Brain Tumor Faith Through The Fire

Through The Fire

Brain Tumor 101. Edie and I needed to share with our children, who to this point didn't know anything about what was going on. That is except for the fact that our oldest, Kaitlyn, whose curiosity eventually led her to ask us what we kept going into our bedroom about. This sparked a fire with our younger two, Grant, and Mandy. We finally decided to have a discussion with them once we had made all of our decisions and had all of the planning worked out.

Before all of the craziness started, my wife and I and our three children were able to slip away for several days to one of our favorite places, Hutchinson Island, FL. Thanks to our great friend Brett Thomas who owned the beautiful condo, it was almost a yearly retreat for us as a family. Except this time it was to be way more special to all of us.

It was while we were there, that we discussed my health concerns and my family and I had a memorable Bible devotional. This devotional is when my family and I decided on our family's favorite Bible verse. It's Isaiah 41:10 that says:

"Fear not, for I am with you; do not be dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you with my righteous right hand."

We all memorized that verse that day and it remains special to us this today. Our kids and I will always treasure those special moments together as a family.

My family and I prayed for my brain tumor and the surgery and we read and memorized Isaiah 41:10
Praying Hands Of Faith

Planning our trip to be away from our kids and for the removal of my brain tumor was a very overwhelming to both Edie and I. We had been charting a course where, as I had written earlier, was a little uneasy to me because I didn't know when, where, or how the next storm in life would come. I just knew that it would. Glad I had Jesus.

Remembering how I felt before as unused by God, I didn't want to mess this up by doubting what He was doing. Feeling strengthened and confident that everything would be okay, I kept my head high, prayed to Jesus, and trusted.

Prayer Time

A week and a half before we were to leave for North Carolina, our good friends and next door neighbors Mark and Melanie Parmer invited us over for fellowship and prayer before we left. While we were there it was so amazing to feel God's presence during our prayer time. I remember when Mark prayed, and and how I felt every word that he spoke and felt as if God was standing right over us. It was incredibly powerful.

On Sunday, Edie had arranged for me to be with all of the pastors at our church to be anointed with oil. That was one of the most special times with the Lord that I can remember. I am so thankful for my pastors at First Baptist Church of Orlando.

So we made the long trip up to North Carolina, a trip of which I remember driving most of the way. CeCe, Edie, and I were on our way to have my brain tumor removed, a Craniopharyngioma. I had said the name some many times from sharing with people, and explaining what led up to being diagnosed, that now the word Craniopharyngioma just rolled off my tongue.

CeCe said, "Charlie are you getting tired?" "Why don't you pull over somewhere and let me take over."

"No, I'm doing alright." I said.

CeCe is the type of person who is always looking after the well being of everyone. She truly has been blessed with a servant's heart. She has been an incrediblly great friend to our family. Especially to Edie. I truly believe that every mother and wife needs a great mentor. I am so glad and blessed that she is a mentor to my dear wife. She has poured so much into my Edie, and I can never ever thank her enough for that.

Well I knew CeCe could eventually get me to pull the van over for me to let her drive. As much as I wanted to be the man and drive all the way to Raleigh, I finally relinquished the helm.

"Now you pull over and let me drive."

I couldn't say no to her again.  Little did I know how significant that moment would be later in my life after my brain tumor surgery.

Peace Be Still

 

Jesus Calmed The Storm He Can Calm Your Circumstances

On the Monday after arriving in North Carolina, Edie and I met with Dr. Fukushima and his assistant Lori for a consultation. The purpose of the meeting with him was so that he could answer all the unanswered questions that we had.

Although we had several phone calls with Lori, we really had not gotten to speak with Dr. Fukushima yet.

After we met with Lori and gave her the CD ROM from my MRI, we sat and waited in the lobby of Dr. Fukushima's office for him to review the disc. I couldn't sit for very long. We were in the office of a great surgeon who is very well known all over the world. He had performed more than 1,000 brain surgeries in and around the optic nerve, optic tract, optic chiasm, and the pituitary gland with great success. He had performed more brain surgeries on brain tumors including the Chraniopharyngioma than all of the other surgeons we had interviewed combined. This boosted my confidence. I was pumped up and ready to get this brain tumor out of my head.

On the walls of his office lobby were huge plaques, recognition, awards, thank you letters, pictures, and posters from so many people that Dr. Fukushima helped. He helped these people get through one of the worst times of their lives. Seeing all of those stories of newspaper articles and clippings sent chills off my spine and down onto my arms and throughout the rest of my body.

Most people have had their life immensely impacted by someone that they know who has had a brain tumor. A brain tumor comes in all types, the worst of them being malignant. Being there in that office at that moment looking at some of those photos and the names of people who Dr. Fukushima had helped save, reminded me of the irony of my situation.

The irony was that I had worked as a pharmaceutical representative for the past 12 years. And in those 12 years at least 10 of them I was a specialist focusing on oncology and helping cancer patients receive their medications. While I was with with Walgreens I was hired as their sole oncology specialist in the country. I traveled to national meetings where I would train the new reps and also those who had no prior oncology experience as I coached a team in the SE Region. In that position I felt well liked, well respected, and very much appreciated.

What added grief to my situation, is that one of my best friends, Kent Jones from Tennessee, lost his wife Kaye Jones to a terrible and aggressive Glioblastoma.

At first she noticed head aches that continued for some time. One of the most obvious symptoms of a brain tumor is that of a headache that last and can be very painful as in my case. One day as Kent and Kaye were in Orlando visiting family, she developed a headache that was so violent that he had to take her to the emergency room. A cat scan revealed a mass. Kaye was referred her to MD Anderson. The neurosurgeon in Orlando told Kaye that she had a Glioblastoma, a highly malignant brain tumor.

Now Kaye, with an A++ personality, is the type of person who will tell you like it is. She didn't take any flack from anyone and was more than willing to speak truth to you, in case you needed to be corrected. She would be more than happy to put you in your place and make you feel glad about it at the same time.

The neurosurgeon told her, "Get your affairs in order, you only have one month to live."

At that exact moment with perfect timing Kaye looked him in the eye with total peace and she said to him...

"I'm a winner either way."

These words of truth from a faithful follower of Jesus, flowed from her soul with complete peace. Peace in knowing that if she died she would get to be with Jesus.

Not accepting what they were told, they notified Kent's brother,  who is one of the top in charge at a medical facility in town, arranged surgery with a highly respected neurosurgeon.

For the next two and a half years of her life, her family and friends wrapped her up in love in every way imaginable. Kaye who was fearless, survived two brain surgeries and two and a half years of chemotherapy, passed away.

These extra years gave Kaye more time to spend with her sweet little girl Hannah, who perhaps may not have remembered her Momma if she had passed away sooner. But during those three years, you never heard Kaye complain, she didn't worry, she just shared the joy of knowing Jesus and wanted everyone who she came in contact with her to know the love and the peace that she knew.

After slipping out of my thoughts of Kaye, with a transfixed gaze up at that wall in the doctor's office, I felt the irony of my circumstances. I remembered Kent and Kaye's unwavering faith. Their faith in Jesus, the love they shared, and the giving of their time as their most valuable possession. Indeed it was. When you looked at them, knowing what could possibly be the inevitable, you would see Kaye as an overcomer. She had no worries and no strife. She firmly believed and was heavily rooted in her faith and completely at peace knowing that possibly one day soon she could be in the arms of Jesus.

 Dr. Fukushima RE:

My Brain Tumor

I was so thankful and grateful to know that most likely the type of brain tumor that I had was not cancerous as was Kaye's. But as we walked into Dr. Fukushima's office what we were about to hear, took the breath away from us.

Before we began our discussion of questions and answers, he wanted to know how I found out about my tumor. When I mentioned that I was having headaches he was quite surprised.

He said to me, "You mean to tell me that you found your tumor because of headaches?"

And I began the explanation of how my symptoms started with what was thought to be Bell's Palsy, and also how one month later I had tremendous headaches and pain behind my left eye that didn't go away.

Dr. Fukushima leaned over to me and said, "You are very lucky you found this."

He continued, "Most people who have this type of tumor do not realize it until it is too late."

He said, "It spreads into the brain like fingers."

He waived his fingers in the air.

"And by the time you realize it there is nothing that can be done...it's too late." You'd be sitting here listening to me and not understanding a word that I am saying to you."

"Now." He said with a familiar accent. "There is something that you need to know and understand."

"Okay. What is that?" I said.

He lowered his tone into a very serious manner and he said, "This is a very risky surgery. Not only for your eyesight, which you already are aware of."

He continued in all seriousness.

"After you brought the CD Rom to me, I see more clearly in the disc than in the film that you mailed to me, that your brain tumor is really really close to the Basilar Artery. When I go in there it will be extremely difficult to work around this."

I swallowed and my heart pounded as Edie and I looked at each other.

Dr. Fukushima then said, "If I...if I...just one nick of the Basilar Artery and you will die on the table. There is no way to stop the bleeding. There will be nothing anyone can do to save you.!"

There was total silence as both Edie and I took it all in. It was unimaginable that we were there in the first place. I was there for a brain tumor removal and could die in the OR. Whew...But, no matter what we were just told, I still had a total peace about proceeding. I truly felt that God had a purpose and this was adding to my story that He wanted for me to tell. I knew as I had felt then when I was first diagnosed, that God was not through with me yet.

Philipians 4:13 "I can do all things through him who gives me strength." -niv

 

 

 

 

 

 

Going Blind Having Faith

Into Surgery

I'm going blind and keeping the christian faith. That was something that I had already decided to do. Because if my christian faith just sits and does nothing like faith the noun, then faith the verb is not put into motion. That would make me out to to be a hypocrite. Someone who takes in all the goodness of my christian faith, but idly sits when called upon.

I had seriously considered the thought of going blind and knew the chances of going blind were there. I had been informed. Part of me believed that just as long as I trusted God and that people were praying for me that it would all turn out perfect. No chance for that- I was going blind.

Going into surgery was a fairly simple routine. Most of you know the very basic drill.

"Put this on."

"I'm just going to check your vitals."

"The doctor will be in shortly."

And the you sit and wait on the doc in a brightly lit room that is so cold that it might as well be a refrigerator. If nerves really aren't enough to get you ripe for surgery, the cold has to be added to make the situation just right for the process. At least your blood will be so thick that you definitely won't lose much.

Then I remembered laying back, getting a shot in my arm and an IV drip. Almost lights out. I barely remember being in the OR room which was a much colder place. I felt something going down my throat as I was woken up and was asked to swallow. That hurts I thought...lights out.

Post Surgery Going Blind

I really don't know where I was exactly when I heard voices. Those indistinguishable voices that become louder as you began to wake up from a procedure.

"Can you hear me?"

I could hear her. I opened my eyes. Where was she? Still not seeing anything but a small gray shadow partly over me.

"I can't see..."

I heard nothing.

"I can't see." I said. I thought, "I'm going blind!"

She replied, "It's just from the drops that we put in your eyes."

"No." I said. "I can't see."

Being quickly rolled away, it was lights out again as I passed out from the anesthesia.

Some time later as I eventually awoke in recovery, I heard voices all around me. Dizzy, I opened my eyes, tried to focus, but could only see faint light and colored shadows. Frightened out of my mind I again thought, "I'm going blind!"

As I lied there in my bed, feeling completely out of it, and not knowing what to say or do, and at the semi-conscious thought of going blind I felt fear coming over me as I began to quickly come to my senses.

I desperately called to my wife Edie.

"Edie?" I exclaimed.

"I'm right here." She assured me as I became aware that she had already taken hold of my hand.

"You did really great," She said.

One of the problems with crying after having brain surgery through your nose is that you can get really clogged up. This is the making for a terrible situation. I already had contraptions all over my mouth and nose assisting in the recovery process. I didn't need tears and a stopped up nose complicating the whole recovery process.

I fought back tears. Tears from both the comfort of knowing that Edie was by my side, as well as those that come when tragedy knocks.

"I have notified Dr. Fukushima about your eyesight and he will be here in just a minute" the nurse said.

As the nurses continued to try to evaluate me, I continued to try to describe to them how it is that I see. Combined with my being half sedated and the fact that I had no experience in putting together anything descriptive enough about this type of eyesight that it didn't even come close to explaining anything.

Edie, and one of my family's dearest friends, CeCe, were there by my side. Both of my hands were being held as they prayed over me.

Waking when the sound of Dr. Fukushima came in the room startled me. He quickly began to evaluate me and check on the surgery site and discussed with me the importance of keeping my head back and not looking down. And that looking down would cause the spinal fluid to leak out of my head. If that happened, it could cause serious complications.

At the site of my head where Dr. Fukushima drilled through, there was no bone left remaining. So he performed a procedure that removed fat from my abdomen packed it over the inside of the hole that was drilled. This would then eventually grow onto the bone to cover the site of entry preventing spinal fluid leaks. Any problem with leakage could cause the packing to shift and would require an additional surgery.

Dr. Fukushima then came over to me and started checking out my eyes. Even though my eyes were fine, it was something that had happened during the surgery that he was concerned about. I could hear him as he stood at the foot of the bed asking me, "can you see me now?"

"No." I would then say. Repeatedly I responded with a "no" until I eventually saw a small shadow moving into my field of vision. Even though I couldn't make out what it was, I could see a haze of movement.

Dr. Fukushima, from what I gathered, was very distraught. He felt as though he had failed. He was never one to take his profession lightly. His reputation surpassed him. In his office he has wall to wall awards of recognition for the successes that he has had.

After consulting with Edie at length, he came to my side and said. "We will have to watch your vision to see how it goes. If it gets any worse we may need to do a second surgery. I am concerned there is too much pressure on your optic tract, which is causing your loss of vision." "

He then said, "I will continue to check in on you and have my nurses check on you throughout the day." "Hopefully your vision improves and doesn't get any worse."

The strangest thing that I remember seeing was thousands of floaters in my vision. Although there was nothing really there, it seemed that these floaters that I was seeing were like very small electrical components with shapes that I cannot describe. And they were moving across very quickly. So quickly in fact that it reminded me of a science fiction movie that shows stars moving by as acceleration takes place up to the speed of light. Whether I closed my eyes or not they remained. Sleep, I just need sleep.

One of the benefits that I had to alleviate the pain in my head was a morphine dispenser. All I had to do was push a button once, twice, or up to three times per hour depending on my pain tolerance, and I was off in La La land.

Emergency Surgery

I was wakened many times throughout the day with vision checks and check ups on the surgery site.  It became evident that hope for any improvement in my vision was lost when they could easily tell that my vision was deteriorating. Finally at 4:00 a.m. the next morning, the nurse had come in for one final check before shift changes. My vision had deteriorated. I couldn't see much of anything.

"I need to call Dr. Fukushima and let him know. I'll be back.

A few minutes later, the nurse returned and said, "Dr. Fukushima will be here in 10 minutes. He's going to bring you back into surgery. He thinks there is too much swelling going on in your brain."

My heart sank. Fear began to take control. My first thought was to pray. If there was some way for me to wake-up all that had been praying, to be praying for me during the next surgery. "10 Minutes."

"I need you to call me wife."

Nurse- "Okay I'll call her and let her know." "I'll be right back." Her footsteps down the hall trickled off.

Nurse- "I tried calling her and another number that you gave us. There was no answer." "We need to go ahead move you out of here and get you prepped for surgery."

"No!" I said. "I'm not going anywhere until I know that people are praying for me." I protested.

Think, think!

I had trouble remembering CeCe's phone number.

Trying to think straight with a hole in my head, being high on a morphine drip, my inability to see anything, and needing to find my phone was ridiculous.

"Find my phone and you will see her number and call her." I said.

Shortly after, he returned. "Okay, they finally answered and they are on their way here."

Relieved. They were only across the street at a hotel. It would take them 10 minutes to get here.

Feeling better and knowing my wife, she would have contacted people right away to let them know how they could be praying for me. She also had access to CaringBridge people registered to receive updates on my status. That would be updated soon as well.

As soon as Dr. Fukushima arrived it was obvious. He could be heard coming down the hallway toward my recovery room. He came and did a vision check. I couldn't see anything.

"Okay. Lets get him in the OR." He said.

Quickly I heard bodies around me getting things together and getting ready to roll me out of the room.

One of the best things about technology is that it has a great way of making things more efficient. Or perhaps, that is true in most cases. The bed that I was lying on was supposedly a remote control bed that could be operated from a controller and driven up and down the halls. Costs up to $40,000. The hospital that I was staying at was Duke Raleigh. They spared no cost and just bought many of these.

can we have the surgery now?

Just when they needed the bed to work it didn't. And Dr. Fukushima didn't wait.

He said "Lets push it into the OR."

The bed that I was lying on probably weighed more that 500 lbs..

"Push! Push!

Dr Fukushima shouted. He wanted to get me in OR quickly as he thought that things were pretty grave for me.

"Push!" -crash.

I felt the bed bang on to a corner of a wall. Too heavy to stop.

Finally in the hall.

"Push!" Push!" The little Japanese man was impatient.

Then again a sudden, "Crash!"

Another wall perhaps? We were flying down the hall as I heard more footsteps coming to assist and then something to the sound of boxes being knocked over. "All this special attention for me?" I thought.

We finally were arriving after banging another wall rounding the last turn into the ice cold refridgeratOR.

I felt the bed come to a stop. Footsteps walked away and then silence.

Where did everyone go. Weird. I was out of it, lying flat on a bed, couldn't see a thing, and had no clue what was happening. Close by I heard a conversation.

"But how are we going to have a surgery when we are not prepared for this?"

Next person, "I don't know but Dr. Fukushima says to do the best with what we have."

There was more bantering that seemed to go on and on. "Stop your Nitpicking" as my Dad would say to the children in a fight.

I finally had to engage and said, "At what point are we going to have a surgery here?"

Silence. I guessed that perhaps they forgot there was a patient in the room? memoirs of an Operating Room?

I don't remember much after that except for being woken up again, with, "Charlie, Charlie!" "Can you swallow for me?" "I just need you to swallow." That tube in my throat. Again. "Ouch!" I was out.

Whenever I had finally woke up in ICU I thought I was dead. I couldn't remember where I was. I felt excruciating pain in my head and my face. My mouth felt as though it had dehydrated and was left out on the sun to bake. My throat felt like fire.

My thoughts immediately became focused about going blind. I opened my eyes to the sound of Edie's voice. I couldn't see her. I had heard her voice. What are all of these things flying around. It was the same as before. Terrible things flying around. Blurry super bright light...

"Dr. Fukushima is coming in." I heard someone say.

I can't remember every detail, but what I do remember was that Dr. Fukushima seemed as though he failed.I heard it in his voice. I could sense a dissatisfied physician. Clearly one that was not used to failure.

I was alive. I was happy. And to me he was no failure at all. My vision, I was sure would get better. I hoped.

"Mr. Thibodeaux" Dr. Fukushima said.

"We are going to do some tests on your vision. Now remember that no matter what you do, do not lean your head forward. You are still not able to do lean forward or look down for fear of a spinal fluid leak."

"Now I want you to look at me and tell me what you see" he said.

As hard as it was for me to put it into words I couldn't. How do you describe what you have never experienced before? I didn't even understand what it was that I saw. The thousands of particles flying by in my eyesight were distracting and distorted and prevented me from making any sense out of what I saw. The objects that I saw in the room were more than what I saw before, clearly I could see better. But as I tried to focus on something, things were not all there.

"I want you to look straight ahead and tell me how many fingers I am holding up." Dr. Fukushima said.

As he waited in the silence for my response there was none. Again he said,

"Just tell me how many that you see."

"I don't see any fingers."

"Okay." Now tell me how many that you see." He said.

"I see three." I said.

Apparently I got that right. Better than a broken bed perhaps?

He was almost onto something, I thought.

"Okay now I want you to look straight ahead and tell me when you see my finger."

I waited for a couple of seconds and suddenly a hand and a finger appeared from my right side out of nowhere like a magic trick.

"Now." I exclaimed.

"Now one more time." he said.

I again waited and suddenly the same hand and finger immediately appeared in my field of vision from my right.

"Now!" I said.

"Now this time I want to do it from the other direction." Said Dr. Fukushima.

"Just tell me as soon as you see my finger."

Almost immediately I saw his hand and finger in my peripheral vision while looking straight ahead.

"Now." I said.

We went though many more visual tests over the course of about what seemed to be 5 minutes more.

"Charlie?" He said with a big pause, deep breath, and a long sigh.

"It appears."  Another long pause. "It appears that you have lost your peripheral vision on your  right side with both eyes."

"I want to test each eye individually the same way to be sure of it." He said.

I didn't understand. He tried more to explain by demonstration.

So we went through the same slow process as before  but much more slow;y as he explained it all to me. We had the same results with each eye.

"Unfortunately, the condition that you have is a type of blindness called Bitemporal Hemianopsia." He said.

"Going blind is something that happened due to damage to the optic tract, most likely due to the swelling that occurred in your brain after the surgery. What I did when we went back in for the second surgery, was remove some of the packing to alleviate some of the swelling that was putting too much pressure on the nerve."

I gave him a blank stare as I was taking it all in.

"Whether or not your visual field will return remains to be seen. It could take days, weeks, or months. Your peripheral vision may not return. But if it does return it would have to do so within the first two years. After that most likely your vision will not return.

Going blind was a frightful experience. I was grateful to have some of my vision return. We all hoped and prayed that all of my vision would return soon.

 

Going Blind With Henianopsia Makes Life Extremely Difficult To Manage In A Changing Environment

To be continued: