Mark is an ambitious soul with intentions of becoming yet one more blogger adding his unique thoughts to the never-ending Interwebs. In all seriousness, this is just an outlet to share the down and dirty on a journey through health, faith, and things too personal to discuss without a few beers.
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.
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.
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.
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.
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?
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. 😆
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:
I passed my swallow study so I was allowed to start eating yesterday afternoon.
I'm up walking around. I've even challenged a few old men to a race!
Several tubes that were placed during surgery have been removed over the past 24 hours.
A few downs over the past 48 hours are:
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.
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
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!
