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

Freedom!

As some of you do annually, I have begun picking a word for the New Year. Frequently, the “word” or idea comes to me around November-ish before the New Year begins and I jot it down. So far, they have been profound and I’ve been amazed looking back in December at the end of each year at how that theme was divinely interwoven and consistently present throughout my experiences. To take a look back, here were the last few:

2012: REDEMPTION

2013: STORYTELLING

I had many beautiful stories to tell that birthed in 2013. I found myself sharing my story as well as Luba’s & my story time and time again. I connected with so many people of all ages and backgrounds through stories, both mine and theirs. You can read about both of those HERE. 

This year, FREEDOM came to me. I liked that. It sounded good. I quickly jotted that one down and claimed that baby. Then, as I pondered on it more and prayed through it, I realized it had a secondary part, VULNERABILITY. Oh no! Ouch! I think it’ll be a good year taking steps to more “Freedom” by being vulnerable, by taking the lid off many of those areas of my life that are snug, nestled way down deep inside. Being married this year will bring a lot of things into the light (well if I want to start off on a healthy start that is, and I do).

The learning process has begun and is in full swing!

I’m a do-er. I love to take care of others. I am there when someone needs something. I love to help. What I don’t like is to be taken care of. I don’t like to need someone to do something for me. I appreciate being independent and able. When my angiogram was scheduled, I was grateful that Luba is now here and would be there for the day with me. It’s expected in our relationship and I’m learning to lean into that more. Then, I was told that I could not drive home after the procedure. GULP. Luba is not yet driving, for technical reasons with insurance and such. I had to figure out a ride home so I scheduled that with a close friend. I hated asking but we’ve been friends for a long time and I know we would help each other out whenever possible. Everything was all set. Then, another friend was over for dinner and asked who was dropping me off at the hospital. Panic started to rise. I had to be there for check-in at 7am and I had not even thought of the obvious….if I drive there and get a ride home, my car has to get home somehow. She immediately offered to pick us up. Now, she is the most fabulous person ever. She’s just plain good people. BUT, to me, she’s a “newer” friend. The history is not yet there as it is with my other friend. It’s so easy but I was at a loss, frozen, as the offer of assistance was floating in the air. Everything ran through my mind “She works later which means she’s getting up and to work hours earlier than normal, AND on a Monday for Heaven’s sake,” “She’s got a baby and husband, this is inconvenient,” etc. “Freedom” and “vulnerability” flashed in my mind, and I said “yes!” This was a very hard yes for me. My mind immediately then ran through “payback” acts of service for her kindness. I felt a voice just say “Stop” and “receive.”

Why is it so hard for me/us to accept kindness? I am one who would drive someone else despite work schedules. I know it’s not inconvenient. Why couldn’t I accept this? I had to fight the urge to keep to a simple “thank you” without “payback.” I’m learning to accept blessings. This is part of the year, and I can see the odds stacked up in learning’s favor already. There will be many more moments.

It’s my goal to accept that people offer what they want and what they would be happy to do for or be to us. I must let other’s bless me.

Is it hard for you? Say “yes” and “thank you” and move on. Try it.

Love,

Danielle  

In this season

Here’s a loooooooong overdue update!

First of all, thank you so much for your generous support and donations! Of my personal goal of $765, I’ve raised $640. The team as a whole has surpassed our goal of $4865 so we are set!! We are humbled by your generosity.

As the date draws near to leave (tomorrow!), I reflect on how much “missions” has personally changed my life and that makes me excited for what this trip has in store!

I think the best change has been the many lessons on being transparent and vulnerable to others -- not only to my supporter community, teammates, family, and friends but also to everyone whose paths cross mine. The hardest part, however, is not being vulnerable to others but to myself. In that capacity, I’ve learned how to maintain a more obedient posture and to listen to that quiet voice that seems to come only when on one’s knees--the voice that encourages us to expose what has been so intricately hidden and disguised so that we can connect with others in a way beyond our imagination and sometimes comfort level -- a connection through pain that ultimately creates beauty and activates love.

I’ve learned to use whatever time/phase with which God has entrusted me. For now, it is a season of singleness. I never imagined to be in this season for so long and there’s a lot I could say but that’d take up too many blog posts. I’m happy I’ve always clung to that voice that has reminded me on so many occasions during dating, “Yes, you could have this but if you wait, I have so much more to give yo beyond what you can imagine.” For the past year, I’ve been waiting for the right opportunity to use this time. Over that same amount of time, my attention kept being drawn to the Village at NewSong. [Click here for more information about the Village] The purpose of the village is to provide a space to connect families who have a heart for orphaned or vulnerable children.

I decided to follow that continual prompt and attend a planning meeting to find out more about how I could get involved as a single woman (having known for years that I want to adopt internationally in the future). I thought at the very least I could find out information about the process for future reference. For those that know me, you know my skills are organizing, leading, and being a catalyst to set ideas into motion. For the first time, I sat dumbfounded and completely useless in the meeting. I wondered if that meant that I was there by mistake. I uncomfortably stayed through the meeting, feeling misplaced. During the closing prayer, my thoughts drifted (I’ve recently diagnosed myself with “prayer-induced ADD”) to a stream of my own.

I love the freedom of being single, but no matter what stage of life we are in at the time, I think dark thoughts seep in from time to time. These are a few thoughts that ran through my mind at that moment:

I’ve been so patient with waiting for the “right” men and do my best to serve others, how come so many other women who settle and/or who are selfish have beautiful families and seem to have everything?

Why doesn’t the right person pick me--am I getting too old?

Once again, passed over for the “cuter more outgoing one” or “the one that puts on a better show”As these thoughts grew and circled through my mind, I clearly felt God say, “Danielle, you ARE in the exact place I want you to be even though you can’t see it right now. These thoughts that you have circling and the pain they induce are what brought you here. These words (lies) and pain are felt by thousands of orphaned children every day as they also watch and wait. The pain in wait bind your hearts.” The strength and clarity of that message moved me to tears.

As I said, I love being single but with every “season” there is pain that is meant to bring awareness and spring love into action.

With what season has God entrusted you?
How will you use your pain and experiences?