Surgery to drain fluid and have a biopsy

For those of you following Nathan's journey, here is a post that I made on Facebook about 2 weeks ago.

It just slipped my mind to post this to the blog! I'm so sorry! 

Here is the latest from Nathan's scans this week.... (week of 12-13-16)

So, everything looked good with regard to the tumor. There isn't any regrowth and it looks the same - Praise the Lord!

However - there is an issue with fluid in his tumor cavity... Let me back up and explain:

After his surgery at Vanderbilt, the baseball-sized cavity in his brain filled with fluid over time. When you have some sort of surgery to remove something out of your body, your body will naturally "fill" that space (or cavity) with fluid. So, that is completely normal.

Now that Nathan is on this trial, the T cells that are being "jacked up" from his infusion are hopefully going to the brain and killing the cancer cells. When these T cells kill the cancer cells, they kind of turn into sludge-y fluid (for lack of a better term!) when they eventually die off. This sludge doesn't have anywhere to go, because it's in his brain (due to the blood/brain barrier). For example, if he were to have cancer in his liver and the T cells went to kill the cancer cells there, they would, again, turn into sludge but go into his bloodstream and die off and break down. This can't happen in the brain. They're stuck there, therefore, creating more fluid in his brain over time.

As the fluid gradually grows in size over time, it's acting like a tumor - creating pressure on his brain - which is causing the partial seizures, fatigue, terrible headaches, and weakness on the right side of his body.

SO - what he's going to have to do is get the fluid drained. They said when he does this, he'll feel a lot better - sort of like when the tumor was removed. We don't know about the specifics of the procedure yet. What we DO know is that they want to take a biopsy from the tumor tissue (while they're draining this fluid) to see if the T cells are really doing their job and that they're in the tumor *hopefully* breaking it down. They said the procedure is not too invasive. He'll likely spend one or possibly two nights in the hospital.

The doctors also said that this is not an emergency. We can wait until after the holidays to go through with it.

Just to be clear, this is what the Doctors are thinking - so it's theoretical. They do truly believe that the T cells are breaking down the cancer cells but won't know for sure until they get the pathology report back from the biopsy of the tumor tissue. Nathan is not exactly "excited" about the inevitable surgery but knows that he must do this to feel better. I am so proud of him for his continued positive attitude and strength through all of this.

Nathan's procedure is scheduled for Friday, January 6th. 

We will go down to UAB on the 5th to have a meeting with his surgeon, Dr. Riley. After this meeting, we'll have more details about what to expect with recovery time, what the procedure will look like, etc...  

Thank you all for your prayers. I will update you all when we have more information in the next week.

Much love and many thanks,

Elizabeth

A Year of Running

It was end of November 2015 when I walked into the office for one of my half days and Adam Shearer was pitching the idea of getting a group of Bellhops employees to run in the Chattanooga Half Marathon. I said I was in! I had no idea I would be embarking on a journey that God would use to inspire so many people. He is always one step ahead of us. It is almost funny when I look back at my life and you can just see God’s fingerprints all over it. If I hadn’t walked in at that exact second, I may have not even started running.

About a year ago today (December 2, 2015), I posted my first Strava entry. For those who don’t know about Strava, it tracks all the data on your runs—elevation gain, time spent running, mileage, etc. (you can also use if for bikes, but I don’t bike). Here it was:

3 miles at an 8:39/mi pace and I’m sure my heart was about to explode. If I remember correctly, I think I even had to stop a couple times just to rest.

This past year, here are the numbers, Moneyball style:

Distance: 1,286 miles

Runs: 216

Elevation Gain: 141,325 feet (that is equivalent to running up and down about Mt. Everest 4.75 times)

Time Spent Running: 190h 21min

Races: 8k, 10k, 15k, 10.2 miler, 2 half marathons, 2 50ks, and an attempted 50 miler.

I wish I had some storybook ending to my first year of running. A run through the Marin Headlands and Muir Woods would have been the perfect ending to a great year of running. If it went MY way, I would have come back with a finisher’s medal and stories to tell about the ups and downs of my first 50 miler… but God had a different plan. I had two partial seizures at miles 13 and 18.

I felt great until I had the first partial seizure. Then I gave a runner (later identified as Erik Wilde) my RoadID (thanks Leigh!) because my head and eyes were twitching and I couldn't talk and pulled out my medicine bag and pointed to the two meds that I take when I have a seizure. He told me I didn't look so good and I should probably sit down. I pointed that I was going to keep running and made it another 6 miles before the cardiac aid station before it happened again. At this point, I was out of meds and decided I didn’t want to have a full on grand mal in the middle of the woods where it would have been a bad situation. So I decided the best thing for me to do was to drop. 

Not finishing a race (DNFing) is a very humbling experience. Your pride is shot. I truly think things happen for a reason, and our pastor, Scott Bowen, in a sermon about a month ago, spoke about replacing one idol for another. I didn’t realize it, but I was replacing my workaholic mentality with running. Running was becoming who I was. I wasn’t running because I just enjoyed it anymore (well i still enjoy it). I was running because it defined who I was becoming. I was “the guy from Bellhops who was a ultra marathon runner”.

There is nothing wrong with doing your best and trying to improve upon a time, but I have to remember to keep my priorities in the correct order, and running was creeping up there. I need to get back to being grateful to be able to run and not forget God has given me a gift by allowing me to run.

I really want to thank Bellhops for allowing me to do what I love. The majority of these miles were logged when I should have been at work, but they have been so flexible with me. They have been so amazing to our family, I can’t even begin to explain. I know I always say that, but it is the truth. I also want to thank my incredible wife, Liz, because I know I made her nervous for every minute of those 190 hours and 21 minutes when I was running and for taking care of Jack when I am out on the trails.  

Thank you to Erik for being a literal angel on the trail, and thank you for all who continue to pray for me and my family. Continue praying for us as we go in for an MRI on December 13th. Please pray that these partial seizures are a good thing, and are due to inflammation from the tumor breaking apart.

Here are some pics from the trip and one of me and my trail angel, Erik!

Erik and I after my first partial seizure

Pre-seizure. When I was feeling good and moving!

Liz and I off highway 1!

Mom, Hannah, and me at the Golden Gate Bridge!

Much Love,

Nathan 

Dear Jack

When my journey with glioblastoma first started, I wasn't sure how long God allow me to be on this earth. So, amongst other things, I started writing. Mainly because that was the easiest way to get my thoughts out.

I wanted to do something special for Jack, I did (and am still doing) the youtube channel, but I wanted something he could physically have and hold. So, I decided to write him a book. It was originally just going to be stored on my computer to be viewed by him later, but I started thinking that if this book could just help one other person with any struggles/work life balance issues they may be going through, then it would be worth looking into publishing it.

That is how Dear Jack: Life Lessons from a Brain Tumor Patient to his Two Year Old Son was born.

Dear Jack is written for my son, but all parents can benefit from the life lessons this book teaches. Dear Jack encourages a Christian lifestyle while making parents think about a healthy work-life balance. Parents can use the lessons learned through my personal story to avoid future pitfalls of misplaced priorities.

It is also available on Amazon as a paperback, hardcover, and kindle edition, iBooks as an e-book, and barnesandnoble.com as a paperback or hardcover.

Much Love,

Nathan

The StumpJump

Hey!

I just wanted to give everyone an update on where I am at—both physically and mentally. I am actually doing pretty well in both departments, despite occasional headaches and forgetfulness. This is the best I have felt, physically, in my life.

As most of you already know, I completed the StumpJump 50k (actually it was around 32.9 miles instead of the standard 31 miles) a couple weekends ago. The StumpJump is a trail race with close to 6,000 feet of elevation gain and about 12,000 feet of elevation change. It was a true test both physically and mentally. There were times towards the end when it became all mental. Thoughts raced through my mind, "I want to stop", "I am ok with top 30", "I'll just rest and let a few people pass me". But I wouldn't give in to any of those thoughts. If there is anything I've learned through this whole journey, it is how to be mentally 'strong'. I may not remember where the cups are in my house, but when it comes to being mentally 'strong', I've got that in spades.

Did it hurt? Absolutely, but I put my body to the ultimate test and came out stronger for doing it and am planning on running my first 50 miler this December 3.

The main reason I wanted to write this blog is because of a quote from book I recently read. Dean Karnazes is talking in his book, Ultramarathon Man, about recovering from his first 50 miler:

"As I limped around the office trying to appear natural, I reminded myself that pain and suffering are often the catalysts for life's most profound lessons." 

A good family friend who lost a battle with cancer, Lee Scruggs, had a saying, "we all walk with a limp". Don't we all try to appear natural even though there is stuff going on in our lives that we aren't willing to talk about? I would encourage everyone to get together with a small group of people to discuss the limps in your life. I have done this with a group of guys at Bellhops and it just helps to talk about your own limps and shortcomings—even if it feels like you are just venting.

Karnazes also mentions that through pain and suffering we are often taught profound lessons, and I couldn't agree more. God uses suffering in our lives to teach us. We may not understand the lesson, but I assure you that if you trust Him (something I constantly struggle with), we will come out on the stronger on the other end.

I have another MRI scan next week (Oct. 18), so please keep our family in your thoughts and prayers.

Here are some pics from the race, courtesy of my amazing sister:

Jack and I finishing together!

The fam

My momma

Debbie and Dad

My sis and I!

Much Love,

Nathan

Alinea

What's up everyone!

We got back from UAB last Friday, where we had another MRI. The treatment continues to hold the tumor in a stable state, which is great news! This was a big MRI because it showed that the infusion alone is keeping it stable.

It may be my generation (or that I am generally impatient), but I am ready for the tumor to either start shrinking or progressing—preferably the former. What is that quote from Shawshank Redemption? "You either get busy living or get busy dying". It is morbid thing to say, but that is kinda how I feel. I have to learn to trust God's timing. Sitting still has never been my strong suit. After everything I have gone through, this is the thing I continue to struggle with the most. It so much easier to say it than do it. Trust in God. Trust in God. I can say it all day. I can say it to other people no problem (well, when I can talk ; ) ), but when it comes down to it, am I really trusting God? I don't think so. I am trying, but I am doing a poor job.

I can definitely tell God is trying to make me sit still, because he has stripped me of the one thing that brings me joy—running. I went to the doctor and long story short, I have a Morton's Neuroma. I got a cortisone shot today, so hopefully I can get a few more long training runs in before my first 50k on Oct. 1, but it has really bummed me out (my wife can attest to this, as I am miserable when I can't run). This is definitely God saying to sit still and couldn't be worse timing, but I have no choice in the matter now—he is in control and knows exactly what he is doing.

In a search to find something to do that doesn't involve running, I went fly-fishing (one of the few things I can do) with a friend of mine, Jared Houghton, who told me this crazy story of how he and another one of my friends, Travis Truett, met this guy named Nick Kokonas (the co-owner of this 3-star michelin—the highest rating— restaurant called Alinea) at a party. Long story short, they had no idea who this guy was, and he invited them to have drinks at his restaurant. Jared and Travis were talking about how we had this restaurant in Chattanooga that had the best fried chicken. Not knowing they were in a 3-star michelin restaurant, Nick went back and stopped the kitchen and had them make fried chicken... Needless to say, Jared said it was the best fried chicken he had ever put in his mouth. Eventually, they found out this place was the first episode on this Netflix's show Chef's Table - Season 2. Crazy.

My mom was in town this weekend and she loves cooking shows. I told her about the insane story Jared told me, so we decided to watch that episode. It tells the story of the chef, Grant, and his rise to success—all the awards, the recognition, etc. That is when the story line flips. He had a spot on his tongue that he went to see the doctor about. Cancer. They gave him a 2 month prognosis. He chose to live out his life without going through all the surgery, etc. The story of Grant's cancer, because of him being a world renowned chef, eventually became public knowledge. He was contacted by University of Chicago Medical Center, where he was talked into doing a phase 1 clinical trial (sound familiar?). As he began treatment, he slowly began to lose his taste until it was completely gone (think about all the symptoms I have). The chef who couldn't taste. He had to think of new system of how to get across a certain taste to his staff of cooks. It made him more cerebral, more creative. It forced him to think about things in a different way. This became the "new normal", and he accepted it. At the end of the episode, you learn that he is cancer free. He starts to taste sugar again.. then he starts to taste salt, until he regains all his taste!

My mom and I just sat back and didn't talk after it was over. We are both processors and just had to take time to process what we just watched. I couldn't think of a better message for me to hear. It gave me a hope that I have been longing for—that the tumor will shrink and these symptoms I am having will eventually go away. Maybe God put a neuroma in my foot just so I could go fishing with Jared, hear that story, which would prompt my mom and me to watch that episode. It would be just like God to take a painful neuroma and turn it into a message for me to hear. Nothing in this world is a coincidence.

Thank you for all of those who continue to pray for my family and me! They are working in ways we never expected.

Much Love,
Nathan

Alinea

Locked In My Own Head

Hey everyone!

I wanted to give a quick update about our last two trips to Birmingham:

We headed down to UAB on Tuesday, July 26 to stay at our hotel for our early morning infusion on the 27th. I had some new symptoms that I was worried about—random hand tremors, some depression (despite all the running I have been doing to negate this), short-term memory loss and word finding issues to the point where I literally can not speak. Dr. Saleh said he was 99% sure this was all from the treatment, since I wasn't having any headaches or neurological problems (seizures, right side of the body weaknesses, etc.), but he ordered us to stay another night and get an MRI just to see what was going on under the hood. We proceeded with the scheduled infusion.

The good news that came out of that MRI is the tumor continues to remain stable, so more than likely these new symptoms are from the treatment—yay!

Which brings us to our most recent trip:

We loaded up the car again on August 9th to head down for our infusion appointment on the 10th. Poor Elizabeth was battling a fever and cold. I felt so bad that I told her I could find someone else to take me, but she insisted she wanted to be there for me :) .

At this point, the symptoms I mentioned above have only gotten worse since the July 27th infusion, and Dr. Saleh noticed. He was worried about me and said they could talk to the drug sponsor to see if I could take a break. I said we can re-evaluate come next time, but I would go ahead with the infusion.

I can feel my circle of friends getting smaller and smaller, simply because I am embarrassed that I can't speak sometimes. I am scared of going into work because I may encounter someone who doesn't know what is going on when I have trouble speaking.

For example, one of my fraternity brother's has a podcast, and he asked me to come on and talk about how I grew a team of two to a team of around fifty—mainly on how I coached up a successful crew of millennials for Bellhops. I walked into his office and tried to get out words. I couldn't speak. I knew what I wanted to say, I just couldn't say it. I had to send him a text (with him right in front of me) that I couldn't speak. Talk about embarrassing. He of course understood, but words can't express how frustrating these symptoms are for Liz and I both—her being helpless to the situation and having to watch her once quick on the feet husband diminished to this. These 'episodes' usually last for like 20-30 min, but have been getting longer and longer.

Just today, I was trying to make some keto-friendly brownies and couldn't follow simple directions. I kept having to go back and read from the beginning because I forgot the first step. I finally gave up and went to my room. As I was writing this, I had to think long and hard about how to spell the word fifty.

Sorry, I know I'm venting, but I needed it.

So, I asked Dr. Saleh, while we were in Birmingham, if these symptoms will go away. His response was honest. They don't know. Even in the best case scenario and the tumor shrinks to nothing, he said they really don't know. I guess that's my job :) .

My morning trail run spot - Edward's Point. This is a special place where I can be in the present and enjoy all of God's creation without having to speak.

Thank you to all those who continue to pray for our family. As you can tell, they are much needed right now.

Much Love,

Nathan

A Strong Why Can Endure Any How

Quick Update:

Elizabeth, Debbie, my Dad and I are currently on a plane bound for Sonoma, CA, where my Dad and I will be attempting the Napa to Sonoma half-marathon! Hannah and Cal will be meeting us out here Friday, where we will all be getting some much needed R&R!

We have been to B-ham twice since the last update, so I will quickly recap both:

• My Dad picked up Liz and me in Chatt and drove us down to give Liz a break from driving, which she throughly enjoyed. We received our MRI results back and the tumor remained stable and maybe even decreased in size! Yay! Finally some good news. After my MRI results, they gave me the minimum dose (1/3 of the optimal dose) of the oral pill (Epacadostat), since any dose less than that would essentially be doing nothing. I had about 1/3 as bad of a reaction, so they decided to take me off of the pill for good.

• This past Monday (6/11), Liz and I just drove down for the day for the infusion only. Praise the Lord there were no side effects from the Nivolumab, besides a mild headache! We will really see how the Nivolumab by itself is working when I get my next MRI the first week of September.

Now, I have to mention Liz for a second. I know I have said she has been my rock of stability through all of this, but what does that even mean? She continues to be an amazing Mom and wife through all of this. When I am not feeling well and have to lay down, she never hesitates to say “go lay down! I’ll take care of Jack”—not to mention she is having to deal with the anxious thoughts of me possibly passing away, which I maintain is harder than the position I am in. She never complains when I ask her to drive me somewhere and I take that for granted. It is obviously hard to rely on someone else for transportation, but you don’t think about the person having to drive me around town—and I am a terrible backseat driver! I am in constant awe of how she continues to handle a really bad situation. I love you Liz.

Which brings me to a little devotional:

Everyone is going through some sort of suffering in their life, whether it be an illness, a broken relationship, unexpectedly becoming a caregiver, money problems—it is all relative to that specific person, and they have a choice of how to deal with it.

My mom steered me towards a book written by Viktor Frankl, a holocaust survivor, called Man’s Search For Meaning, that discusses how we handle suffering. Suffering in and of itself is meaningless. We give our suffering meaning by the way we respond to it. 

Let me explain using a great example from Frankl’s book:

In Frankl’s book, he discusses his time in a concentration camp and how he made it out alive. Frankl describes a man who he is in Auschwitz with. This man is the essence of worldly success. He has a great job, multiple degrees, and respect from his peers. He is then taken by the Nazi’s to a concentration camp, where he is stripped of everything—his dignity, job, degrees, all that he has worked his entire life for. This man, whose self-esteem had been so wrapped up in worldly possessions, would go on to die. He would no longer be able to get back to the social class that he was in before he became a prisoner. In short he was humiliated. It was how he handled the suffering that killed him—not the lack of food or lack of medicine.

Frankl argues that we are never left with nothing as long as we retain the freedom to choose how we respond to adversity. In the example above, the man chose to respond by essentially rolling over and losing hope. He put all his weight and hope in how the world perceived him, and once that was gone, it killed him.

I love this quote:

“We have come to know man as he really is. After all, man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those gas chambers upright, with the Lord's Prayer or the Shema Yisrael on his lips.”

—Harold S. Kushner

So what does this mean?? If we put our hope in God and trust that He has a reason for our suffering, we will survive—maybe not on Earth, but where God has gone before us and prepared a room in heaven to spend eternity in. If we truly believe in eternal life, then why do we put so much stock in this life? Remove work or financial security from your life. Who are you now? 

It’s like a being young NBA prospect who has a great high-school career. Every one is his 'best friend'… until he doesn’t make the NBA. Unless he has a great relationship with God, his identity is going to be so wrapped up in being the next Michael Jordan that he fails to see the big picture. Everyone that was his ‘friend’ has now vanished. If he doesn't have that relationship with the Lord, he is going to fail to see there is a life away from this one—a life that is better. And if he could see how God is going to use his failure to make it to the NBA to mold him to be more like Him, he would want it to happen too.

To sum it all up, what Frankl is trying to say is, putting our hope in our eternal future is something no one can strip away from us. So, why are we so scared of death or failure? The way I see it, we are here on Earth for a brief period of time to love God, love others and make disciples—that is all we are called to do.

Thank you to all of those who continue to keep our family in your thoughts and prayers!

Much Love,

Nathan

Beautiful pic of the Goodspeed Trail to Mt. Hood Summit. This is on my running short list while I am here! Short little 6.6 mile out and back.