The (Long) Story (3/17 - 3/31)

Saturday, March 17, 2018, 4 days after my 39th birthday, will forever be remembered as a day that a prayer to be drawn closer to Christ in faith was answered. Melanie and I were hosting a party at our house for a friend's city council campaign and welcomed into our house 40 guests from around Wildwood. It was fun meeting new people and talking about life in Wildwood. After the party, a few neighborhood friends stayed longer and we ate pizza and watched Blues hockey. After our guests left and the game had ended, Melanie and I were in cleanup mode. Throughout the night, there was a nagging pain in my upper-left chest. I dismissed it as it wasn't anything more than annoying at that time. However, as we progressed later into the evening, the pain worsened. It was about 10:30 PM, Melanie was walking our dog as I finished a few kitchen chores. The pain in my chest and neck had reached a point that I couldn't do anything else but sit in pain. I waited for Melanie to return from her walk with Shemp on our front porch.

As soon as Melanie returned, she saw me on the front porch and immediately asked what was wrong. I told her that I thought I was having a heart attack and needed to go to the ER. So, we had a friend stay home with our sleeping children while we rushed to St. Luke's ER. Once we arrived, St. Luke's ER staff immediately hooked me up to an EKG machine. Their initial finding showed no sign of a heart attack. At that time, they took me to an ER patient room and we underwent some blood test and spoke with the ER physician. To rule out a pulmonary embolism, a CT scan was performed. We waited in the room for those results to be read by a radiologist. At approximately 2 AM, the ER physician walked into the room, asked to have a seat and told us that there was no sign of a pulmonary embolism, but rather I have a tumor in my chest the size of my closed fist. That was news that no one is ever prepared to receive. I remember laying in the bed with my wife standing next to me, speechless and suddenly thrown into a new world of uncertainty and immediate fear. We went home at about 2:30 AM and slept a few hours as best we could while preparing to maintain normalcy for our sleeping family unaware of any of these developing events.

Sunday, March 18, we woke up and went to Mass at St. Alban Roe as a family to begin our determined journey in faith. Upon arriving to church, there was a quick signup in the vestibule of the church for the Sacrament of Anointing of the Sick to be offered at Mass. Immediately, I saw that as a sign that God was with us offering his Love and comfort on a day full of fear and anxiety. During Mass when asked to stand and receive the Sacrament, my children all asked why I was receiving the Anointing of the Sick. Without preparing any sort of response, all I could do was tear up and hold in the emotions trying to come out. I received the Sacrament and prayed for an increase in faith, hope and comfort.

Sunday afternoon, Melanie and I went to our monthly Teams of Our Lady meeting, which is a small group for married couples coming together with a desire for an increase in holiness in our marriage coupled with a devotion to Mary's intercession. This small group has grown to be a tightly knit group of friends walking in faith together. I had to share with them the news I just received 12 hours prior as I knew that prayer was the only tool I had at this point. Again, there was no easy way to share something we knew nothing about, but we shared what we knew and received a lot of prayer and comfort from the group. Closing our meeting, we prayed for answers, comfort and healing and went home.

Monday, March 19, I was supposed to be sitting in a class in Atlanta, GA, learning about a new system we're implementing in the office. However, my first priority this week was to dive into the world of taking care of this new diagnosis. So, I cancelled my flight and hotel and informed co-workers of my eventful weekend. I immediately scheduled a visit with my primary care seeking a referral to a specialist given the recent findings. Instead of waiting for an appointment, I waited for an opening in the office and got a referral to a cardio thoracic surgeon. I immediately called that office and got an appointment for Wednesday. Now begins 2 days of anxious waiting and praying.

Wednesday, March 21, I went to my cardio thoracic surgeon's office for a consult. Upon arriving, Melanie and I were placed in our exam room and waited anxiously to meet with the doctor. We were afraid that he could come into the office and, after examining the CT scan from the ER, tell us that he is not able to help with a biopsy. Upon meeting him, he walked us into his office and showed us the details of the CT scan. He shared with us our first good piece of news that whatever this was, it was not aggressive. The tumor was not invading nearby organs and structures, but rather encasing them and pushing them out of the way. I felt immediate relief. He confirmed, however, that he would not be the best option for obtaining a biopsy. Instead, he said our best bet would be a referral to an interventional radiologist. He made an immediate call downstairs and set me up for a biopsy to be performed Friday afternoon. The ball was rolling and we felt like we were in good hands.

Friday, March 23, Melanie and I went back to St. John's hospital for the biopsy. Upon meeting the IR physician performing the procedure, I wasn't thrilled with how this biopsy was going to be done, but knew it had to be done. So, as I laid on the CT table with a needle in my back plunging towards this tumor, I prayed passionately for peace and coming answers. It wasn't exactly a walk in the park, but I'm glad I can say I've had that done knowing that I never want to do that again. Once the biopsy was done, we went home and waited for the pathology report. Praying throughout my days have continued through this point and picked up more steam from my extended faith family in the area. We were filled with hope that we'd get a favorable diagnosis within 7 days and then a plan of attack shortly after. All we could do at this point was continue to pray, have hope and place all worries in God's loving embrace as we have no control on anything.

Monday, March 26, I began calling my CT Surgeon's office asking for any update while remaining full of optimism. I was assured the results would be in by Wednesday. I told a few jokes to prevent the office staff from being annoyed, and told them I'd call again tomorrow to check once again.

Wednesday, March 28, I called in the afternoon once again to learn of the pathology report only to be told nothing has been returned yet. Frustrated internally, but not disappointed, I went back to waiting and praying. At this point, we were praying for what seemed obvious with our lack of knowledge, a lymphoma that could be easily planned out and treated.

Thursday, March 29, while waiting and eating lunch with my wife and youngest daughter, we received a call from our CT surgeon's office with news of the pathology report. Unfortunately, it was not a lymphoma. It was something we'd never heard of before, a paraganglioma. Having a diagnosis was finally comforting in spite of not knowing a thing about it. We did a brief research, but realized this was a bit more educating than we could do driving in a minivan with a tired daughter. So, our education began that afternoon with a lot of reading done on various medical sites online, arriving at more questions than answers. We knew pretty quickly that evening that if I wanted an experienced team of physicians who have worked on this issue before, we'd be traveling to larger medical centers. So, I began looking for specialists at Mayo Clinic in Rochester, MN, and MD Anderson in Houston, TX. Applications for consults were filled out online followed with phone calls confirming my applications were received.

Thursday evening, at dinner, we shared this news with my children. They didn't have many questions nor did they show much fear or anxiety as we assured them that our faith leads us to believe that everything will be fine and taken care of, according to His will. I am sure there will be times of anxiety and fear in the future, but we'll take those days as we get them.

Friday, March 30, was Good Friday. There's been a lot of spiritual reflection this Lenten season. Before this excitement kicked off on March 17, one of my few Lenten sacrifices was a daily devotion helping me become a better husband, father and friend by losing myself in Christ's unending perfection. I desired to become a better person as there are a lot of areas to work on. My prayer this Lent was often for God to take my faith life and increase it in ways that I am unable to, due to momentary laziness or not knowing how to take those first few steps. Well, I recognized as I focused on Christ's suffering, that my prayer was answered. Definitely not how I would have pictured it to be answered, but two weeks of sporadic prayer throughout my day, offering His will in my life regardless of desired news or outcome, has quickly shaped my faith and outlook over the past two weeks. My new prayer is to make these new habits more concrete as time goes on and healing has taken place.

Friday was a successful day in an immediate area of setting up an appointment with one of the nation's leading endocrinologists at MD Anderson for mid-April. On top of that, I collected all my medical history over the past two weeks and successfully shared it with MD Anderson as well, hopefully expediting quality care in my immediate future.