. My babcia passed away in her sleep that night. She told me I could stay at home that day, or go to school if I wanted to. I chose to go to school. When I got to school, my principal and teacher greeted us with warmth and compassion. I didn't really know what to say or think, nor how to act. So, I behaved like any normal day. Fridays were all school Mass day. The first thing we did was head over to Mass. It was at this point, kneeling during the Eucharistic Prayer, that my dream flooded my eyelids, recalled from the night prior. I broke down. I cried in front of everyone. My babcia was no longer with us.

Fast forward to now, many years later. The memories of that day still play in the reels of my mind like a recent movie. I want to remain accurate and honest in my recollections so as to not fill things in with made-up memories. I think often of the impact that dream had on my formation into adulthood, in how I handled any number of challenges, hardships, or tough decisions. Even still, when I recall everything I just typed up, a hard lump forms in my throat. My emotions are still trying to process a supernatural gift that has guided my response to opportunities of growth throughout my life. Because of this brief but impactful encounter, I strive to maintain the weight of all situations on the scale of eternity. I know my scope of control only applies to my response and emotions to events. Of course I know we all have responsibilities and actions that must be carried out in order to maintain status quo, but I can only control what I can control. My feelings of anxiety, fear, hopelessness are all within my control. I know of an eternal good that exists regardless of any moment in history perceived to be bad. Goodness wins, even when despair seems insurmountable. It can all be boiled down to a much simpler approach in life; don't worry.

God is good, all the time.

Event: Stories Worth Sharing

Quick announcement for anyone catching these updates!

This Sunday at Holy Infant Catholic Church, Melanie and I will be sharing our story of the past 18 months of our lives, our faith, our marriage, etc. Holy Infant has a recurring adult faith formation meeting titled, "Stories Worth Sharing." Well, we were asked to share our story beginning with my discovery of a mass in my chest and the changes that brought into our lives touching every relationship and outlook. After sharing our story, I believe there may be a Q & A. I'm not sure if any of this sounds exciting or appealing to anyone else, but I'm excited to share our story.

If anyone reading this has a free Sunday evening and can make it, we'd love to see you!

Stories Worth Sharing

When:     October 13, 2019 @ 6:30 pm

Where:    Holy Infant Catholic School

                248 New Ballwin Road

                Ballwin, MO 63021

 

                Upper Cafeteria

441 Days Later

Time moves quickly, doesn't it? It's been 441 days since my uninvited tumor was removed forever changing my life. Clarity only received in the refiner's fire was gifted to me, and for that gift, I am eternally grateful. I also cough differently, which sounds like a sneeze and gains me a lot of "bless you's." I'll take those however I can get them.

I've been blessed to meet a lot of people in the journey of 14,478 days. Many of whom I know and who know me, but many more who only know of who I am or what I did in a previous life. Many I don't know at all, but hope to as I am blessed with more days. Nonetheless, of all the numbers of people I've spoken to over the past 441 days, the caring kindness in humanity has been the most noted quality I've observed. People from around the area who had only heard of my journey are asking me to follow up and share more about my journey. I meet people often who ask me how things are today, a year later, and where things are going. I always share as time allows because there seems to be a genuine desire to know that dark storms have left and better days are ahead. 

Just 11 days ago, I met a couple of nice ladies while shopping at Marshall's who knew who I was. In talking and catching up, I learned about these women, their lives and how we all go through our own issues from which we learn and gain perspective. One lady's husband, who's first name is Ken, is going through his own health crisis right now. Of course, I asked questions as I want to know his story. As a result, his name is a new name included in my list of nightly prayers. Knowing that he and his wife included me in their prayer life compels me to return that favor. Some say that it's not much, but I would argue that prayer is one of the greatest gifts we can give one another. 

I have been asked what's next for me many times. How's my health? Will I be returning to singing and leading worship? Though I have a tendency to answer the unknown quicker than I should, I only know what I can control, which isn't much. What I can't control, I do my best to leave to God. Among the many prayers following my surgery 441 days ago, a group of friends circled up together and, with the intercessory prayers of Fr. Henri Caffarel, prayed for a miracle in healing with my voice. I am ashamed to admit that though I was greatly appreciative of their intentions, my skepticism held me back from vigorous participation. However, a miracle occurred without my approval or direct involvement.

396 days ago, on June 28 of 2018, I received what was supposed to be a temporary, 90 day fix to my inability to speak. An injection was made into my left vocal cord which medialized it, allowing contact to be made and my voice to return. The short-term nature of this procedure was to have worn off by the end of August and I was then scheduled for a more permanent surgery medializing my left vocal cord. 90 days came and went and my voice was still as strong as ever. So, the surgery was rescheduled 70 days out into November. Those 70 days came and went with no changes. Today, 396 days later, my speaking voice seems to be as strong as it was before I lost my ability to speak following the surgery. My laryngologist says that it could be considered a miracle that I'm speaking so well still today. This seemingly permanent side-effect is experienced in less than 1% of people receiving the procedure. My ability to speak is better than 99% of his patients, and according to my doctor, still better than a good portion of the healthy population. I left his office a couple of weeks ago with a bit of a bounce in my step, thankful for this unexpected miracle.

The past 441 days has been more up than down. There are still issues resulting from the surgery, but nothing that will slow me down too much. I have hope in better days ahead. I have a faith family that keeps me tethered. I have the wife that God knew I'd need in my life who is my perfect match. I have kids who are persistently teaching me all about a father's patience. I have friends who remind me to love life and share it to the best of my current abilities with gratitude and a smile. 

To anyone who still may be reading my thoughts on this site, please continue to pray for me. If and when we meet up shopping at Dierberg's or Target, please take a moment and introduce yourself. Catch me up on your life and give me the opportunity to share in prayers for you and your family just like you have done for me.

More to come in the future. My next follow up at MD Anderson is scheduled for the end of September. I will provide updates along the way!

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.