Surgery Day! 9/4/14

Has it almost been a week already? I’ve wanted to write this post but have honestly been too emotionally overwhelmed and in shock that this is really over. Medically uneventful. Miraculous. Short. For a few days, I would just look at Luba with a questioning look as if waiting for the other shoe to fall.

You can scroll back a few blogs for more background on what I had going on or what I was feeling. Basically, I had a very rare tumor called a vagal schwannoma. It’s on the “main dog” cranial nerve. Removal of the tumor promised vocal cord paralysis and temporary-permanent difficulty swallowing safely. I had surgery scheduled for March to “cut the nerve” and remove the tumor. Luckily, I’m one who researches and is slow to trust medical professionals when my “inner voice” or gut feeling is screaming inside. I ask a lot of questions and need adequate answers to feel satisfied (which is reasonable and should be the case for everyone). Something didn’t sit “right” and some medical professionals bravely chimed in along the way encouraging me to wait and further explore options.

Some questions to the initial surgeons in February:

Can I wait until after the wedding in April? No

Is this an emergency? Yes

Is there any way to do surgery and save the parent nerve—such as leave a small piece? No

Will I have a voice? It will be between a whisper to very hoarse.

What about the scar and my wedding? Photoshop does wonders for pictures.

After excruciating months waiting, fighting and experiencing some awesome mini-miracles and promises along the way, I got into UCI and had highly specialized surgeons on board to assemble my surgical team and they were willing to listen, collaborate and offer a newer medical procedure called intracapsular enucleation (IE). They actually offered the choice between “watching and waiting as there was NO HURRY” or surgery. Surgery was the best choice for me. That question about saving the parent nerve? Oh yeah, that’s IE. Based upon my conversation with the top surgeon performing this procedure in the USA, about 50% of surgeries with IE can result in minimal effects and no vocal cord paralysis. To date, he has seen no regrowth from the tumor piece that is left on the nerve in his cases over the last 30-40 years. This was what I felt most comfortable with in terms of treatment and moving on with little worry. Many choose to wait since it is benign and the procedure is risky.

Fear of course crept in from time to time but I always felt God whisper a couple things:

I’ve given you this voice. I won’t take your gift but I will enlarge your territory.

It is done. “It is done” is something I felt on a daily basis no matter how I was feeling. I just felt like I was given an inkling of foresight although I wouldn’t know details.

I prepared for this battle for months. A battle for life, for freedom is exactly what it felt like. I joined a FB group with those with the same diagnosis. Some have had surgery while others are waiting or are in the process of having surgery. It was nice to be in an online community where others understood my every feeling. They were transparent regarding their experiences and post-surgical complications whether temporary or permanent. I researched, I fought systems and procedures (including the insurance company), I prayed, I bathed myself in healing scriptures and songs, and I assembled a prayer team that would serve as the Navy Seals in the spiritual world. For every moment that I was under anesthesia and in surgery, there was someone designated to pray for 15 minutes up to 1 hour. It was a carefully assembled team of those who were able to commit to drop everything and ONLY intercede on my behalf. They prayed for the surgeons and surgical teams. In addition, there were countless others who prayed as time allowed or as the Spirit moved. There were churches praying – churches that I have never attended or heard of. Moms and Grandmas that I do not know personally were praying. From one end of the earth to the other across time zones, people prayed in unison. I can only imagine the thin line between Heaven and Earth in those moments. The thought of it brings tears every single time. The countless texts with scriptures about healing just solidified what I already knew. Those texts have rolled in along the way and continued throughout the morning of the surgery. So many made sure that I would receive those messages before going in. That experience of community and “an army assembled” is truly indescribable.

My mom drove in from Mississippi and arrived Tuesday night before my scheduled surgery Thursday. We all checked in to the hospital at UCI by 6am. I felt eerily calm. Maybe sleep deprivation helped? The staff was quick to check me in and get me started. I was so thankful because the waiting was the worst and waiting had gotten so old by this time.

They came to get me and walk me into preop. I giggled as I saw the room I was headed to and heard the nurse say “I have #7 checking in.” Seven. My favorite number. Of course, I was in 7. Seven has significant spiritual significance and represents the foundation of God’s word. It is the number of completeness and perfection both spiritually and physically. “It is done.” A wave of calm and peace washed over that cannot be explained. I was ready. I had been obedient. I had listened. I had stepped up to the line as far as I could go and I knew that God would complete the rest in a most miraculous way. My favorite line from one song that became relevant for me (It Is Well by Bethel) was:

And this mountain that’s in front of me
Will be thrown into the midst of the sea

We had some fun in preop as I waited for the surgery time. My mom, her husband Joe and Luba stayed in before Mom and Joe left in order to leave Luba and I with some last moments of quiet. I’m thankful for those few sweet moments of vulnerability. I loved the anesthesiologist team and they went above and beyond for my comfort and finding the best for me including searching for a smaller endotracheal tube (and she scored the last one in the hospital AND negotiated it from the person about to place it in a man). My endotracheal tube was larger than average due to the nerve monitoring features. I was wheeled into the OR by the anesthesiologists and then O-U-T with no warning or countdown. I asked the nurse to take a picture of the tumor and then I woke up in recovery. Maybe they shut my bossiness up because I had also reiterated that although I did not care who watched what, I did not want residents touching any cranial nerves. This procedure was tricky enough and saving my vagus nerve by highly specialized surgeons was described by one as “dicey” although they would do their best.

I can’t describe the feeling of facing the unknown before going under. With most surgeries, you have an idea of the aftermath of the procedure or you know WHAT is coming out. For me, they couldn’t identify the cranial nerve to which it was attached with certainty but I knew it was “probably” one of 3. If it wasn’t the vagus, I knew they wouldn’t salvage the nerve and I would wake up with paralysis of some sort or deficits. Because of the importance of the vagus, they would spend time to avoid disruption to this one only. Still, I knew that I may wake up with some deficit and I knew it would still be “okay.” I was aware that when God assures you that you will be “okay” it may not be in the way you expect. I knew the learning curve all too well of how long it takes sometimes to realize that you ARE okay and there was a plan all along. Still, “it is done” washed over each thought and fear.

I had two teams for my surgery. Although this tumor did not appear to be malignant, both teams are specialized in oncology and neck/skull base tumors. An ENT team did the opening/closing and navigated TO the tumor. She had to get to the tumor without damaging other cranial nerves along the way as well as major arteries and veins (the tumor was nestled by my carotid artery and jugular vein). The neurosurgeon used a microscope to perform the surgery on the tumor/nerve. All nerves were monitored throughout. The surgery took less time than expected being between 4-5 hours surgical time.

I woke up in recovery, alone with a nurse. I have never felt as vulnerable as that moment. What was my new reality? She said they wanted a few minutes with me before calling in the family. The first thing I did was check my vocal cords. I cleared my throat. I thought of something to mutter to the nurse. Was this real? One of the surgeons came in and asked me to stick out my tongue and then to vocalize. She left. I asked the nurse if I lost any function. She said no. My mom and Luba came in. I was still groggy but could see by Luba’s expression that something must be “big.” I then questioned facial paralysis. He asked if I had seen “it” yet. I had not. I assumed it was bandaged but it wasn’t. He took a picture so I could see. These are the pictures I saw—my first glimpse of the surgical site.

Shortly after, I went to the postop room where I would end up spending the night. When I went to the room, I asked for water and was offered a clear diet. I devoured that plate. The ENT team came in to check in. I was immediately bumped up to a regular diet. Really, no swallow study?! A few hours after this risky surgery, I was eating a quesadilla and drinking coke all the while  TALKING to my mom or Luba.

I had no pain other than that migraine that had been following me for weeks. I had no sore throat which was promised to me by the anesthesiologist due to the size of the tube. My mom spent the night with me – no cot, only a hard chair. I so miss family. This time was a gift. With who else can you be as vulnerable? By rounds the next morning, I incessantly asked when “check out” is. I was ready to take my grateful heart home.  At noon Friday, they removed the drainage tube (Ouch!) and discharged me. I was headed home in less than 24 hours after the surgery concluded. I had a bandage to be worn for 24 hours while the drain tube site healed and then removed with no further covering.

Since being home, I’ve experienced minimal pain. I’d describe it as “discomfort” from time to time as the site heals and itches and stretches. Daily, swelling goes down and range of motion increases. I have had barely a sore throat here and there. I’ve eaten everything I have wanted. I’m just trying to be still (SO hard for me) and continue healing. I know an infection could result from carelessness. I’m careful to avoid lifting or straining the neck. All of this? Pale in comparison to what real possibilities were.

The scar? HUGE but I’ll take it. It reminds me of provision. It reminds me that I’ve been entrusted with yet another miracle. It reminds me that I’m loved in the Heavens and across the Earth. It reminds me that I have a story that must be told. It reminds me that I’ve been given much and with that gift comes expectations and duties. It reminds me to love better, stop and smell the flowers, and worry less. It reminds me that we all carry an unseen burden so lead with kindness and grace. It reminds me that even in my darkest times, a host of people will come running with their lights to show me the way, fight on my behalf, and love me through the process. The scar reminds me that humanity is good and we are one. Will I hide it? Never.

Thank you for your part in this journey. God did this, but He worked through so many of you in a very tangible way.

With a very grateful heart,

Danielle

Extra pictures (warning: "IT" is in here)

who I felt like when I checked IN to the hospital for surgery

Mom & I spending time before surgery day 

"It" aka "Testy"

Hooray! It's over! And I can eat hot dogs! Much needed play time awaits Luba and me

Proudly sporting this scar, standing next to the best choice I ever made