Are You Sitting Down?

"I got the call today
One out of the gray
And when the smoke cleared
It took my breath away
She said she didn't believe It could happen to me
I guess we're all one phone call from our knees"

Thursday afternoon I was driving home from class. Driving 70 MPH in the HOV, I suddenly felt like I was going to pass out. By the time I got over a few lanes, the feeling passed, but my heart rate was really high and I still didn't feel right. I called my doctor and asked if I could get in, explaining what had just happened. After hearing my story, they said to go straight to the ER if I was still having the symptoms, or if I was feeling better to drive straight to their office. I went to their office and they did a thorough examination. EKG was normal...fast...but normal. They ordered a brain MRI just to be safe.

Friday morning I got up early and felt good. I went to get my blood drawn and I called the imaging place to get my MRI scheduled. They had an opening at 12 so I took it, wanting to figure out what was wrong as soon as possible. Everything was normal for the first 20 minutes of the test. After completing the last set of images, the usually calm technician's voice came on over the headphones with some urgency in it. "Shaun, you need to keep your head and spine completely still. We're going to pull you out, inject contrast into your vein and then do the images again." My heart instantly started racing. I knew what that meant. They found something. Contrast is a dye that they inject into the veins that appears a certain way on MRI, illuminating areas for the radiologist to more easily see structures. I knew that contrast was not on the original MRI order. As soon as he slid me out of the MRI machine I frantically asked him what was wrong. What did the radiologist see? "I can't tell you anything. All I can tell you is that the radiologist who is responsible for reading these has asked for it." I was shaking with fear. I had already needed one blanket because the room was cold, but now even with a second blanket I was trembling uncontrollably. The MRI tech was silent. He just put the second blanket on and patted my leg. He didn't know what to say. It was so hard to stay still for the next set of images. When it was over, I went home and laid down on the couch with Natalie to watch TV and settle down.
About 2 hours after getting home the phone rang. It was my doctor. Just like the MRI technician, she had a distinct tone in her voice that told me that this was not a reassuring phone call.

"Did Dr. Hoffman, the radiologist, call you yet?" she said.
"No"
"Are you sitting down?"

There are few sentences that carry the assumption that whatever is said next would be life-altering. This is one of those sentences. In the second it took her to start her next sentence, my mind raced with everything it could possibly be and the course of treatment and fears that would fall in line for every different thing she could say.

"You have a mass in your brain. It's pretty big...and you're gonna need to see a neurosurgeon on Monday because it's probably going to need to be taken out."

My heart has never dropped so hard, so fast in my life. I was imagining a life different from what I had ever before thought. A world of unpayable medical bills, surgeries, the constant fear of death and leaving my beautiful wife and my family behind. Natalie's eyes were already filled with tears. She heard "brain mass". She got up and walked across the room, letting her emotions out where they wouldn't detract from me listening to what I was being told. While the doctor continued to tell me about the situation all I could do was hurt...not just for me, but for Natalie too. We're so young. We haven't even been married 2 years. This isn't supposed to happen to us. The life we imagined together doesn't look like this. I hung up the phone and Natalie could barely get the questions out, "So you have a mass in your brain? What else did she say?" We hugged and cried together for a minute. Then I had to go get the fax of the MRI report from the front office of our apartment complex. Natalie called her mom immediately to talk and pray. I called my mom as I walked out of my townhome. How do you start a conversation that carries the meaning of this one? How do you tell your own mom news of this magnitude? I said the only thing that came to mind.

"Mom. . .Are you sitting down?"

I quickly explained to her everything that I knew at that time before I got the MRI report. When I got the report I called the doctor back.

"What do I do now? What doctor do I need to talk to on Monday?"
"We don't know exactly. We're thinking maybe Dr. White at Barrow's Neurological Associates. If you feel any tingling or numbness in your extremities or any other weird sensations, go to Barrow's ER immediatedly. That's all we know."

That's what I was left with for the weekend. Only the fact that I had a mass in my brain that needed to be taken out and the name of a surgeon that may or may not be able to help me. All I could think of was how ironic it was that our church was going through a series called, "Live Like You Were Dying." I think I need to take it to heart. This might be true for me.

Our families and friends were so amazing. Within hours after receiving the news, my brother came over to see us, Natalie's whole family brought us dinner and spent time with us, and my parents drove up from Tucson to stay until we found out what the treatment would be. From that point on we were flooded with love, support, and prayer from family, friends, and people we didn't even know. We kept learning about different prayer chains that we were on and people kept offering to help with anything and everything. My wife and I have never felt so loved in our lives. We felt truly encouraged and strengthened through all the support we got. We couldn't imagine having better families or friends. It's just not possible.

Even with all the support, that weekend was the worst of my life. I couldn't eat. I could barely sleep. I was more scared than I had ever been before. All I knew about this thing in my head was what I could find online, which wasn't too assuring. I got to see a surgery on youtube, and read about all the surgical techniques that were available. My mind continually messed with me for days, thinking that I was suddenly feeling something different in this leg or that arm or feeling suddenly lightheaded.

Saturday morning, Natalie and I both woke up in tears. We were both lost and scared, having no clue what to expect next or what was going to happen to me. We got the Bible and looked at each other. Where do we start? For Christmas my parents got me a ring. On one side it said "Fear Not." On the other side was a Bible verse - Isaiah 41:10. "Fear Not for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. . .For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Little did I know back at Christmas what this ring and its message would mean to me - both now and for the rest of my life.

I couldn't wait to get to Sunday. I knew it would put me at ease to go to church and pray with our pastor. I wasn't prepared for what happened that day though. When we were talking to Pastor Greg after the service, he asked what the name of the surgeon was who we were told about. I told him and we went on praying and talking about the situation. A couple hours later he called me.

"Shaun, guess what? After I talked to you I talked to our drummer and told him about your situation for him to be praying. He asked who the name of your surgeon was. When I told him it was Dr. White he said that his wife was the personal trainer for Dr. White and his wife. She's going to call them tonight and ask if they can get you in as soon as possible."

I was speechless and in tears. What are the odds of this happening? It was clear that God was giving me a reminder that He is in control and He knows what's happening. He's there and He's going to show me through this. A couple hours later Pastor Greg called me again and told me that the lady had already talked to the surgeon and he promised to see me as soon as possible, and they gave me information on how to contact them immediately Monday morning. They would be expecting me. After that, Natalie and I went out to dinner at Cheesecake Factory to get out and be with each other and try to get our minds off of everything. For the first time since Friday before we got the news, we both had an appetite. We could feel God moving and it brought about His peace that transcends all understanding.

The next morning I called the office and just like the doctor said, his secretary knew about the situation and told me to get the MRI's and come down to Barrow's as soon as possible so that they could see me. Without an appointment and without taking any of my information the doctor looked at my MRI's and met with me to tell me that it wasn't an emergency situation and it may not even need surgery. However, he was not an expert on this type of mass. He referred me to another neurosurgeon in there that would know all of the answers. He passed all of my MRI's and reports on to her and let her know that he was referring a patient to her that day. However, she was in surgery and none of her staff was in the office until Tuesday. Honestly, all of this news took away some of my confidence. Why would God lead me through that weekend with all that happened and those people that knew Dr. White and got me in with him when he couldn't even help me? The road was taking a turn that I hadn't expected. I had to keep my spirits up that I still got to see the neurosurgeon for free and he assured us that it wasn't an emergency.

The next day (Tuesday) I called first thing in the morning and her secretary said that she would call me as soon as the doctor looked at the MRI and had any news for me. Until then I needed to get the reports from the CT scan that I had as a child that showed a dark spot in the same area of my head. Those would help the doctor make a final decision. They called back later that day and said that it didn't look like I needed surgery, but they still needed to see the reports from when I was a kid to know for sure. Those would not reach Phoenix until Wednesday morning.

Going through this whole process was agonizing. Every day that it was delayed was torcher. Every day consisted of me waking up by 6:00 or 6:30, worrying about what that day was going to bring. I would never be able to go back to sleep after I woke up with those thoughts. I would lay in bed for at least another hour, hoping to be able to get back to sleep for just a little while longer. Then I would get up and go work out, trying to get my mind off of what would happen that day and try to make the time go faster. After working out, I would try to eat breakfast, but food was nauseating to me. I could never get much down. Then I would just sit and wait until we heard from the doctor's office. We just wanted to know for sure what was going to happen. Is that too much to ask?

Lifehouse just released a new song that I found during the week. It's words were very close to what I thought and felt.

"The broken clock is a comfort. It helps me sleep tonight.
Maybe it can stop tomorrow from stealing all my time.
I am here still waiting though i still have my doubts.
I am damaged at best, like you've already figured out.
I'm falling apart, I'm barely breathing
With a broken heart, that's still beating
In the pain, there is healing
In your name I find meaning
So I'm holdin' on, I'm barely holdin' on to you."

Most of Wednesday was spent waiting for the doctor to call with her final decision. Until then we just waited around, hoping to get in to see her and ask all of our questions as soon as we heard anything. Natalie was at her nursing clinical. I couldn't stay home alone. I had too much on my mind. I went to Paradise Bakery to try to get some food down and have distractions around me. The doctor's office called at 9:30 to tell me that they had all the reports and they would call back as soon as they knew anything. Hours past. Not yet being able to go home, I walked around the Biltmore Plaza, praying and talking to family on the phone. Not knowing what the doctor's decision would be, my mind kept racing through the possibility that she would change her mind about surgery. I kept seeing the image of the surgical sheet draped over me, only exposing the incision sites. It was now 11:30. Why is she taking so long? Is she getting opinions from other doctors? Is she mulling over the decision? I couldn't stay at the Biltmore all day. I had no choice but to return home. I didn't want to go, but I really didn't have any other choice. 1:30 and still no word. I couldn't take it any more. I called them to get an answer. Her secretary was always extremely understanding and helpful. Oh I was so grateful for the secretaries of the 2 surgeons that I had to talk to that week. They were both so nice and understanding. I think they understood who they were mostly dealing with. They deal with people who are scared. I think scared is a gross understatement. They have been shaken to their core. Some of them have been demoralized by the bad news that they've recently been given and they are turning to an option that they had always hoped not to resort to - brain surgery. She put me on hold and went to ask the surgeon immediately. She didn't take long. The doctor had made her final decision. No surgery was needed, but they would be happy to meet with us to discuss any questions that we had. Finally, I could take a deep breath and let out all of the fear of surgery and of the unknown.

Thursday we got to talk to the neurosurgeon and ask all of our questions. Basically we just wanted to know the basics of what was in my head. We hadn't yet gotten to talk to anyone since the diagnosis. No one explained to us exactly what this is and what the MRI report was fully talking about. I had only relied on my own medical knowledge at this point to understand everything about the report. This thing is either called an arachnoid cyst or a Dandy-Walker cyst. They can't tell by MRI exactly which one it is. I think it's an arachnoid cyst though. So that's the one I'll explain.

Both options are congenital, meaning I was born with it. There are 3 layers of connective tissue that cover your brain and spinal chord. The dura mater is the tough outer layer, the arachnoid mater is the the middle layer, and the pia mater is the inner layer that adheres directly to the brain. An arachnoid cyst forms when the arachnoid mater and the pia mater split apart at some point and fills with CSF (the fluid that encases your brain and spinal chord). These grow in places where they connect with one of the ventricles of your brain, which is where the CSF is produced and stored. Mine connects with the 4th ventricle. It sits in the back base of my skull on the right side, behind my right cerebellum. It is 5.9 x 6.3 x 8.0 cm. Yes that is a big one. Thankfully it has grown in proportion to me and my brain has adapted. My cerebellum is much smaller on the right side because it didn't have room to grow. So either my left cerebellum took over all of the functions the right one was supposed to have, or my right cerebellum is extremely concentrated with neurons. I'm sure you're wondering why something that big doesn't need surgery. That's the first thing I wanted to know. The neurosurgeon explained that there is still adequate spacing between the different compartments of my brain. Yes it's large, but it's not pushing on any other structures or causing any problems. My brain just grew like nothing was wrong and adapted to the room it was given.

I will have a yearly brain MRI to be sure that it isn't growing, but the doctor said that the chances of it growing and causing a problem that will require surgery are slim. Almost exactly one week from the time that I arrived at my physicians office after having an anxiety attack on the freeway, I was now walking out of the neurosurgeon's office. And it was finally over.

Now God doesn't bring us through situations like this for nothing. He uses these times to talk to us and teach us what we've either forgotten or have not yet learned either because we weren't ready before now, or because we weren't listening. He never brings challenges our way until we are capabale of dealing with them and we are ready to learn from them. I was ready and I took with me some lessons that I will never forget.


"Sometimes I get so tired
Just trying to find a place
To lay my head
I look up to the sky
I feel the warmest light comfort me
I've seen the great heights
Reminding me... that I'm alive
I don't wanna die
I don't wanna waste another day,Or night
I know there's something more
Than what we're living for
I see it in the stars
I feel it on the shores
I know there's something
I know there's something more."

*Song lyrics borrowed from:
-Mat Kearney "Closer to Love"
-Lifehouse "Broken"
-Tyrone Wells "More"